Turning empathy into action

Alzheimer's and the Dance of the Seven Veils

2011-06-21T03:35:00.005-05:00

It was a sentimental and necessary journey. I wanted to go back to the Alzheimer’s facility where my dad-in-law, Pepaw, had resided for nine months until he passed away in mid-May. I had learned so much more about Alzheimer’s and had fallen in love with the residents and staff, and I know it’s just where I need to be sometimes, like yesterday … to learn and live some more.

I joke with the staff that it’s weird not getting calls anymore announcing Pepaw’s latest escapades, “Guess what he’s doing now …” I walk the halls, talk to residents, and show them some of my toys like little colorful whirligigs, or pinwheels, and my purple tambourine. I never know when I’m going to need the latter, just in case I get crazy enough to lead a sing-a-long, a wild and wacky thing I’ve picked up from stroke camp.

I enter the activities room where eight women sit in silence after the conclusion of the afternoon game. They’re not sure what to do with themselves, and I’m not sure what to do with myself, so, hey, why not see what we can or cannot do together.

I pull out my tambourine and take the empty seat at the long table.

“So, what are we going to do now?” I ask.

“I was just thinking,” says the first, “why are we all sitting here?”

“What kind of songs do you all like?” I ask.

“Do what?”

“Songs. What kind of songs do you like to sing?”

Silence. Hmm, I didn’t phrase that right to get the response I needed. I needed to be much more specific. Suddenly, the second woman says there are song sheets in the drawer. I check, but nothing. The first asks if it’s snack time.

I try to redirect them. “What can we do, ladies?”

A third tries to tell us something, but she can’t find the words. I give her a few moments and then must keep the conversation going or I’ll lose them.

As I point to the tambourine, I ask, “Do any of you play musical instruments?”

Several say no, and the first asks, “Are we supposed to?” Confusion clouds her face.

“Oh, no, I just wondered.” This reassures her that she hasn’t forgotten anything. The relief is immediate.

“I played the accordion,” says the fourth.

For several minutes we are treated to an extraordinary story of her adventures playing with an all-accordion marching band in California when she was in high school. She describes how heavy that instrument was and the many practices she attended.

“How much do those things weigh?” the third asks.

“They weighed quite a bit, but I don’t know,” says the former marcher. “It was all I could carry.” She tells of how they marched on Hollywood Boulevard one day, and she tripped on something in the road.

A chorus of “oh no!” fills the room. She laughs as she describes herself as a frog on her belly floundering in the street on top of that accordion.

“Did it break the accordion?” I ask.

“It had to be repaired.”

“What kind of shape were you in?” the first inquires.

“I was stiff and sore and hurt muscles.”

“You had to carry that a long way, didn’t you?” the first asks.

“You had to have strong arms,” the player says, naming her band director from so many decades ago.

I tell them that I played saxophone in junior high and also marched, but my instrument was nowhere near the size and weight of hers.

The first looks at me and my tambourine.

“Play that thing.”

“What should we play?” I ask the group, four of whom haven’t said a word. I tap the drumhead as the metal rings clang against each other.

“I love those things,” says the first.

I offer it to number two, sitting to my right. “Give us a melody.”

“I’ve got no rhythm.”

“That’s okay.”

She taps it lightly, and then I can see that the first one across from us really wants to try it. We push it toward her. She immediately picks it up and shakes and hits it like an old pro and starts to move in her seat. We all laugh with her as she proclaims, “It’s the Dance of the Seven Veils,” and shakes her upper body more and picks up the beat.

The accordion player asks what the instrument is, and I explain it’s the tambourine. The first, the seven veils lady, looks at me from head to foot and says it’s purple just like my shirt and my shoes. Everyone peeks under the table to see my purple shoes, and the “oohs” and “aahs” begin.

Suddenly, number one starts beating the instrument and singing, “Roll Out the Barrel.” This clicks instantly with the accordion player who joins her. I jump in, and we sing the first two lines before we realize none of us could remember any more lyrics. It doesn’t matter as we smile, laugh and pass around the tambourine. The fifth woman explores every inch of it, particularly the metal jingles.

This continues until an aide announces that snacks are available in the dining room. We joke about whether we should have a congo line on the way! Maybe tomorrow!

Forget the stereotypes of “little old ladies” with Alzheimer’s sitting around and passively listening to Lawrence Welk. They really wanna dance and roll out the barrel … but only after their snacks!

Excuse me, but I have some lyrics to memorize before my next visit …

Roll out the barrel, we’ll have a barrel of fun
Roll out the barrel, we’ve got the blues on the run
Zing boom tararrel, ring out a song of good cheer
Now’s the time to roll the barrel, for the gang’s all here!

Ms. Monica goes to Springfield - pt 1

2011-04-07T04:07:00.005-05:00

Ms. Monica goes to Springfield.

In a few hours, I’m climbing aboard the bus when it leaves Peoria for Springfield as I accompany a group of like-minded citizens who are determined to educate our Illinois state senators and representatives on the horrific toll that Alzheimer’s is taking upon our public and private worlds.

It’s hard, since I am rather verbose, but I’m limiting myself to two personal stories to share with them. I’ll put it in writing along with some photos so they can see the dear friend I lost and the dad-in-law I’m losing to this cruel disease …

Dear friend in Springfield,

This is the only photo I have of my dear friend, Molly, and me together. She’s the beautiful lady standing between her husband and son with her daughter on the far left.

You would have loved Molly, the retired public school kindergarten teacher who gave many a youngster the love and attention they needed at such a precious age. She was also the ultimate wife, mom and grandma who was forced into early retirement because Alzheimer’s came knocking on her door. With a devastated heart, she accepted the responsibility and challenge of caring for her husband, Joe, the love of her life.

Unfortunately, Alzheimer’s has claimed two members of this incredible family. Joe has the disease and resides in a nursing home. He is oblivious to the ultimate sacrifice his beloved wife made for him, as the relentless challenges of caregiving destroyed Molly’s health and unexpectedly ended her life on January 9, 2010, not even three months after she had to place him in an Alzheimer’s unit, a decision that broke her heart after the physical demands had broken her body.

Their daughter, Margy, also wants to share this important message with you:

My Dad, Joe, suffers from Alzheimer’s disease. Last year, my family lost its key player, my Mom, Molly. She was with my Dad from his diagnosis 10 years ago until his placement in a nursing home. She cared for him through his decline and ultimately gave her life for him. The loss of my Mom has deeply impacted the lives of my family as well as the lives she touched through her role as an advocate for those suffering from dementia.

Molly was an active participant in caregiver support groups and education for families provided through our local Alzheimer’s Association, Central Illinois Chapter. She believed education was power and dedicated herself to caring for Joe and supporting others in the same situation. Her life and death speaks volumes for the need of our Alzheimer’s Association and the services they provide to our area families. So, now, as my Dad’s caretaker, I urge you to support the tremendous work of our Alzheimer’s Association. Please help them continue to provide the counseling, education and support that is so greatly needed by those suffering from dementia and by those, like me, who have the daunting task as caretakers.

Even more than a year after Molly’s passing, Margy and I still get teary-eyed when we talk about this fun, feisty woman because we loved her so much. It’s not right, it’s not fair that the compassionate act of caregiving killed her. Alzheimer’s caregiving is destroying the health of millions more caregivers who are doing their best to care for their loved ones who cannot be left unattended because of the danger they present to themselves and others as Alzheimer’s destroys the brain’s capacity for common sense and self-care.

While still grieving the loss of Molly last spring, I took on the unexpected challenge of caring for my father-in-law, who was diagnosed with Alzheimer’s after we had to move him here from Florida to care for him. Pepaw’s decline was both exhausting and frightening as he nearly started fires from smoking and threatened to have my husband and I arrested for stealing his truck and money.

His rapid fall into the grips of Alzheimer’s created the biggest crisis of my 31-year marriage and threatened my own health as I lost countless hours of sleep worrying about him and making sure he was not a danger to himself and others. This easy-going man turned angry and threatened people and lost all ability to reason. We had no choice but to seek an immediate opening in a secure Alzheimer’s unit, the closest of which was nearly an hour and a half away from us, here in Springfield.

I cried when I had to leave him there that day last August as the guilt and unjustified sense of failure was overwhelming. I’ve cried many more days and nights since then as Pepaw’s health continues a rapid decline, the latest setback a broken hip in February. He no longer knows my name though seems to know I’m somebody he can trust, something for which I’m grateful as I spent most of one night in the emergency room with him just a few weeks ago. I cry even more as I watch this man’s lifetime of hard-earned money slip away to cover his 24/7 care.

You, as our friend in Springfield, are being urged to consider the physical, emotional and financial toll Alzheimer’s is taking upon your citizens, your families, your friends. The numbers afflicted by this nightmarish disease is growing every year and promises to be a public health epidemic nationwide and in our neighborhoods as it overwhelms our healthcare system and saps the energy and lives of family caregivers.

These are but a few of the faces of this cruel disease. Molly, Joe and Pepaw can’t be here today, but I am, asking you to devote the funds and legislation necessary to care for Illinois families ambushed by Alzheimer’s, because the cost will be even greater tomorrow if we do not plan and act today. Consider the priority of compassion as you wrestle with the state’s financial challenges ahead.

Monica Vest Wheeler
Peoria, Illinois

We can only promise to keep them safe

2011-03-10T02:32:00.002-06:00

A note to a dear friend who's witnessing the cruel decline of her mother to Alzheimer's …

Hey sweetie, just saw your message about your mom and how this damn disease is continuing to steal the essence of that wonderful woman. I've long hoped that this horrific day would never come when you have to accept the very sad truth that she needs more care than you can provide directly for her anymore. I can only imagine how heartbroken you are at this moment, but YOU have done everything for your mom by giving her an abundance of love, countless hours of interaction and stimulation, and unparalleled compassion. You should NEVER feel any guilt today or tomorrow as YOU now make the best decision possible to keep her safe and comfortable.

YOU have honored an unspoken commitment and bond between parent and child to take care of your mom in her many hours of need in recent years. No one knows her better than YOU, and the heck with all those so-called family members who have abandoned YOU and your mom. They have no idea what precious moments they have lost forever because of their selfishness and lack of sensitivity. YOU have the memories of her laughter and song to savor forever. YOU have bestowed upon your mom the gift of a lifetime, giving her an incredible quality of life as she enters this final chapter of her life.

I will always remember your hugs of comfort and support when I started caring for my dad-in-law last spring. You were always asking about Pepaw and were so very kind and sweet the few times you met him in person. And we both know that, because of Alzheimer's, I could only make one promise to Pepaw: to keep him safe and comfortable throughout the ugliest moments of this terrible ordeal.

This is the same promise you've made to your mom.

I made a commitment to Pepaw to protect him, even though he was mad as hell at me for placing him in a secure environment. He may be a skinny little guy, but when I had to leave him, his shouts and pounding fist on that door rattled a part of me that I never knew existed, and it hurt so much, so very much.

Your mom may not even say a word when you have to leave her for the first time, but you're gonna feel that same painful shuddering so deep within you that you're positive in that moment that you'll never stop crying and certainly will never forgive yourself.

Sweetie, I promise you that the tears WILL slow, and you WILL forgive yourself for being human. You WILL be able to sleep again at night knowing that someone is keeping an eye on her and that she'll get the care she needs anytime day or night. You have carried her with warm and open arms for several years, and you need a break … because you are human.

Let me assure you that your mom WILL benefit from consistency in a care facility. Even as this damn disease continues to destroy Pepaw, he eats and sleeps better than before. Yes, you know we've had some adventures with him in recent months, but I am able to sleep again knowing that he's not angry or frightened anymore. My heart tells me he knows in his own way that he's in a safe environment with people who love him. He may forget, but he's not forgotten.

I have so admired how much of YOURSELF that you've given your mom. Now's the time to remember that Alzheimer's may steal her body but NEVER her feisty and free spirit that will always inhabit a huge chunk of your heart and soul. And don't forget what we've learned during this journey so far: we are their memories, we continue to tell their stories, we need to work harder than ever to make sure that not one more family has to endure the pain we share.

I embrace your courage. I am lifted by your love. I am so inspired by this beautiful human being that only YOUR mom could have created … YOU.

Much love and many hugs,
Monica

Stroke: “They want a sentence and no more”

2011-02-20T02:32:00.001-06:00

In recent weeks, I've immersed myself in the heavy editing stage of my new book on coping with strokes. I can hear the voices of all the survivors and caregivers with whom I've interacted. I can see their expressive eyes revealing the tragedy of this brutal brain attack, and the joy of conquering challenges that the rest of us take for granted. I keep reading certain passages as I relive those moments when their hearts overflowed with sorrow or their souls wept with pain at how stroke has decimated their world.

I'll always remember the wife who spoke for her husband, who sat in silence next to her. He fully understood every word she confessed, though he could not convey them himself because of severe aphasia that had robbed him of his ability to speak more than a few words or engage in plain old conversations. I had asked her what she wanted the world to know about strokes. And she told it like it is:

“I want people to be more understanding. I have girlfriends, we don’t have couples. They think you can just pick up and go, but you can’t. I also find, too, that they don’t want me to talk about it. They’ll ask, ’How’s Al?’ They want a sentence and no more. That hurts so much. I’ll listen to what they have to say, but they don’t want to hear what I have to say. I’ve gotten to the point where, ’He’s fine.’ ”

My heart aches every time I revisit those words. It's a cry for one of the most basic human interactions, the act of being heard. We need to talk. We need to listen. It's a continuous circle of communication that educates and engages us in everyday life.

So many individuals have taught me the beauty of the art of listening. It takes patience and time, but it is worth every second because it enriches your mind and soul. If we truly want to be heard, we must take our turn at listening. How else will we know what to ask and answer?

If you're going to ask somebody, "How are you doing?" then say it like you mean it, and be prepared to hear their response. I've met the most fascinating strangers that way, and now they're my friends. When I ask, I mean it because I know the answer will enlighten, educate and/or entertain me.

All stroke survivors and caregivers ask is that you give them the precious gift of a few minutes to find out how they're REALLY doing. You might be the one who transforms their day in a positive way and lifts your own at the same time.

I'll end with the famous welcoming words of TV's Frasier Crane, "Hello, I'm listening …"

Sick of politicians, protocols, policies and payoffs

2011-02-18T04:58:00.007-06:00

I've overdosed on catching up on news. Words are uncontrollably jumping out of my fingers as I type …

The headlines out of American government and corporate America are pretty damn depressing nowadays. Millions of folks are suffering from the greed of circles of so-called human beings who must have been born without a conscience. That's the only explanation I can fathom.

Our most innocent citizens are at risk of losing billions of dollars in assistance, help they genuinely need through vast, complicated networks of social and governmental agencies. Millions of American families are truly in crisis, weighted down by circumstances beyond their control. As a nation, we are on the verge of a collapse far more catastrophic than we can imagine, far more deadly and costly than we can begin to calculate.

We're teetering precariously on a cliff, and the branches of our tree of life, to which we cling, are being snapped off one by one in our panicked grasp.

So many of our elected officials and bureaucrats who have immersed themselves so deeply within the tangled web of government don't get it. Sometimes, this being one of those moments, I don't think they want to get it, because it IS scary in the real world. I am so disillusioned with both the donkeys and elephants in charge that I'm leaning toward lumping them all into the jackass category.

While there are many wonderful, ordinary people who work for our government, I'm sick of those politicians, protocols, policies and payoffs that reek of selfishness, contempt for the law, disregard for folks who pay their salaries, and wretched inhumanity. I'm tired of common decency taking a backseat to over-stuffed egos.

I'm tired of nearly everybody blaming everyone else and taking no responsibility for anything, and of white collar criminals who get a slap on the hand, if that much, for unconscionable greed and theft. I feel nauseous when those in control ignore pleas for reform and accountability — after running on that very same platform — and go about parading in front of the media and say they care for us Americans more than the other party. What a pile of crap that grows and stinks more every day.

If we are to survive as a nation, Americans will have to establish the priorities for our country themselves. The bulk of government leaders prove to us every day that they don't understand OUR priorities, OUR wishes, OUR dreams, OUR hopes. We're being told that we, THE people, are ignorant of the financial hardships our governmental bodies are experiencing. Yep, we don't understand the complexities of budgeting, etc.

Well, you know what, WE have to live within our means and budgets, and WE'VE been telling government leaders for decades to do the same. Look at that snowball starting to trample us now.

We have millions of American families that are being destroyed by Alzheimer's, and that number is climbing every day. We have millions of families devastated by brain injuries and strokes. We have millions more of Americans who suffer from depression and mental illness and how those tear even more families apart. And that doesn't even include the countless other health and societal issues we face every day.

If our families continue to disintegrate, no matter the cause or reason, then the very thread of America will start to unravel. Americans are willing to make sacrifices, and are doing so right now, but are the people who are ensconced in and gorge themselves off our government ready to do the same? Duh, I doubt it.

Speak up, folks, demand that wasteful spending end TODAY. Demand that political pressure, gloating, power, perks, threats and lies end TODAY. Demand that government redo its list of national priorities and put everyday ordinary people on the top TODAY. Demand that the compassion and common sense of the masses infiltrates all of our leadership TODAY.

Now, if I offend someone whose livelihood is made off a government program that funds the study of bear dung, tough shit. If I offend someone whose government job it is to determine whether tomatoes are really a fruit or vegetable, bite me. And if I offend someone who's received a government grant to study the social ramifications of "Gone With the Wind," frankly my dear, I don't give a damn.

Okay, my fingers feel better now. I will not OD on news ever again!

Pepaw's new ride - part 2 conclusion

2011-02-15T04:05:00.012-06:00

The rest of the story after my first visit to my dad-in-law after his broken hip …

I was so impressed that Pepaw had sat up by himself, and so shortly after he had honestly proclaimed a lot of pain from his reconstructed hip. I sat on his left side, awaiting the return of the CNAs when he suddenly announced:

"I gotta pee."

No way was I taking any risk in helping him up to go to the bathroom, even if I could get him into the wheelchair a few inches away from us. I had to make sure he wouldn't try to get up on his own.

"The nurse will be back in a few minutes, and she'll help you go to the bathroom."

"Okay."

He looked at the suitcase in the corner of his room, where it had been moved from near the doorway. He had packed it that first week, waiting to be taken home to Tennessee where he was sure his family was waiting for him. We had unpacked it once, only to have him fill it again, so we didn't mess with it again. If he wanted it that way, that's the way it would remain.

"My medicine's in there," he said.

"Oh, it is?" I knew better but would go along.

"Can't get into it over there."

"That's okay. The nurse will take care of the medicine for you."

My right hand began to rub his back, and I think it comforted me more than him.

"I need to see a doctor."

"What for?"

"My leg." He tapped his right thigh. "I think I need a shot."

"Well, the doctor ordered the medicine the nurse is bringing. Shall we see if that works first? If it doesn't help, we'll call the doctor for you."

"Okay."

Wordlessly, I continued to rub his back. I searched every memory of interaction with my dad-in-law in the 36-plus years I had known him, and I can't ever remember doing this. I had always been closer to my mom-in-law and the girls, and of course had hugged Pepaw through the years, but this physical contact made me feel closer to him than ever before. Part of me wanted to just rest my head on his shoulder and make all his pain go away …

The door opened to reveal the return of the two CNAs.

"He sat up on his own and needs to go to the bathroom." I let go and got out of the way so they could take care of him. They eased him into the wheelchair and asked if he was still in pain.

"No."

"No pain at all?" the woman asked.

"Nope."

She smiled as she shook her head. Yep, Pepaw and his Alzheimer's. Forgotten already, which is probably a blessing. She said he was scheduled for the pain meds anyway, so it was no problem. The male CNA wheeled him into the bathroom as she prepared to help Pepaw. The man gently touched the back of Pepaw's head and made sure his baseball cap was straight on his thick white mane of hair. A moment later, the nurse came in and gave him his meds, and I thanked her for taking such good care of him as the CNAs carefully closed the bathroom door to give Pepaw some privacy.

After Pepaw finished and I also thanked the CNAs, we wheeled him into the dining room for lunch. I sat next to him in silence as he focused on his hamburger, hash brown triangle and three-bean salad. It wasn't a time to chit-chat. He said nothing the entire meal except for "thank you" when given his plate and iced tea.

I just put myself in observer-mode as I watched those Alzheimer's patients who could still feed themselves and those who could not and needed assistance. No one, including me, was rattled by the woman repeatedly yelling "yi yi yi yi yi!" This was a normal day in the land of Alzheimer's, where these residents were being treated with dignity and compassion.

After Pepaw finished the banana pudding dessert, I asked if he'd like me to give him a ride down the hall. He nodded, and I assumed the reins of the wheelchair. We didn't say anything as I pushed him through the hallways that he had walked hundreds of times already in his endless mission to "ride the rails." This time, he didn't have to stay close to the wall as I guided the wheelchair through the middle of the spacious halls. I smiled at the few residents who were up and walking after lunch, as most remained in the facility's two dining halls completing their meal.

Sadness filled me as I fully comprehended how Pepaw's world had come to a screeching halt when he fell and broke his hip. He always had to be moving to "kill time," to cope in his own way with the horrific disease destroying him cell by cell, even if he didn't comprehend what was happening to him.

I felt myself moving at the steady, frenetic pace he had kept only a week earlier. However, I wasn't grabbing the handrails. My hands stretched to gently grasp his shoulders and the back of the wheelchair to maintain the human touch I needed at that moment.

After three complete rounds of the building's interior, I stopped and moved to the front to ask if he'd like to go watch some "Walker, Texas Ranger" on the TV. It was then that I saw that he was barely awake. The ride had lulled Pepaw to sleep.

"Yeah," he whispered.

I drove him to the TV room and popped in a Walker DVD. His eyelids has won the battle as I told him I'd see him soon and that I loved him. I kissed his right cheek goodbye. I informed the CNAs where he was and told them to have a nice Valentine's Day. They wished me the same.

As I stepped outside into the unseasonably warm winter's day, I felt the need to walk … just walk …

This walk's for you, Pepaw.

Pepaw's new ride - part 1

2011-02-13T04:56:00.008-06:00

No coughing, no sneezing for a couple of days. Now it was safe for me to visit my dad-in-law Saturday.

I wasn't sure what to expect upon seeing Pepaw for the first time after he broke his hip last week and endured a four-day hospital stay. The physical therapy crew and the staff at the Alzheimer's residence assured me he was doing very well after the fall that derailed his obsessive walking routine. His "riding the rails" came to a screeching halt when he stood up that Thursday morning, wobbled a little and landed on his behind and broke his right hip bone because he's so damn skinny. I was but one of the many compassionate folks who offered to given him some of their own excess padding to prevent future breaks …

Entering the main lobby at about 11:40 a.m., I expected to see Pepaw hanging around there in his new wheelchair. Nope, not there. I asked one of the CNA's if he was out and about, and she said to check the back TV room, where he would likely be found watching an episode of "Walker, Texas Ranger," which has been a blessed distraction on many occasions.

I decided to check his room first, and there he was, laying in bed asleep, fully clothed in his traditional garb of jeans, black slip-on shoes, dark T-shirt, my old hooded gray sweatshirt and bright blue baseball cap. His wheelchair was next to the bed. I slipped out and asked the staff if I should go ahead and wake him since it was almost time for lunch. They said they'd appreciate that and would be in shortly to help him into his wheelchair.

I approached him quietly and brushed my hand along his sleeve to slowly awake him. His eyes opened immediately, and he said, "Hi." I returned the greeting with a big smile.

"How are you?" I asked.

"Fine, fine." He blinked. "You have a good trip now, okay?"

I gently laughed. "I just got here."

"Oh, okay."

He was resting at a slight angle with his feet resting at the edge of the side of the bed. I wasn't sure if he could get up on his own and wasn't encouraging any movement until the CNAs arrived.

"Just wait right here. They're going to help you up."

Within seconds, the door opened and a young man and woman came in to greet him. As soon as they started to help him sit up, he shook and yelped in pain.

"No, no, it hurts." He wasn't shouting or angry.

As I winced from the corner of the room, they gently laid him back again.

"You're in pain?" they asked him. "Do you want your pain medication?"

"Yes, yes, please."

They reassured him the nurse would bring it momentarily. I told them I would stay with him while we waited for the meds. They would return shortly.

I asked if he was okay again, and he said he needed to get up. I had barely reached his arm when he sat up on his own. I was impressed, and he didn't utter one sound indicating any pain. I sat on his left side on the edge of the bed as he dangled his legs toward the floor and slightly moved his right foot back and forth.

"How does that feel?"

"Okay."

"Well, you look pretty good considering you broke your right hip. They put a pin in there to make you good as new in a couple of weeks."

"Yeah." He stared straight ahead as he worked his denture-free gums.

"The girls told me to tell you that they love you and miss you." I was eager to hear his response to see if he still remembered them. And he did, reciting the names of his three daughters without hesitation or prompting. "Good, good."

"I gotta pee."

"Okay …"

Continued tomorrow.

Pepaw's unexpected trip

2011-02-05T03:30:00.003-06:00

I'm one of those people who sleeps with their cell phone. It's an annoying, yet necessary, habit that I developed last spring when we brought my dad-in-law, Pepaw, up to Illinois from Florida so my husband and I could care for him and what I suspected was his Alzheimer's.

I got a lot of strange calls from Pepaw at all hours when he got into an angry and paranoid phase last summer. When we had to move him into a secure Alzheimer's facility in August, he was not a happy man. Yep, the staff would call and say, "Well, guess what he's done now …"

Luckily there hadn't been too many Pepaw emergencies in the last couple of months, but I never let that phone slip out of my sight or reach 24/7. His doctor just switched his meds a few weeks ago, and the good news last week was that he had handled the change pretty well. He seemed to be sleeping and eating better.

We're trying very hard to put some weight on him, because at barely 120 pounds, he's burning off everything he eats by his obsessive "riding the rails," or walking continuously inside the residence. He has to touch every railing as he strides endlessly down the long corridors. He's become quite a fixture as he passes the staff and other residents again and again and again …

I had trouble sleeping Wednesday night because I had developed a cough that wouldn't let up and my voice couldn't make up its mind whether it was coming or going. I decided to not turn on my phone alarm Thursday morning because I needed the rest. I don't have time to get sick!

At about quarter 'til 8 that morning, my cell phone rings. Who the heck could it be? My family and friends know I sleep late most mornings, especially recently as I'm on a writing binge to finish the stroke book. I didn't recognize the number and could only muster a raspy "Hello?"

It was the nurse from Pepaw's residence. He had gotten up from a chair in the lobby, apparently became wobbly and fell to the floor on his bottom and complained of pain. They were trying to get the portable x-ray machine to come by so they could make sure he didn't have any broken bones. As his healthcare power-of-attorney, I gave them the go-ahead and asked that they keep me posted. They would.

My coughing returned in a rush. Please God, keep Pepaw healthy because I can't go down there today to care for him. That usual 75-minute drive there after this week's Midwest blizzard was not high on my list of things I wanted to do. I wish he were closer, but this facility was the only opening at the time we needed a place to keep him safe last summer. It was the only thing we could do to adequately protect him, and they treat him so well.

Mid-morning after I went back to bed, the staff called again and said the portable unit was not available, and they needed to take him to the hospital for the x-ray. I again gave the go-ahead with a squeaky and uneven voice and e-mailed Roger on what was happening with his dad. Just pray that nothing is broken!

At 1 p.m., I got the bad news: Pepaw had broken his right hip. "Aw shit!" was all I could utter, followed by another coughing fit. I was given the number for the emergency room and called. After I assured them that I was not the patient with my raspy voice, I asked what could be done for Pepaw. Since he had been so mobile, they would perform surgery to place a pin in his hip. After giving my permission, I wanted to cry when I got off the phone. Poor Pepaw! My heart was breaking for him because they had to use some minor restraints to keep him from climbing off the hospital gurney.

I called Roger and squeaked that he needed to be there with his dad at the hospital because he was likely confused and in a lot of pain, though the hospital staff assured me he was being monitored closely and being given pain medication. Roger said he'd come by and get me and we'd go together.

After I hung up, I realized I was too sick to go to the hospital.

And then I started to cry. Damn! Damn Alzheimer's! Damn stubborn old man who can't sit still for longer than an episode of Walker, Texas Ranger! And damn me for being sick!

The pity party evaporated pretty quickly as I talked with Lisa, one of Roger's sisters after notifying all the siblings. She issued an official order: "Get your butt back in bed or I'll have restraints put on you! GO TO BED!"

Lisa was right. I needed to get well quickly so I could be with Pepaw when he is moved after his hospital stay and continues his therapy. I could not be the caregiver if I didn't take care of myself first. This was the responsible "selfish" decision, the same mantra I give every other caregiver I meet.

When Roger got home, I told him I couldn't go. I was too sick, and there was absolutely nothing I could do for Pepaw now. Even if I wore a goofy mask, I couldn't and shouldn't be anywhere near Pepaw to avoid any risk of infection. Roger could be there with him that evening, and I'd be there in a couple of days.

As I watched him drive away, I did the smart thing and went back to bed. I had to let go of my worries about how Pepaw would adjust to the therapy ahead and whether he was feisty enough to beat this unexpected trip. I couldn't fix him right now, but I could fix me, and that's how I can best help him. I texted Lisa and let her I was staying home.

My phone buzzed a few minutes later with the message, "Good girl!"

And then I shoved my phone under its own pillow so both of us could sleep.

The tears that seem endless - pt 1

2011-01-30T03:22:00.008-06:00

I should have been asleep at midnight or certainly by 2 a.m. this morning, but I was gripped by reading news online about all the tragedies that have taken place in only the first month of this new year. Part of it is the old newshound in me after many years as a reporter and editor and an insatiable thirst for what's going on in the world.

However, today, a greater hunger lurks within me that tries to understand how it seems a greater number of humans teeter precariously between accepting that life is a journey overflowing with predictable and unpredictable hills and valleys … and falling into complete desperation, hopelessness and selfishness without any regard for the tragic consequences of their actions.

Too many children around this country instantly lost their innocence, faith and trust at its most basic human level this week when news erupted of the mother in Florida who confessed to shooting to death her teen son and daughter because they were too "mouthy." The most in-depth thesaurus in the world has no words adequate enough to describe this tragedy. News accounts report that a special "stress team" was brought in to assist the law enforcement officials who discovered and had to deal with this horrific scene.

The photographs of the mother on her way to and from jail are haunting with facial expressions of what are probably total madness at that stage. Was she insane? We have to wonder, how could she not be for firing bullets into her children's brains?

As human observers, we truly mourn the senseless loss of two young lives, two "normal" teens. However, at a deeper level, we should grieve the loss of innocence of a generation of children who will now wonder if their mom or dad would do the same to them. Perhaps therein lies the greater tragedy …

Continued tomorrow … because I need sleep now …

Pepaw's not happy with God - part 2 conclusion

2011-01-19T17:31:00.005-06:00

I had to think fast when Pepaw announced again, “I’m ready to go. Are you?”

“How about we —”

Saved by the doctor. She called my father-in-law’s first name.

“That’s you.” I patted his arm to get his attention and stood quickly to get him on his feet. “She’s right over there.”

She greeted him and asked if he were okay.

“I lost my Bible.” That much he remembered.

“Oh, no,” she said. “Where did you lose it?”

“I don’t know where it went to.”

I reassured him. “We’re going to look for it when we go back.”

“Maybe it’s at the house …” I was relieved that he called the Alzheimer’s residence his home. He needed that. I needed that.

I gave her all the paperwork and explained his trouble sleeping and walking obsessively. I scooted my chair closer to his.

“You’re walking yourself to death, you know that?” I smiled. “You just keep walking and walking and walking.”

“You gotta walk,” he said. “You ain’t got much choice.”

I shook my head. “You’ve also got to make sure you don’t wear yourself out and keep some weight on you. Your jeans and everything are getting all baggy on you.”

“Yep.”

Reviewing his paperwork filled with specific information on his sleeping habits, the doctor said, “He needs to rest.”

“I pray to God to put me to sleep.” Pepaw’s eyes focused on mine.

“I know you do,” I said.

“When I’m in the bed, He don’t put me to sleep.”

“That’s why we’re talking to the doctor.”

He’s in great condition overall with good blood pressure, clear lungs, etc. Not bad for 84 years old and a former lifelong smoker.

I summarize her report for his convenience: “You’re pretty healthy.”

“Yeah.”

After she explains more to me, I interpret that for him: “She’s going to give you something to help you sleep. If you’re going to do all that walking, you need your rest.”

“When God won’t let you sleep some more, that’s a big deal. That’s God’s saying, no, you can’t sleep no more.” He signed. “So, you don’t get sleep no more. And you can’t get any more sleeping pills either.”

“That’s what we’re working on for you. We have to make sure it’s safe. That’s why we always talk to the doctor first.”

“If you got a sleeping pill, you can go to sleep.”

“Sometimes we have to give God a little help here, so that’s why we’re taking care of you.”

I patted his forearm as he studied the doctor. He told her, “You’re doing a lot of writin’.” She smiled.

I explained that doctors have so much paperwork to fill out. All these laws nowadays, you know.

Then he repeated the whole story about his Bible probably being in his bed …

Back “home,” I searched but didn’t find the elusive written word of God. Not in his clothes, the bathroom, closet, chair or bed. His concern mounted.

I had no choice but to get him a new one. Hopefully that would calm him.

In the hallway, I told him I would look somewhere else for his Bible. He nodded and turned away. I let him go. I could hug him next time.

I suddenly realized that he hadn’t called me by my name all day. For an instant I was sad but accepted that he had forgotten it, but not me … yet.

I watched him greet his new buddy. He said, “Me and Monica went to the doctor, but I can’t find my Bible …”

Smiling, I asked the staff about his Bible. They told me it had been left in his clothing and had gone through the washing machine and was pretty much ruined. I told them I’d get him a new one. A few seconds later, from the lobby, I could see and hear Pepaw talking to a nurse, but he couldn’t see me.

“Hey, you got my Bible?”

“No, but we’ll try to help you find it …”

This was definitely a mission from God, so I hurried to the nearest dollar store to find a Bible to tide him over until I could get a nicer one from a bookstore. For any other laundry emergency, I bought two copies and inscribed them to Pepaw from Monica.

After leaving them at the residence for him and on the drive home, I understood why Pepaw was not happy with God. I remembered several things he had said since we started caring for him in late April last year. I recalled his pained expression when he talked about not being able to sleep and having to walk to “kill time.”

It’s not the eight hours a night he’s talking about. He’s cognizant enough to know what this damned Alzheimer’s is doing to him, destroying him bit by bit.

“You ain’t got much choice.” His words this day made even more sense.

Pepaw wants eternal sleep, and he’s frantically walking his way there.

And I couldn’t blame him. Tears momentarily fogged my vision.

“I pray to God to put me to sleep … Where’s my Bible?”

Please, God, help Pepaw find all the passages he seeks.

Pepaw's not happy with God - part 1

2011-01-18T03:50:00.003-06:00

Pepaw is not happy with God right now.

Last week was my dad-in-law’s regular check-up with the doctor who had prescribed the meds to keep him calm. We had to move him into a secure facility last fall to protect him and others when his Alzheimer’s turned him into a very unhappy, unpredictable and angry man. Thanks to the meds, he has been doing much better and is his usual lovable and smooth-talking self again.

The staff at the Alzheimer’s facility had him ready to go when I arrived. I greeted him with a big smile as usual. I had learned not to give him an immediate hug because I didn’t want to scare him, just in case he didn’t remember who I was.

(He doesn’t remember or understand that I’m his daughter-in-law. I’m just some gal who travels with his son. Hmm, that is far more fascinating than a D-I-L …)

Escorting him to my car parked out front, I fastened his seatbelt because he’d been unsure what to do with it in recent months.

“What do you think of all this snow?” I asked him during the short distance to the doctor’s office. “You haven’t seen any for a while, have you?”

“No, not very much.” His voice was low. Did he remember that he hadn’t experienced a northern winter for nearly 20 years? Did he simply wonder where the heck he was?

“Look at the birds,” he said, pointing to the sky, overflowing with winged creatures that hadn’t taken a winter vacation.

“Yes, there are lots of them who put up with the cold weather.” I was just so excited that he had spoken up about something, anything!

“I can’t find my Bible.”

Yay! Another statement!

As I pulled into a parking place, I asked, “You had your Bible in your pocket?”

“I had my Bible someplace. But I can’t find it now. I don’t know where it’s at. I must have left it at home. When I went to bed, I must have left it. It must have come out of my pocket in the bed. It’s the only thing I can figure.”

“We’ll make sure you find it,” I reassure him as we exit the car.

“It has to be that way. I usually have it in my pocket.”

“I know.”

“It could be in my shirt pocket, but it’s not there.” He looked down his front. “It must have come out when I was in the bed.”

“We’re going to look for it when we get back. You’ve got to have that.”

I ushered him to a seat as I checked in with the receptionist.

“The doctor’s gonna examine me?” Pepaw asked.

“Yep.”

Pause.

“Maybe he’ll give me some kind of pill to cure different things.”

“Yep. You feeling okay?”

“It’s sure cold outside.” He said his hunting coat would be a lot warmer. I should have known the thermal sweatshirt wouldn’t be enough, but I was rushed. My fault.

“We gotta wait on the doctor to get here?”

“Yep.” I wonder how many times he’ll ask this time. I thought the last doctor’s visit was a marathon …

I showed him a couple of magazines. He studied the covers. Guess there was nothing of interest to him. That’s okay. Nothing interested me either.

“The doctor’s taking a long time to get here, ain’t he?”

“Yep, it’s always hurry up and wait.”

Two or three minutes passed.

“I don’t want to sit here for an hour,” he said.

“Let’s give her a few more minutes.”

“I’m ready to go. Are you?” He started to lean forward.

I rested my hand on his arm as I quietly repeated, “Let’s give her a few more minutes.”

Pepaw was speaking at full volume in the waiting room. There were several people grinning at us. I nodded and smiled in return.

“I’m ready to go. Are you?” He was in repeat mode.

“Did you get a haircut?” I point to his baseball cap. “Looks nice.”

“Yep.”

Good. Distraction still works well … for a few minutes.

“I’m ready to go. Are you?”

“How about we —”

Continued tomorrow.

Pepaw's Christmas wish - part 4 - conclusion

2010-12-30T13:44:00.002-06:00

Continued from previous entry of Pepaw's Christmas wish - part 3 …

That little Christmas tree lit up Pepaw's room and my heart. This was THE moment I had been waiting and praying for the last three weeks. I was so pleased with myself that I had gotten Pepaw exactly what he wanted for Christmas. I waited for him to give me that special smile that would help erase some of the wounds that this damn Alzheimer's disease had inflicted upon all of us this year.

“Look,” Roger and I said almost together.

“Okay, you gonna get me out of here?”

There was no smile, no glimmering in his eyes, no recognition of this gift. He had only one focus, one mission: to leave, even though he had no specific destination.

Roger repeated the earlier part of the conversation, “I can’t today. I don’t have my car.”

“Get me out of here. I’ve had enough of this stuff.” He wasn't angry or shouting.

I had to try to redirect him again. I asked about dinner, and he said the meat was so stiff he couldn’t stick his fork into it. He demonstrated how he had to cut it with a knife. Then he crammed everything on his chair into the bag of his new gifts. He’s had those toiletries packed since the day we moved him in.

“All that stuff can go in there,” he said.

I gently touched his moving arm and said, “That’s for you.”

Uninterested, he pointed to another baseball cap. “This is not a Christmas gift here.”

I tried to direct his attention to the tree. I was unsuccessful.

“You think we can do that?” he asked. I knew he was back on the leaving track again.

“I can’t do that today,” Roger said again.

Pepaw suddenly recited the names of his four other children and the state where the three girls all resided. Roger acknowledged that.

Immediately, Pepaw said again, “You gonna get me out of here?”

I had to step in.

“Let’s go walking.” I gestured for Roger to lead him out of his room and into the hall. “You and Roger are going for a walk.” I reassured him that his packed toiletries would still be there and ready to go. I followed the father and son as they ventured out side-by-side.

“This is my son, Roger,” Pepaw told the first staff member they met in the hall. “He’s going to get me out of here.”

“He is? Okay. Did you share your candy with him?” she asked.

“Yeah, I shared the candy with him. You got anything to share with me?”

“Not right now, but I’ll get you some cookies later,” she said.

“I won’t be here. We’re leaving.”

“Well, I’ll save you some just in case.” She nodded and smiled.

“We’ll have to find out how to get out of here.” He told another staff member, “He’s my son. He’s going to get me out of here.”

Roger's frustration was obvious to me though he spoke very calmly. “Dad, I can’t do it right now. I’ve got to find my car.”

I knew this was not working. I had to step in again.

My husband stopped, and I gestured for him to back away. I knew we had to get Pepaw on a whole new track, and sadly, it wasn't going to happen while Roger was standing there. I whispered to the staff person that we had gotten the Gunsmoke DVDs, and she tried to entice Pepaw with that.

“I like Walker,” he said.

I reassured him, “We’re getting some more Walker for you.”

“I want to get out of here.”

I stepped next to him. “We’ll watch Walker until Roger finds the car.”

“My son’s gone to get his car.”

I told the staffer about his Christmas tree as we slowly redirected Pepaw to the TV room.

“Where’s his car parked at?” Pepaw asked again.

“I’m not sure," I said. "Show her your Christmas tree.”

The woman did the appropriate oohs and aahs when we entered his room. I showed her how to turn it off, and she told Pepaw, “I like that tree.”

“My son put that there.”

I pointed to the chair. “Do you want to show her your Christmas?”

“I ain’t worried about that.”

I had to encourage him to leave his stuff in his room until Roger found his car.

“I need to get out of here.”

We escorted him to the lounge where she put in the Gunsmoke DVD. I pulled up a chair so he had a front row seat. I urged him to stay and watch to make sure the DVD worked.

“Let’s get out of here.”

I kneeled next to him and kept my eyes focused on his. “Roger’s looking for the car. Let’s wait here until he’s ready. You wait here until I get back.”

“Tell him to come and get me.”

“I will.”

I fought the tears as I kissed his cheek. I knew we needed to leave him for his own good. He would be safe, comfortable and loved here.

“I'll see you in a little bit. I love you.”

Now he was fixated on John Wayne introducing the premiere episode of Gunsmoke. That was okay as I quietly walked away to find my husband waiting by the front desk. Checking back later, we were relieved to hear that Pepaw said Roger must have found his car and left, but would return the following day.

An intense sadness swept me, but I didn't want to explain it to Roger. I was too tired to cry. However, I didn't fully understand it myself until after I had finished stumbling through the holidays.

I had made the mistake of putting all my emotional energy into making Pepaw’s Christmas wish come true with that tree, even though I should have known he wouldn't remember our conversation or his request. I had made it MY job to remember it for him. I had made his wish MY own. How foolish I was to let Alzheimer's ruin it for ME. It was a reminder that we can only truly give without expectations of acceptance, even though that's a delicate emotion that makes us very human.

I learned that I was just as naïve as a child who is devastated when they don’t get THE only gift they really wanted for Christmas … It was a reminder that sometimes the most precious gifts don't come all wrapped up in pretty paper and bows or handy bags.

And I fully comprehend now that the only real gift I can wish for him is release from this horrific disease, from the pain of his endless captivity, from a world that makes no sense and frustrates him. Unfortunately, I can't give that to him, only God can. Until God is ready to give Pepaw his freedom, I must keep him physically comfortable and pain-free and be ready to redirect him and offer a new level of patience that truly challenges me.

And love, lots of love.

For now, Pepaw and I are so grateful for at least one thing: Walker, Texas Ranger. Hey man, you've saved us in more ways than you can ever imagine!

Pepaw's Christmas wish - part 3

2010-12-29T03:36:00.001-06:00

Continued from previous posting about Pepaw's Christmas wish part 2 …

Roger and I walked his dad down the hallway to his room. We had opted for the more expensive, yet necessary, single room for Pepaw because he had gotten into a fist fight with his first roommate over whether their door should be open or closed. (Pepaw wanted it closed.) It had sent the roomie to the hospital to make sure he wasn't seriously injured, which thankfully he wasn't.

It also sent Pepaw to the mental health floor of the hospital for a second time to get his rage under control. Within a few days of moving into the secure Alzheimer's facility, he had earned his first trip to the hospital after going on a rampage, throwing things, including his prized bowling balls, and ripping the towel bar off the wall and swinging it above his head as he terrified other residents and challenged the staff as he ranted in the hallways. He was desperate to get out and even knocked out the screened window in his room and escaped outside where he told the staff he was waiting for his son to pick him up.

That memory still breaks my heart even at this moment, as does the time I sat with him in the hospital and reassured him that he'd be able to go home soon.

We had few options. No words or kindnesses or hugs or diversions or truths or lies or even Walker, Texas Ranger could calm him. He could not understand how we were trying to protect him, and he certainly couldn't comprehend that he had Alzheimer's or what it even was. We hated to do it, but we had to rely on some medication to stem the rage. It didn't take much, but it calmed him to the Pepaw I had come to know and love.

Thankfully he was able to return to this Alzheimer's facility and has adjusted pretty well since then. I have also come to love the staff because they take such good care of Pepaw and understand his little quirks and questions, especially, "Got any candy?" or "Is Walker on TV?" God love him and them …

As we entered Pepaw's room on this cold December night, I noticed his packed suitcase was still by the door. Nothing had changed. He was always ready to go though had not asked for almost two months to leave. Ah, good also, that he hadn't again packed up all the family photos we had arranged on a table for him. That was very good.

Roger moved some of the photos aside to make room for the Christmas tree. He focused on that while I tried to engage Pepaw in the holiday spirit.

“We brought you a couple of things.”

Instead, he looked up at the clock on the wall.

“It’s 15 minutes until 7 o’clock. I already got a bunch of junk here.”

He pointed to his chair. I opened a little ripped package, which contained a fleece scarf.

“That’s nice,” I said, making eye contact. “That’ll be warm.”

He had received a packet of letters from the students in his daughter Lora’s classroom.

I said, “Wow, that’s nice! Did you read them?”

He recited the address, his address, on the big envelope. “I read the whole thing.” I don't think he understood my question, but it was all right.

I handed him a bag with the flannel shirt and Gunsmoke DVDs. “That’s for you. That’s your Christmas.”

Pepaw promptly set it down in the chair.

“I was just fixin’ to tell Roger I want to go with him and get out of here right now.”

“We’ll see what we can do,” my husband answered patiently.

“I want to get out of here right now if you’ll take me, okay?”

“I don’t have my car here,” Roger said. Well, he wasn’t lying. We had driven mine.

Pepaw looked at me. “You gonna take me over to her house?”

“Maybe a little later,” Roger said.

I changed the subject. “You said you wanted a little Christmas tree, so I brought you one!”

Roger showed him the tree and turned on the lights. To me, it was the most beautiful tree I had seen all year as the brilliant colors illuminated the darkened corner of the room. This, this will engage Pepaw. I waited for his smile …

To be continued

Pepaw's Christmas wish - part 2

2010-12-28T07:23:00.002-06:00

Continued from previous post about Pepaw's Christmas wish …

The day after Pepaw's doctor visit and proclamation that he only wanted a tree with lights as a Christmas gift, I found my dad-in-law a perfect little tree and purchased pint-sized ornaments to go with it. I also found a battery-operated string of lights, which was the safest for him. I shared these with my husband, Roger, and he agreed they would do the job.

So I eagerly looked forward to seeing Pepaw's face when we would deliver that little tree. Our schedules and the weather worked out to make the drive three days before Christmas. On our way, we stopped at a place that had advertised DVD seasons of “Walker, Texas Ranger,” but they were sold out. We settled for the first season of “Gunsmoke” to entertain him. The Alzheimer's residence staff said he watched the first season of Walker constantly when he wasn't “riding the rails.” We needed something that would force him to sit for a while.

Why? Because it seemed like he was literally walking himself to death. No wonder we couldn't keep weight on him as we struggled to keep him above 125 pounds. He had always been skinny, but this was too much so. Plus he refused to participate in any activities with other residents though the staff had tried its best to involve him. It wasn't that he was being anti-social, because he was so doggone polite and kind when you talked to him, but he never was a social butterfly. It was just, well, Pepaw continuing to control his own destiny as best as he could, as he always had.

Pepaw, like many individuals with Alzheimer's, was consumed with moving all the time. He could be found walking the hallways non-stop and compulsively touching all the handrails along the way; hence the term, “riding the rails.” Whenever I visited, I knew I'd have to wander the hallways in search of him. When I found him, sometimes we'd just keep walking. I did whatever he wanted to do because I knew I could only engage him on his terms.

I had to learn to accept this obsessive behavior because it was HIS way of coping with what was happening to him. He didn't understand that his brain didn't work “right” anymore, but he became consumed by time. Time. Every minute. Every hour. He had to “kill” time from the time he got up in the morning until he went to bed at night. This had been his pattern since July, now only more intensified.

I remembered the endless calls he made to me when he was at the assisted living facility. I recalled one message I had sent one of my sisters-in-law in early August, a week before we had moved him to this secure facility:

So far your dad has tried calling 6 times this morning, and I was able to answer two of them. First at 7 or so asking “please come help me kill time.” I said I'd be there this afternoon but he kept insisting. I said I'd see him later, nothing I could do about it. Then he called about 8:15 asking the same thing, telling me how “terrible things were happening.” I asked him to be specific, knowing he wouldn't be, but hey, had to at least try. And the day is still young …

During several of my visits to this Alzheimer's facility where he had resided since mid-August, he described how long it had taken him to walk one walkway and how much time would pass on the big clock in the lobby. One time he even got up to demonstrate. So I just sat in his chair and awaited his return, watching him kill time, even when it broke my heart and tear ducts. However, he was safe here. At least I could sleep at night, not worrying if he was out wandering or in danger of getting hit by a car or being taken advantage of by a stranger …

With “Gunsmoke” and a new flannel shirt in one bag and the miniature tree and accessories in another, Roger and I arrived to celebrate Christmas with Pepaw that Wednesday evening before the official holiday. The staff welcomed us as always, and I said we knew where to look for him. They smiled. They all knew his routine, too. I felt like a little kid on Christmas morning as we turned the first corner and ran into him as his hand followed the rails.

“Hi there!” I smiled and held up one of the bags. He looked at me and said hi. He looked at Roger for several seconds. I wondered if this would be the time that father would not recognize son. I was prepared, but I wasn't sure if Roger was. He still knew me as Monica and that I hung around with Roger, but he had forgotten that I was his daughter-in-law. What will be will be …

Good, Pepaw knew his oldest child.

“You gonna get me out of here?” he asked. That was what he still needed his son for.

I immediately changed the subject, much to Roger's relief.

“We've got your Christmas here! You wanted a tree.” I kept my smile ablaze.

“Huh?”

“You wanted a Christmas tree.”

“A Christmas tree,” Roger repeated. “Can we put it in your room? We’ve got lights for it, too.”

He looked confused as we directed him back down the hallway.

“How am I going to get back out of here? I need to get out of here and over to the other place.” We didn’t ask where this was, but we reassured him we’d walk with him again …

To be continued.

Pepaw's Christmas wish - part 1

2010-12-27T00:37:00.001-06:00

On the first Sunday of December, I sat with my dad-in-law, Pepaw, in the waiting room of the after-hours hospital clinic. He had worn his dentures too long, and that caused what looked like an infection on his upper gum. However, he didn't complain about pain until it had gotten bad that afternoon. Hence, the Sunday evening visit to the doctor. I couldn't bear to think of him enduring a night of pain.

That's what Alzheimer's does to you and your loved ones: pains or injuries that you can't see and suddenly your loved one doesn't know how to describe or acknowledge.

Have I mentioned before how much I hate Alzheimer's? How it's destroying Pepaw's brain and body? How many times I've cried this year? How many difficult discussions my husband and I have shared about his father? How I've mastered anger and calm simultaneously?

It simply sucks.

I consider myself blessed that I had written a book about coping with Alzheimer's before Pepaw was diagnosed with it this spring. I knew what to expect, the highs, the lows, etc. I guess that's why God pushed me through the door at the Central Illinois Chapter of the Alzheimer's Association in the fall of 2006 to write on a tragic topic about which I knew little, but about which much would be demanded of me in the future.

And now I have Pepaw.

I got up when the receptionist at the clinic signaled she had some more questions for me. I told Pepaw I'd be right back, that I'd only be walking across the room. I filled out more paperwork as his healthcare power of attorney. I turned and he was standing behind me, just inches away. Though he had startled me, he also made me smile. Beneath his baseball cap, his eyes were big as he asked, "Where's the doctor?"

I walked him back to the chairs and explained that the doctor had other patients ahead of us but that he knew we were there. We sat for about a minute.

"Where's the doctor?"

"Should only be a few more minutes."

Thankfully it was, as a nurse led us down the hallway and I quickly whispered that he had Alzheimer's and was hard of hearing. We helped him remove his new coat, which he needed up here in the cold north after living 18 years in Florida. The scale revealed that he wasn't gaining any weight even though he really needed to. How do we fatten up a scrawny little Pepaw, I wondered to myself again.

Inside the examination room, I answered the nurse's questions and then the wait began again.

"Where's the doctor?"

"He has a few more patients to see. They got here before we did."

"Oh."

The clock ticked …

"Shouldn't that doctor be here by now?"

"The nurse said it should only be a few more minutes."

"Oh."

I listened to the clock tick and the repeat of the above exchange at least 10 times.

The clock ticked again …

"Where is the doctor?"

I needed a more creative answer to keep myself entertained and from becoming testy. This one sounded good.

"Shh," I said. "I think they're right outside the door. I thought I heard footsteps. I think they're reading your chart on the door outside so they know how to help you."

The clock ticked …

"Where is the doctor?"

"I think I hear them coming." I patted his arm reassuringly.

His repetition had become more pronounced in recent months, though he didn't sound impatient. He had just forgotten that he had already inquired. It was up to me to change the subject.

"Hey, it's almost Christmas. After Thanksgiving, Christmas isn't far behind."

He seemed surprised to hear that Christmas was so near and simply nodded.

"Yes," I said, "it's December. What would you like for Christmas?"

He looked at me for a moment and said, "A little tree with lights. That's all. Don't need nothing else."

His simple answer pummeled my tear ducts. My eyes instantly filled, and my heart rattled with the echo of his decisive words. It saddened me so deeply and made me hate this damn disease even more. I put my hand on his and forced my wavering voice to respond.

"Well, I think we can make that possible …"

The female physician then entered. I reassured Pepaw that she was a doctor and would take good care of him. And she did …

As we left the clinic, I had to help him zip his coat, just like I did for my son when he was a little boy. It felt good to be needed as I told Pepaw to bundle up good because it was cold outside. He thanked me. I wanted nothing more than to take him home with me, to decorate and light up a little tree just for him, to see the bright colors reflect in his eyes, to see him smile and let him watch DVDs of his beloved "Walker, Texas Ranger" for as long as he wanted, forever, if I could …

When I stopped the car in the drive, he asked if we were "back home." Yep, I told him.

"Let's go inside where it's warm. It's almost time for bed."

This was Pepaw's home since late August, a secure Alzheimer's facility. It killed me to be more than hour from him, but it was for his own safety and for others that we made the difficult decision to place him in a special residence, which had an opening at the exact moment we needed it. Here he could not wander off … or set off the smoke alarm in his room by stealing matches and smoking … or threaten people with God's wrath and his mighty fist that he nearly threw at me a couple of times.

As I ushered him inside, we were greeted by one of the staff members who welcomed him with a smile and asked how he was doing. He said fine. I needed to run to the pharmacy and pick up his prescriptions. I told him I would be back and kissed his whiskered cheek.

"I love you," I said. He would likely be in bed by the time I returned. They would make sure he got his medicine.

"I love you."

On the drive home in the December darkness, I made my plans to make sure Pepaw got his Christmas wish …

To be continued.

The pain of Pepaw's descent into Alzheimer's — part 1

2010-09-23T04:53:00.000-05:00

A note to my dear friend, Molly, an Alzheimer's caregiver who passed away unexpectedly in January. I always shared moments like this with her. It's a habit that's hard to break …

Dear Molly,

You know it's been a while since I've written about Pepaw. Well, from your front row seat in heaven, you know I've taken on more than I expected with caring for my dad-in-law and his Alzheimer's. How I wish you were here to talk to me, though I know you are listening.

Remember, I'm still human.

But dammit, that's just not enough for ME! Some days I am so selfish that I want you right here on the other end of the phone or offering me ice water when the sun or internal turmoil and pain set me ablaze. But I quickly acknowledge I'd never want you to go through all that earthly pain again.

I'm human.

I've discovered a new intense love for and relationship with those individuals who have stepped forward to help. I've learned to stand alongside those who need help adjusting to Pepaw's painful journey, his hell on earth. I've also developed an unexpected and uncomfortable hardness toward and indescribable disappointment in those who have let me and Pepaw down. Some days I wonder how those people can even live with themselves.

I'm human.

It's been barely five months since we brought Pepaw to Illinois from Florida, yet some days it feels like five years … other times, 500. It's been a tragedy to watch his rapid decline, which has presented unique and painful physical, emotional and financial challenges. I guess I've been unable to write about my dad-in-law recently because I'm still absorbing it all, trying to make sense of a damn disease that makes no sense. It is so infuriating and heartbreaking! Some days I give up reaching for tissues, opting to not waste them and instead saturate my T-shirt sleeves.

I'm only human.

During mid-to-late July, I learned to live with my phone, not knowing what Pepaw would do next at his assisted living facility. I'd get a call about his smoking or his proclamations that this residence was hell, that there was no place more evil than it. I'd learn of how he had a direct line to God, who promised Pepaw that He would destroy this nasty, nasty place. Unfortunately, some of the other residents who heard his tirades became justifiably frightened at his ravings.

And so it continues … tomorrow.

For sale: an old man's truck and his dreams

2010-09-04T00:14:00.003-05:00

For sale: 2006 GMC Canyon truck, one owner, under 30,000 miles, air, white, basic model …

What else should I add to the description as we search for a buyer for my dad-in-law's beloved truck? In Florida, Pepaw steered it to a relative's where he arrived uninvited day after day and fell asleep in the living room …

Once he scared a passenger, one of his daughters, so much that she scribbled all her emergency contact information in case of an accident …

Oh, and he never forgot the route to the store where he shoplifted over-the-counter sleeping pills so he could take five or six a night. A night. Yep, we found a lot of those little blue tablets in his kitchen cabinet in April when we moved him and his truck here to Illinois …

He thinks he drove the truck loaded with his basic possessions here, but his oldest son, my husband, was at the wheel every mile cross-country as I followed them in our van also filled with his belongings.

This is the truck Pepaw has accused us of stealing. This is the vehicle that he was sure was our one-way ticket to prison and his one-way ticket to freedom in Tennessee where he would be welcomed by his daddy, aunts and uncles, and siblings, and work at his daddy's service station …

What else should I include? Unfortunately, he did smoke in it, but we've gotten rid of most of the stench. However, overall he took pretty good care of it.

Pepaw loves that truck and wants nothing more in the world but to drive it to the bowling alley or to the lake for fishing … or wherever his dreams may take him. That's all this 84-year-old man craves … and to get away from all these evil people who are ruining his life and putting him through hell.

Just one more thing to add to the want ad:

Must sell to help pay cost of owner's Alzheimer's care.

Instruction manuals for my men — part 1

2010-08-14T06:10:00.003-05:00

When my 28-year-old son was little, I would prepare detailed descriptions of his likes/dislikes and needs/wants when I left him with family, friends or babysitters. I wanted to make everyone’s life a little easier. One of the more colorful lists I prepared was written for his paternal grandparents, Meemaw and Pepaw, when he visited them in Florida at the tender age of 10.

INSTRUCTION MANUAL FOR MODEL WHEELER 1982

Thank you for selecting this product. This high-energy model is guaranteed to give you hours of joy. To extend the usefulness of this product, we suggest the following:

1. Unwrap carefully to make sure it’s not damaged upon arrival or emitting strange odors, though it was cleaned thoroughly before packaging.

2. Clean daily. Recommended methods of cleaning include hosing down in the yard or a small confined area such as a shower. Special brush included for cleaning of teeth.

3. Fuel consumption by this model varies but energy output increases with servings of fruits and vegetables, cereal and peanut butter and jelly (peanut butter on one piece of bread folded and jelly on the other piece). This model does not consume large quantities of meat. It does generally ingest more in the early morning hours.

4. Needs only occasional guidance, though a few reminders to complete certain tasks. (Part of the age and style of this model. Threat of swift kick in rear component should clear up the problem.)

5. This model is complete with extra politeness and helpfulness components. These should be functioning properly. If not, readjust by screwing hands around the neck region.

6. When bored, this model may whine a little bit. Ignore or lock in shed for a while to allow model to reset itself.

7. Model can become lethargic if exposed to too much television. Limit this exposure and encourage interaction with reading material.

8. For your enjoyment, this model is also equipped with extra hugging and kissing devices. Reciprocating enhances this feature.

We hope you enjoy this special product. It’s the only one in its class and style and was constructed with the finest components available. If you have questions about this model, ask the model itself or its manufacturers, Wheeler Inc.

Hmm, now what instructions would I include for my husband? Check back tomorrow …

Strokes affect our feline family members too

2010-07-30T10:16:00.002-05:00

After I poured the food into the bowl at 4 a.m. last Friday, I quickly stepped back, expecting to be bowled over by our cat, Clark, who could hear one morsel of food hitting ceramic from the far corners of our house and come running. I had learned the routine well after nearly 14 years.

I didn't hear the thundering of his paws. Instead, his sister, Lois, savored the rare opportunity to dine first and quietly as the proper little lady she was. Hmm … I walked into the living room where I saw Clark in his basket located near the front door to satisfy his insatiable curiosity on who was coming in and out. He looked up at me as he always did.

"What's wrong, Clark Bar?" He always responded to the name we had jokingly bestowed on him years earlier in homage to the candy. He was also our "spotted cow," with eight random black spots on a sea of white fur. It was then that I remembered hardly seeing him outside of his basket on Thursday as I had been rushing in and out to attend to the needs of my dad-in-law, Pepaw, whose Alzheimer's was a little scarier each day.

He protested as I lifted him out of his basket, but that wasn't unusual because he never was a holdable cat. I set him on the floor where he slowly walked forward. I studied him and noticed he was dragging his back legs or attempting to use them properly, but they weren't cooperating as they kept slipping. I carried him to his litter box in case he needed to go. He apparently didn't. He pulled himself out and started to scoot back to the living room, bypassing the food bowl.

I quickly left a phone message for the vet's office to call me first thing when they opened in another three or so hours. I then returned to the living room where Clark laid on his side on the floor. I sat down next to him and petted him. He didn't protest when I returned him gently to his basket.

I wondered … could it be a stroke?

I had certainly learned a lot about stroke in the couple years that I have been working on a book about coping with this leading adult disability. Yes, all the challenges that human survivors and their caregivers face, but could stroke have affected my feline baby, too?

The vet's staff called about 7, and I could get Clark in at 8. When I picked him up and set him in his traditional cardboard travel box, he looked around at the world with his usual curiosity during the five minute drive. I waited patiently as the vet took him out of the examining room to look at him closer.

When the vet returned, I could see it his face. Clark had "thrown" a clot and experienced something like a stroke affecting the back half of his body. I admitted that I had suspected the cause, and he nodded. I started to cry because I knew what was going to happen. I told the doctor how I had to go this day to look for the next phase of housing for my dad-in-law with Alzheimer's. And now my baby didn't have a good prognosis. His age, weight and numerous other factors were working against him as the vet gently explained the limited care options.

My heart and mind chose the right one. Keep him comfortable, I told the vet and his assistant as I needed to call my husband and son to visit our Clark Bar for the last time. I would return that afternoon to be there with him to release him from his pain.

Somehow my family understood me on the phone between my tears and loss of voice as I explained it was the best thing for our baby. They would each go to see him in the next few hours.

And then my sister-in-law and I went to look at facilities that could care for her dad's future needs. It wasn't easy or pretty to see what Alzheimer's had in store for Pepaw. Oh Lord, what a depressing day!

Late in the afternoon, my sister-in-law accompanied me as I said good-bye to my baby, Clark "Superman" Kent Wheeler. Free of the cage, he looked around the room and nuzzled noses with me and attempted to stand, but his back legs wouldn't cooperate. The vet told us that some symptoms had worsened during the day. We had made the right decision.

All of us laughed as I recounted the day when Clark became famous around the veterinary clinic as the "bat cat." About 11 years earlier, Clark had captured a bat that had gotten into our upstairs. When I discovered what the commotion was all about, Clark had the bat in his mouth and was shaking his head back and forth, beating that bat against the floor with each blow. I managed to get him to drop the bat, which I somehow bagged while freaking out at the same time.

Off to the vet we immediately went, the bat in a paper bag and Clark in his cage. They had to keep him until the bat could be tested for rabies. I wanted that to be done quickly, so the next day, I drove the bat head in a box to the testing center 45 minutes away so that Clark could be cleared to come back home sooner. No rabies, thank God! He was welcomed home as a hero for saving us from that bat!

But this day was the end of the earthly road for our hero Clark. I kissed him good-bye as he relaxed in eternal sleep. He was now free to run without pain and do all the things our beloved feline friends love in a special place in heaven.

Purr, baby, purr.

"I didn't sign up for this"

2010-07-26T08:13:00.002-05:00

During four years of immersing myself in the topic of dementia and Alzheimer's, and writing and speaking about it, plus now serving as a caregiver, I've heard just about every scenario, crisis and triumph.

But there's one caregiver statement that really hits me now and then:

"I didn't sign up for this."

I was thinking about that one Sunday as I sweated in the July heat and watched my dad-in-law, Pepaw, fish. No, I didn't specifically sign up for this chore when I agreed to be his caregiver. I think it was in the fine print under "and all other duties as assigned."

There are a lot of things in life that I didn't sign up for. The first one that comes to mind is life itself. Nope, don't remember signing on any dotted line for this adventure, but I arrived and have tried to make the best of it.

I didn't sign up for my mom and dad, grandparents, aunts, uncles, cousins, etc. I got to know and love them and created my own place in the family. I learned to adjust and weave my way through a complex world that made no sense to a little girl.

I certainly didn't sign up for measles, chicken pox, bad tonsils, cuts that required stitches, and broken toes. If I had had any say, I would have requested summer weather year-round as a child so I could play outside every day.

I don't recall adding to my "want-to-do" list things like going to school, doing homework, being made fun of, fighting with so-called friends, and doing household chores. Those were the kind of things that came with this job of life.

I didn't sign up for rejection when the boy I had fallen for didn't like me in the same way in junior high, though he was quite amused by my lengthy and chatty letters. I didn't seek disappointment when I was not selected as a junior high drum major or my writing contest entries didn't win.

I did sign up for love when I met the right man and got married. However, I didn't sign up for arguments, financial headaches and the really hard work it takes to make a marriage work. But I've accepted those challenges along the way because I love this man.

I did sign up for motherhood when I gave birth to a robust boy. However, I must have missed all the fine print on the hours it demanded. Nowhere had I signed my name that I wanted to have more sleepless than restful nights those first couple of years. And I would have never agreed to chain myself to the pile of laundry a growing boy creates. But I waded through it and survived because I love my baby boy who's become a wonderful man.

I didn't sign up for the tragedy of war, high taxes, inept government and elected officials, potholes, road construction, mandatory insurance, and standing in line forever. I would have definitely voted down whoever created and implemented the phrase, "Life isn't fair."

I didn't sign up to be at my grandpa's side when he passed away, but I was there when it happened. I didn't sign up to attend the funerals of friends who died tragically, but I went to express my sympathy to their loved ones who had never asked for that kind of grief. I never signed up to lose my mom-in-law 10 years ago or my dear friend this year. I would have ripped and burned any paper that asked for my signature. I had signed up for love, but somebody made the rule that sometimes we lose the people we love. However, I wouldn't have missed the love for anything because the love really does last longer than the grief.

This spring, I signed up to be a caregiver for my father-in-law even though I knew Alzheimer's was slowly stealing his life. I didn't ask for the anger, accusations, threats and rudeness of recent weeks. I was not eagerly looking forward to having to help clean him when he soils himself, saving bushes from catching on fire when he flips his cigarettes into them, or having to hurry to his assisted living facility when they call about his erratic behavior.

I never asked for a broken heart, exhaustion, tears of frustration, loss of freedom and countless hours to do what I want to do, and being told, "You don't love me."

If caregivers saw every single thing that they'd have to do in caring for a loved with Alzheimer's or any catastrophic illness or injury, there would be few takers. Who asks for heartache, anger, pain and grief? I didn't, but I accept it because it's part of a higher calling and purpose in life, to show compassion to those we love … and to pray someone will show that same compassion when we need it in our final days.

No, I didn't sign up for "this," but no one is going to erase me now.

So that's what sisters are for

2010-07-24T19:15:00.001-05:00

I'm an only child. I acquired official sisters only through marriage, three through my husband Roger and two step-sisters when my dad remarried.

I was delighted when my sister-in-law Lisa was able to fly up here from Florida and spend a week with us and her dad, Pepaw, who she had not seen since we moved him here three months ago to care for his daily needs. Unfortunately, she has now witnessed the toll Alzheimer's is taking on him, and I wish I could have spared her that agony.

Pepaw's had a rough week or so as Alzheimer's has not been kind to him or us. He's been angry. He's been argumentative. He's been rude. He's been downright mean at moments. He's threatened to have everyone thrown in jail for any and all imaginary crimes against him. He still vows to whoop somebody's ass.

However, he's had some good moments, just very few of them while I'm around. He has turned on the charm for the ladies and has treated his daughter fairly well. His unpredictable behavior has forced us to consult with the doctor and realign his medications. Lisa and I knew it was time to plan for the future, as painful as it may be.

Friday was going to be tough. It's not exactly a pleasure trip to visit Alzheimer's units in nursing homes and try to imagine your loved one there. Lisa and I needed to research possible future care for Pepaw. I knew what to expect after writing a book on Alzheimer's and seeing firsthand how it ravages the human mind and body. Lisa did not.

We greeted several residents who replied "Hello," and saw a variety of activities and space devoted to memory care. However, I don't think I'll ever forget her face as she witnessed so many folks sitting in wheelchairs or asleep in the middle of the day or heads slumped forward. Will that be her dad someday?

Only God knows.

The visits emotionally drained us. However, the toughest challenge of the day awaited me. Friday morning, I had taken my cat Clark to the vet because he seemed to be dragging his hind legs. I learned that he had had a stroke and his age, 14, and several other factors led to a poor prognosis. I had to prepare to say good-bye to my baby, Clark "Superman" Kent Wheeler, to spare him pain. In tears, I called Roger and our son, Gordo, who had been a freshman in high school when we adopted Clark and his sister, Lois Lane Kent Wheeler, as kittens from the animal shelter. I advised them to visit Clark at the vet's and say their good-byes.

I felt so bad for exposing Lisa to another sad event, but she insisted on accompanying me as I hugged and petted my baby and stayed with him until the injection ended his pain and he began his eternal sleep.

In that moment, I learned that what sisters are for … to wipe each other's tears, to keep tissues close at hand, to answer your cell phone when you're crying too hard to talk, to support you with strong and loving arms, to love you unconditionally, to always find room in her heart to help carry your burden when her own heart is seemingly full.

And at the end of the day, as I dropped her off at the residence where her dad lives, we caught him walking down the sidewalk. As we drove up, Lisa greeted him and asked where he was going. To the highway, he answered. Her look reassured me that she would handle this, and I slowly drove away.

A sister's work is never done, and it seems impossible to say "thank you" enough. That's where love comes into the equation and makes life equal and bearable.

I love you, sis. Thank you for loving me.

I'm going to jail and Pepaw will probably be in the next cell

2010-07-13T00:59:00.005-05:00

My dad-in-law, Pepaw, still insists that I'm going to jail for stealing his truck (see earlier post on "I'm going to jail"). He really, really does not like me now.

Yes, dementia is really playing havoc with him now as he's obsessing about his pick-up truck that we brought here to Illinois when we moved him in late April. We gently took the keys away before we left Florida because his driving terrified us. We had to do it to protect him and everyone else on the road.

The essential question families must ask themselves if they're worried about their loved ones' driving: would I allow my child or grandchild to ride with them? If the answer's no, the keys must go. That's it. Period. And I'm not being flippant when I say, don't let pride take a fatal ride.

Pepaw's truck is sitting in our driveway out of his sight, but this week, at his assisted living apartment, he has composed a new song: "It's my truck. You stole my truck. I can drive. I've been driving all my life. You're going to jail …" Second verse, same as the first. One hundredth verse, same as the first …

Pepaw was an auto mechanic for many years. He threatened to call a towing company to bring his truck to him and a locksmith to get a new key made. That's why we can't park the vehicle at his residence. He can't be trusted because he'll find a way to fire it up.

Tired of his accusations directed at me and my husband Roger, I told him, "Yes, I'll go to jail … if I LET you drive. You have a memory problem, and we don't want you to get hurt or hurt someone else."

He gave me the same evil eye he did when he threatened to whoop my ass the day before.

Alzheimer's has robbed him of common sense, power to reason and judgment. He says there's nothing wrong with his memory or driving. He thinks he drove here from Tennessee. Roger never let him behind the wheel during that drive from Florida. He says he drove an ice truck and never had an accident. That's true … 60-some years ago. And he was an okay driver during his life until dementia took a skill away that he doesn't even know is missing. (Any day now he's getting the official form from the doctor and state that will revoke his driving privileges. We hope that helps when he sees it in writing.)

Now, as for stubbornness, I think that's a Pepaw trademark that has mushroomed in recent days as he will not acknowledge anything that has actually happened or that HE did.

Yes, on Monday, the staff caught Pepaw removing a license plate from a vehicle in the parking lot. When they told me, I was appalled and asked him about it. He looked me in the eye and said:

"I didn't do that. I found it laying in the grass."

"Everybody saw you do it!"

Now, I've learned in two and a half months when Pepaw is confused or forgetful and when he's simply lying. There's a mannerism about him that reeks of a lie, and boy, did he stink at that moment.

I couldn't help blurting out in laughter, "You're lying!" No, dementia was not the culprit here.

"Nope." His voice and expression were cocky and confident.

That little shit. I had to say it: "You know stealing a license plate is against the law. You could go to jail, too!"

Nope, I was still the felon. "The police are coming to knock on your door and take you to jail for stealing my truck. That's against the law."

I was nice. When he went outside for a smoke, I removed from his room a pocket knife, two pairs of pliers and the screwdriver he had used on the license plate.

A little while later, he came up to me and said, "Did you take my screwdriver?"

"Yep." I smiled, eager to confess my guilt because he knew he had been busted.

He shook his finger at me. "You're going to jail …"

Well, it looks like Pepaw and I may both be headed to the big house. With my luck, we'll probably get adjoining cells …

Guard!!

I'm going to jail

2010-07-11T19:45:00.008-05:00

Yep, I'm going to jail. It's a good thing I kinda like orange.

I had been home for just a little over two hours Sunday after the Pilot International convention in Louisville, when my dad-in-law, Pepaw, told me I was going to jail.

Welcome home … to dementia.

Pepaw demanded I give him the keys to his truck or he was calling the police.

"It's grand theft. You'll go to jail …

"I'm calling a tow truck …

"I talked to the chief of police, and he said if I call him again, he'll arrest you …

"I don't want you to go to jail, so return my truck …

"It's my truck …

"You're stealing my money, too. It's my money …"

Pepaw sure knows how to make up for lost time. He pulled out the new Illinois fishing license and showed it to me, saying, "I can drive in Illinois. This is my driver's license."

"It's a fishing license. See where it says fishing …"

So, pardon me for a short story today. I need to pack my bag for jail. Don't need much because I know I'll look marvelous in orange.

And as Susan Hayward said in the classic movie, "I'll Cry Tomorrow."

A brain injury caregiver who shared her free time with me

2010-07-09T21:57:00.009-05:00

I am deeply humbled that a full-time caregiver gave ME an hour and half of her precious free time Friday to talk about three of the greatest joys of her life: her son, caregiving and educating the world about brain injuries.

As I listened to the succinct, insightful and emotional words of Jenny Carter of Dallas, Texas, I was immediately captivated by her honesty to literally tell it like it is when it comes to the five years she has been a full-time caregiver to her son, Sean, who suffered extensive injuries in a 2005 auto accident at age 22. The most serious long-term evidence of the accident has been a traumatic brain injury, which has robbed him of the ability to walk and talk and placed other limitations on his physical body.

Ah, but not his mind, which is sharp and full of the same kind of witty and uproarious comments from a 20-something modern male. I know the vocabulary and style well: my own son is 28. The only difference is that Sean spouts all that with his communication board.

Jenny taught me more in that 90 minutes than college students can learn in years of pursuit of a degree. What many people do not realize is that something like a brain injury or stroke is an immediate life-altering situation. "Normal" ceases in that moment. That's it. There's no cure. There is only endless hard work and an ongoing hope for continued recovery, to reclaim portions of a life lost to a cruel injury that lies hidden from our view. And nobody knows what the future will bring.

Despite the initial heartbreak and daily challenges, Jenny and Sean have this amazing attitude: they live life. They absolutely refuse to wallow in self-pity and lamenting what might have been. Though she readily admits it's still an adjustment at times and there are always going to be some tough days, they've learned to move beyond the tragedy and truly appreciate life. The mom brought her three sons up to choose to be happy, and she and Sean have embraced that philosophy with even greater fervor.

And it shows in their radiant smiles, their shining eyes, and how they get out into the world and refuse to hide away. Yes, they're serious about warning of the dangers of drinking and driving, but they're even more determined to not let life pass them by.

My conversation with Jenny reinforces what I have learned about coping with strokes and brain injuries: attitude is 90 percent. Those survivors and caregivers who have chosen to focus on the positive, the possibilities and the gift of life itself are the ones who continuously make gains emotionally, physically and spiritually. Those who have faith and believe in something bigger than themselves also excel in everyday life and surround themselves with people they inspire and lift in unique ways.

What wonderful lessons for each of us, how we attract what we radiate. Bad things happen, but we human beings have been blessed with a capability to reach within and without to touch and enrich other lives … whether we're the ones lending or accepting hands of help.

What awesome powers we possess! What awesome people we can welcome into our lives! What awesome strides we can make when we give ourselves permission to live!

And thank you, Jenny, for giving me one of the most precious gifts in this world: you.

Pepaw was a firecracker for sure!

2010-07-08T08:14:00.001-05:00

Hmm … how do I describe the Fourth of July with Pepaw, my dad-in-law, who has Alzheimer's?

He was a real firecracker, but my husband Roger and I were the ones who wanted to explode before the fireworks ever hit the sky.

Nope, surprisingly Pepaw didn't ask about his cigarettes when we arrived to take him fishing. He immediately started with:

• "I've been waiting for you for three days …"

• "I want the keys to my truck. I want my truck now …"

• "The government is stealing my money …" (Well, I'll go along with that one.)

• "They don't know how to cook here …"

• "I want cookies …"

I love THE Cookie Monster, but I wasn't too crazy about THIS cookie monster on Sunday.

By the time we got Pepaw to the fishing spot, he had complained about all those topics and others a couple more times. As we unloaded the van for the adventure, Roger whispered to me, "Is there anything he hasn't complained about?" I reassured him, "Nope."

The boys spent five hours in the pursuit of fish, while I worked on my books. It was overall pretty relaxing. I asked Pepaw if he wanted something to eat.

"Cookies," he said.

"Nope. No cookies today. Strawberries?"

"I'd rather have a cigarette."

"Oops, forgot them. Strawberries?"

The boys each caught two fish, which we gave to a fisherwoman who was more than eager to take them home to her frying pan. I shed no tears over losing that opportunity.

As we packed up, Pepaw insisted on getting cookies at the store. So, we obliged to let him pick out some as he explained the cookies were healthier than the food he was being served at his residence. I made the mistake of contradicting him.

"You can have some cookies after you eat dinner."

"No, don't want any dinner. Cookies are fine."

"OK, how about we pick up a sandwich for you on the way back?"

"Nope, cookies are fine."

This went on for several moments, and I realized I was getting yanked further into a level of frustration that was making me hotter than the fish in that woman's frying pan. I looked him in the eye and grabbed one of the wild excuses rapidly filling my head.

"Do you realize that Roger and I could be thrown in jail if you're not eating properly!"

"I'm fine."

As Pepaw searched for the cheapest cookies in the aisle, I turned to Roger and said, "I'm done."

In that moment, my husband became the wisest man in the world. He knew that when I, who has maintained the most patience since bringing his dad to town, had lost it, it was time to call it a day. He quietly said he'd take care of his dad, and he did.

On my own, I over-analyzed my reaction to this whole thing. I was tired. I was sweaty. I had spent entirely too much quality time with my husband and father-in-law. I was arguing with a disease that never loses.

When we met out at the van, I had cooled off. Then Roger took me aside and said:

"Guess what he just told me!" Uh oh, Pepaw had figured out how to get into the locked drawer where his cigarettes were hidden …

Hmm, cookies were sounding awfully good for dinner.

Taking away more freedoms on Independence Day

2010-07-04T00:05:00.007-05:00

I'm not sure how my dad-in-law will view this Independence Day. I'm not sure if he realizes how much freedom he's lost this year.

Thanks to the ravages of dementia, Pepaw can't live by himself anymore. We have to monitor his eating habits to make sure he's getting proper nutrition and won't eat cookies and donuts all the time. We had to take control of his medicine because he wasn't taking it properly. We have to remind him to maintain personal hygiene. We had to take away the car keys because it wasn't safe for him to drive.

The other day, we had to take an even bolder step: ration his cigarettes. Now he can't have one without going to a CNA at his residence and asking for it out of a locked drawer. That's the only way we could be sure he'd smoke in the proper place outside.

Yes, I hate cigarettes, but that was one of the hardest things I had to do when my husband and I decided to take away Pepaw's freedom to smoke whenever and wherever he wanted to. I hated taking away one of the few remaining things he truly enjoys, but we had to do it because he couldn't remember the rules on his own.

And he certainly couldn't remember how many cigarettes he was consuming. He said he had only had two a day. Hmm, less than 48 hours earlier, I had given him a new pack of 20. Yep, his math skills are a bit fuzzy these days …

In great detail the other day, he told me how to dissipate smoke and keep it from reaching a smoke detector. I'm not going to tell you how (to avoid copycat behavior), but it was pretty clever and he was quite proud of himself. I was actually impressed. If I weren't fuming at the time, I might have congratulated him on his creativity.

How has he responded to the new restrictions? I don't know yet because I thought it was best to stay away for a couple of days so the CNAs could ease him into the new routine. It was the best and most consistent thing for him. Will he simply ask us for cigarettes when we show up on the Fourth of July to see him? Will he get mad and blame me for the limiting his freedom to smoke? Will he have forgotten?

No matter how Pepaw greets me on Independence Day, I'm ready for anything because it's one of the risks of love, concern and caregiving. Perhaps the thickness of my skin is growing in proportion to the size of my heart because I know I'm going to hear him say again very soon, "Thanks, darlin'" and "You let me know if you need anything."

God bless America and Pepaw.

Hey, you aren't supposed to forget me yet!

2010-06-29T02:33:00.001-05:00

A note to my friend, Molly, an Alzheimer's caregiver who passed away unexpectedly in January. I always shared moments like this with her. It's a habit that's hard to break …

Dear Molly,

Here's my most recent posting on Facebook:

My dear friend went to visit my dad-in-law Sunday while I was out of town. As she sat out on the porch with him watching traffic go by, Pepaw told her that his son Roger & "his girlfriend" come over & visit him a lot. I knew this was going to happen. I leave for one weekend. All right, Roger, who's your girlfriend?!?!? Alzheimer's … I choose to laugh now & save the tears for later.

So, how did I do? I think the spontaneous humor was quite clever and cute, and you know I can't pass up a good joke. But the best thing about it was that it was natural and real laughter from deep within my heart. Lord knows I always looked for a sliver of humor to try to lift you on your toughest caregiving days when Alzheimer's shattered your beloved Joe's memory one vicious blow at a time …

Did I work through my sorrow and pain well?

Thank goodness for shirt sleeves to wipe my tears because I'm too lazy to get up and get a tissue!

As midnight creeps past me, I've decided wisely not to run over and see Pepaw in the morning and shout: "After all I'm doing for you, you can't remember that I married your and Meemaw's oldest son and gave you a grandson? Dementia is stealing you from me way too fast! I just got you up here to take care of you, and two months later, you think I'm just his girlfriend! Hey, you aren't supposed to forget me yet! What's with you?!?!"

Okay, Molly, you're the only one to hear me rehearse those words just once, never to be heard again.

Continue to reassure me that it's okay to shed a few tears here and there … much easier to absorb than a flash flood. It's okay to laugh my way through this unexpected memory slip because I'm not laughing at Pepaw: I'm laughing at life, choosing to rise above it rather than let it beat me down now. If I can weather these smaller storms with humor and compassion, it will be easier to handle the emotional tornadoes that will attempt to pummel me down the road.

I still laugh at the great story you shared with me about Joe:

Joe was sleeping this afternoon and when he woke he heard the lawn mower. Thought I would get the front lawn mowed while he slept. All of a sudden I heard the sound of a motor coming from the back yard. I stopped my machine and went to the back yard to see Joe mowing the back yard with the snow blower. Guess what? He was going in perfectly straight lines and the blower was not digging up the grass at all. Before long the snow blower ran out of gas. I told Joe that something was wrong and we would have to wait until our son could come over and fix it. Nice to know that eventually it runs out of gas, stops and gets put away!

Thanks for showing me that there are still many, many reasons to savor and save the funny moments!

Love you!
Monica

P.S. And thank goodness we don't have a snow blower!

Caregiving: The guilt was killing me!

2010-06-25T00:02:00.001-05:00

Guilt is one of those power words that brings down governments and sends children into hiding.

No, I didn't commit a capital crime or break something. I just felt this overwhelming guilt for deciding to leave town for a couple of days to see family and friends and interview stroke survivors and caregivers. I felt guilty for being away from my dad-in-law for more than a day.

I've been with Pepaw almost every day for two months since we brought him here to live in Peoria so we could take care of him. I did take Monday and Wednesday off this week, and yet Thursday, as I picked him up from bowling and attended the Alzheimer's support group meeting with him, guilt began to sweep me for not being here for him this weekend.

Caregiver guilt: it's a killer.

I gave myself the same pep talk I give other caregivers when I speak to groups: you've got to take time for yourself or you're of no use to anyone.

The caregiver inside me shouted: what a crock of you-know-what! Shame on you for ABANDONING your father-in-law! Tsk tsk tsk!

I know I'm a Gemini, but these two voices were about to deafen me.

Here's the first debate:

• My husband will reassure me that NOBODY can take care of his dad as well as me. What a smart, smart man I married.

• But I have to let someone else fill in and learn the ropes of the everyday stuff. This is the weekend my son needs to have some one-on-one time with his grandpa so that Pepaw doesn't forget who he is.

Here's the second debate:

• I need to make sure he's out doing stuff HE wants to do every day.

• Hey, Pepaw is probably trying to find a polite way to say, "Hey, I need a vacation. I want to watch TV all day."

And there are a dozen more arguments that are trying to hold me captive.

I now realize the source of and solution to my guilt: love.

In two months, I've truly fallen in love with this man. I'm closer now to him than at any other time in the 36 years we've known each other, including the last 31 as his daughter-in-law. Sure, I'd given him hugs when we'd see each other after long separations and when it was time to say goodbye. Now I give him a hug every day I see him because he's become very special to me, more than just my dad-in-law.

I tell him every time I see him that I love him. And he tells me the same.

I care about his everyday life and want to be sure he eats properly and gets his medication. I've endured uncomfortable nights in a rocker-recliner so I could be close by during his first nights in new places, so that he wouldn't be confused or lost or unable to find his way to the bathroom at 3 a.m. I've helped him shower and made sure he had clean clothes. I've taken him to doctors' appointments and tried to ask all the right questions so he gets the best care. I've sat in bowling alleys and bought him cigarettes.

And just like every caring caregiver I've ever met, I do it because I love him. I want him to be happy, healthy, comfortable and pain-free. This is what we do for our loved ones. Hence, the name.

My guilt is now eased by the knowledge that I will come back after a few days away refreshed and more alert to meet his ongoing needs. That is how I will become a better caregiver by giving myself some care.

And by golly, I'm worth it! Pepaw tells me so!

Caregiving: Cigarettes will be the death of me - part 3

2010-06-24T08:57:00.003-05:00

Final note about Pepaw and his smoking for NOW …

After we exit the convenience store without any cigarettes, I take a deep breath and use every bit of energy to not explode at my dad-in-law. Pepaw could not understand what I thought was a very simple concept about price in the store. Wisely, I had given up because I reminded myself he'd never get it because of his dementia. It's not his fault. So, we leave without purchasing anything and get back into my car that was suffocating on this miserable muggy day.

It was just one of those days when I didn't have much patience. We all have them. At least I could admit it to myself. Maybe I'll cool off in more ways than one if we go back to his residence and have some lemonade so that I can leave him on a good note.

I turn the key and nothing. No sound, no roar of the engine, no air conditioning springing to life. Nothing again and again and again …

"What's wrong?" Pepaw asks.

"I don't know. It's never done this before."

As if I know what I'm looking at, I raise the hood and glance inside at the engine. Pepaw was still in the car. I make the nicest offer I can to a man who had been a car mechanic much of his life.

"Do you want to look at it?"

He nods, steps outside and peers inside. After not wiggling any wires, he says it could be the battery, but he doesn't really know. I appreciate his honesty. I felt it was important to ask his opinion because it may have sparked some mechanical memory. It didn't.

I call my husband Roger and explain the situation. He'll drive over. Done. Pepaw tells me he's gonna walk across the gas station grounds toward the road and smoke a cigarette there. Noooooooo … I ask him to just stand behind the car. He nods and lights up.

Let's see, a woman standing alongside her car with the hood up and an elderly man smoking while leaning on the trunk … Six men ask if I need help. How nice! I thank them and reassure them my husband will arrive shortly.

Then Roger calls and is unsure where I am. I quietly shout because I've lost my cool completely, and it's not a very pleasant conversation. He finally arrives, and we decide to take his dad back to his apartment to get him out of the heat. We discover that the car battery is deader than dead, way before the warranty is up. Roger and I apologize to each other and even laugh about the things I'm doing for HIS father and those damn cigarettes.

The next day I do the smart thing and buy a carton of cigarettes out of Pepaw's checking account and hide it in my trunk. I give Pepaw one pack, and his first question: "How much was it?"

"Just $4."

He says okay and smiles. He pulls out his wallet. I wave him to stop.

"Don't worry. You can pay me later."

"Thank you, darlin'."

I'm counting on him to forget and on me to remember to always have a pack stashed.

I later tell my mom what had happened, and she understands: she still smokes a couple cigarettes a day, but never around me when I see her. However, I make one thing perfectly clear:

"If I should need to care for you someday, I don't care how much you beg me for cigarettes, I'm slapping a nicotine patch on you!"

And we choose to laugh. It helps to clear the air.

Caregiving: Cigarettes will be the death of me - part 2

2010-06-23T00:04:00.002-05:00

More about Pepaw and his cigarettes that drive me crazy …

Last week, he wasn't content with the prices at one store and was sure there other places to get them cheaper. I was tired, it was hot outside, but I felt like I had to get him his damn cigarettes. I could change the subject on any other topic and redirect him, but not his smokes.

I park at a convenience store, that I privately vow will be our last stop for the day. Inside, he wants to look at all the offerings behind the counter, and I patiently point out the prices. I ask the gal, "What's your cheapest pack?" She was polite and rattled off a few brands. He still wasn't sold. So, I gently guided him away from the counter to allow other customers to go ahead of us. I point up to advertisements hanging from the ceiling.

"That one is $3.85 a pack or $36.50 a carton. It's cheaper to get the carton. Do you want to do that?"

"No, that's too much."

"Pepaw, cigarettes are expensive everywhere. You can save a little bit by buying a carton and getting 10. That makes each pack $3.65. You save 20 cents each."

"No." He shakes his head. "That's more than $3.85."

"No, it's $3.65 if you buy the carton …"

I realized that dementia had erased my dad-in-law's once remarkable merchant math skills. He saw what he saw, no matter how many people told him otherwise.

The battery to his internal calculator had burned out.

I decided the battle was over for the day. I just wanted to drop him off at his residence and go home to my own. I needed to recharge my own batteries.

So, out into the heat we went again where all my plans went up in smoke …

To be continued tomorrow.

Caregiving: Cigarettes will be the death of me - part 1

2010-06-22T00:04:00.002-05:00

If you smoke, I'll warn you right now that this note will likely offend you.

And I ain't gonna apologize.

I can't stand smoking. Cigarette smoke gives me headaches, often migraines. I cheered when Illinois basically went smokeless two years ago. There were places my husband and I never went because of smoke, and now we could go in breathing peace.

Ah, the good life, finally.

Then the universe decided to have the last laugh by giving me the challenge of caregiving for my dad-in-law who smokes.

I lived on migraine pills the April day we packed up Pepaw's belongings in Florida to bring him up here. Every time we stopped for gas, he had to take a smoke break. Everything was unloaded in our garage because I refused to allow that stinky stuff into my house. That was one reason why I bought him all new clothes, which was simply a half dozen t-shirts and a couple pairs of jeans, because that's just who Pepaw is, a very casual man.

He lived with us for 10 days, and we trained him to smoke outside on our porch and drop his butts into a pot of dirt. When we moved him to a retirement center, we showed him where to go outside to smoke. That wasn't always successful because sometimes he'd go elsewhere on the property and deposit his butts among the foliage. I stood right there one day and said, "Give it to me," but he flipped it inside the shrubs anyway. I wanted to scream!

I hate dementia as much as smoking, and when the two intertwine, it ignites a whole new rage inside me … and I just come home and beat my head against a pillow.

Pepaw's dementia also bursts into full bloom when we take him into a store, and he can't understand why cigarettes are so expensive … at least compared to what he remembers, and Lord only knows what year that is. I flat out told him one day that the taxes are so high to encourage people to stop smoking and we'll have a healthier world. That explanation went right over his head and reminded me that logic is simply a waste of time and energy.

Hey, I'm human, and sometimes I forget that reality of dementia.

Last week …

To be continued tomorrow.

One puff and he took our breath away

2010-06-20T04:11:00.009-05:00

At first, I worried about my dad-in-law's desire to just sit in a cozy chair in the yard by himself. But I quickly reversed my fear of Pepaw being "alone." Amid the crowd of two dozen, he could be "involved," yet keep his usual comfortable distance.

Just give the man a pack of cigarettes, a working lighter, sunshine and shade, and he was content. He was happy. He was smiling. He was entitled.

After all, it was his 84th birthday. He was gracious enough to ride four hours to go to my dad and step-mom's house for a family gathering overflowing with strangers. My dad came up to Pepaw as he got out of the van and extended his hand in greeting, "Remember me?" Pepaw shook hands, smiled, chuckled and nodded toward me. Yep, he knew there was a connection … though it may have been my occasional coaching during the long drive: "We're going to my dad's …"

You do the best you can to prepare someone who has dementia. With Pepaw, he could have bluffed his way through anything with his charming smile, and no matter what happens, you make the pledge to not worry.

My step-mom and I had planned for her to get a birthday cake for Pepaw and two other guests who were also celebrating birthdays this week. As my son — one of the other honorees — and my step-mom lit 10 candles, we called Pepaw over and wished him a happy birthday. He simply smiled and accepted a couple of cards as we asked him to blow out the candles.

He took off his hat, took a deep breath and in one targeted blow, extinguished all 10 lights simultaneously. He accepted the cheers and applause graciously.

Not bad, not bad at all for a guy who's smoked most of his 84 years. After donning his cap, he went back to his chair to continue to marvel at the blue sky and the artistry of sparse clouds and smoke another cigarette.

Yes, his one puff took our breath away.

Alzheimer's: who's your banker?

2010-06-18T04:35:00.006-05:00

As my husband Roger and I have ridden the learning curve rollercoaster while caring for his dad, we've accepted one fact: Pepaw isn't so good with numbers anymore.

Thanks to Alzheimer's, Pepaw's checkbook was waaaaaayyyyy off by thousands of dollars, though luckily he had more than he thought. We were able to figure out his banking situation and narrow down his accounts to two financial institutions in Florida, where he had lived for 18 years.

We could tell him how much he had, but he vehemently disagreed as he pulled out a two-year old bank receipt showing a completely outdated figure. We thought he'd be happy to hear he had more than that old amount. Nope. Wouldn't accept our word so we gave up. Let him think what he wants.

However, we were confused when he kept talking about having some money in another bank that we hadn't heard of. Pepaw was adamant he had money in this other institution, but we found no statements or any documents of such a bank.

I kept trying to solve this mystery and finally figured it out the other day while reading online news.

Yep, Pepaw was right: his money was in the bank of Bernanke.

Federal Reserve Chairman Ben Bernanke.

Another thing off my to-do list!

She was still a caregiver

2010-06-16T02:08:00.001-05:00

I came across something I had jotted January 7 of this year. Settling into my snowy, frigid car after leaving the hospital room of my dear friend, Molly, I remember the need to quickly transfer the emotions from my heart onto paper, to capture what I had just witnessed …

She watches and listens to the IV machine pump fluid into her body. Finally, she rests for a little while or at least closes her tired eyes, though you know her brain keeps pace with every rhythmic drop.

She's a caregiver, the spouse of an Alzheimer's patient who now resides in a care facility. His day-to-day care, though he is ambulatory, became too much for her and the family, and they made that difficult decision to place him in a nursing home.

Believe it or not, some people think she's NOT a caregiver anymore now that he is under the 24/7 eye of a facility. But she IS and will continue to be until he draws his last breath. She visits every day, makes sure his medical needs are met, sorts and makes sense of endless and redundant paperwork, and writes that expensive check every month for his care.

Most important, she loves him and shows him that every time she visits … whether she's laughs at his smile or cries in grief at his horrifyingly slow decline.

However, she's an exhausted caregiver, one whose own needs have gone unmet, albeit unintentionally, because she was consumed with worry and his care. She has a devoted family and circle of friends that have pitched in and assisted wherever possible …

My mini-essay ended there. I didn't finish it because Molly passed away two days later as she no longer had the energy to sustain her weakened body.

I can't believe Molly has been gone five months, exactly five months to the day on my birthday last week. My heart still aches at times missing our almost daily phone conversations. I know we'd be talking even more as I have now become an Alzheimer's caregiver for my dad-in-law, Pepaw.

But we wouldn't have depressed ourselves with talking Alzheimer's all the time. No, we would have laughed and talked about LIFE!

Oh, Molly, you would have loved Pepaw! You would have hit it off with this soft-spoken, sweet talkin' Tennessee native immediately! You would have engaged him in conversation just to hear his voice! And I would have smiled listening to the two of you yak the afternoon away …

Oh, Molly, what advice have you been whispering in my ear? Have I been paying attention?

I think it was your voice I heard two Sundays ago when I suddenly knew I HAD to take a day off, that my husband Roger needed to check on his dad and make sure he was eating properly. I had to give myself permission to take Alzheimer's off my to-do list for the day.

And I'm positive I heard it the other day when I checked on Pepaw after lunch. I thought he might want to leave his retirement center for a while and go shopping, but no, he said he was just going to watch TV for the afternoon. I asked if he was sure, and he reassured me with a smile that he was going to take it easy.

So I took it easy, too, and didn't feel guilty because Molly told me it was OK.

I cannot begin to compare what I have experienced in six weeks with what Molly experienced in six years, or what her incredible family continues to cope with today in caring for her beloved Joe.

But the most valuable lesson she taught me was to take care of yourself from the beginning … if YOU want to survive your loved one who has the Alzheimer's. That damn disease doesn't care who else it destroys in the process.

That's become my battle cry since Molly passed away, to educate every caregiver and family facing any catastrophic illness or injury, to pound these messages into them:

Take care of yourself!

Forgive yourself!

YOU cannot do everything yourself!

Nobody will do something as well or perfect as YOU, but it's OK to let them try!

Ask for help!

Accept help!

It's OK to be human!

It's OK to love yourself as much as your loved one!

That gives ME the energy for the coming days. That gives ME permission to be ME.

That's who Roger needs so WE can do this together.

That's who Pepaw needs.

That's who I need.

Learning to care for someone you really don't know

2010-06-04T01:03:00.015-05:00

He was ALWAYS quiet. A long conversation with Pepaw was three minutes. The longest conversation I ever had with my father-in-law was nearly two decades ago when I tried to soothe things over when he disapproved of his youngest daughter's boyfriend.

That talk lasted MAYBE seven minutes. While we stood in his garage, it was the first time he had spoken about what he was FEELING. And I don't remember another "feeling" conversation before or after, even when my mom-in-law, Meemaw, died in 2000. He didn't even say much when he drove me to the airport the last time I visited them in Florida before she passed away. I had been crying all morning, knowing I'd never see her again, and I tried so hard to dry my tears. When he dropped me off and I told him I loved him, he smiled, hugged me and said, "It'll be all right, darling."

After my mom-in-law passed away, I tried for a couple of months to call him at least once a week, but it was a struggle to get more than five or six words out of him. There was always a lot of "dead air," and we all know how uncomfortable that can be. I kept reminding my husband Roger to call his dad to keep the communication going because I've learned that guys can "BS" their way through a conversation without saying much of anything … (And I say that with great love and admiration.)

So, I have to admit that I didn't see Pepaw much this past decade except for the trips I made down there to visit everyone in Roger's family. I couldn't stay overnight at his home because his smoking gave me even bigger migraines than when he and Meemaw used to smoke constantly. We still didn't say much, but on the way to a flea market one day, he told me, when I asked, how his breakfast as a child was a biscuit because his family was so poor …

For five weeks now, since he came to Peoria for us to care for him, I've been studying this man, my husband's father, my son's grandfather, Pepaw. Suddenly, I was responsible for much of his personal and financial care as we begin this journey through Alzheimer's together … and I really knew nothing about him.

I've interviewed probably thousands of people in my career as a journalist and author. But Pepaw … I didn't even know what questions to ask, so I had to observe his behavior and actions and listen when HE decided to speak. He lived in our home for about 10 days before we found a comfortable senior residence to give him his own place and get him around people after he had lived alone for a decade.

I discovered a man who didn't ask for ANYTHING. He thanked us for EVERYTHING, including the scrambled eggs and bacon Roger or I fixed him nearly every morning he was here, as he dutifully ate every bite in silence while reading the newspaper. I knew he wouldn't be talkative because he had eaten alone for years. I got past my distaste for the smell of coffee and made him a fresh cup or two every day. Add a sweet roll and he was in heaven as he softly said, "Thanks, darling."

Though he had packed two bags of his clothing, he said nothing when I didn't even open the smokey suitcases and left them in the garage to air out. He said, "Thanks, darling," as he accepted all new underwear, socks, T-shirts and jeans. We pried away a weathered jacket and let him wear my hooded sweatshirts. He wore those for the first four weeks because he wasn't used to the cold weather here … at least compared to Florida. And that's how he slept … in his clothes, and a hooded sweatshirt pulled up over his cap … not stirring all night long when I frequently checked on him.

I knew he was comfortable, and he didn't have to say a thing to teach me volumes about him.

Just by opening my eyes and heart, I learned that all he needed was someone to take care of him every day … without him ever having to ask or perhaps even fully comprehending — because of the Alzheimer's — that he needed assistance. I explained to two of my sisters-in-law that they shouldn't feel guilty about not recognizing his decline sooner, because Pepaw was always a man of few words and the guy who slept in his clothing for a couple of days. They would have had to spend 24/7 with him as Roger and I did for a couple of weeks to realize something was "not right" and exactly what was "wrong."

And that's how the evil of Alzheimer's infiltrates our lives … It steals our loved ones a tiny piece at a time, like pieces of puzzle that fall off the table and are devoured by dust bunnies and never seen again. We don't really see the missing parts until the whole picture comes clearer into focus …

Pardon me while I wipe my eyes … so I can better see what Pepaw needs today. A cup of coffee? A hug? Coming right up!

Alzheimer's has knocked upon my door

2010-05-26T03:42:00.000-05:00

I wished more than anything that I had been wrong, but I wasn't. I knew too much, but not nearly enough.

As my dad-in-law interacted with the geriatric team last week, my heart ached with every answer he uttered, and my brain quietly tallied his correct and incorrect responses. It took every reserve of energy within me to not jump up and shout, "You know this! C'mon, Pepaw! Get with the program! Prove me wrong!"

Please, please, prove me wrong …

Alzheimer's has knocked upon my door.

I had to let the diagnosis soak in, that Pepaw has Alzheimer's. I had to invite my husband Roger to lunch to tell him the results in person. I hated just saying, "Yes, it's Alzheimer's," over the phone. He knew the answer before he even scooted into the passenger seat of my car. Why else would I make that invitation on this particular day? We talked about it over lunch while it rained outside. Only once did he wipe his eyes and say, "Now, don't make me cry …"

Thankfully we smiled. It was all we could do. I think it was a smile of relief, that we had an answer, that we could prepare for the next question.

Of course, we'll likely never get THE answer to THE question: why?

Yes, Alzheimer's has knocked upon my door … my brain … my heart … my soul.

Everything I've witnessed and learned about Alzheimer's … everything I've written and presented to audiences about coping with this horrific disease … I have to believe it was God's way of preparing me for this day, this news, this journey.

I'm right here with you, Pepaw, ready to be your caregiver, a steady arm when you need it, a pair of eyes willing to look deep within yours when we speak … ready to be the girl you've always called Monty …

Ready to be your memory … no matter how hard Alzheimer's pounds upon our door.

For Mother's Day, my husband gave me his dad

2010-05-09T07:09:00.005-05:00

As Mother's Day 2010 dawns, I look over at my sleeping husband. He really outdid himself this year for my gift: he gave me his dad to help care for.

And I'm smiling because it's probably the best gift of love he's ever extended, other than bestowing the title of mother on me with our now 27-year-old son. Actually, having his dad live with us, because he could no longer live by himself 1,200 miles away, is a gift we've given each other. I'm not denying for a moment that it's been a huge adjustment in our lives to bring his dad here to Peoria.

Yet, without ceremony but with love, I've donned the title of "caregiver."

It's been about two weeks now that we've been responsible for meeting my dad-in-law's day-to-day needs. I've learned how to make coffee and endure an aroma I've never really cared for. I've learned how to finish the scrambled eggs just as the toast pops out of the toaster. I've learned how to time a meal just right based on when he says he's not hungry but 15 minutes later is.

I've learned how to find a new doctor and pull together enough of a health history so the friendly physician has a starting point. I've learned how to navigate medical insurance and question the medication he's been on. I've learned how to speak concisely and loudly as we await the arrival of the hearing aids that we thought we had packed.

I've learned my dad-in-law's strengths and weaknesses and how to work on each. I've learned the things I need to push and the things I need to allow him to do on his own schedule. I've learned more about him in two weeks than I have in the 31 years I've known him as the father of the man I love and married.

Part of me is relieved that we've now found a senior community for him to live just five minutes from us. He needs to socialize with people his own age to thrive, after he's lived alone 10 years since my mom-in-law passed away. We weighed the options carefully and knew we had to try this for HIS welfare.

Yet, a greater part of me is sad that the TV won't be blaring all the crime dramas several hours a day and he won't be shuffling out the door to smoke on the porch and thanking me with a warm smile when I check on him and he says, "I'm fine."

Oops, time to run! Got to get moving to make coffee and muffins for both my men.

Yes, for Mother's Day, my husband gave me a new and meaningful reason to get up every morning. I love you!

"You must write it in first person … your experience …"

2010-04-07T01:04:00.001-05:00

The introduction to my new book that will be released this spring …

Why I Had to Write This Book

After Thanksgiving 2003, I sit at the coffee shop with my friend. While she sips a flavored brew, I nurse icy lemonade and stare at the piles of paper I had brought to share with her.

I called her because I’m frustrated, confused and tired. I can’t make sense out of hundreds of my handwritten and typed pages, and my mind swirls with enough words for a thousand sheets more.

However, more important, I can’t find my focus, voice, purpose in organizing and writing a book about the Holocaust and War Victims Tracing Center of the American Red Cross. It’s too emotional, I explain. I cannot write objectively about the Holocaust and its shocking history, the Red Cross program and all the individuals I have encountered. I confess that I have been changed by this process, and I continue to evolve. I believe that I am a better person because of this, and that’s why I’m writing this book.

After she challenges me to look deeper within myself for the answers, I cannot fend off the tears, which had been building within me for months as I have agonized over this project.

She pats my hand.

“I can go out and buy any book I want or need about the Holocaust. There’s a ton of them out there. How is your book different?”

No one had asked me that. Even I had not stopped long enough to pose that question. Before I can scribble or type one more word, I have to know and be confident of the answer or give it all up now.

I explain that it’s more than the Tracing Center or the Holocaust. It’s about the journey of so many lives, including my own, and the wobbly fence between humanity and inhumanity in this world.

She smiles.

“Then you must write it in first person … your experience …”

And I have.

It’s not always easy to accept new challenges that will potentially enhance our lives and to ignore those that do not carry us further along on this journey …

But I had to, and, more important, I wanted to.

The parade of holiday memories

2010-04-04T01:00:00.000-05:00

He had no idea a holiday was on its way. Alzheimer's does that to a person, robs them of the history of holidays they had always enjoyed and celebrated.

A couple of months ago, I stopped by to visit a friend with Alzheimer's at the care facility where he now resides. He doesn't know me, but it doesn't matter. He didn't know me before he was diagnosed with Alzheimer's, so I certainly didn't expect him to remember me now. I was searching for a new way to engage him in conversation, something that would connect him with the world that still revolves around him.

"St. Valentine's Day is coming up," I said. His eyebrows arched as I continued. "Yes, all the hearts, bright red hearts, candy and flowers. I bet you used to buy your wife flowers for Valentine's Day because you loved her so much."

He smiled and nodded. "Yes, yes."

Hmm, I thought, why not march him through a parade of holidays and seasons.

"Then it will be spring. All the beautiful flowers will start to bloom. And then it will be Easter. Kids love to hunt for Easter eggs. And there was a song called 'Easter Parade.' " Well, he didn't break into song, but he was still maintaining eye contact.

"And then Memorial Day to remember the loved ones and the soldiers who have passed away. You were a sailor in World War II, weren't you?"

"Yes, I was." He sat a little straighter, and his grin widened.

"Yes, you were. And then it gets hot and it's summer. Whew! That old sun will be coming down. And then you know what's next?"

"What?" he asked.

"The 4th of July! A great time to sing patriotic songs." I can't sing, but that didn't keep me from starting a chorus of "I'm a yankee doodle dandy" to see what would happen.

We both smiled as he sang a couple of lines. Yep, those songs can remain deep within us even in the depths of Alzheimer's.

I continued the journey through the calendar … past Labor Day, fall, Thanksgiving and Christmas. I wish now that I had initiated another song for that day but knew his attention span might be coming to an end.

"Then it's Happy New Year! And last week, you know what happened?"

"What?"

"That ground hog saw his shadow, and we've got six more weeks of winter."

"He did?"

"Yep, he did."

He smiled and then looked at his surroundings again, the activity room where others sat, paced, talked or slept … each in their own world controlled by Alzheimer's.

If only we could read their minds. If we could only comprehend what they see and think. If we could only cure this damn disease.

Standing, I smiled and thanked him for allowing me to visit. He repeated "bye" when I said it. He remained in his seat as I walked down the hall.

We had taken a journey that required no transportation or luggage or tickets. In a few minutes, we had walked through a calendar year, a stroll that made him smile and sing a patriotic tune.

Yes, it was a very good year.

"It's a blessing"

2010-04-01T05:11:00.008-05:00

As you get older and your circle of friends grows, you inevitably get more invitations … to visitations. That door opens wider and more frequently when you embrace a group of people with a fatal disease like Alzheimer's.

I attended the visitation yesterday for a sweet gentleman who passed away this week. I remember his smile at the support group meetings when he and his wife, his adoring and devoted caregiver, attended. When the caregivers got together separately, she'd describe the growing challenges, though never complained. Earlier in March, she grabbed our hearts as she wept and described how she had to place him in a care facility because she couldn't give him all the care he required as his disease progressed. Her children saw the toll it was taking on her and reassured her to not feel guilty.

"It was the hardest thing I've ever done," she confessed amid the tears. We listened and hugged her in hopes of giving her the strength to face the greatest challenge of not having him at home with her everyday, the man she had pledged to love, honor and cherish five decades ago.

She had not stepped away from nor forgotten that vow. She had embraced it with greater love and commitment to cherish both of their lives, to give him the 24-7 care he now needed against that relentless, brutal disease, and maintain her own health in the process. And there's not a selfish thing about that when it comes to Alzheimer's. I've watched first-hand it claim the life of one caregiver, and I never want to see that again. No family should have to experience that.

At the visitation, I arrived early and walked into the spacious sanctuary where the family organized itself into an official line, three generations alongside the open casket. When the wife saw me, she smiled and opened her arms to hug me so tight as I expressed my sympathy.

The three words she said with great love and conviction said it all:

"It's a blessing."

Her children echoed that sentiment, that he didn't have to suffer anymore, that they didn't have to watch him deteriorate further, that the faith he had instilled in them was helping carry them through this loss.

Is it inappropriate to say "It's a blessing" when someone passes away after a long illness or a sudden devastating accident? You never know just how fragile the family's emotions are, and you certainly don't want to cause them more grief when your heart has been breaking for them. As an outsider, it's easy to say, "It's a blessing." It's not your spouse, dad or grandpa. Life's experiences have taught me that you probably should keep that thought to yourself. It's best for the family to say that aloud for themselves on their own terms.

I made no apologies as I nodded when she said, "It's a blessing." They were all at peace, and I believe that makes the grief a little more tolerable, though never easy.

Alzheimer's had ravaged this gentle husband, father, grandfather and friend, and was moving on to another family ...

And tomorrow I have another visitation …

Alzheimer's: Bowling me over with memories

2010-03-26T06:13:00.005-05:00

I have a permanent date on my calendar, and it takes a mighty big invitation to make me break it. The gathering at the local Alzheimer's Association office on the fourth Thursday of the month at 4 p.m. is very high on my life's priority list because I spend that 90 minutes with folks I have come to love, those who have Alzheimer's or dementia and their caregivers.

It's informal and fun, this monthly session in which we play games, talk and mostly laugh. Sometimes we go around the circle and answer questions that stir memories and prompt giggles and grins. This week it was indoor bowling, and I helped out as a pin girl, straightening and replacing those big white statues with the big red bow-ties and rolling the ball back to the next bowler.

I definitely exercised my body and mind as I laughed and cheered with everyone else and learned not to groan too loudly when there was a gutter ball. The Alzheimer's staff coordinator said we needed to form a bowling team and get shirts and everything. Now that would be a beautiful sight to see.

As I watched the ball roll over and over, I thought of a couple who would have loved today's activity and probably have laughed the loudest, Molly, my dear friend who recently passed away, and her husband Joe, who has Alzheimer's. I remember the story she told me about their first date. Joe invited her out to a bowling banquet, and it wasn't until Joe kept racking up award after award that Molly realized that he was one of the best bowlers in town, if not the region.

Ah, what a girl does for love! She knew nothing about bowling and immediately enlisted the help of family and friends to teach her the game. And she learned her lessons well, as a teacher often does. Did he ask her to marry him because she acquired this new skill? I think it was probably more than that, but she made this sacrifice to please the man she loved.

And she continued to do that throughout their married life, more than 40 years, to love, honor and cherish the man who loved, honored and cherished her. It was that same devotion that carried her as an Alzheimer's caregiver for several years until her body simply wore out. Talk about sacrifice. There's none greater.

Part of me wants to weep in sadness for missing my friend, but a bigger part of me suddenly laughs as I swear I can hear the big pins crashing in heaven as Molly continues to perfect her technique … as she patiently awaits Joe to join her when Alzheimer's is done with him.

Dear President Obama and Congress … a word about Alzheimer's and more

2010-03-05T04:13:00.011-06:00

Dear President Obama and Congress,

I wanted to let you know that I'm going to be in Washington, D.C., in a few days as part of the Alzheimer's Advocacy Forum sponsored by the Alzheimer's Association. I'll be there to champion the need for more awareness, research and funding to combat what is being forecast as a "silver tsunami" as the wave of Alzheimer's reaches into more and more American families.

I understand you all have a lot on your plate, and everybody is always wanting something from you. There are many important needs and causes in our country and society, many of which I support, because we are a nation of diverse needs. After all, each of us is a unique human being.

However, this is one "cause" you cannot afford to ignore. Alzheimer's is bankrupting our families financially, emotionally, physically and spiritually. Whatever direction our families go, so goes our nation.

Caregiving as a whole is depleting the energy and soul of millions of families, whether tending to the intense daily needs of loved ones with Alzheimer's, stroke and brain injury survivors, and individuals with other catastrophic injuries and illnesses. I've talked to many individuals and families, I've witnessed their struggles and successes, I've cried with them.

I watched the ordeal of caregiving steal the health and life of my dear friend Molly, a devoted and loving caregiver to her husband Joe, who has Alzheimer's and still doesn't understand that this damned disease basically took her life before it takes his. It's been almost two months since she left us, and all I wanted today was to hear her voice answer the phone with laughter and say "Hello Munchkin!"

What am I asking of you, our nation's leaders? Don't cry for me. Put more thought into this country's priorities. Consider more carefully how you spend our money. If you'd only stop wasting precious dollars on politics, political egos and favors, unnecessary trips, meaningless projects, special interests, inflated and useless jobs, corruption and greed, pompous and arrogant attitudes … and I don't have the time, space or patience to continue the list that grows longer every day with waste … just imagine the possibilities and hope that will stand proudly and glow even brighter in the limelight.

As the waves of this "silver tsunami" continue to escalate, you have the chance NOW to commit the necessary funds and best scientific minds in the world to battle this horrific disease. And what we will learn about the brain and body in the process will save far more lives in the future, including our fighting men and women when they suffer a brain injury in protecting this nation.

Am I selfish for asking you for common sense, commitment and compassion? No. I won't apologize for wanting a better world, and an end to the curse of Alzheimer's and other injuries and illnesses that break our hearts and spirit every day.

Remember, this is YOUR family's future, too.

Sincerely,
Monica Vest Wheeler

Alzheimer's: Please don't pass the salt

2010-02-18T02:27:00.002-06:00

I've heard a lot of touching and funny stories about Alzheimer's disease in the last few years. The following is among the most memorable.

A woman told me how her loved one with Alzheimer's seemed eager to help with dinner one night. On the stove was a pot of homemade spaghetti sauce that the primary chef had prepared. She instructed the person with Alzheimer's to simply keep stirring it while she stepped out of the kitchen momentarily.

Returning a few minutes later, the chef thanked the assistant who was still busy stirring. Everything was carried to the dining room table, and the family gathered for one of its favorite homestyle meals. Someone took the first bite of the sauce and started coughing. Yuck! What's wrong with this?!?!?

A quick investigation discovers that the temporary cook had innocently added her own special ingredient: an oversized pinch of epsom salt.

The lesson to be learned from this story?

Never leave someone with Alzheimer's unattended in the food preparation area for safety and to avoid the addition of too many pinches of anything. Your tongue, throat and stomach will thank you.

That Valentine's Day, our hearts were full

2010-02-14T00:01:00.001-06:00

It was the simplest and perhaps truest form of love.

A memorable Valentine's Day was chaperoning my son, who was only 9 years old, when he went out with a girl he called his friend.

You can't get much more stereotypical than this: pizza and soda for dinner (just ice water for mom and dad who are watching their weight), and then a drive over to the ice cream shop for a scoop of anything but vanilla (low-cal frozen yogurt for the chaperones).

The little girl was quiet, her voice barely above a whisper when she talked to us. (Of course, they had chatted up a storm in the car.)

"What pizza topping do you want, hon?"

Whisper whisper whisper.

"I'm sorry, hon, which one do you want?"

We caught it this time.

"Pepperoni."

Her gentleman friend ordered the same pizza topping and soda before they scurried off to play on the video machine. That was a reassuring feeling, handing over $2 worth of quarters to the pair. At least that was still fun to do at this age.

My heart ached and laughed during the evening. In barely four months, my little boy would reach that hallmark of 10. He was sensitive yet caring, quiet yet the socialite, polite yet still a child. He was the blend of our hopes and dreams, and we knew the toughest days were still ahead.

The baby cheeks were long gone, replaced by a handsome young profile and just one dimple when he smiled. His glasses accentuated his vibrant eyes instead of masking them. His eyes were like mine, brighter green in the morning and a more tired shade as the day wore on. His father could always tell when we were tired, just by looking at the color chart in our eyes.

Our son had both of our curly eyelashes that his grandmothers envied. His pudgy little nose was a duplicate of mine, but the mouth was his father's, most often racing in the open gear. Except this night.

His voice was low and quiet, rid of the argumentative tone from the day before, but one I knew I'd hear again. His words were carefully chosen, nurtured, convincing. It was amazing what charm one little lady had over one little man, my little boy.

Then I studied this young lady who had spellbound him. She was quite pretty, dark eyes, a smooth thin face, three inches taller than her escort. But she was a year older.

Yes, my little boy had fallen for an older woman. He was quite taken by her. Notes from her were taped to his bedroom door. Her picture had a prominent spot in a small frame next to his bed. But if you called her his girlfriend, he quickly corrected you.

"She's a friend who's a girl."

Some of the kids teased him mercilessly about his “girlfriend.” It was painful, but I told him to ignore them. If she was just a friend, fine, then be friends and ignore what those other knuckleheads have to say. Of course, that's easier for a mother to say since it had been 23 years since she was that age.

I don't remember much about when I was nine or 10. I was too busy playing softball and basketball with the boys on the playground to pay much attention to nature’s gift or curse of puppy love. I could spar with the best of them throughout grade school and only gave it up in junior high because recess wasn't part of the curriculum.

But all my schooling had not prepared me for a night like this.

The simple act of liking someone was in its purest form this night. The deep-rooted feelings of love are wrapped up in innocence, before it becomes complicated and fragile. But at this age, it is in a delicate state, and warm fuzzies mean a lot. And the fear of rejection starts early.

What I was experiencing watching my young man in action put my feelings in a whole new dimension.

My baby was growing up. He was like a little man. And while I panicked inside of the prospects of him growing up, deeper inside me I felt a sense of relief, of comfort. He was well-mannered, considerate, fun-loving, a listener, a talker, a truly caring human being. Somehow it made me feel stronger and self-confident, that I was doing OK as a parent, as a human being.

It warmed my heart and made me chuckle as my husband and I walked behind them when we left the ice cream shop. They held hands as we walked in the darkness illuminated by the street lights and moonlight.

As we took her home, my son put his hand on his companion's back as if to protect her as he walked her to the door. He gave her a hug, and she thanked me before closing the door. It was short, sweet, nothing elaborate.

The night was a whirlwind that started with a discussion of homework and ended with a hug. As we drove home, we didn't say much. As my son and I unlocked the front door, he looked up at me beneath the floppy hood and orange stocking cap and said, "I hugged her, Mom."

"I know, honey," I said, as I drew him to me and felt the warmest I ever had in the February wind and rain.

"C'mon, mom," he said inside, leaving a trail of winter clothing behind him. "Let's sort through the Valentine's candy."

That Valentine's Day, our hearts were full.

Flying high on Valentine's Day

2010-02-12T03:31:00.005-06:00

I spent most of the night of Saturday, February 12, 2000, on the phone making airline reservations for two days later. Roger and I hadn’t been to the Sunshine State together in nearly seven years. We enjoyed visiting his family at different times, and I still joke that that’s the secret of our marriage: separate vacations. His siblings and parents had probably forgotten what we looked like as a couple.

We had never jumped on a plane for a quick getaway. Now we could, since our almost 18-year-old son was old enough to stay home to take care of the cats and the house and get himself to school without us nagging. Our newly discovered independence was exhilarating.

In anticipation of the trip, I focused on my work all day Sunday and Monday morning, making sure I had finished everything for clients before my week’s absence. Roger ran errands while I made phone calls. As I shut down my computer, he startled me.

“Happy Valentine’s Day,” he said.

I turned to see his familiar smile hidden behind this huge, colorful bouquet. The flowers were gorgeous. Their natural perfume permeated the air. I shook my head.

“Why did you do that? We’re going to be on an airplane today!”

He reminded me that it was Valentine’s Day and that he loved me. In that instant, I felt smaller than my five-foot-one-and-a-half inches. I apologized at my outburst and hugged him. I knew in that moment that I was the luckiest and most-loved woman in the world, all because he had remembered it was Valentine’s Day.

Nobody would keep me from embracing these flowers as I walked through the airport and carried them on board, ready to hold them for more than 1,000 miles. A flight attendant smiled and asked who had given me this brightly colored ensemble of Mother Nature’s finest.

“My husband.” I gestured to Roger ahead of me as we wriggled down the narrow aisle. “He remembered to get me flowers for Valentine’s Day even though his mother just died. We’re on our way to her funeral.”

No mistaking the sudden glisten in her eyes.

“He sounds like an incredible man.”

Yes, he definitely is.

"Grown" men need to cry, too

2010-02-11T01:25:00.009-06:00

A woman described how her husband broke down sobbing after he discovered he could no longer change a tire … a skill that he had mastered years ago as part of the male ritual of learning to drive and routine car maintenance.

Yes, it's a "guy thing."

However, his expression of deep sadness is part of the grief process and accepting loss, and it's okay. He's a stroke survivor, and this is one of those "moments of truth" a survivor must face periodically and work through. It is also a reminder of just how amazing his progress has been since that horrifying day of his "brain attack," what skills and abilities he has reclaimed or reshaped to better fit his new life.

Whether it's a loss caused by a brain injury or a stroke, an individual must recognize new limits and opportunities. Is a woman no longer a "real woman" because she can't perform certain household duties that were once her domain? Is a man no longer a "real man" if he can't perform certain household duties that were once his domain … like change a tire? Absolutely not!

Bless the "grown" man who cries because he's administering a deep cleansing of his soul. He will see himself and the world clearer when his tears dry.

We need the losses to better understand and appreciate the wins. That's not only a valuable credo for survivors but for all of us. If we do not fail occasionally, we will not learn how to savor the true value of success. That's why survivors may need some extra encouragement at times to remind them they're only a few steps from the next achievement …

Like asking for help to change that tire.

The truth and Alzheimer's

2010-01-30T00:35:00.002-06:00

I met someone the other day whose grandma has Alzheimer's. Sometimes Grandma inquires about her late husband. Most family members tell her that he's in heaven.

Should you always tell the truth to someone with Alzheimer's?

I honestly have to say no.

Will it help? Will it hurt? You never know because the person with Alzheimer's could respond a different way every time to the same bit of information.

Here's a story from my book on Alzheimer's that is a prime example of when you should NOT tell the truth:

A few weeks before completing this book, I attended the funeral of one of the clients from the Alzheimer's support group. Cancer had claimed Ed, who also had stroke-related dementia. A few days earlier, his wife, Shirley, had attended the monthly dinner gathering of the support group members. I asked about Ed, and she said he was home under hospice care, and that her children had told her to get out of the house for awhile to see her friends.

I asked Shirley how she was coping. It had been difficult, but she told me that the dementia had been a blessing in a way. I remembered one of the sessions when Shirley described Ed’s reaction to finding out that his cancer had worsened. Then the dementia made him forget. When he heard again later about his cancer, it was like hearing it for the first time, and the family decided not to mention it again in front of him, to not put him through that emotional distress again.

Later that night after Shirley and I talked, Ed passed away with family gathered …

Hard news, tragic news, old news … don't keep repeating it. How would you like to hear that your spouse had died as if you were hearing it for the first time again and again and again because you couldn't remember? Or that you have cancer? Even if you forget, it's still tears you up inside every time like the first time.

Really, what's the harm in just saying, "He's at work" or "She'll be back in a little bit" or "You're doing fine." You're not being deceitful. You're being compassionate.

Sometimes that's the greatest gift you can give to a loved one with Alzheimer's … honest.

Alzheimer's: The wayward banana peel

2010-01-28T01:00:00.001-06:00

We all miss the trash can now and then when our basketball skills get a little rusty. Or sometimes we're a bit lazy and don't feel like bending down to collect what has fallen behind or around the circular file, especially when nobody's looking.

Yes, I confess. I've done it.

However, someone with Alzheimer's may forget where the garbage can is … or only remember where it was kept years earlier as recent memory fades … or as the disease progresses, may not understand the purpose of the trash container. Caregivers or others may find some unexpected surprises. One wife notes:

Found a banana peel strewn under the sink … not where the garbage receptacle is kept. Oh, shoot, now there is something else I have to keep my eyes open for … garbage.

Where's your garbage can now? Is it in a different place than it was five or even 10 years ago? Where was it kept when the person with Alzheimer's was growing up? I don't, but a lot of people keep their can out of sight under the sink.

Alzheimer's steals the habits of our lives, the things we do automatically without thinking, and jumbles them. That's why caregivers often tell me how they find garbage or dirty dishes in the cabinets and the good and valuable stuff in the trash.

Now you know just one of the countless reasons why caregiving is a 24/7 job.

Alzheimer's: "Isn't it time to go home?"

2010-01-26T00:10:00.003-06:00

While visiting a friend in the Alzheimer's wing of a nursing home, I spent much of the time observing and trying to make sense of a disease that makes no sense. My friend doesn't talk much these days, and any conversation really doesn't make much sense. But that's okay because we were interacting and keeping him connected with the world around him … which is this corridor of rooms.

He was in a pretty good mood today, smiling and laughing. He shook his head at the man who continued to get out of his wheelchair, setting off the alarm countless times. The bell didn't phase my friend or any of the others who sat or walked. I knew I'd go mad if I had to listen to it for very long.

One woman mumbled that "It's okay if you want to talk about me" and walked away.

Another woman fretted about her babies, hoping they weren't sitting out in the cold and snow. She asked no one in particular if her babies had been fed.

"Isn't it time to go home?" she asked one of the staff.

"No, not yet," the staff member replied gently.

"Well, when?"

"In a little bit."

"Okay." She was satisfied with that answer and settled into a chair to await her ride home.

The staff member knew she wasn't going anywhere. I knew she wouldn't be leaving anytime soon as this is her home now. This is where this Alzheimer's patient needed to be for her own safety and because she needed the constant supervision that her family could no longer provide. But she didn't need to hear the truth because it would only upset her.

Where would "home" be for someone with Alzheimer's? Is it the place where they last resided? Or is it the only home they can remember, the place where they grew up? No one knows, and it doesn't really matter. Let them "build" their home anywhere they want, and assure them when they ask that they'll be going there sometime soon. That's all some of them need to hear.

A comforting lie can be more powerful and calming than the truth. That's definitely worth remembering when it comes to Alzheimer's.

How do you mend a broken heart?

2010-01-22T04:55:00.008-06:00

It's a BeeGees' classic …

"How do you mend a broken heart?
How can you stop the rain from falling down?
How can you stop the sun from shining?
What makes the world go round …
Please help me mend my broken heart and let me live again."

You can't stop the rain. You can't stop the sun. Thank goodness! If human beings controlled the rain or the sun, we'd drown or burn. It's best to leave those things in the hands of a much wiser higher power.

How do YOU mend a broken heart? Not even the most skilled craftsman, surgeon or seamstress is up for that challenge. Mending a broken heart is an inside job accompanied by an abundance of love and understanding from those who surround us. Yes, we are the only ones who feel what we feel … The tears, anger, guilt, pride, stubbornness and grief, all focused and locked inside us, can impair our vision so much that we do not see what the exhausted or broken heart is doing to our bodies and minds and spirits.

Are you or do you know someone who is a caregiver to a loved one who has Alzheimer's, or has had a stroke, cancer or other catastrophic injury or illness? Have you lost someone you loved with all your heart? Has your heart been broken?

Are you afraid to say, admit, acknowledge or ask for help to "Please help me mend my broken heart and let me live again"?

Sometimes we do not know what is best for us when we are bogged down by the tears, anger, guilt, pride, stubbornness and grief. Sometimes we don't see what's happening to us when we look in the mirror. But others do and when they tell us what they see through their eyes of love, we don't want to hear or believe it.

We cannot make this journey of life alone or with only one person. We were created to be here for and to lift each other when we don't realize we need many spheres of companionship and love to fully experience life. There are more genuine open arms to embrace us and shoulders to cry on than you can begin to count.

No one will ever take the place of someone we love, whether they have been affected by a debilitating condition or have passed away. But we can be enriched more than we ever imagined by allowing a circle of friends, family and even strangers to each bring their own little repair kit to help put us back together again.

That's how you mend a broken heart because you can't do it alone. And those we lost and those we care for would certainly want us to live again.

Grief: How do I take my own advice?

2010-01-11T06:01:00.009-06:00

I write about it, I talk about it … now I have to weigh the value of my own words.

I lost one of my best friends Saturday. I was not prepared for Molly to … die. I was prepared to help her when she would get home from the hospital. She had scribbled a grocery list, and I promised to do the shopping when she was released, when she got the OK to go home where her frisky and loving dog awaited her return.

I wasn't prepared for her to leave me after the countless hours we had spent together in the last three years … all the phone calls and emails that we had shared. All the laughter and tears we had exchanged and absorbed. All the conversations we had had about the REAL challenges of Alzheimer's and life itself.

Molly was a retired kindergarten teacher and an expert on Alzheimer's … a caregiver for her husband Joe, a devoted wife, mother and grandmother. She didn't need a variety of credentials to earn the expert title. She opened her heart and home when I was working on my book about Alzheimer's. She bared her soul when the pain of caregiving was real and let me know if I really "got it" or if I was full of crap when I put it all down on paper.

I got personally involved because I couldn't help falling in love with Molly and Joe and their kids and grandkids. They weren't one of those statistics. They were a real family with real challenges, and Molly gave so much of her time and energy to helping and motivating and inspiring and consoling other families. That literally took guts and passion, and rarely will you find someone with all that and a smile when you really needed it.

As my husband Roger and I embraced and sobbed upon the news of her passing, he whispered that she was the "Unsinkable Molly …" Yes, she was unsinkable, unstoppable and a whole Thesaurus of those "un" words. However, it was unthinkable and unimaginable that her tired body would be unable to continue the journey.

She told me of life's challenges along the way and how she would resolve them: "Just something Molly needs to walk herself through, with the help of God and friends!"

I console myself with my own advice to continue celebrating her life while giving myself permission to grieve, to allow the tears to flow and not apologize when I have a "Molly moment."

Yes, life would be much easier, or let's say, less complicated if we didn't allow ourselves to bond with others. It's safe not to get involved or not to care too deeply. It's hell to lose someone you love, but I wouldn't give away this pain for anything if it meant I couldn't have had Molly in my life.

The joys and the wisdom she gave me and the world will far outlast the tears and the emotional and physical pain of loss that will consume me now and in the immediate future as I, like Molly had, walk myself through, with the help of God and friends.

She once wrote me after one of my blog entries: "I hope this is read by a lot of people as a story like this can educate many. What an educator you are and to think I know you!"

No, Molly, what an educator YOU were and to think I knew YOU!

Alzheimer's: What will a new year bring?

2010-01-05T00:04:00.001-06:00

As 2010 dawns, millions of families who have loved ones with Alzheimer's, dementia or memory loss have to wonder: What will the new year bring for mom, dad, spouses, siblings, friends …

What will it bring for any of us?

Nobody knows. But with something as complicated as Alzheimer's, you can't predict 12 minutes from now, let alone 12 months.

However, families can be sadly assured that they'll discover a lot of rude awakenings as the disease progresses. One of the biggies is what their insurance and Medicare will and will NOT cover, specifically for Alzheimer's medications, assisted living and skilled nursing care. It's brutal to hear again and again, "Sorry, not covered."

That's one of many reasons why those families that are still in denial about the facts of this disease and how it's affecting them may actually need some rude awakenings … so that they can confront this challenge with open eyes. I don't say that to be cruel, rather to educate those who don't fully comprehend the unpredictability of Alzheimer's.

Commit to memory today the need to remember tomorrow.

The gift of a Midwest winter's seagull

2009-12-25T04:34:00.008-06:00

Noon Christmas Eve, Peoria, Illinois …

I had to go out and pick up sliced cheese for an evening gathering. I'd have to join the long lines of other absentminded, last-minute shoppers. Bah humbug …

The gray on gray sky dumped seemingly endless raindrops on our heads here. And we were thankful it wasn't the snow the folks north, west and east of us were enduring.

For Christmas this year, I sent my wonderful and deserving husband Roger to spend the holidays with his family in Florida. Hmm, I guess it's the first time in 34 years that he and I haven't been together on December 25. Just realized that.

On the wet drive to the grocery store, I thought about families I know who are going through their first major holiday this month after the loss of a loved one or other difficult circumstances …

The husband, father and grandpa who is spending his first Christmas in a care facility because that wicked Alzheimer's took too great a toll on his devoted spouse and caregiver.

The two kids and widow who are spending their first Christmas without their fun-loving dad and husband because of merciless brain tumors.

A woman marking Hanukkah for the first time without her mother, one of her best friends, a source of courage, strength, inspiration and a gentle sense of humor.

The mom and dad who accepted the heartfelt gifts of ornaments from friends to decorate a tree in memory of their son, to tell the joyous story of a young man who left this world far too soon.

The widow who tries to understand why her husband passed away very unexpectedly from a heart attack, yet rejoices that her son in the military is home safe on leave for the first Christmas in several years.

As I waited on endless traffic in pursuit of mozzarella and swiss, I also recalled the glorious firsts I had witnessed this year …

The stroke survivor who sang "Amazing Grace" at stroke camp this fall and left all of us weeping and applauding.

The stroke survivor who climbed the wall higher at stroke camp than he did last year and earned a rousing cheer from everyone in the gym.

The stroke survivor who is learning to talk again by singing.

The young man at brain injury camp who got to dance again for the first time since an auto accident that also killed his brother.

The family with a loved one who has Alzheimer's and is finally pulling together to face this challenge.

As I pulled into the parking lot in search of a space, I again felt the hugs from just a few days earlier of my mom, dad and step-mom as if I were back home in Indiana hearing their words of love, support and how proud they are of me.

Then I suddenly remembered it was my mom-in-law's last Christmas 10 years ago. I was sad for an instant until I remembered how she was the poster child for the holidays, full of laughter and love and how she accepted a gift of dishtowels as if it were diamonds. She had loved seagulls and passed away in Florida, where she had always longed to live. Many a time, a seagull has suddenly appeared in my life to reassure me she's fine and still with me.

As a wave of loneliness threatened to dampen my spirits, I whispered, "I sure do miss you."

And as if I had been instructed, I suddenly looked skyward through my windshield and the rhythmic flipping of the wiperblades. Here in the Midwest winter sky flew a seagull.

Miracles happened! I RELAXED in a packed parking lot on Christmas Eve! I DIDN'T MIND standing in line for sliced cheese! I HUMMED all the way home amid the idiots who can't drive!

However, most important, I was overwhelmed by a deep sense of gratitude for all the individuals and families who have shared with me their soaring successes and shattering sorrows this past year. Each has taught me incredible and priceless life lessons so that I can translate them into the words I share with new audiences and friends, people who seek only a little compassion to cope with the everyday challenges of Alzheimer's, strokes, brain injuries and a growing number of catastrophic life events.

Do they have any idea how much they have inspired and enlightened me? How they've comforted others who face similar challenges?

"Thank you, Janice," I told the seagull flying overhead. "Merry Christmas."

Smiling, I then wondered how I would explain to Roger how his mom was up here visiting me while he was in Florida with the rest of the family. Oh well, she had always vowed she'd take me in the settlement if he and I ever divorced …

To Dax, who has decorated our hearts and souls

2009-12-20T00:02:00.000-06:00

In our community, there's a little two-year-old boy, Dax, who is losing his battle with cancer, despite the best and untiring efforts of his parents Austin and Julie, St. Jude Children's Hospital, and a growing circle of caring individuals. However, he's won the hearts of thousands of families around the world who have responded to a simple request to "Decorate for Dax." People were encouraged to put up their holiday decorations early this year and send photos so that he could enjoy the beauty of Christmas … if his tired little body gives up before December 25.

You can drop them a note of support at http://www.decoratefordax.com or make a donation to St. Jude in Dax's honor. I felt compelled to send the following message to Dax and his incredible, loving parents … and to remind myself just how precious life is:

To Austin, Julie and Dax,

As I've followed your heartbreaking, though inspiring, journey, I'm reminded of Margaret Mead's quote: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." I think that term "group" translates to "family," YOUR family. The three of you have changed many worlds, many lives in ways that are impossible to measure. You've reminded us of the real definition of love, compassion, courage and sacrifice. You've educated us in a classroom that is larger than life, touching a part of our souls that we didn't know could be stirred so deeply.

To Dax,

I think this well-known song was written just for you as you have inspired so many families to light up not only their homes, but their hearts:

This little light of mine
I’m gonna let it shine
Let it shine, let it shine, let it shine

Keep shining, Dax, and continue to give your mommy and daddy the light that will lift and comfort them forever. You and all your dear little St. Jude friends have redefined the word "angel." How so very blessed we all are to know you.

Stroke: Are survivors self-centered?

2009-12-08T11:00:00.000-06:00

The first time I heard it in a stroke caregiver support group meeting, it surprised me. I leaned in closer to hear more and understand why it was a hot topic.

"All he cares about is himself."

Oh yes, it was hot enough to light a fire in this group.

While it may have seemed like an odd thing for a caregiver to say, most of her peers agreed without hesitation that their survivors have become self-centered, “Because it’s about me. I’m the one who had the stroke.”

Wow. Some tough food for thought to chew on. That statement speaks not just volumes, but libraries, about the changes a stroke can bring about.

Just remember that this isn't a blanket statement because every stroke, every person is different.

How about …

I don't think anyone will dispute this one: Survivors must focus on themselves to survive. They've got to muster every bit of energy, willpower, love and faith they have to simply live. We wouldn't expect any less of ourselves or a loved one.

And I don't think anyone will dispute this one either: Survivors may need assistance at times as they relearn certain skills, but some may also need to relearn the art of patience … or they risk burning out their caregiver or loved ones.

No wonder it's such a hot topic.

Alzheimer's: An “ordinary” conversation

2009-12-05T00:02:00.000-06:00

Overheard … an “ordinary” conversation between a husband with Alzheimer’s and his wife …

Wife: “Why are you so physically fit? Where do you drag me every single day, where I don’t want to go?”

Husband: “What do we do? In the morning. Where are we?” He laughs.

Wife: “Where are we at 5 o’clock? Where did we go?”

Husband: “Yes, we did. We went someplace. Oh yeah. We went to the …” While shaking his finger trying to remember, he grins.

Wife: “The gym.”

Husband: “Yes, we go to the gym almost every day.”

Wife: “We do every day. Not almost. I hate it with a passion though I know it’s good for me.” She vigorously shakes her head. “He’s gone for years. You start slow and you work until it gets kind of boring. What’s the first thing you do? Where do you go?”

Husband: “I go take off my shoes.” He laughs again.

Wife: “Not your shoes. Your coat. What piece of equipment do you go to first?”

Husband: “Okay, piece of equipment, that’s very, very easy. It is … I don’t know, what is it?”

Wife: “You walk. It’s called a treadmill.”

Husband: “Ah yes, treadmill. That is the first thing.”

Wife: “Then where do we go?”

Husband: “After that, we go hide.”

Wife: “You do that later. Where do you go after the treadmill? You sit down.”

Husband: “I do?”

Wife: “You pedal. What’s it called?”

Husband: “I don’t know.”

Wife: “You go on a bike.”

Husband: “Stationary bike.”

Wife: “Excellent! Then where do you go and hide?”

Husband: “I go and hide inside and work with you.”

She says he goes on the toning table and sometimes falls asleep.

Wife: “Then you join me and what do we do in that room?”

Husband: “Nothing much.”

Wife: “Geez, this is not a good day.”

Husband: “I think we do well doing what we do. I’m satisfied with it.”

Alzheimer's: Why we cannot judge others

2009-12-04T00:02:00.000-06:00

While working on my book about coping with Alzheimer's, I interviewed a woman who quit visiting her mother in the nursing home because her presence agitated her mother. She chose not to visit in person but that didn't keep her from calling regularly to see how she was doing.

This is a poignant example why we cannot judge what another family does in caring for a loved one with Alzheimer's … unless it's obviously something inhumane or life-threatening. I remember one caregiver's statement that a neighbor quit speaking to her because she had made the difficult decision to place her husband in a nursing home. I used this example in my presentation to a group of caregivers and how the neighbor had no idea what this caregiver had sacrificed emotionally and physically to take care of him as long as she had.

Many, many caregivers go many, many nights without adequate sleep or help, leading to total exhaustion that is not only dangerous for the caregiver but for the loved one with Alzheimer's. And there are many, many caregivers who still visit their loved one daily after they make that difficult decision to place them in the care of an institution. It's never easy but sometimes becomes a case of survival.

No one knows what each family must do to cope with Alzheimer's. That's why we've got to listen and pay attention to caregivers … and make sure we're not ignoring or missing a cry for help.

Brain injuries: Best of intentions paved with pain

2009-12-01T01:15:00.006-06:00

Her voice was soft, and I listened carefully. Her message was too important, and I didn't want to miss a word.

The woman was in an auto accident several years ago and sustained a brain injury that forced her to slow down. Her doctor told her she'd be walking again on her own within five or 10 years. She struggled with a walker and put all of her energy into learning how to walk but still had to rely on a wheelchair to get around most of the time.

Well-meaning friends thought she would be more "motivated" to walk if they took away her wheelchair and left her to move with only the walker.

She fell.

She fell again.

She fell again and again and again …

She thought her hip had broken on the last of eight falls. The doctors told her she didn't have one fracture: she had a half-dozen.

And modern technology finally revealed a spot on her brain stem from the accident that explained why she had not been able to walk. Add that to the destruction to her hip …

My heart simply broke as I fixated on her beautiful eyes.

I thanked her for sharing that difficult story. I told her it would help other people understand that what they consider "excuses"—depression, laziness, self-pity, or lack of motivation—that keep someone with a brain injury from making progress, can't be blamed. There are some injuries that can't repair themselves immediately or sometimes ever.

Yes, there are times and ways to challenge someone to improve … having them pick up something on a table to sharpen motor skills … letting the survivor keep trying to find the right word to make a request … but not removing a vital tool of their movement, something that keeps them as independent as they can be.

I asked if I could push her in her wheelchair out to where the bus with the lift waited to take her home. The sweetest smile and nod were a gentle and appreciative "yes." I told her I loved her "thumbs up" button she wore on her colorful holiday sweatshirt. She explained that it came from Disneyland where friends saw Mickey Mouse's familiar hand—the thumb and three fingers—giving this positive sign and immediately thought of her because that's who she is.

And the "thumbs up" she gave me in the chill of the night as I said good-bye was enough to warm my heart far beyond the distance I had to walk to my car.

I think I'll be carrying that around for a very long time.

'Tis the perfect season.

High school loyalty: that strange emotion that sustains you for the duration and then lingers all your life

2009-11-24T00:04:00.001-06:00

Searching for my favorite red or green shirt to wear to the Anderson High School basketball game in Indiana on November 28, I stumbled across a box of old newspaper clippings. It included stories about the fire that destroyed the old school in 1999.

I sighed as I remembered the call about 4 p.m. that day …

“Monica,” my friend said, “our high school ...”

I can’t remember if she said, “is burning” or “is on fire.” The conclusion was the same: Our high school was gone.

While visiting my Indiana hometown just two days before, I had driven by the familiar structure several times. It stood empty, yet overflowed with memories. The proud Indian on the gymnasium made me hold my head up a little higher as it always had. That says a lot for high school loyalty, that strange emotion that sustains you for the duration and then lingers all your life.

I may live more than four hours away, but I’m still an Anderson High School Indian, proud of it even when that kind of mascot may be deemed politically incorrect nowadays.

Pardon me, but tough, please get over it.

We treated this symbol with great reverence and still do today.

Even the school song might be considered sexist today: “Let’s give a rah for AHS boys ....”

Pardon me, but tough, please get over it.

It’s an old song and that’s the way it was.

The world’s a different place than when I left in 1976, during the bicentennial of our nation and as part of Anderson High’s 100th graduating class. Talk about a year! We were overwhelmed with the patriotic red, white and blue, and the symbolic red and green school colors. The 25,000th graduate was a member of our class. It was an emotional time, personally and in the life of a building, of an institution. Though I had tired of 1776 bicentennial minutes that were part of the morning announcements, I loved reading our school’s history. That was something I could touch, something I relived in the trophy cases I passed every day, a new chapter of history I helped create during my years there.

I worked on the school newspaper in a cluttered, yet comfortable cubbyhole in the basement. Newspaper ink was injected into my veins early on and became my profession, thanks to the persistence of the tough, yet tender, Mr. Pursley. He taught me the value of truth and why that freedom must be preserved. I learned from the creative writing teacher, Mrs. Maine, the beauty of words and how they can change lives. She was right.

And it was to the literary magazine of my senior year that I turned the morning after the fire. It contained a red, flimsy record of the “Sounds and Scribbles of Anderson High School” that had been inserted into the 1976 issue. It had been quite an ambitious undertaking at the time, but has become one of my most precious high school memories, especially now.

It was then that the next stage of grief hit me, the tears, when I watched the red plastic spin the sounds of my life 23 years earlier. From being a lost newbie to watching the beautiful Indian mascot and maiden ceremony, all those powerful memories returned.

Along with the first day of my junior year when I met the lanky senior I would eventually marry.

Through my tears, I smiled. Holding hands on the way to class, being admonished by an administrator for kissing in the hallway. Hey, what did he know about young love! This was high school, man! It was more than books and learning, it was a place to have fun. It was more than bricks and mortar, it was a sense of belonging, a sense of community. I was grown-up. I was in high school. I was an AHS Indian.

I’m still an AHS Indian, as I will be the rest of my life. That high school pride is pretty powerful stuff. I was saddened by the closing of the school and then the fire. Both evoked precious and frivolous memories, the heart of who I was then and who I am today. That’s true for anyone, no matter what high school you attended.

Today, I’m still happily married to that senior boy, and we celebrated our 30th wedding anniversary this year. Our son followed in his mother’s footsteps by graduating in a memorable year, 2000, though from Peoria High School, which reminds me so much of Anderson.

No matter how the walls have tumbled, what the flames have tarnished, or what the bulldozer swept away, a part of my heart will always reside at the corner of Lincoln and 14th streets in Anderson, Indiana. Add my portion to the loyalty of thousands of graduates who shared the heartache I experienced, and the invisible shrine will endure far longer than the brick and plaster that succumbed.

Yes, high schools are buildings, but it’s the people who bring them to life. We don’t see empty halls. We see crowds of individual students. We feel the cold metal of the lockers. We hear the rushed conversations between classes. We smell lunch being prepared or cookies burning in home ec. We taste the uncooled water in the water fountain.

Yes, it was a very good time, and a very bad time. Few of us would care to relive those teen years, but that’s why high school memories are so selective and so precious. Like the song says, I’ll be true to my school. My school song overflows with a message that never changes in that sentimental and spirited tune we imbed in our memories. My heart will continue to sing ....

Let’s give a rah for AHS boys,
And show a spirit seldom seen;
Others may like gold or crimson,
But for us it’s red and green.
Let all your troubles be forgotten,
Let high school spirit rule;
We’ll join and give a royal effort
For the good of our old school.

It’s AHS boys, it’s AHS boys,
With colors red and green so dear;
Come on you old grads, join with us young lads,
It’s AHS now that we cheer, RAH! RAH!
Now is the time boys, to make a big noise,
No matter what the people say,
For there is naught to fear, the gang’s all here,
So hail to the AHS boys, hail! RAH! RAH!

Alzheimer's: Just live in THEIR world!

2009-11-22T00:05:00.002-06:00

Make it easier on yourself and everybody else and don't argue with someone who has Alzheimer's. If you do this or know someone who does this, stop it right now!

If they say the sky is green that day, then you know what? The sky is green!

A woman told me the other day how her mom keeps arguing with her grandma when grandma says she's waiting for HER mom and dad to pick her up. The mom keeps arguing that they've been dead for years!

STOP IT!!!

Seize this opportunity to say, "How wonderful! What time will they be here? Where will you go today? How are they?"

You get my drift … right?

Use that as an opportunity to witness the childlike wonder and excitement in their eyes. Find out more about their parents and their childhood. The possibilities to relive that special moment are limitless!

Don't argue … enjoy!

Alzheimer's: Tap dance memories

2009-11-21T05:13:00.008-06:00

Friday morning …

As she descended the steps of the bus at the adult day care center, I studied the woman's thin frame and how she greeted my companion with a smile. As she was introduced to me, I held my hand out to take hers.

"Ooh, your hands are warm!"

Laughing, I wrapped my other one around hers and gently rubbed some of my warmth into hers. And hand-in-hand, we entered the building as I noticed she had some vision problems.

"It's getting cold," she said. "I don't handle the cold as well as I used to."

"Well, today's warmer than usual for this time of year. I brought you some sunshine from Peoria, Illinois."

"Lovely!"

My companion explained to me how this woman had been a tap dance and ballet instructor for 52 years.

"Fifty-eight years," the petite woman corrected with a smile.

"Oh my goodness!" I said. "I took tap dance when I was a kid."

"Why didn't you continue?"

I smiled and explained how my interests had changed.

I let her join her friends and the staff and volunteers as they indulged in some freshly made pancakes.

Smiling, I observed this mix of about eight attendees, several of whom have Alzheimer's or dementia. My new friend, the dancer, was among them.

A staff member told me how this woman was a fixture in the community with her dancing expertise and how she had led a couple of programs during her time at the center on dance techniques … and how she still had the swing in those hips.

And she also had macular degeneration and was losing her vision.

Fast forward to Friday afternoon …

As I led a presentation for caregivers about coping with Alzheimer's, I noticed the frequent tears of a female attendee. Though it broke my heart, I stayed on track and completed my talk. At the conclusion, this woman came up to me. Before she said anything, I asked, "Can I give you a hug? I could tell this was tough on you."

And she let me hug her thin frame.

She said she was trying to deal with the challenges of her mother's Alzheimer's. It wasn't easy at times as her mother was a strong woman who knew how to command attention, especially after being a dance instructor most of her life.

"Is your mom …" I asked, saying the name of the woman I had met that morning.

"Yes." She was surprised.

I laughed and described how her mother had questioned why I hadn't continued my tap dancing lessons.

Yes, that was her mom.

I'm reassured of my belief that there are no coincidences in the universe. A family facing memory loss had unknowingly given me a special memory … and transported me back to the echos of those silver metal taps on my shoes across the wooden stage … the colored ribbons that replaced shoe laces, my stiff hair-sprayed head, the body suit costume and my brightly red painted cheeks so that I glowed on stage …

Yes, they had tap danced their way into my heart …

Alzheimer's: The ones who are forgotten

2009-11-20T00:02:00.002-06:00

After I spoke at an Alzheimer's workshop recently, an RN in an Alzheimer's care unit came up and thanked me for my presentation, especially the part about how there is still a human being inside the shell of those with this horrible disease. She said she is particularly drawn to those patients who haven't had a visitor in years or simply have no family anywhere. She takes them into her heart as family.

I found that very touching. These are the folks who are truly forgotten. And there are some families who leave their loved one at the nursing care facility and never look back. Why? Everyone has a reason.

In my presentation, I talked about the need to remember to interact with someone with Alzheimer's, even in the latest stages. Interaction can be as simple as a smile or wrapping your hand around theirs or brushing their hair. We humans were created to be engaged with each other in many ways even when we have no memories left to share.

That's another reason I so admire those who work in hospice or like the RN previously mentioned who takes a few extra moments to shine her own light upon the faces of those patients who have no one or have been forgotten, whether it's Alzheimer's or any other condition that takes an individual into their final days on this earth.

Let's remember not to forget.

Alzheimer's and that mean old man

2009-11-19T00:37:00.002-06:00

Meeting him for the first time on this particular day, you might think he was a "mean old man" if he scowled at you or called you a obscenity.

However, if you were introduced to him the day before or after, you'd likely be charmed by his infectious smile, wink, laugh or the funny faces he makes behind somebody's back. It could even be as little as an hour or five minutes earlier or later …

It's that damn Alzheimer's disease that creates those instant and heartbreaking transformations. It's that damn disease that steals the essence of the man he used to be, our husband, dad and grandpa.

It's Alzheimer's that shrinks his world and keeps him close to the comfort of familiar surroundings. Luckily, he's not one of the estimated 6 in 10 who are wanderers. He's content to sit for hours and observe the world that continues to swirl around him. Occasionally he'll shake his head at the odd or not-so-odd doings of others. He savors his glass of grape juice as if it's a fine wine.

It's just another day in the world of Alzheimer's … where he could be either the mean old man or the sweet old man …

We don't want either. We just want our husband, dad and grandpa back.

Alzheimer's: A kiss and candlelight

2009-11-18T00:09:00.008-06:00

I attended the candlelight ceremony at the Alzheimer's Association office to remember those who had passed away from this horrible disease and to comfort those who still battle it. I took a candle, encircled by purple paper to protect my hand from dripping wax, and listened to the lyrics of a song about the pain created by Alzheimer's, the loss of companionship and all the things that make a loved one so special to us. I also focused on a poem read by a caregiver about missing the everyday joys.

As the staff lit our candles, I listened to the names of those who had passed away in the last year, some I knew, most I didn't, yet knew they left a unique circle of grieving family and friends behind. After staring into the glow of my candle for several moments, I gazed around the room. I observed …

The arm wrapped around a loved one in comfort.

The shaking shoulders of a man who wept silently over the loss of the love of his life.

The woman who sniffled and wiped her eyes as she remembered her late husband.

And the couple who sat in front of me.

The wife has Alzheimer's. From my seat, I could only see her face, but she looked into her husband's eyes with such intensity, and then their foreheads gently rested against each other, to give comfort, strength and love as his arm wrapped tightly around her. They lightly kissed and whispered something I did not, nor attempt to, hear because the love, fear and uncertainty in her face spoke far more volumes to me than any words.

I'll forever remember that kiss in the candlelight … an indelible reminder of how precious and powerful love can be. Sometimes it's the only prescription for this damn disease as we continue to pray for a cure and end to its cruelty … please God, open our human eyes, hands and minds to find the means to beat this NOW!

Stroke: I could have watched them dance all night

2009-11-11T07:31:00.001-06:00

At first, I chuckled when I finally noticed after two years just how short Marylee was compared to her husband John. The evidence was clear as their arms wrapped around each other to slow dance as the chorus of performers serenaded couples with the sentimental favorite, "I Can't Help Falling in Love with You."

Then I simply smiled because, after a stroke, every dance is a celebration, no matter who leads or who follows, who stands or who sits, who laughs and who cries. It's such a beautiful scene to witness.

It takes a lot of love, commitment, sheer determination, compromise and a healthy dose of stubbornness for a couple to survive the challenges of a stroke. Sadly, not all marriages or relationships make it.

It's not easy, but Marylee and John have learned a lot and taught each other much more since John's stroke eight years ago, and continue to do so every day. So had the other couples here at Stroke Camp—that John and Marylee founded—couples that partnered well despite what may be the survivor's weakness or slowness or how they learn to sway to the music again. All that mattered was that two hearts were intertwined, that they could enjoy the beauty of a dance among new and old friends, a simple pleasure most of us take for granted, but a rare treasure for those fight their way back from a stroke.

Yes, I could have watched them dance all night all because I couldn't help falling in love with life again.

(Find out more about Retreat and Refresh Stroke Camp at www.strokecamp.org)

It's OK to cry at funeral homes

2009-10-30T04:08:00.004-05:00

As I get older, it seems like I'm attending more visitations and funerals. One of the most noticeable changes has been the informality during the block of hours in which families accept friends of the family and/or deceased. Whereas I remember the quiet, solemn lines of folks dressed up with nary a whisper, the visitors are much more informal these days, conversing, smiling, even laughing and many times attired in comfortable everyday clothing, including jeans. Visitations and funerals have become family gatherings, almost like a reunion in the park without the baked beans and hot dogs.

After standing in a particularly long line this week for a dear friend beloved by many, I, too, was one of those engaged in conversation about the everyday stuff and embracing some friends I hadn't seen in a while. I actually welcomed the "distractions," because a part of my heart deeply mourned the loss of this friend. I had already shed several tears and hoped to make it through the line without succumbing to them again.

However, about six feet before my husband Roger and I reached the family to extend our condolences, the pain of loss again attacked my tear ducts and released the waterfall. As it was now our turn, I smiled and told the family with a smile that I was trying to regain my voice to console them on their loss. They smiled and shared the tissue box they kept close at hand.

At first, I felt kind of silly, because in the growing crowd, I didn't see anyone else shedding tears. But I suddenly didn't care as Roger and I reached the open casket, in which my dear friend was now finally at rest. My tears fell as steadily as Roger's hand that patted and rubbed my back in comfort.

The emotions that decorated my flushed face were evident as we exited past the growing crowd, but I didn't care. I decided to take my own advice that it's OK to cry when something far more important tugs deeply at your heart and soul, especially the loss of someone who had given my life so much love and inspiration.

It's OK to cry at funeral homes. The operators understand … and they also buy tissues in bulk for people like me.

Thank you, thank you.

Alzheimer's and stroke: Two beginnings

2009-10-22T00:03:00.001-05:00

The warm wind tossed the fading leaves, still rich with Mother Nature's brilliance, on the quiet road back to the spacious and sprawling one-story structure. The sun snoozed behind the clouds, yet emitted enough warmth to make this a beautiful and comfortable fall day, enough to make it memorable before cold winds intrude.

It was just a normal day at this building, called a nursing home by some, healthcare facility by others, simply home to yet others. Despite the usual daily routine, everyone had a tale to tell. However, I knew the "rest of the story" behind two of the stories on this day, both of which I choose to call "beginnings."

The first beginning featured the celebration of determined and slow, but steady, progress in recovery from a stroke. The woman had a massive stroke about a year and a half earlier. She's now engaged in trying to recapture her ability to speak and walk as her feisty attitude leads the way. Her face speaks volumes with smiles and eyes that roll when someone says something silly. She and her family are mastering the skills of transporting her in and out of the van under the careful eye of the physical therapist. Once she is inside, everyone is pleased, and as she goes for a ride, her grin replaces the lazy sun.

Every day will be a new beginning for this woman as she relearns the basics of everyday life to reach new definitions of independence. She and her family understand the reality of a stroke and how she'll be recovering and gaining a new experience every day of her life.

The second beginning featured the journey that another family had been dreading, the day in which their loved one, the patriarch, husband, dad and grandpa, could no longer be cared for at home and had to settle into these new surroundings. Alzheimer's had assaulted him and the entire family. That horrid disease had continued to destroy this man's brain to the point where he refused to cooperate in the simplest chores of everyday life, and the family's energy and efforts had finally succumbed to exhaustion.

Every day will be a new beginning for this man who has no memories of the love of and for his family and friends. His family understands the reality of Alzheimer's and how its cruel grip continues to rob him of something every day of his life.

The first family has started a new chapter in saying hello, while the second has begun the newest chapter of saying goodbye.

And the ink will continue to flow.

The cruel voice of Alzheimer's

2009-10-15T03:04:00.003-05:00

A caregiver shared with me this short, yet sad, description of a recent evening with her husband who has Alzheimer's:

"He asked for quiet last night - he was tired of my voice - so shut up. I did and turned the lights and TV off at 7."

Yep, persons with Alzheimer's may throw those kind of curves at you when you ask the simplest of questions, "Are you okay?" or say "That was interesting" or "Let's eat some dinner" or even "Hello."

Sometimes you speak to hear a human voice, satisfied even if it's only yours.

Often I get tired of hearing motivational speakers tell us that we completely control how we respond to outside stimuli, you know, what people say and do. Yes, we can filter out a lot of junk and should, but some slips in when we least expect.

We can rationally blame the disease, but it still hurts at a point far deeper than we can fathom. It's that darn result of being human.

So, if the person with Alzheimer's wants quiet, give it to 'em. You can accept it as a gift to allow your own mind to rest after a long day … Or you can close the door and go somewhere else in the house and do whatever you want.

It's okay no matter what YOU decide.

Cursing the mention of Alzheimer's

2009-10-14T02:01:00.002-05:00

Could Dr. Alois Alzheimer have ever imagined how much we would curse the disease he identified a century ago, the very one that bears his name?

What a way to be written up in history books.

However, we should thank him for recognizing it as a disease of the brain, something that shouldn't warrant being thrown in an insane asylum, a prison cell or the corner looney bin, where many individuals many years ago ended up.

At the same time, we are totally confounded how the human brain can dissolve into chaos amid the deep caverns that keep brain cells from communicating with each other in the completion of everyday actions we take for granted … forgetting the need or urge to go to the bathroom and totally oblivious to the waste that can suddenly fill and overflow protective garments …unaware of the mechanics of and need for personal hygiene by showering or bathing, brushing teeth or rubbing both hands together to wash them … forgetting the lessons of how the tools of eating are handled or what role they even play …

And the list goes on that multiplies the heartbreak and sorrow of caregivers.

It's okay to curse Alzheimer's … and then pray a thousandfold longer for a cure.

Stroke and the magic of music

2009-10-12T01:58:00.002-05:00

Life is but a song …

How true that 1800s bit of prose is when it comes to the magic of music in stirring something so deep and precious within stroke survivors. I've witnessed how the beating drums in the circle of survivors and caregivers at Retreat and Refresh Stroke Camp, born here in Peoria, IL, miraculously awakens the complex components of the brain to bring forth song from lips that have trouble speaking ordinary words.

I have learned so much from observing music therapist Susan Bock in action as she pulls the self-proclaimed musical and non-musical campers into a circle of sound that reminds us of the unique rhythm of life that literally keeps us alive as our heart seems to ease or quicken its pace, depending on the beat. Even if you adamantly claim you ain't got no rhythm at the start, you have by the time the final note echoes. Susan knows all the theory and correct terminology behind it. I just know what I like and see and hear in this particular circle of life.

I witnessed something even more amazing the other day when I observed Susan in action working one-on-one with a stroke survivor. The basic extent of this survivor's vocabulary has been "Yes yes yes" and "No no no" or shorter versions thereof. During a half-hour session, I listened to this survivor actually sing some of her favorite songs, proclaim that she was "going to eat, eat, eat a banana" or cucumber, eggplant, pepper, apple, orange and lemon as she shook the food-shaped shakers in rhythm.

Wow. I had those kind of goosebumps that give you bigger goosebumps when you fully comprehend what you're viewing. It was thrilling to hear her regain her voice that her family has longed to hear again and to see the smile they had missed during these months of recovery. She still has a long road to regaining the ability to talk and walk, but imagine how her own melody will gain in intensity and give her the motivation to bring her body back into harmony in the movement of life.

Now, she'll likely never be the way she was before the stroke. However, I have a feeling she'll blossom into someone even more special as she works to rebuild her world with the determination and faith stroke survivors must bring with them every morning. And that's why there are angels like Susan to pave that path with compassion and understanding.

In this case, the song is the key that opens the door to a new life after stroke.

A letter to insurance companies about the real cost of Alzheimer's

2009-10-05T07:02:00.001-05:00

Dear insurance companies,

I have an important question for you: why will you pay much higher medical bills for a caregiver who is hospitalized because his/her health has been nearly destroyed by being a full-time caregiver, but you won't pay for the person with Alzheimer's to be admitted to a care facility unless they've been hospitalized for 72 hours?

The person with Alzheimer's is not totally incapacitated yet, according to official definitions, but this individual doesn't ask "What's for dinner?" They don't remember to eat without reminders and meals being set in front of them. And more frequently, they'll stare at the silverware and wonder what to do with it. And they forget what "going to the bathroom" is all about and don't even notice when they've "gone." Thank goodness for incontinence products.

They start to fall more often, which will cost you more than an arm or a leg if they end up in the hospital with a broken leg, hip, etc. They can't handle physical or occupational therapy to improve because their brains don't understand or remember the most basic of movements or what they were asked to do a minute before. And the caregiver can't pick up or move this person by themselves anymore because caregiving has wore them out or they're prone to injuries that will require hospitalization or therapy or rehab or whatever.

Cha-ching. Cha-ching. Cha-ching.

Now, what was my original question …

Oh yeah, I know it's not cheap, but what will it cost you in the long run? Knowing their loved one is under constant supervision and is safe buys families a lot of peace of mind, which keeps them healthier and able to maintain their own levels of independence for a much longer time.

Is this part of the health care debate? Who knows anymore with all the meaningless and angry rhetoric being tossed around in public debate. No, wait, it's not public debate; it's public hate.

Give that some thought and get back to me when you can. Oh, and please make it easy enough for sleep-deprived caregivers to comprehend.

Thanks,
Monica

Don't let Alzheimer's make decisions for you

2009-10-02T06:25:00.001-05:00

I want to tell you a story …

The full-time caregiver of a person with Alzheimer's has to go to the emergency room because she's suffering so much back pain that she can barely move without screaming. She can't get to her physician's office during regular hours because her adult children, who have demanding lives of their own, have to work during the day and can't come by the old homestead to take care of Dad while Mom goes to the doctor.

Now, don't blame the kids for being heartless or lacking compassion, because Mom doesn't tell her kids about her back pain during the day. She doesn't want to worry them or take them away from their jobs because they're honest, hard-working folks who have mortgages and car payments like most of us. They've already taken several vacation days thus far this year to help give Mom a break in caring for Dad at home, because there are countless families out there that believe in caring for their own as long as possible. They don't want to rely on others.

Dad can't remember their names … rarely speaks anymore … looks puzzled at the seatbelt when he gets in the car … doesn't understand that everything in the grocery store isn't his to grab and eat or open to see what's inside … has no idea why there's a dog in the house (that's been there for 10 years or so) … forgets what a toilet is for … and has to wear Depends 24/7 because he has no clue what his body is releasing … You get the ugly picture that this family faces every hour, every day.

Love and many, many prayers to God keep them going.

Now, back to Mom's back. One of the kids comes by after work and discovers Mom in great pain and asks why she didn't call one of them sooner. Well, you know Mom; she didn't want to bother anybody; she's stubborn; she's trying to calculate how much the insurance will or won't cover; she's sure it's just stress and the extra physical and emotional exertion she's had to bear in caring for Dad's growing needs.

Well, while one kid stays home with Dad, the other takes Mom to the emergency room. She's admitted to the hospital because she's got some serious spinal problems, not just some muscle strain. This family has to make some quick and hard decisions. What will they do with Dad because Mom isn't coming home tomorrow …

I tell this true story as a reminder that EVERY family that has someone with Alzheimer's needs to plan for the worse, when the caregiver can't give care for a day or a week or a month or, heaven forbid, forever.

Don't let Alzheimer's make decisions for you. Start planning from the moment of diagnosis because tomorrow comes far too fast.

Friends just disappear after a stroke

2009-09-24T02:23:00.001-05:00

It doesn't matter if it's stroke, brain injury, cancer or another debilitating illness or accident, the survivors find a different circle of friends afterward, which can be bigger or smaller. And unfortunately, when it comes to something that happens to the brain, that circle can seem almost non-existent.

After listening to stroke survivors share their experiences with each other, I find that a singular theme has burned itself on my brain: if a person can't talk, or they can't speak the way they did before, or their words get jumbled, friends usually vanish. Period. It's sad but it's true.

Here's one male survivor's description of his best friend:

“I had a good friend for a long time. We always been best friends for a long time. I had my stroke. He never did call me after that. Just now that I’m able to talk better all the time that I can call him, and he’s able to talk with me now. It took that long. Otherwise he just disappeared. When I tried to call him, he doesn’t give much time. I’m still the same person in my head. It took a long time for me to talk to him finally. It’s a little different friendship. I still like to talk to him. Some of your friends might circle back around. Sometimes it takes a long time.”

Or a woman who has trouble at times articulating what she wants to say:

“I know this, I know things. But I can’t say it right. They say, ‘What?’ ”

It's an injury to the brain that causes these pauses or steals the words from their mouths. They're not stupid!!

If you truly want to help someone, stop looking at your watch and sit and talk with them. That is the most precious gift you can offer because you're giving them the workout of a lifetime. They can only improve with practice, with real conversation that truly puts their brain, heart and soul to work.

And that's another way to save money on health care! My letter to President Obama is getting longer every day …

Why I love stroke camp

2009-09-21T01:49:00.006-05:00

I love stroke camp http://www.strokecamp.com/ because it gives me a rush of emotions and fulfills a deep need to laugh and cry, to listen and ask questions, to hug and embrace a part of our beings that blossoms when we truly connect with others.

And when it's over, I have to let everything I've witnessed and absorbed soak in as I continue to marvel at the power of human interaction and how it can lift us higher than anything NASA can design.

What impresses me most of all is the depth of love that stroke survivors and caregivers possess. No, it's not easy. It's a new way of life that none of us would choose, but there was this incredible sense of appreciation of what the stroke has given them: this new circle of friends, whether it's other families experiencing the same challenges, or the volunteers and staff who give a unique part of themselves to make sure stroke camp is memorable.

I love stroke camp because it forces my brain to think and analyze and exercise the complex blending of witnessing triumph over tragedy, of clever substitutions generating more personal freedom, of applications of basic common sense.

Shame on those in our increasingly rude society who call stroke survivors "stupid" or "retards." Shame on those who make fun of them and knock them aside just to be nasty. Shame on those who ignore the fact that stroke survivors are still human beings and thrive on the most basic of interactions.

I salute the man who proclaims that "I am who I am," and I laugh with the woman who describes her stroke as a "brain fart." I admire the caregiver who still believes in love and that wedding vow pledge of a commitment through "sickness and health until death do us part."

I love stroke camp because the people are real. How utterly refreshing. How simply beautiful.

What a stroke of genius.

The art of recovery just by "doing" and not thinking

2009-09-16T10:28:00.001-05:00

As I work on upcoming book on coping with strokes and another one on brain injuries, I keep coming across story after story of survivors who continue making fantastic strides in recovery just by "doing" and not thinking.

Now, what is that? It's simply that: movement in response to a game or activity automatically without thinking.

I've witnessed folks who've had strokes and brain injuries reach further while playing the Wii interactive games without realizing how much they were extending their arms or hands.

I've seen a corn shucking contest turn stroke survivors into active participants, exerting strength they didn't realize they had as they got caught up in the frenzy of competition with team members and cheers for their victory.

I just heard the story of a stroke survivor who wouldn't use his right arm that was affected by the stroke. However, he was given a little dog as a companion and he wants to hold it all the time in his "good" arm, his left, and now is doing amazing things with his right, simply because he doesn't want to let go of his buddy.

Here's to the art of recovery, just by "doing" and not thinking. And it's a heck of a lot cheaper!! Maybe I'd better write President Obama and let him know this action alone could reduce the country's health care bill in half!!

Dear President Obama …

Caregiving: the loneliest occupation

2009-09-15T09:03:00.002-05:00

A huge source of our strength and enjoyment of life is found in those people we love being around. As we go through life, our circle of friends evolves and grows with us. Friends give us comfort and share laughter and words of wisdom and absorb our tears. We need the interaction with each other to survive.

Today, more than ever, we have a group of individuals that is losing its social circles with each passing day, just at the time they need friends and family the most. Caregiving of a loved one is rapidly becoming the loneliest occupation in the world.

I spoke to a caregiver the other day, one who never realized just how isolating caring for her husband with Alzheimer's could be. She described how she broke down in her physician's office, tears of intense sadness, lamenting the loss of the everyday contacts that have helped preserve her "sanity" during the increasing challenge of caregiving. Without that vital outlet to bond with fellow human beings, she has lost a great deal of herself. Without the emotional connections, she has also felt the painful crumbling of her physical health.

If you don't buy the truth that our emotional and physical sides are intertwined, then talk to a caregiver of someone with Alzheimer's or another debilitating disease or injury. They will describe the painful loneliness that threatens to dismantle their hearts in every way. That's why we must be ever vigilant in caring for caregivers or else we risk losing them well ahead of the person with the disease or injury.

Think of the caregivers you know, the individuals you love. A small sacrifice of your time and energy can give the conversation about ordinary things they crave, the hand that wraps around theirs, the human connection they so desperately need.

Imagine if it were you in their place. What would or could you give?

There's someone in there

2009-09-13T10:58:00.000-05:00

I visited a local health care facility to meet with a gentleman I've been working with on a book project. As I prepared to go down one hallway, I stopped because I heard his voice. I'd know it anywhere, and I recognized immediately that he was reading aloud.

I turned to follow the path to his voice in the quiet hallway, where his words were the only sound. There he sat reading from a collection of short stories to a woman in a wheelchair. As he continued, I approached quietly, not wanting to interrupt him. I didn't want to disrupt this "conversation" they were having, though the woman sat motionless.

As I studied the woman, her eyes moved from him to me. As he turned the page, he looked up. He smiled and greeted me. I knew the identity of this woman, his wife, who had a stroke about two years ago. As he introduced me to her, I stepped to her side and gently took her left hand. She squeezed it as I made eye contact again. I watched the tiniest movements of her mouth, which did not open, but revealed the effort she was making to create the seedlings of a smile.

Our eyes did not stray as I encouraged her husband to continue reading. She gave the smallest nods when I said it was nice to meet her and called her by name.

I knew that there was someone "in there," a vibrant, energetic woman betrayed by her body. I knew there was someone in there who understood how simple eye contact and the human touch are so precious in the lonely quiet of her world. I moved my fingers slightly to see if she would still respond, and she did.

And then her lips seemed to buzz together, releasing a puff of air as if she wanted to say something. This went on for several minutes. I wasn't sure what she was trying to convey, but it was okay to nod, to acknowledge her effort, to accept the frequent squeezes of her steady hand.

I almost hated to leave but told her to take care and that it was very nice meeting her, and it was, though she said not a word … only communicated with her eyes, an affirmative blink, and her strong fingers, a firm grip on mine, on me.

Yes, there is someone very special "in there" who taught me much in five minutes.

Who led your classroom on life yesterday? Who are you teaching today?

An angry nation after 8 years

2009-09-11T03:55:00.003-05:00

We are a mighty angry nation these days, aren't we? I guess the unity and focus on social good has worn thin eight years after 9-11. Did it get boring?

We now have a congressman yelling "You lie!" in the middle of the president's speech and a larger pack booing in those hallowed chambers of the Capitol. We have parents freaking out because the president wants to tell their kids to study hard and get an education.

George Washington, Abe Lincoln, other distinguished leaders, the victims of 9-11, and the hundreds of thousands of Americans who have died defending this country for more than 230 years have to be rolling in their graves.

Let's see, what does history tell us … Ah, yes, a society that loses respect for authority, puts money before conscience, and tosses civility to the wind is doomed.

Since nobody's paying attention, I guess class is dismissed.

Pardon me while I continue to seek for and savor the compassion that speaks softly and concentrates on what's important in life, you know, the folks who can't be heard over the rude, intolerant shouts.

Please, have a beautiful day and celebrate life and remember the true price of freedom despite what the naysayers scream in your ear.

And forget the damn games and quizzes on Facebook and give a friend, a neighbor, a caregiver a break, a hug, a smile, this week. That's a score that can never be beaten.

Hmm, maybe that's why we've become a bitter nation. We spend so much time watching "reality" shows and playing computer games that we're shocked to see what has happened in the "real" world while we haven't paid attention …

A rude nation: Shameful acts of protest

2009-09-05T07:58:00.001-05:00

It's been almost embarrassing to witness some of the town hall meetings concerning the healthcare reform issue. Now, granted, the government's dissemination of information and the behavior of some elected officials has been less than stellar, and the growing list of fiction in the media and on the Internet about the whole affair has been mind-boggling, but I'm stunned more by how rude a growing number of citizens are becoming.

There have been troubling instances of audience members shouting down, booing or interrupting someone trying to speak. The most horrendous I watched was a woman in a wheelchair who had been called upon to speak but could barely be heard after a while as protesters did their best to drown her out. She spoke of her concerns about being able to afford medicine and even keep her home. She kept speaking and clutching the hand of someone beside her.

One of the most annoying protesters was asked later why he kept interrupting her, and he asked if a woman in a wheelchair has more rights than he does.

What an arrogant jerk. Wait until you're in that wheelchair, buddy. Maybe we'll have removed some of those handicapped parking spots and any other "perks."

If we don't temper our protests with compassion, we will continue this dangerous slide into a nation of chaos, a society of forgetfulness, not forgiveness.

Lost in the chaos of Alzheimer's

2009-08-31T03:00:00.000-05:00

While talking with a caregiver the other day, I was touched by how she lamented the loss of order in her home as she cares for her husband who has Alzheimer's. She said she hasn't seen the top of her dining room table for eons. I told her that it was okay because I hadn't seen the top of my desk forever.

She smiled. She understood the humor I tried to inject into the conversation. She appreciated the momentary diversion and knew I wasn't making fun of her housekeeping skills or making light of something that obviously concerned her.

I quickly grasped the frustration of disorder in her life, a life in which she had been able to control much of her environment, keeping people and pets in line for decades until recently.

It wasn't just clutter; it was chaos.

"That isn't me," she said with a sigh.

Alzheimer's not steals only our loved ones' memories and lives, it works tirelessly to destroy other corners of our world … our skills, our simple, yet important, accomplishments that maintain our dignity and our homes and our lives.

Think of any caregiver you know, no matter what health challenges confront their loved ones. Offer to sit with or entertain their loved one. They may appreciate that simple break to clear off the dining room table at their own pace … to sort and shred to their heart's content … to regain their little corner of order in a chaotic world.

It's a priceless and well-deserved victory.

Alzheimer's: Breaking sacred promises

2009-08-25T04:01:00.000-05:00

Sometimes it takes a while for everything to soak in, for you to fully comprehend a world that makes no sense, a world that consumes you within the sacred walls of your own home.

When it comes to Alzheimer's, no two individuals with this damn disease are alike. No two caregivers are alike. However, they all share one trait: they're human.

Many caregivers feel enormous guilt when they physically can't keep up with the demands of 24/7 care. But there comes a moment when our very human instinct to survive kicks in, when it commands more attention than guilt, even for only an instant.

And sometimes we must break sacred promises we made to the new stranger who now lives with us, someone who has resided in our home for many years, someone who has shared our kitchen table or even our bed. We remember the day they told us, "Don't you EVER send me there," and we vowed they'd NEVER have to go to adult day care or an assisted living facility or a nursing home.

We will cry while we make that decision and all the way home after we entrust someone else to care for our loved one, whether it's for eight or 24 hours. We will cry in the middle of the night and the day, over-analyzing everything we have done or think we should have done, allowing our exhausted imaginations to come up with new avenues of guilt.

Leave those regrets behind when you make those tough decisions. You will have done the best thing for your loved one and yourself when you ask for and/or accept help. You will have given them the attention and care they need when you are too exhausted to watch their every move. You will have given them more love and focus when you see them and care for them.

You will have saved yourself and become a much better caregiver in more ways than you can calculate because you can begin to rebuild your body and your mind and your spirit.

And isn't that the person your loved one with Alzheimer's will always hold dear in a place deep within them?

Some decisions are for the best with Alzheimer's

2009-08-13T01:35:00.002-05:00

When it comes to Alzheimer's, some of the hardest decisions we must make tax our soul with a price almost too great to bear.

Sometimes those decisions are made for us when we least expect … and they're the right answer.

The physical and emotional toll of tending to the everyday needs of a loved one with Alzheimer's or any catastrophic illness or injury is costing our nation and our individual families dearly. Caregivers are exhausted and fragile because they're truly on call 24/7 …

What is she doing when I'm not watching her all the time? Is tonight the night he may decide to wander out of the house? Can I leave her alone 15 minutes while I get a shower? How can I get him to eat and drink properly? What if … what if … what if …

Many families justify with good reason their decision to keep a loved one with Alzheimer's at home, certain that the familiar surroundings are the best location for them and enable the caregiver(s) to do their job taking care of their own.

Those 24/7 days and weeks continue to multiply as time goes on. Caregivers are more prone to illness and injury, and what will a family do when that day comes, when the primary caregiver is incapacitated for a day, a week, a month or even longer?

Think about that very carefully …

More tomorrow.

Who do we believe anymore?

2009-08-12T03:56:00.005-05:00

Or is it supposed to be "whom"? Oh, heck, who or whom cares. It's 4 a.m. and I refuse to follow all the grammar rules at this time of the morning when I'm just now climbing into bed …

But not before I try to keep my head from shaking on the pillow to the news that gets crazier and crazier. So, it's unAmerican to speak up at these town hall meetings against the policies being forced down our throats? Well, Mr./Ms. Federal Government, people are angry, we are very angry.

We're tired of flying coach whenever you choose to ride first class on our dimes and dollars.

We're tired of hearing how nobody in the government really knows where all the billions of dollars in stimulus money went.

We're tired of raiding our couches in search of loose change while corrupt politicians and government employees rob us blind.

We're tired of trying to find a way to care for loved ones when the respite programs we so desperately need are being cut back.

We're tired of being told that government knows best when it really doesn't.

We're tired of your lack of accountability when you then hold us accountable for your costly mistakes.

We're tired of not being heard, so that's why some of us are shouting at the town hall meetings.

No, I don't condone the shouting. I do condone listening and common sense. I do advocate doing what's right and not what will get you re-elected.

Who do we believe anymore? The list gets shorter every day.

When government respects us, we may start respecting it again …

I'll sleep on that one.

If I knew then what I know now about brain injuries

2009-07-30T00:23:00.002-05:00

Thanks to my mom, I have this wonderful collection of letters I sent home during my three years of college. (I was an overachiever and crammed four years into three so that my sweetie and I could get married.) She gave me this packet last year and thought I would enjoy revisiting that period of my life.

I've learned much about myself. First, I thank God my parents had health insurance to cover me four hours away from home. I made several trips to the hospital ER in Evansville, Indiana, and that doesn't count all the accidents I had on campus that didn't require serious medical attention. Second, I thank God I lived on the same floor as a bunch of nursing students. I probably gave them a lot of practical practice.

A letter from January 1977 caught my attention. Walking back to the dorm, I slipped on ice, slide across the ice and hit my head on a glass and metal door. Unfortunately my hood flipped back and removed some cushion.

And that's why I say, if I knew then what I know now about brain injuries …

All the girls have been so sweet to me, even though I've tried to do stuff myself. They'll come up and ask, "Do you remember …" referring to things that had happened Sunday, and I don't recall half of it. I don't remember very clearly being carried out to the car by half a dozen people to go to the hospital. It was a Hughes Hall project. You would have had to see it to believe it.

My sense of balance has been off. I would tend to sway to one side and the person I was talking to would set me straight again. I nearly fell off one gal's bed when I drifted too far right before I realized what I was doing. It's one of the strangest things I've ever experienced. Everyone loved to hear me talk Sunday and Monday because they could barely understand me, and I sounded like a true drunk. But I'm on my way to recovery …

While working on a book about coping with brain injuries, I've learned that we've all got to take better care of our brains. Many people have been incapacitated for a long time or permanently, and even killed by blows to the head that seemed harmless or even funny to witness. I compared myself to a "true drunk."

Kids and adults bop each other on the head for fun or bang their heads against each other or something harder for sport. But the brain can only take so much bouncing around. Some skulls are literally thicker than others. Maybe mine is one of them … in more ways than one.

Think of actress Natasha Richardson earlier this year and her unexpected and tragic death from a bump on the head on the ski slopes. We can't make light of events like these.

Wear a helmet while on your bikes or motorcycles or skating or in unsteady activities like snow skiing. People who don't, they say it's their life, their choice.

Well, it's not just YOUR life. Picking you up off the pavement is not easy for the public servants who have to clean up the scene of the accident. Or if you survive and have permanent serious brain damage, what will happen to you? Or if you survive and look "just fine," the hidden damage may forever alter your personality and what makes you a special person to someone or many.

Yep, your choice.

And if I knew then what I know now about brain injuries, I would have been been a lot more careful with my one and only noggin and gotten myself a fashionable purple and white helmet to match my college colors.

What color is yours?

The games people need to play

2009-07-26T01:29:00.001-05:00

I'm so fortunate to receive another wonderful Alzheimer's story. However, the person who had this experience is the one truly blessed as she described the peculiar behavior of her husband who has Alzheimer's …

While he was shaving today he was looking at me with a stare that I knew something was going to be said. Out came the following - "What do you think this is? Do you think it is a game, young lady? That is it, you think it is a game and it isn't a game at all!" His words surprised me and I answered with, "Oh no this isn't a game! If it were a game it would be Gin Rummy or maybe even TAG (I moved close to him and tagged him)! As I was running away from his chair I was saying: "TAG, YOU ARE IT!"

I am smiling as I am typing to you. My little joke is only mine as he doesn't get it! HA! Such a waste of humor!

No, it's not a waste of humor! It saved your day and may have given you enough adrenaline to get through several days.

Have you ever looked at yourself in the mirror after you've had a good laugh? My cheeks always feel smoother after a laugh attack. It's probably because those muscles got an incredible workout.

And he knew shaving wasn't a game.

And he said something that made sense … to a certain degree.

And he called you "young lady"! What a compliment when you don't feel so young inside or out.

And you transformed yourself back to the glorious silliness of childhood! Tag and gin rummy! And you made him "it!"

Who cares if he got "it"! You did and that's all that matters. It's YOUR moment to remember.

When your loved one fires you

2009-07-22T00:02:00.001-05:00

Imagine if your loved one "fired" you as their caregiver. That can be devastating or it can be humorous, depending on the circumstances. For an Alzheimer's caregiver, it could be just another day or something memorable.

A woman I've met through my experience writing about Alzheimer's sent me this wonderful interaction …

As I was getting him showered early this morning, he told me, "You sure don't know what you're doing, do you?" I told him, "Perhaps I could find someone to come to the house and bathe you?" His answer was, "Great! Get them over right away because you're horrible!!" I looked at this as a conversation, and the thought carried through three sentences - Yeah!

Yeah … it's the first REAL conversation he's had with her in a couple of months, though he had forgotten it as soon as the words sputtered from his lips. It does not take much to make a caregiver smile, even being told she's a lousy cleaner-upper.

Being fired is the nicest thing that's happened to this caregiver in a very long time. But she'll stick around because he's hired her again without an interview and will likely fire her many more times …

And what an amazing resumé she'll have.

Walter Cronkite: A far greater man we've lost

2009-07-18T01:55:00.003-05:00

It's too bad that so many Americans and reporters exhausted themselves during the recent Michael Jackson media "orgy." They're probably too tired to report on and read or care about the passing of a far greater man who influenced the lives of everyday Americans in so many ways.

Or perhaps they just don't get "it," what we've lost in THIS man, a real person worthy of our attention at his passing … to look at ourselves in the mirror.

Walter Cronkite was the symbol of the evening TV news of yesterday, a figure we trusted to tell us the truth. The truth, even if it wasn't pretty. The truth, even if wasn't glamorous. The truth, what we needed to make informed decisions about our destiny as individuals and as a nation. The truth … lacking more and more in the entertainment news many Americans consume as the extent of "news" they need to be informed citizens.

Walter Cronkite was the journalist I wanted to be, not Woodward and Bernstein for their Watergate reporting. He was synonymous with truth, integrity, accuracy, fairness, professionalism.

He was real. He was a man who exhibited character traits we should encourage our children, our young people to study and commit to heart … not song lyrics or dance steps.

We are probably not shocked by Walter Cronkite's passing as he was in his 90s and lived a long and amazing life. However, we should mourn that there will never be a father-figure like him again that encourages and impresses upon us the need to pay attention to the REAL news of our communities and our world, and to assume the responsibility to think for ourselves.

Yes, we've lost a far, far greater man … at the time our world needs so many more like him.

Juggling too much

2009-07-16T04:20:00.004-05:00

I have an appropriate confession for July 16, which is International Juggling Day: I'm juggling way too much in my life right now.

And I know I'm part of a huge majority of people nowadays.

So, that's why I haven't had time to add to my blog this week or Twitter. Time to put my ADDDDDDD+ mind into a focused orbit. And it's hard. Painfully hard. And it's annoying. Painfully annoying.

We all have levels we mark as being overwhelmed. What's demanding for one person may be a breeze for another. We're told to count our blessings when we see someone who is faced with more adverse challenges or tragedy. I try very hard to do that BUT I then feel guilty for feeling bad about anything not going perfect in my life or when my concerns seem pathetic in the scheme of the universe. It's an endless cycle …

We're also told to "snap out of it!" Didn't Cher slap Nicholas Cage in "Moonstruck" with that directive?

We all have limits but often never know until we reach them. I met an Alzheimer's caregiver whose loved one is declining rapidly. I listened to what was not said, the question that they can't bring themselves to say aloud: "Am I selfish if I'm reaching the point where I can't cope with daily care anymore?"

And this person is part of a silent majority that could be beaten down by this damn disease without support.

Yes, there is a point where charity and compassion demand too great a toll. Are we selfish when we no longer have the physical and emotional capability of daily care? Do other family members or friends or neighbors think we're lazy or unfeeling when our capacity to feel the blood flow through our veins weakens by the day from the stresses that drain us?

Let them walk in our well-worn shoes one month, one week, one day.

Whether we are devoured by caregiving duties or having extended ourselves too far because we don't know how to say no or yes, our pain is real. There are times to be persistent on our own and times to ask for help.

Don't think of it or call it a "pity party." Refer to it as a moment of reflection that is vital to our destiny, our basic survival.

Then we will more clearly see what we're really juggling.

My 30-year-old datebook

2009-07-06T00:07:00.000-05:00

I've been consolidating a lot of paperwork, saving some of it digitally and recycling the paper. Among my boxes of goodies are most of the desk calendars I've filled since 1979, the year I got married. The pack rat in me just can't part with them completely, so I scanned them to revisit.

Yes, 1979 seems a long time ago. My entries start shortly after I graduated from college in May and returned home to Anderson, Indiana, to work and plan and pack until Roger and I got married July 21. His future employer, Caterpillar Tractor Co., back then, now Caterpillar Inc., helped us select that date because he started work in June as soon as he graduated, and we had to fit the wedding in during the company's traditional two-week July vacation. So, Saturday, the 21st, it was.

I worked at the daily newspaper at home while Roger started work and set up housekeeping in Peoria. I was watching every penny carefully as I found my detailed spending records jotted on the calendar pages. On June 1, I had two Cokes at 30 cents each, spent 88 cents on lunch and $1.35 on dinner. I really splurged the following day with 36 cents on a slush and $7 for a full tank of gas. On the 10th, I managed to get out of the grocery store and spend only $2.40.

On June 16, I boldly penned, "5 weeks!" until the big day. And then there's the phone number for some guy named Kevin … hmm …

I worked on a variety of stories for the newspaper that month, including a series on senior citizens with topics such as a senior center, an older adult conference and a session on death and dying. Ah, but there was also a lighthearted piece on musical gourds. Bigger hmm …

I drove to Peoria for a job interview on June 27 and got to see how Roger had decorated our new home. BIGGER hmm … And suddenly it was three weeks until this two-bedroom paradise was to be my address!

On July 1, I called hotels in Indianapolis to find a place for us to honeymoon for a few days. The Marriott was $49 for the first night, $25 the second night, and it included a champagne breakfast! Wow! Fancy stuff! Book it, Danno!

My last day of work was July 12, and I was busily filling in the back of the calendar that had space for budgeting and expenses. I was trying to be a responsible, yet frugal, bride. Monthly rent $245, electricity $25, annual renter's insurance $50. Cable TV? Where's a slot for that? Hmm …

I crossed out church donations and substituted cable.

My final days as a single woman all summed up neatly in an old calendar. What a sentimental hoot.

Now, if I could just remember who Kevin was … hmm … hmm …

Wishing for a butter memory

2009-07-05T01:17:00.001-05:00

Did you ever notice in a restaurant how pats of butter are usually wrapped individually in silver or gold foil when they're served with rolls or bread?

Sometimes they're solid from being refrigerated immediately before they're served, or they're kind of soft because they've been out for a while.

However you prefer yours, that shiny packaging often makes me think of fancy candy hidden inside, kind of tempting. Yes, it ruins many a diet because a lot of folks who use butter at the restaurant table wouldn't do the same at home. I guess there's something about unwrapping that glittery package that makes us crave it more.

Now, I know it's butter inside. You know it's butter inside. It's a condiment, not an item eaten solo, though I have known a few people that put on a slab of butter that's larger than the food it's decorating.

Imagine someone with Alzheimer's or dementia who sees that in the bread basket. This person can't read anymore and isn't communicating much verbally, so they're not going to ask what it is.

What do they see? What does shiny paper wrapped around something small represent? Could it be candy? It's got to be something special and sweet, like the precious and delicious treats of childhood … or any stage of our lives.

Why on earth am I even talking about this? Because I recently saw a person with Alzheimer's open one of those shiny pats of butter and roll it off the wrapper like it was candy and eat it.

What do you do? Nothing. If they thought it was candy, so what. Must have been okay because they didn't make a face. Do you scold them? Make a scene? Heavens no!

This is one of those moments in caregiving that you just let it slide … though you might subtly move the basket a little bit away. This is one of those moments that you will better comprehend what Alzheimer's has taken from your loved one: the memory of the difference between candy and butter in a shiny packet. Tuck this single image in a special place in your memory because it will make you smile one day, many days, when you need a lift the most.

Blame it on the brain #2

2009-07-01T00:35:00.004-05:00

What was that word … yes, aphasia.

Imagine knowing exactly what you want to say and that's not what comes out of your mouth. Some folks who have had aphasia have described it like being in that Biblical Tower of Babel. After a stroke, brain injury or disease, some have difficulty understanding what others are saying and sometimes others don't understand what they're saying. It's truly like a foreign language that leaves you frustrated.

And it's frustrating for loved ones who have to train themselves to communicate differently. They need to adopt a new level of patience and compassion because it takes time to make sure they understand each other. And that's a little hard in this fast-paced world that has become quite addicted to instant gratification and instant answers.

I've learned much just by taking that vital time to simply listen to someone tell you what's on their mind. Many that I've communicated with apologize for their difficulty, but I tell them it's okay. I'm there to listen even if they can't express every word they want when they want.

Yes, you can blame it on the brain that has some wires crossed. But remember this: aphasia is not a lost of intellect. People with aphasia are not "stupid." They communicate at different levels and many improve by practice, practice, practice.

Practice the art of listening. You never know when it may open the door to the most extraordinary conversation of your life.

Blame it on the brain #1

2009-06-30T01:29:00.006-05:00

Say "aphasia."

Now, do you know what it means?

According to one of my dictionaries, it's "the partial or total inability to produce and understand speech as a result of brain damage caused by injury or disease."

Too sterile. I like the way the folks who have it have explained it to me. It's not so simply this: You have the word(s) in your mind, you know exactly what you want to say, but something else comes out instead or perhaps nothing at all.

While working on these brain-related books (brain injuries, strokes, brain tumors-brain cancer) I've been meeting a lot of individuals and families who cope with aphasia … a word that was likely never in their vocabulary until they had to deal with it.

Like the young, highly educated woman who had a stroke at about age 30 and when talking to her mom, sometimes "Dad" is what comes out. With a wink, her mom told me she only gets a little miffed when her daughter says "Grandma" instead of "Mom."

Blame it on the brain that's battling its way back from an injury, which could be from a stroke, disease or an external force. Not everybody who has those conditions has aphasia, and among those who have it, every case is different.

We'll talk about frustrating … next blog …

It's the Alzheimer's, stupid! #3

2009-06-28T01:40:00.004-05:00

Where was I … oh, yeah, more "It's the Alzheimer's, stupid!"

What else angers caregivers?

Being told by clueless people that there's nothing wrong with their loved one because he looks "fine." That basically translates into: "The problem must be with YOU."

Well, world, I'm going to announce something that will shock you! Ready? Most folks with Alzheimer's look "fine." It's what we cannot see that is the problem.

You may see two healthy "seasoned" people getting out of their car in the handicapped parking space. They have the disabled plate or tag hanging off the rearview mirror. You watch them enter the store and think, "How dare they! There's nothing wrong with them! They're faking it!"

Well, many a caregiver has shared with me the "time bomb" that could go off without much notice in their loved one with Alzheimer's. They may have to end their shopping quickly at times for a variety of reasons, because their loved one may:

• Become agitated and/or uncomfortable by too many people or too much noise in the store.
• Wander away and get lost, even one aisle away.
• Start opening packages because their brains don't comprehend anymore that something doesn't belong to them until it's been paid for.
• Need to go to the bathroom but don't understand how to get into a stall by themselves. And it's OK for moms or dads to bring into their respective restrooms a young child of the opposite sex, but society has not gotten too keen yet on a husband needing to take his wife into a public restroom.

Yes, it's the Alzheimer's, stupid.

Spread those angel wings, Farrah

2009-06-27T02:39:00.008-05:00

Sadness swept me twice on Thursday. First, when I heard of Farrah Fawcett's passing after a brutal battle with cancer.

Second, when the news of her passing was tossed aside like garbage to make room for news of Michael Jackson's sudden death.

You would think the world had ended. Well, it almost did because the Internet was reportedly maxed out from the surge of news seekers and messages of shock.

If only the world would convert a fraction of its energy and money mourning Jackson's death into REAL action and compassion in helping REAL individuals and families cope with REAL catastrophic life events. The money that will be expended on Michael this and that would put a huge dent into funding research into fighting the cancer that killed Farrah and people you actually know.

The money that will be spent on magazines and other media about Michael's life and death would give thousands of families the respite they desperately need in coping with everyday caregiving, the REAL stuff that doesn't make the entertainment news because it's not sexy enough.

And the TIME, the precious moments of life that will be lost in over-consumption of news about Jackson's odd life could be converted into volunteerism to teach children to read, cheer the lives of shut-ins, or simply offer some kind deeds to help many people survive another day.

Our nation's obsession with celebrities is getting ridiculous. If the people who follow that show about the couple with a half-dozen kids or whatever applied the same amount of time to their own families as they do on watching and talking about that over-hyped garbage, imagine the possibilities.

To the people who will spend the coming days wailing about Jackson's demise … get a life, get your own life. To the children who think their lives are over because the King of Pop is dead … get some new REAL role models.

Farrah wasn't perfect. She had more than her share of "blonde moments." Her child is in jail. One of history's most famous sex symbols had to face the embarrassment of the world finding out she had anal cancer, but look how strong it made her. She never gave up and shared her story to encourage other patients to fight that damn disease with every ounce of energy they can muster because we are stronger than we will ever give ourselves credit for.

She earned those angel wings the hard way, the brave way, the human way.

I'm not heartless about Michael Jackson, who was born the same year I was. I hope he finds the peace he never found on this earth. I'm glad that he's not being subjected to one more person taking advantage of him and making money off him. He's left all that far behind.

It's time we as a society do the same and put our energy, time and money into a REAL life, our loved ones' lives, OUR life. You may not make the 24-hour news channel, and that could be the best news of all.

Dare to ignore those who need help the most

2009-06-26T11:33:00.012-05:00

I'm not a scholar of the Bible but one phrase jumps out at me, and, depending on which version it is, it's something to this effect:

"Inasmuch as you have done it to one of the least of these my brothers, you have done it to me."

Now, it doesn't matter what religion you are, because this is beyond religious labels. This is the basis of our human existence and connection on this planet.

Well, Illinois, the lovely state where I've resided for almost 30 years … the home of a growing percentage of wacko politicians and embarrassing scandals … the land of a string of greedy, corrupt individuals … yes, Illinois, is out to make history again as we teeter on a wave of cutbacks that will prove disastrous to the people who can do little or nothing for themselves, the disabled through birth, accident, disease or crime …

We now have a governor and legislature that are trying to wade out of this mess created by years of misplaced priorities, feeding pet projects, building monuments to themselves, mindless wastes of money, and simple loss of connection with the everyday lives families and individuals face.

It's time for politicians to stop being politicians. It's time to stop playing this political game of "I'll do this for you if you'll do this for me," tacking ridiculous self-serving amendments onto meaningful legislation or selling the souls of one segment of society to overstuff another. It's time to get past protocols that embellish egos so brightly that some people can't seem to stop admiring themselves in the mirror while many worlds fall into shambles around them. It's time to quit filling government job openings or college slots with friends and families and neighbors who don't have the credentials to do the job or who waste the professor's time.

We are a nation at the brink of collapsing … one individual at a time … and it's happening. Take away the respite care that gives caregivers the break they need … take away the group homes that provide specialized care and a unique emotional support system … take away the nursing home beds that provide essential 24-hour care in our loved ones' final days … take away the after-school and summer programs for children who are an inch away from becoming a casualty statistic in the streets … take away the mental health services that target those who have lost control of their lives …

Go ahead, dare to ignore those who need help the most.

Do that, and we will pay a price that is beyond the calculating capabilities of the most sophisticated minds and computers in the world.

Do that, and we will witness a wave of chaos, frustration, anger, abuse, abandonment and even death, because the human emotional support system will have been severed, stretched and stretched and stretched to a point where it snaps like an old dried out rubber band that falls in brittle pieces to the floor.

And I don't know about the rest of the country, but now Illinois has stopped funding the burial of indigents … just in time for summer when temperatures and tempers are already hot enough.

We all must accept responsibility for our fellow human beings, but we cannot pick up all the pieces when people refuse to fulfill their obligation as parents, as children, as spouses, as family, as friends, as employees, as bosses, as public servants … choosing instead to feed their own selfish needs and sing loud enough to drown out the cries around them.

The PEOPLE of Illinois, of any state, need to stand up and remember that those who need our help the most should not be the easiest to discard. These individuals didn't ask for birth defects, Alzheimer's, a drunk driver to hit them, to be shot in the head …

If we can't remember that first quote about caring for the least of our brothers, then give this one a try: "There but for the grace of God go I."

It's the Alzheimer's, stupid! #2

2009-06-24T01:15:00.001-05:00

Let's keep tweaking this "It's the Alzheimer's, stupid!"

What else angers caregivers?

How about asking the caregiver or family member all about the disease when that person is right there. You know, questions like, "So, how long has he got?" or "You are going to be put her in a nursing home, aren't you?"

People with Alzheimer's aren't stupid. Now, people who ask those terribly insensitive questions, that's another thing …

Hmm, it's kind of hard to explain Alzheimer's and how it's a horrific, fatal disease while the person with it is right there. Imagine hearing every day that you have a fatal disease and that your brain is all screwed up and so on and so on. And if you have memory loss, it's like hearing the diagnosis for the first time every time.

Imagine the physical and emotional toll that takes. I know one family that stopped talking about the loved one's cancer in front of him because his Alzheimer's made it devastating to hear every time.

If you want to learn first-hand more about Alzheimer's, then ask the caregiver or family member off to the side and then be willing to hear the answer. (Just don't point at the person with the disease because they notice those sort of things and it makes them uncomfortable.)

I can guarantee that everybody has a different answer because Alzheimer's doesn't follow rules of logic or consistency … or mercy.

It's that damn Alzheimer's, stupid!

It's the Alzheimer's, stupid! #1

2009-06-23T00:45:00.004-05:00

Let's twist the phrase that helped elect Bill Clinton … "It's the economy, stupid!" to "It's the Alzheimer's, stupid!"

Would that be a catchy enough phrase to attract and educate several generations that had better get used to that A-word and what it really means?

What angers caregivers?

Let's start with talking about the person with Alzheimer's as if they're not standing or sitting there. I know I've said this one before, but it needs constant repeating: They may not remember you or your name, but they remember the pain of being ignored or treated like a child. Acknowledge and engage them, even if they may not say much, because it's the Alzheimer's that's keeping them from finding the right, if any, words to participate in a conversation.

But they're still human and need to connect with other humans. You can be a quiet comfort by just acknowledging they're still HERE!!

Go ahead! Teach the world about Alzheimer’s!

2009-06-21T00:05:00.001-05:00

Yep, you’ve listened to the medical lingo, you’ve read all the “facts” about Alzheimer’s, you’ve witnessed its effects every day.

You could write THE book about this damn disease!

Well, do it! Start telling the world about this horrific disease because a lot of people are not paying attention. They’re ignoring the fact that Mom or Dad or Uncle Joe or Aunt Bea or whoever is having problems with memory or social skills. They blame whoever’s living in the same house with them for “letting it happen” or for telling lies.

Teach the world NOW how to help your loved one, how to help you. Don’t wait until you’re too exhausted to educate or they’re too far away emotionally to listen.

Alzheimer’s: Stop the cover-up!

2009-06-20T00:05:00.001-05:00

If you’re secretly covering up for a loved one to not anger or embarrass them, or to save the family from learning the truth about Alzheimer’s or dementia, stop it right now!

Stop the cover-up! Educate yourself, be open with family members and start making sensible plans based on common sense and the demands of our complex society.

Those so-called thousand points of light start with changing your own light bulb first so you can see better the changes that will evolve in your world. Prepare for them before they seize control of you.

Alzheimer’s: Go ahead and fight!

2009-06-19T00:05:00.002-05:00

Are you going to let a person who has no business driving anymore, because of the effects of Alzheimer’s or dementia, continue driving so YOU can avoid an argument?

Then I want to you to imagine YOUR beautiful child or grandchild riding in that car with that person when they become confused at the wheel or are not paying attention.

The fight will easily fade. The horrors of an accident will not.

Go ahead and have that long overdue confrontation if necessary. Just make sure every word is fueled with compassion because your heart and life will be better for it.

You WILL survive that hard moment.

And so will everyone you love.