Tuesday, June 21, 2011

Alzheimer's and the Dance of the Seven Veils

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!

Thursday, April 7, 2011

Ms. Monica goes to Springfield - pt 1

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

Thursday, March 10, 2011

We can only promise to keep them safe

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,

Sunday, February 20, 2011

Stroke: “They want a sentence and no more”

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 …"

Friday, February 18, 2011

Sick of politicians, protocols, policies and payoffs

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!

Tuesday, February 15, 2011

Pepaw's new ride - part 2 conclusion

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."


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."


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 pain at all?" the woman asked.


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.

Sunday, February 13, 2011

Pepaw's new ride - part 1

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?"


"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.

Saturday, February 5, 2011

Pepaw's unexpected trip

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.

Sunday, January 30, 2011

The tears that seem endless - pt 1

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 …

Wednesday, January 19, 2011

Pepaw's not happy with God - part 2 conclusion

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.”


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.”


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.

Tuesday, January 18, 2011

Pepaw's not happy with God - part 1

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.



“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.”


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

“I’m ready to go. Are you?”

“How about we —”

Continued tomorrow.