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.