Friday, July 30, 2010

Strokes affect our feline family members too

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.

Monday, July 26, 2010

"I didn't sign up for this"

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.

Saturday, July 24, 2010

So that's what sisters are for

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.

Tuesday, July 13, 2010

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

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 …


Sunday, July 11, 2010

I'm going to jail

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."

Friday, July 9, 2010

A brain injury caregiver who shared her free time with me

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.

Thursday, July 8, 2010

Pepaw was a firecracker for sure!

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.

Sunday, July 4, 2010

Taking away more freedoms on Independence Day

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.