Tuesday, June 29, 2010

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

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

Dear Molly,

Here's my most recent posting on Facebook:

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

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

Did I work through my sorrow and pain well?

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

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

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

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

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

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

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

Love you!

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

Friday, June 25, 2010

Caregiving: The guilt was killing me!

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

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

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

Caregiver guilt: it's a killer.

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

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

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

Here's the first debate:

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

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

Here's the second debate:

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

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

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

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

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

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

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

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

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

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

Thursday, June 24, 2010

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

Final note about Pepaw and his smoking for NOW …

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

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

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

"What's wrong?" Pepaw asks.

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

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

"Do you want to look at it?"

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

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

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

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

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

"Just $4."

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

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

"Thank you, darlin'."

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

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

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

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

Wednesday, June 23, 2010

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

More about Pepaw and his cigarettes that drive me crazy …

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

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

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

"No, that's too much."

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

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

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

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

The battery to his internal calculator had burned out.

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

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

To be continued tomorrow.

Tuesday, June 22, 2010

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

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

And I ain't gonna apologize.

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

Ah, the good life, finally.

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

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

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

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

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

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

Last week …

To be continued tomorrow.

Sunday, June 20, 2010

One puff and he took our breath away

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

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

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

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

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

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

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

Yes, his one puff took our breath away.

Friday, June 18, 2010

Alzheimer's: who's your banker?

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

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

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

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

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

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

Federal Reserve Chairman Ben Bernanke.

Another thing off my to-do list!

Wednesday, June 16, 2010

She was still a caregiver

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Take care of yourself!

Forgive yourself!

YOU cannot do everything yourself!

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

Ask for help!

Accept help!

It's OK to be human!

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

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

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

That's who Pepaw needs.

That's who I need.

Friday, June 4, 2010

Learning to care for someone you really don't know

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

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

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

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

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

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

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

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

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

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

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

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