Executive Function

In some Alzheimer's patients, so the neurologist tells me, language skills are the first out the door. In my husband's case, the language skills remained stable long after the executive function started to go.

That means he might at one time have known how to accomplish a task, and he probably can still accomplish that task with help, but he can't remember the task, plan the task, get the supplies for the task, organize the task, and complete the task. In other words, he can paint the room for you, but you need to pick the colors, pick up the supplies, make sure all the necessary tools are there, and give exact instructions (to be repeated) as to what it is you want done. And you must be patient when he gets sidetracked.

For instance, today, we went to gas up the truck. As I exited the vehicle, I asked if he had checked the oil lately. He didn't remember, so up went the hood. He found the oil stick, he pulled it out, wiped it off, and...well, golly...it was down two quarts. He didn't remember what grade to get, so I suggested he check the oil sticker on the windshield from the last time the oil was changed. He got sidetracked in the small print, so I looked over his shoulder and saw that it was the second thing listed, right between the date and the mileage.

I said I would go into the station to get the oil while he filled up the tank with gas. When I came out, I saw that he was standing next to the vehicle, but he hadn't filled it up. Upset with himself, he found the appropriate key for the gas tank after a few tries, opened up the little door, took off the gas cap, placed it on the dash, and came to where I was standing in front of the vehicle. But he didn't actually put the nozzle in and started the pump.

I handed him the two quarts of oil, which he placed inside the cab of the truck. I suggested that it might be a good idea for him to go ahead and put the oil in, reminding him that he had checked the oil level and that it was very low. "Oh, yes. That's right." I helped him find the right place to put in the oil. He took the cap off, poured in the oil, checked the level again, and it was all good.

That's when I noticed that he hadn't filled up the tank. You know, it had slipped his mind because he was distracted. He said he didn't know what was wrong with him these days, a comment which, happily, he will soon forget. However, I will not. It is another reminder, another punch in my heart. It makes me weep inside.

He filled up the tank, locked the little door, put the hood down, and started to get into the truck. I mentioned that the gas cap was still on the dash, and he unlocked the gas door again, allowing me to put the gas cap back on while he shook his head at himself.

Now, you might think to yourself, "So, what's the big deal? The truck got filled up, and the oil got put it. It's all good." Yes, that's true.

But this is our new normal:  Every task requires reminding. Every procedure requires gentle prodding. Every chore requires instructions. Repeat step one. And, at the end of a long day, that's wearing. And you know what else is hard? Nobody understands how frustrating it is, for both of us. I mean, how hard can it be, right?

I know you don't understand, though you think you do. You can't understand unless it's happening to you, and it's happening every day, and it's happening every time anything needs to get done. It's emotionally devastating, and not everyone has a support system, and not everyone has hope or faith.

You might be wondering how you can be helpful. Just be there. This time, your kindness and the offer of a shoulder to cry on might be needed. But next time, it could be you who needs the shoulder and the kindness. Especially the kindness.

A Normal Life

Originally published in Chrissie's Confessional on Tuesday, May 20, 2014

My Life Was Normal Once

So, I was cleaning up some files at work today. At the back of a drawer, I found a folder that contained some personal stuff, some business stuff, and some combination stuff. Including an appointment calendar from 2005. I know, right? Throw that thing out, for crying out loud!

But, wait:  2005. That was the year we went to New Orleans at Mardi Gras, and then we went to Aruba for the first time, and then we went to Houston and embarked on our first Caribbean cruise. There were also personal milestones of others which are their stories to share but helped make up the rich tapestry of that year. So, why did I hang onto this relic of memories past? I think it must have been so I wouldn't forget how tenuous "normal" can be.

You see, in 2005, my life was just about perfect. In fact, I remember thinking to myself that life was beautiful, and I couldn't imagine it getting better. You know that advice older people give you about doing things while you can and not putting everything off until retirement? Well, that's what we were starting to do.

And then, maybe a year later, things just didn't seem right with my husband. We attributed it to exhaustion, overwork, and so on. I'm sure most people do that. It was hard for his work to get done on time and with excellence. He was working ridiculous hours, leaving home at 6 a.m. and sometimes not returning until after midnight. I started helping him with his spreadsheets and reports, because he was so busy and working such long hours. In retrospect, I was helping to cover for him, to help him get by. He only had a few years to go before retirement.

And then he lost his job. It became obvious to others that his memory wasn't what it used to be. That he was having trouble picking up conversations where they'd left off. That he was repeating himself and asking questions over and over. And we began the testing process. The rest, as they say, is history.

All of that to say, your life as you know it could go on and on swimmingly until you someday ride off into the sunset with your love by your side, having lived, shall we call it, a "charmed" existence. Or, the fairy tale could be over tomorrow. Pack as much gusto as you can into today. You know that advice I was talking about a couple of paragraphs ago? Just do it.

The Concert

Six years ago, my husband was released from his job. Five years ago, testing began. And four years ago, he was diagnosed with early-onset Alzheimer's. These are my thoughts and feelings about our experiences, good and not so good. I hope, on the whole, my chronicles will be an encouragement to you. Thank you for reading them. Hang on to your hope! 

I took this photo. Please don't use it without
 my permission. Thank you.

For my husband's birthday, I surprised us both with last-minute tickets to see singer, songwriter, and musician James Taylor. We'd never seen him "live" before, and both of us have enjoyed his music since we were young. You could say it's the "soundtrack of our lives."

The weather was lovely, our seats were surprisingly good (especially considering the reasonable price), and Mr. Taylor's performance was incredible. Wow. What stage presence, voice command, and rapport with the audience. He's a consummate pro, making a large venue feel like a small club. Intimate. Comfortable. We were transported years back in time to when we were just starting out together. Music is amazing that way. It has memories attached to it. Mostly good ones, in this case.

My husband, along with the rest of the audience, was happily singing along to the songs. I was pleased and surprised that he was remembering the lyrics, but I wasn't prepared for the emotions I was feeling. A deep sense of sorrow and melancholy enveloped me. Yes, I was enjoying the concert. Very much so. Yes, I was singing along, too. Yes, I was listening for my favorite song, too. But tears were running down my cheeks. I may have been sobbing, overcome with feelings of loss and longing for that elusive something that might never actually have been there. That thing you can't quite put your finger on but wish you could embrace.

I was happy. And I was sad. Happy because my husband was having a wonderful time. Happy because I'd been able to give him something really special for "his" day. Sad because tomorrow, or even on the way home tonight, he might not really remember having been there without prompting. Sad because we were young once, and we didn't realize we wouldn't always be. We were healthy once, and we took it for granted. Just like all of you.

You're Beautiful!

Overnight travel and a strange bed can make sleep come at a premium, especially if confusion sets in before drowziness happens. Wakefulness means conversation:

He asks, "Where are we?"
I answer, "My mom's bed. We're at her place for a few days."
"Oh," he says, touching my arm. "Your skin is so soft."
"Thank you."
"No, really. It's really, really soft."
"Thank you. I use a lot of lotion to keep it that way."
He chuckles.
I say, "What's funny?"
"I can't believe I'm here with you."
"Why?"
"You're so beautiful!"
"Thank you," I say, with tears in my eyes. This has never happened before in all our years of marriage.
"No, really, you're the most beautiful girl I ever dated."
This has never happened, either.
"Thank you," I whisper, "You're kinda cute, yourself."
Now it's his turn to say, "Thank you. I love you." And he chuckles again.
"I love you, too. What's funny?"
"Nothing's funny. I'm just so happy. You're so beautiful! I can't believe I'm with you. I love you. I really do!"
Wow.
"Are we married?"
"Yes, we've been married 44 years."
"44 YEARS? Wow. You're so beautiful. Really. You look great. Your body looks great, so curvy and soft. I'm so happy!"

This more or less exact conversation was repeated over and over all night long, until he finally fell asleep just before dawn. And so did I, curled up in his arms, amazed at this wonderful discovery of deep love and continued attraction. Why didn't he romance me like this from the very beginning? I don't know. But he's doing so now, and that's what matters.

One of my friends told me years ago, upon learning of the diagnosis, that she felt sorry because the relationship I'd always dreamed of having with my husband would now never happen. I was taken aback at the time and tried to dismiss her comment, discounting it as baseless words that should not have been spoken. Because you know what? She was wrong.

The Stalker

He hides behind doors. He creeps quietly down the hallway to the kitchen. He waits patiently on the far side of the refrigerator, not making a sound, hardly breathing, waiting for his opportunity to say, "I'm just trying to keep your skills sharp." Someday, he may be asking why I'm having a heart attack.

He parks outside my office when he thinks I should be home by now, then leaves suddenly when he notices I have seen him. I ask him him why he didn't come in, why he didn't simply call. He stares at me as though I have done something wrong.

He is practicing his own skills. The Stalker.

Are We Married?

Hi, again,

For the last couple of weeks, we've been having an interesting conversation as we cuddle before going to sleep. Yes, we still cuddle. You should, too.

He asks, "Are we married?" very tenderly.

I answer, "Yes, we are."

"How long have we been married?"

"43 years."

"43 YEARS?! How old am I?!"

"You're 65."

"65?! How old are you?"

"63."

"Wow."

"Yes, indeed. Wow."

And then, after a brief pause, "Has it always been this good?"

Come on! How sweet is that?! Tears come to my eyes as I answer, "You know, all marriages have their ups and downs. But [why ruin the moment?] yes, it's been mostly good."

And he seems very happy at that moment. You would have to know this man to know that such sentimentality is not something that flows lightly from his lips. And so, even though this disease sucks and makes me so, so angry, these moments are a treasure to me. I'm writing this down so I don't forget. This memory is a keeper.

Who Am I Sleeping With?

The good news is that my husband is doing very, very well. I stopped writing this diary last year. In fact, almost exactly a year ago. In a way, it was too depressing. In another way, it would have been a good outlet. And yet again, there are things I just like to hold close to my chest. Even if nobody else is ever going to know.

So, I've been skimming through my entries -- some posted, some not -- and, yes, he is doing very well. The medications have done a good job of slowing the progress of the disease. Not stopping it, mind you. That will take the miracle I continue to expect. And the mood stabilizer has worked wonderfully well. Most of the time, it's a joy to be with him. He has become much more gentle. Much more caring. Most of the time.

He is having very active dreams. Much more so than before. He talks in his sleep almost every night. Not the kind of "talk in your sleep" that most of us do, you know, muttering and sputtering and rolling over and being quiet. It's out loud. Sometimes he wakes himself up; sometimes not. But I wake up, however briefly. And so I am tired most of the time due to interrupted sleep. Or inability to go back to sleep. Whichever. So I am sometimes crabby, which makes me sad.

The strangest thing happened about a month ago. Actually, twice one week (one night and the next night), and twice the following week. But not since. Yet.

The first night, I was already half awake because the room was very quiet and still. It was odd. Then I heard, "Who am I sleeping with?" I replied, "Your wife." And he said, "Oh. That's what I thought." And then he went back to sleep. I did too, eventually, but I was in a state of disbelief. What?!

The next night, it was, "Hi, I'm Harry." And the following week, "Hi. Have we met?" And, "I'm Harry. How ya doin'?" On the plus side, he didn't seem disappointed to find out it was his wife next to him. He seemed relieved.

Now, those are some pretty vivid dreams, if you wake up and you're not too sure who's in bed with you. I hope the part before the talking was interesting and exciting. We all need interesting and exciting experiences, even if they aren't really happening.