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.

The Visit from Mom

My mom was with us for a week. I've been trying to get her to do this for a really long time, to come down to see us and stay for longer than a couple of days. Mom is nearing 90 and shouldn't be living alone in her little cottage, really, so I'd hoped she would decide to stay indefinitely at some point. Though, of course, she is steadfast in her determination to die in her own bed and in her own house, as so many folks are.

So, she came down for the baby shower [see The Nana Diaries] and planned to go back home after "Bob's 4th of July Party" on July 7th. I "took the week off" from my paying job.

Here is what I learned about the feasibility of caregiving for two adults, one with a memory impairment due to Alzheimer's, the other with regular, run-of-the-mill aging issues (lack of good balance when standing or walking, for instance, and refusal to use a cane or a walker, but willing -- on very special, few-and-far-between occasions -- to be pushed hither and yon in a wheelchair). It can't be done 24 hours a day by one person.

By the end of the week, I was ready to run away from home. Not only that, but I was desperate to go back to work. Now, I ask you:  Is that normal? I was exhausted physically, mentally, emotionally, and every other "ly."

Because my mother was visiting, I went out of my way to plan interesting and pleasurable outings for us. Most were mainly for Mom, since she rarely is able to come down to see us. She's always wanted to see Filoli. She loves to window shop in high-end stores (Broadway Plaza), and one thing she unfailingly wants to do is to go to the beach to hear the ocean roar (Muir Beach). Things that would be a change of pace for my husband as well as being entertaining for all.

My husband was increasingly confused, asking the same questions over and over. "Where are we going?" "Why are we going there?" And then again. He was more agitated than normal, and more on edge than usual. There was some shortness and irritation, especially towards the end of the day when we were all tired (Is this "sundowning?"). And he became an attention hog. He was showing off for my mom, as well as being progressively more negative as each day passed. He seemed jealous of the time I was spending with my mother. The week was capped off with an explosive outburst at Bob's party that helped me to understand that, sometimes, the person in my husband's body isn't exactly the guy I married. Or maybe he is, but without appropriate filters to modulate behavior. His worst attributes were on display without the benefit of his wonderful side's veneer.

When Mom left for the ride home on Sunday afternoon, it was like someone had waved a magic wand over my husband. Relative calm returned to our home, along with good humor. I guess what they say about routine and maintaining a schedule and not doing too much bears consideration. Either that, or the 21 days of prayer and fasting for breakthrough at the church, which ended the day Mom left, have produced...breakthrough. I hope so!

I see now that under the current circumstances, Mom would have to be crazy (or desperate) to agree to move in with us, especially since she cared for Dad all those years when he had dementia. This makes me sad, because I wanted so much to do this for her. But why would she willingly come and watch me deal with what she dealt with, reliving all those memories over and over in living color? How unhappy would she be?

I'll continue to visit her regularly, as I have been doing, as long as possible. And I'll let her make her own decisions about what she wants to do and when she wants to do it. She's amazingly strong and sharp and resilient. And she's a grown-up. I love you, Mom.

UC Davis Study Update

Yesterday afternoon, we went to Sacramento for the second PET scan at UC Davis Medical Center. Why UC Davis Medical Center is in Sacramento instead of Davis is anybody's guess, and it's confusing for my husband. As we drive past Davis on the way to Sacramento, he always wonders why we aren't taking the freeway exit to the university.

I'm pleased to report that it all went very well. We've completed both PET scans and an MRI, and now we get to take a breather until next month. We are hoping that somewhere down the road, someone will benefit from all of this. Researchers are working so very diligently to identify markers, a gene, something on which they can concentrate preventive care. And, who knows? A cure later could be the result of a breakthrough today.

As stressed as I felt in my last post, it's truly amazing what a good week we've had. I am so thankful for rest, for encouragement, and for the prayers that I know are holding us both up. I am believing that this evil report regarding my husband's health will be completely overridden and invalidated by a miracle. That is my hope.