The Gross Banana

Lately, unless there's a trauma of some kind, it seems as though one day blends into the next, and time passes by almost imperceptibly. Has it been a week since a notable event? A month? It's a blur. You think you're going to remember milestones in the disease's progress, but sometimes you don't notice they've occurred until later. If a milestone happens suddenly, you take note. But it doesn't always happen that way. Sometimes, abilities disappear slowly over time. Then they're gone, and you wonder how and when they left.
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For instance, now that my husband is basically non-verbal, I've been trying to remember when it was, exactly, that he stopped talking. A year? A year and a half? He still says a word or two now and then, but many of our hours-long visits end without his uttering a single syllable, let alone a string of them together.

2 years ago this week
First day of our last cruise together.
Yes, I was certifiable.

This morning, a post that seemed humorous at the time appeared in my "Facebook memories." It was from two years ago today, October 10, 2017. The post reads like this:

"Yuck, this banana tastes gross!" [him] "That's because it's plantain..." [me]

He had seen the "banana" on the counter, peeled it, and taken a bite. If you've ever taken a bite of raw plantain, I'm sure you'll agree that it isn't the sweetest "banana" you've ever tasted. It's more like a raw potato. But once it's made into tostones, it's delicious! I digress.

When I posted that, it was meant to demonstrate a hilarious, "fun with Alzheimer's," part of daily living with him. In retrospect, though, it's a poignant reminder that, just two years ago, he was wandering around our home, peeling his own "bananas," and able to verbalize a complaint in a complete sentence. He was feeding himself, using the restroom, dressing himself (sometimes comically, but still), going places with me, and doing things.

You may have noticed that I seem a little melancholy these days. That's because I am. My emotions, normally packaged rather neatly in a nice box with a beautiful ribbon, are causing an itchy turmoil just under the surface. And sometimes, when I sing to him or chat with him or read to him or simply think about him and of days gone by, I suddenly notice that my feelings have managed to escape and are overflowing out of my eyes and down my cheeks. I think that's okay. It has to be, because there's really nothing I can do about it.

2 years ago this week
Leaving San Francisco on our last cruise together.

Joined at the Heart

It's a funny thing. Throughout most of our 48+ years of married life, my husband and I held each other more or less loosely. That is to say, he had his favorite things to do that I didn't necessarily enjoy but tolerated, I had my favorite things to do that he wasn't even remotely interested in doing with me, and then there were the things we liked to do together. It worked really well. We weren't "joined at the hip," and we liked it that way. And suddenly he got this illness. Well, it seemed sudden, anyway, though I'm sure it actually wasn't.

As time went on, I couldn't be out of his sight for five minutes without causing him distress. He followed me around everywhere, even to the bathroom. It was like a noose tightening around me sometimes, and it was hard to breathe. It was difficult to accept that this strong, decisive, pioneering man now depended on me for absolutely everything. It was a heavy responsibility, and it still is.

Gradually, we became inseparable as I cared for all his needs of daily living, maneuvered social situations alongside him, ensured that his quality of life was as close to what he was used to as possible, took him for drives to calm him, everything. Everywhere I went, he went. Everywhere he went, I went. We held hands like a sweet, little, old couple. My feelings for him became more and more tender as time passed and compassion overcame fear. We were joined at the heart, but Alzheimer's was viciously separating us.

Many times, I have been teary-eyed at the unfairness of it all, the frustration of it all, the pressure of it all, the stress and tension of it all. The fear. The fear of it all. The pain of realizing he is slowly, inexorably leaving me is excruciating. Some days, I really don't know how I'm going to go on.

Alzheimer's is a cruel, relentless disease.

I Get Emotional Sometimes

We were watching a little PBS this evening, and on came a Glen Campbell fundraiser special, "Good Times Again." The songs were, of course, a throwback to younger days. It's easy to look back with rose-colored glasses, but those times held plenty of heartache in them, too, just as all times do. Retrospect is a funny thing, though, and as long as a song or skit doesn't remind you of struggles in your life, it's a feel-good experience to take a walk down memory lane.

During the "call-in" portions of the program, much was made of Mr. Campbell's struggle with Alzheimer's, his "poignant and courageous" final tour, the video of the tour that's available as a thank-you gift, etc. It was put together in a very emotional, heart-tugging way that's designed to make you pick up the phone and call. Or maybe it just made me emotional and tugged at my heart.

Returning to the musical programming, there was Mr. Campbell, smiling, wittily telling a story about meeting his hero. Eloquent. Expressive. Playful. Ten years ago. I drew parallels without meaning to, instinctively.

Suddenly, seemingly out of nowhere, I completely lost it. Overwhelmed, I had to leave the room. I didn't want to upset my husband by bursting into tears in front of him. There I was, crying like a baby. Sobbing, even.

You see, even when you think you're holding it together pretty well when caring for a loved one with this disease, especially your most special someone, it doesn't take much to peel off the glossy veneer of self-control and reveal the raw desperation you sometimes feel when facing the uncertainty...or maybe it's the certainty...of the future. It's heartbreaking.