Oliver: What have 9 years of Alzheimer’s disease been like? A series of adjustments

Nine years ago, my entire world changed. My husband, Tony, the love of my life, was diagnosed with early onset Alzheimer’s disease. He was 57 years old.

We both knew that the problems he was having at work and at home with forgetting things were serious. But neither of us wanted it to be an incurable, progressive neurological disease that would render him unable to care for himself and ultimately kill him.

However, that is exactly what we were facing.

At first, most people wouldn’t have recognized that anything was wrong with him. He was able to function well enough. He did have to retire from his job, but he was able to get long-term disability from his employer, and that really helped.

Sadly, the things that went wrong often made Tony feel that he was “stupid.” In large part that’s why we decided to name his illness “Fred,” so that we could blame Fred when things went wrong. My Tony wouldn’t make those mistakes, but Fred would.

Little by little, I found myself having to take over chores around the house that used to be Tony’s domain. Or I’d have to find someone to help us when it became apparent that the lawnmower or the snowblower posed too much of a hazard.

When Tony would drive in those early years, I’d be right beside him to make sure he was OK. If he did drive alone, it was only to familiar places. But after a while, he wasn’t comfortable with that, either.

And then the day came when he decided that it would be best if he didn’t drive at all. I was so proud of him for making that decision. Too often, people with Alzheimer’s must be forced to give up those keys.

That decision, however, meant that instead of being driven around, I would now have to be the primary driver in the family. It also meant that I would have to sell my car.

Tony also had been the primary cook for the family because he enjoyed it. I managed to avoid that job for 20 years, but now that also has fallen to me. Little by little, I’ve gained confidence and although I might never be considered a great cook, I think I do all right. We aren’t starving.

The biggest changes in Tony seemed to come during the pandemic. Since that was about five years into his disease, it’s hard to say if the social isolation contributed to his decline or if it would have happened anyway. I guess I’ll never know.

Tony began having a harder time with writing. He would copy things I had written, and I started to see that he was having difficulty tracking the words on the page. His handwriting became more ragged and what he’d write started to make little to no sense. Eventually, he stopped writing entirely.

After a while, he also started to speak less and less until one day he stopped that too.

That’s not to say that I don’t hear his voice from time to time. He will randomly repeat something I say. He can still give me a “yes” or “no,” although sometimes he doesn’t really mean either one. And lately, he’s capable of dropping a swear word when he gets frustrated.

The frustration he feels has gotten worse over the last couple of years. That has been the hardest for me to deal with, especially since in the past year I’ve been dealing with breast cancer again.

That aggression, particularly around bathing time, led me to get some help. I couldn’t physically handle being attacked for trying to take his shirt off or because he didn’t want to get wet.

I still wind up being hit, pinched, grabbed, kicked and the like, but it’s less frequent and more because I don’t have his dinner ready fast enough or I tell him no. How dare I.

The perpetual motion that has come in this middle stage of Alzheimer’s disease requires an additional level of patience. Tony spends the day hiding items throughout the house, unscrewing knobs on the kitchen cabinets and folding and refolding the kitchen towels that I’ve put out for just that purpose. Lately, he has been pulling things out of drawers, which means that I’ll be adding even more baby locks.

These are all the sorts of things I will discuss with Tony’s neurologist during our annual visit this week. It’s one of the saddest days of the year for me because it means I have to come face to face with Tony’s decline.

Still, he’s relatively healthy despite all of this. I can be thankful for that.

Our journey continues. For how long, I really don’t know.

All I know is that I’m still along for the ride.

• Joan Oliver is the former Northwest Herald assistant news editor. She has been associated with the Northwest Herald since 1990. She can be reached at jolivercolumn@gmail.com.