Each year about this time, my husband, Tony, and I visit an area neurologist.
We’ve been doing this since 2015, the year my dear husband was diagnosed with early onset Alzheimer’s disease. That was the day our lives were changed forever.
I remember sitting in that room, staring straight ahead, overcome by the magnitude of the diagnosis.
The doctor asked if we had any questions. Hours later I had so many, but at that moment I couldn’t think of a single one. My husband had essentially been given a death sentence, and I would be the one to take care of him as he slowly lost every semblance of his former self. How could I not have questions? But how could that doctor answer the biggest one of all: What were we going to do now?
Back then, Tony was still self-sufficient. If anyone were to meet him, they might not have even known anything was wrong. Well, that is unless they gave him anything he had to remember. Short-term memory loss was one of the clues that spurred us to get a doctor involved.
One of the first things we did was to get our estate plan in order. That meant wills and a trust and a plan for when Tony couldn’t make decisions for himself. It was sobering and scary, but it was essential.
Both of us had to make adjustments. Tony had to understand that he had a disease that would make him unable to do the things he used to do. That meant he had to fight the tendency to beat himself up when he couldn’t balance the checkbook or remember where an item was.
That didn’t stop him from trying. I had to adjust to the idea that Tony’s idea of “helping” often made little to no sense to me, so I needed to find a way to appreciate the effort, if not the result. I’ll admit I sometimes failed, particularly the day when I found the cat’s poop scoop in with the cooking utensils.
Somehow, we’ve managed to weather all these changes with laughter, love and a lot of forgiveness. At the end of the day, he’s still my best friend and, whether he still understands it or not, I’m looking out for his best interests. Of course, there are days when grief and frustration cause tears, too.
These days, my dear Tony doesn’t speak very often. I honestly don’t remember the last time he uttered a complete sentence. The nature of Alzheimer’s is that some days an ability like speaking might be there, but the next it might not. Two days later, it could return. When he stopped speaking, I just figured it would come back. Until it didn’t.
However, I do know that he is capable of speech because from time to time I get a fully formed expletive, particularly when I’m doing something he doesn’t appreciate. Like trying to help him put on his pants, for instance.
My job at that moment is to figure out a way to defuse the situation and still get him to put those pants on. I’ve been working on my patience, and since I get a lot of practice, I’m getting better at not reacting.
As Tony and I hit the eight-year mark, I’m grateful that we’re still doing relatively well.
I remember the one statistic that stopped me in my tracks on that fateful diagnosis day: The average life expectancy of someone with Alzheimer’s is 10 years. That’s a scary prospect.
Of course, most people aren’t diagnosed with Alzheimer’s disease when they are 57 years old, as Tony was. Still, no matter how much time we have, the road ahead will only become more challenging.
So much of this disease for me has been managing my own emotions toward it. I have had to make peace with the grief I feel over so many things. I miss the Tony of 10 years ago, the one that was more my partner and less my responsibility and charge.
However, I know he’s still in there because I still see flashes, however brief.
The yearly visit to the neurologist is one of the saddest days of the year for me. However, it’s also a testament to the love I have for my husband.
We’re still in this together.
• 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 email@example.com.