Early Onset Alzheimer's - It's Not Fair

My husband was diagnosed with young onset Alzheimer’s at age 59.

How many times did I tell my boys when they would come crying to me about something that wasn’t fair, “You know, life isn’t fair.”

I have put off blogging about this part of our story. But, a friend said that maybe someone is searching the internet, the way I, as the spousal caregiver, have done, looking for answers and comfort.

So, let’s get one thing straight right away. Early onset Alzheimer’s, typically diagnosed before age 65, isn’t fair. It strikes quite a blow. It hurts everyone around the person with Alzheimer’s.

I still don’t know how I’m going to organize these posts about our Alzheimer’s experience, but I think starting with a little about us pre-diagnosis, is a good beginning.

This August will be our 37th anniversary.

But, dementia has already stolen our relationship. For the last 10 years, my husband has been afraid that he would end up with Alzheimer’s. His dad had age related or late onset dementia, probably Alzheimer’s. And his brother had Lew Bodies dementia. There was no reason to believe that it was inevitable for Dave. His doctor would test him from time to time and he had a little forgetfulness, but it really looked more like he was just not paying as much attention to details. He went on like this for 8 years.

We continued traveling, going on marriage cruises and mission trips. Everything seems just fine. Until it wasn’t. In 2018, according to my journal, he was getting slower to respond when he was driving. I reasoned it away, blaming my own nervousness as a passenger in the car. But, I was concerned enough, that I postponed our goal to buy an RV. Dave had always driven on our road trips, sometimes letting me drive when he got really tired, but that wasn’t often. But, on one trip, he started reacting by doing the opposite of the directions I would give, if I didn’t say them well in advance. I would tell him to turn left, and he would turn right. Naturally, my instinct was to ask him if he just wasn’t listening to me. This happened over and over, so I started preparing miles ahead of time to make sure he was in the correct lane when it was time to turn.

There were other little things over the next 2 years, that would just puzzle me. He’d go out to fix something and choose the wrong tools or materials. He would map destinations in town that were well known stops for us. He was hiding things.

Thanksgiving Day, 2020. Our family feast wasn’t until that Saturday, so I got up early to take advantage of a day in the studio that we had been working on. I was having such a wonderful morning, sewing and listening to music. I could hear Dave coming and going, in and out, lots of doors opening and closing, but I figured he was just being productive. Then, I heard him tell one of our sons on the phone, that he was leaving for Texas, that we were getting divorced.

I stopped what I was doing and went and asked him what he had said? He looked at me and said, “we talked about it last night.” And all the doors opening and closing, while I was blissfully creating in my studio, were him packing up as much as he could in the pickup.

I was confused and hurt. I couldn’t figure out what he was talking about. My sons all came home and there were tears and hugs and Dave agreed to wait until we talked to our marriage coach, which we did the following Monday. During that consultation, I was urged to get Dave to his doctor as soon as possible. His doctor ordered testing with a neuropsychologist, who along with Dave’s doctor agreed that he had moderate dementia, probably Alzheimer’s type.

That’s the short background. Dave’s actions were not ones that he would have taken had his brain been functioning normally. We all know that now.

Anne