Early Onset Alzheimer’s - It’s Just Not Fair

My husband was diagnosed with young onset Alzheimer’s shortly after his 59th birthday. He lived three and a half years after diagnosis and this is my caregiving story.

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. Diseases aren’t fair, but the one I know about firsthand is Early Onset Alzheimer’s and taking care of a spouse, watching him deteriorate day by day.

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 necessary background to our story.

August 18, 2023, was our 38th anniversary.

But, dementia had already stolen our relationship. For the last 10 years, my husband had 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 young onset Alzheimer’s with Lew Bodies dementia in the last weeks, and was also diagnosed at age 59. 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 seemed okay. 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, maybe I was getting more cautious with age. I didn’t know, but I didn’t feel safe like I had in prior years. I was concerned enough, that I strongly suggested we postpone buying our RV. We had the RV picked out, just waiting to pull the trigger. But, something didn’t seem right.

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 from me and lying about why he was going shopping.

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 had worked hard on my online business for 16 years and this was the year I was getting my sewing studio set up, so I could enjoy my hobbies more. I was so happy that a dream was coming true! 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 overheard 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 did you just say??” He looked at me and said, “we talked about it last night.” My son was still on the phone and he said, “Mom, is this true?” All the activity I was hearing while I was happy as a clam in my studio, the doors opening and closing, was my husband, 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 was already in the moderate stages of dementia, probably young onset Alzheimer’s type. He had just had his 59th birthday. Our whole world felt like it was swirling out of control.

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, so when I write about these early days before and after diagnosis with early onset Alzheimer’s, please understand that the hurt, pain, confusion, trauma that kept occurring over the next few years of caregiving, I know were not his fault. But, I’m going to write as openly as I can in the hopes that if you are a caregiver for a spouse who is reading this now, you will know that someone in the world, understands.

Anne