My husband was diagnosed with Early Onset Alzheimer’s Disease at age 59 and I’m sharing what it means to be a full-time caregiver for someone with this cruel disease.
At this writing, it’s been 20 months since my husband’s Early Onset Dementia, Alzheimer’s type, diagnosis. That’s how they worded it after the tests and consultations with the neuropsychologist and doctors.
Initially, it was hard for other people, even closer family members, to see that there was anything different about Dave. He hid the disease well. It seems so weird to say that, because how did he know to hide it? In the early months, before he even knew there was brain atrophy, it just seemed like forgetfulness, and everyone relates to that at our age. We have kids growing up, parents and siblings aging…there’s a lot going on. In family gatherings, he often just got more quiet. Again, not that unusual for someone to sit back and engage less sometimes. He would laugh off things that he realized he had said incorrectly. His old memories have still been there. For instance, he got into an animated conversation with a stranger at a garage sale about Texas, where he grew up. My son was so surprised that he was talking in sentences and for all listening in, he appeared just fine. But, that wasn’t just a lucid moment, that was something deep in his memories that he knows well.
Because he seemed like nothing was really wrong out in public, I didn’t understand that I still needed respite. My situation isn’t as bad as someone else’s, right? Sure, it was sad and frustrating, but I was still functioning okay, I thought.
But, I wasn’t. I have very kind and gentle medical professionals in my life, who kept telling me, I had to take care of myself better. A few friends and family members that I tell everything to, told me the same thing. And, I had read the blogs on the Alzheimer’s Association website, over and over, as well as other blogs.
Internally, my response was… I get it. But, how? Most people didn’t understand, during those early days. How could it be that hard if he looks so normal. And, even on my worst days, I knew if anyone near me truly understood, then that means they would have walked the same path or were in it themselves, and I don’t want that. We were so isolated, not just because of 2020, but because I was exhausted all the time. I wasn’t sleeping well, I wasn’t eating well, I wasn’t exercising. I wasn’t even doing any of my hobbies. I was a mess and almost waited too long to take some respite. Maybe, I didn’t even want to admit that I needed that break. Nothing seemed right during the first year.
If you’ve made it this far through my ramblings, and you are in a similar situation, get some help. Take a break. Don’t feel guilty about it. In the next post, I’ll share some of the ways I started to take care of myself again.