How does my husband feel about having dementia?

In my earlier posts, I told you about my husband, Dave, 59, who has Frontotemporal dementia (FTD). I am trying to understand what it is must be like for Dave, waking up in the morning knowing he has dementia–with no known cure or drugs slowing it down.  Does he feel angry, sad or confused? Does he have the insight to realize he is changing? Is he afraid of his future?

Since FTD affects the language area, our conversations are becoming shorter and simpler. I am making notes while Dave is still able to communicate his thoughts and here are some of them…

It was the day after we receive news about Dave’s diagnosis, when he asks…”why did the doctor tells us to update our wills? Doesn’t he think I will live very long?” Taking a brief second to compose myself, I reply…”It is a good idea that every one updates their wills; no one is guaranteed of living another day”. 

Three weeks later, Dave was reaching for his ginkgo and nutritional supplements, commenting…”I might  not be able to do anything about my brain, but I am going to do everything I can to keep my body healthy”. It has been 2 1/2 years and he continues to exercise daily, remaining physically healthy.

Dave and I are relaxing outside on our deck, when I ask..”are you angry or frustrated that you have dementia?” (this is one of the questions I have asked him a few times). Without hesitating, Dave says “no…my only worry is that I may have given this to the kids”. Amazingly, Dave doesn’t consider the challenges he is going through–just what our kids might have to endure.

One day while out for a bike ride, Dave says he couldn’t imagine his life without exercise. “I can think out here and plan what to do next. I can’t think as clearly when I am home”.

We enjoy running together a few times a week. During one of our runs, I was wondering what color Dave would choose to describe his brain. He said, “black”.  ” Why black?”  ”Because my brain is dying”. “Do you know what that means?” I tentatively ask.   Without hesitating, he says…”it means I will die”. It is surprising  how calmly we are chatting about this. ”Are you afraid to die?”–not sure I was ready for his answer.  ”No…I only wish I could travel to the places we talked about”. Quickly, before my emotions catch up, I reassure him…”we will make it a priority to do as much traveling as we can over the next 2 years”. Dave smiles gently, knowing I will do everything I can to make it happen.

Almost daily, Dave thanks me and tells me how glad he is that I ‘put up with him’…”I am not the same person I was a few years ago or when you married me”.  Every time he makes the comment, I remind him what he would do if the situation were reversed. He nods his head, knowing the answer.

Watching Dave, and listening to his short, simple comments, it is beautiful how he is surrendering completely to his dementia–he continues living his best life, despite the changes. How fortunate for the kids and I to have this great teacher, and role model in our lives.