The Never Ending Question - But…How are you…Really?

How…are you doing….really?

(after the loss of my husband who had young onset Alzheimer’s…for new friends here.)

I want to answer that frequent question, publicly and openly and honestly. Because if Dave’s passing was a surprise to you, as it was to many, it was not a surprise for his family.

I am doing very well, thank you. Truthfully. And, here are a few reasons why. (This is really for education, not sympathy!)

1. Dave was diagnosed three years ago, but according to the neuropsychologist and his doctor, he was in the moderate to advanced stage already by the time I admitted to myself that something was wrong in 2020. I can look back now, and see early signs all the way back to when we bought this house in 2014, possibly before, and more pronounced behavioral signs by 2017.

2. I was never in denial about what the disease was or would do. I may have been in denial about how much I could handle, but not about the disease. We’d been on the edges of watching his brother go through it, so it wasn’t a surprise to me.

There is currently no cure, no way to stop it, no way to slow down the disease and limited understanding as to why it’s different than standard Alzheimer’s. The only thing we could hope and pray for was that Dave would hold onto his ability to meet his basic needs as long as possible.

3. I knew that the decline would appear to be gradual for an undetermined period of time, and at some point, the line on the graph would take a sharp dive. We experienced the beginning of that dive in April, which prompted his entering a home in May. By August, the imaginary line on the graph had hit the bottom, and there were no meds that even touched the behavior issues. He was in terminal agitation by that point, we just didn’t now for sure.

4. I had 3 years to prepare for handling things on my own. Dave’s inability to make decisions or even follow directions, started occurring over 5 years ago. I’ve been our family’s provider for the last 14 years, and have always had the responsibility of handling paperwork and Dave was the muscles.

Dave recognized my laugh, even when he didn’t know me. He would hear me in a video and say, “that’s Anne’s laugh…I miss that..” and I would be right there.

Early Onset Alzheimer’s is a terrible, terminal disease…not that any disease is good. But, I’m super grateful that he is no longer in torment. He was scared, weepy, paranoid, had hallucinations, wasn’t sure how he had met me, didn’t know how many kids he had….he was no longer Dave. His body and bloodwork was strong up until he passed.

So, while for some, it seems like it was sudden or he went quickly, it was more like 8 years.

So, yes, really. I am well. I am ready and excited for this new chapter. I am joyful, prepared, and happy. We will always miss the Dave that dementia took away.

Anne Dovel