Caregiving Vignettes: “How long, Dementia?
How long do we have?
Isn’t it what anyone wants to know who has been stricken with a debilitating disease? One with no hope for a cure? One with no drugs that actually work? I use the word “stricken”, not to overstate, and not to overdramatize. The actual meaning is to be seriously affected by an undesirable condition or unpleasant feeling. I think we were all stricken by my husband’s dementia.
His neurologist could not answer the question. “There’s no way to tell, actually, because it is different for each person.” I could tell she liked neither the question nor giving the answer. I felt bad for asking.
Is there an answer?
There is a progression.
Well there are what’s called “stages”. Some experts use the three stages to describe a demented patient – basically giving the illness a beginning, middle, and an end. Then there is the seven stage model with what to expect at each and about how long each stage lasts. But, with the caveat that the person might exhibit them in a different order or a different timeframe. I won’t list those different stage models. But you can take a quick google on the matter. It’s super easy to find.
I am no scientist but I can observe and compare like a scientist. Surely, I can observe and compare like an artist. Possibly there is an answer to that difficult question. Everyone caring for a person with dementia has a story to tell and if we talk about what we are going through, like I am here, perhaps there are some comparisons to be drawn and some answers.
My husband first showed symptoms (though I didn’t know what it was!) of bvFTD (behavioral variant frontotemporal dementia in his late 50’s. He’s now nearly 71.
I will tell, in very very short, the very beginning of his story and then in other blog posts I will add to it because it is just way too much information.
My husband was the senior partner in his law firm. He began slowly having a change in his personality. No memory problems. No other problems. He just was not the same person anymore. He was making uncharacteristic decisions. Only I noticed it, but then, I am his wife. But, it was nearly a decade from when I first began to notice the few subtle changes before his actual diagnosis of bvFTD.
Why? Why do I want to share this? It’s because this very personal information that I have held so closely for so long is exactly what I was searching for.
The answer is, it’s in the story. We are still living it, so I will tell it as it goes.
