Tuesday, December 19, 2023

Howling at the moon

I've held off on any new posts because my focus has been on holding my shit together while my wife is dying. Jennifer has been in memory care for more than six years due to her disastrous diagnosis of early onset dementia (frontotemporal dementia). She has been slowly declining and a couple of months ago was placed on hospice. She's transitioning. No one knows how long she will live. We've had active dying, vigils, rallies, stable status, and all of the misery in between. People look to me to be the source of information and coordinator of everything and it's exhausting. I don't know how many times I've been told that it's hard, they're sorry, blah blah blah. Tell me something I don't know. Worse is when people ask me what can they do. There is no socially acceptable answer that is honest. How about you find a cure for FTD? I'm bone-weary of putting on a happy face and placating others who just want a pat on their head and go on with their lives. 

Earlier this year one of Jennifer's doctor's told me that the woman I married 40 years ago no longer existed: FTD took Jennifer from me in 2017, but her body kept going. When I visit her each day, I feel that I am performing a duty while honoring the memory of a relationship. The crush of the passage of years has weighed down on my soul. I've looked for alternative sources of joy with some success: travels, spending time with family, long motorcycle rides, reconnecting with old friends, skiing. But the trip or the visit ends, and I'm right back where I was before, wading through my cesspool of loneliness and pain, witnessing the savage silence of my wife whither into nothingness.

My six month scans showed no evidence of disease. I am doomed to continue on alone. 

And so it goes.

2 comments:

  1. I think the reason no one commented was because no one knows what to say. Hang in there Ken. Its safe to say everyone wishes you and your family the best possible outcomes. You are an inspiration.

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  2. Your words brought tears in my eyes. Stay strong. So happy to hear about your clear scan . Keep going strong. Keep inspiring.

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