It’s 10 o’clock at night, and Chuck thinks he needs to leave for a meeting.
This morning he fell, hard enough that I was sure he had broken something. I managed to get him up, and he seems okay—for now. Lately, everything feels like it’s measured in “for now.”
He’s stopped shaving and clipping his nails. He eats less, throws food away, or feeds it to the dog, even though he knows we don’t allow that. Or maybe he doesn’t anymore.
He hasn’t settled into this home, even though it’s ours. He believes we’re somewhere else and is constantly planning to “go home.” This afternoon, I fell asleep briefly and woke up to armfuls of clothes he had pulled from the closet, already packing.
He’s still funny and sweet and grumpy. Those parts are still there. But he isn’t really there in the way he used to be, and that loss shows up in small moments all day long.
Going out is harder now. He’s physically weaker, and our world has grown smaller as this disease continues to move forward. I don’t know where this will take us in the months or years ahead. I just know it isn’t good.
Most days, I look for the glimmers. I practice gratitude and try to keep my chin up. But some days are simply hard.
Tonight is one of them.
I hate FTD. Full stop
It’s robbing us of what life should have been as we grow older, but I will keep searching for the meaning in all of it and we will forge onward.
If you’re walking this road too, you’re not alone. The AFTD HelpLine at (866) 507-7222 offers support from trained social workers who understand frontotemporal dementia and can help you navigate where you are right now. You can also find me on Instagram at @debbieelkins, or here on the blog, where I share this journey honestly as it unfolds.
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