Hi, everyone,
I've been lurking for months, and it's finally time to post. My husband and I have been caring for my 85 yo FIL in our home since August. For a year and a half before that, either my husband or our paramedic son were his full-time caregivers in FIL's home.
I'm not sure exactly when FIL was diagnosed. It was "mild cognitive impairment" a few years (5, maybe?) ago, but FIL resists seeing doctors, so we didn't get the official dementia diagnosis until last month. It was terribly clear, of course, just unofficial.
I'm here because while we can see that he's at the end of Stage 6, maybe early stage 7, we're a bit at a loss to know where he's headed in terms of EOL. We think it's mixed vascular / Alz, but he's refused the testing that would let us know for sure. We think he's in better shape mentally/cognitively than he is physically, and it seems like it's the other way around for most people. I thought maybe someone here might have had a similar experience and could help signpost us.
FIL is mostly not eating solid food. Some days none at all, some days one or two bites at most, and not at every meal. He drinks Ensure, around 1-5 a day, it really varies. He says he has no problems swallowing, but we think he does, at least a little. He can feed himself, but just barely. His hands shake so much that he needs both hands to get a cup to his mouth, and on bad days, we think he's not safe with a fork. He does not want us to hand feed him.
He's emaciated, approx 112 lbs on a six foot frame. He's always been slim and lanky, but now his BMI is around 15.5.
He doesn't speak much, but he can when he wants to. His personality is mostly intact, will crack a joke or make wry comments a few times a week. His memory is as expected, can't tell night from day, isn't always sure whose house he's in, still recognizes us and my SIL, but is very foggy on the grandkids.
He can walk, usually with a cane, but he's very shaky and he shuffles. He can get in / out of bed on his own but chairs are harder. He can mostly put his own clothes on / off but doesn't choose them well or fasten things properly. Has gone out with one sneaker and one slipper on when we didn't notice soon enough, etc.
Continence-wise, he's had a few accidents (both kinds) and he mostly urinates in the bathroom sink. Even with support bars and a seat riser, getting on / off the toilet is difficult.
He sleeps 16 - 20 hours a day most days.
My main question is about how thin he is, how little he eats and what this means for EOL. When we look at him, we don't think he'll see another Christmas, but there's so much individual variance that we're a bit at a loss.
He's going into a care home this month, and we're trying to work out the finances, which is why it's important to get a sense of how long he might have. More than a year? More than two? Five? The decisions we have to make for 2 vs. 5 are vastly different. I think we may be looking at 2-6 months, but that's a gut feel and I'm out of my depth.
He is steadfastly refusing medication (e.g. Aricept) and most medical care, something we will try to honor as much as we can. He's said for years (decades, really) that he doesn't want to live in the sort of state he's currently in.
I know nobody can tell us for sure, but it would help greatly to hear some comparisons.
There's so much empathy and kindness here. You don't know how helpful you've all already been for me as I've lurked and read your posts over the past several months. Thank you so much, and thank you in advance for any comments to come.
Dia
P.S. If this post doesn't belong in EOL, so sorry, and please feel free to move it.
I've been lurking for months, and it's finally time to post. My husband and I have been caring for my 85 yo FIL in our home since August. For a year and a half before that, either my husband or our paramedic son were his full-time caregivers in FIL's home.
I'm not sure exactly when FIL was diagnosed. It was "mild cognitive impairment" a few years (5, maybe?) ago, but FIL resists seeing doctors, so we didn't get the official dementia diagnosis until last month. It was terribly clear, of course, just unofficial.
I'm here because while we can see that he's at the end of Stage 6, maybe early stage 7, we're a bit at a loss to know where he's headed in terms of EOL. We think it's mixed vascular / Alz, but he's refused the testing that would let us know for sure. We think he's in better shape mentally/cognitively than he is physically, and it seems like it's the other way around for most people. I thought maybe someone here might have had a similar experience and could help signpost us.
FIL is mostly not eating solid food. Some days none at all, some days one or two bites at most, and not at every meal. He drinks Ensure, around 1-5 a day, it really varies. He says he has no problems swallowing, but we think he does, at least a little. He can feed himself, but just barely. His hands shake so much that he needs both hands to get a cup to his mouth, and on bad days, we think he's not safe with a fork. He does not want us to hand feed him.
He's emaciated, approx 112 lbs on a six foot frame. He's always been slim and lanky, but now his BMI is around 15.5.
He doesn't speak much, but he can when he wants to. His personality is mostly intact, will crack a joke or make wry comments a few times a week. His memory is as expected, can't tell night from day, isn't always sure whose house he's in, still recognizes us and my SIL, but is very foggy on the grandkids.
He can walk, usually with a cane, but he's very shaky and he shuffles. He can get in / out of bed on his own but chairs are harder. He can mostly put his own clothes on / off but doesn't choose them well or fasten things properly. Has gone out with one sneaker and one slipper on when we didn't notice soon enough, etc.
Continence-wise, he's had a few accidents (both kinds) and he mostly urinates in the bathroom sink. Even with support bars and a seat riser, getting on / off the toilet is difficult.
He sleeps 16 - 20 hours a day most days.
My main question is about how thin he is, how little he eats and what this means for EOL. When we look at him, we don't think he'll see another Christmas, but there's so much individual variance that we're a bit at a loss.
He's going into a care home this month, and we're trying to work out the finances, which is why it's important to get a sense of how long he might have. More than a year? More than two? Five? The decisions we have to make for 2 vs. 5 are vastly different. I think we may be looking at 2-6 months, but that's a gut feel and I'm out of my depth.
He is steadfastly refusing medication (e.g. Aricept) and most medical care, something we will try to honor as much as we can. He's said for years (decades, really) that he doesn't want to live in the sort of state he's currently in.
I know nobody can tell us for sure, but it would help greatly to hear some comparisons.
There's so much empathy and kindness here. You don't know how helpful you've all already been for me as I've lurked and read your posts over the past several months. Thank you so much, and thank you in advance for any comments to come.
Dia
P.S. If this post doesn't belong in EOL, so sorry, and please feel free to move it.
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