My sister (64), sole carer for her husband (71), is at breaking point. Because I live in France I can't offer regular physical assistance or respite, so am doing other things, such as research etc with people like the Alz Soc, which she doesn't have time, opportunity or energy for herself.
I have a question regarding my BIL's apparent "betwixt & between" level of awareness - a state he's been in for years now and which, in a horrible way, is making choices that are already difficult for her even harder. I'd love to hear your thoughts. Please bear with me while I give you some details that may help you to comment. Sorry this will be rather long!
My BIL's symptoms started showing in 2003, when he had to retire at 55. Diagnosed with AD in 2011. My sister (E) gave up work in 2012 to look after him and is now close to mental, physical & emotional breakdown. I'm sure this is familiar to many of you.
She has just triggered LA involvement and awaits a date for assessments (as urgent case).
However, although she feels unable to continue caring for him at home for much longer, she worries that even if the LA assess him as eligible for care, he is still too "aware" for a care home to be appropriate, either for short respite stays or full-time. This week, for the first time, she visited a home (luxury one they couldn't afford for more than a few weeks and the LA wouldn't fund), with a view to respite stays. She left in despair. "The place was lovely, people nice, but he would hate it, even if I could get him there. What would he DO all day? I can't do it to him. But I can't go like this either."
My BIL should meet all the eligibility criteria in terms of mental capacity (last cognitive ability test score 16/30 - so is in Stage 6), task capability, safety issues etc. He couldn't look after himself at home and needs 24/7 care.
BUT most of the time he doesn't realise how bad he has got. Since July he has reluctantly attended a Day Centre once a week (this, plus some family help earlier this year is the first respite E has ever had). He considers himself to be nowhere near as bad as all the other (much older) people, and finds all the "silly" activities "beneath" him. Although much of the time he behaves like a toddler, he's not yet at the stage where he will happily fold towels, rummage in a box of life memorabilia, complete a jigsaw designed for a 2-year-old... Doesn't want to play dominoes or bingo etc (I suspect because, in truth, he couldn't do them without help!). But nor can he cope with more adult games like scrabble or even simple crosswords.
He used to be an English teacher but can't now read or even sign his name. He likes the garden but without considerable help can't do much in it. Nor is he especially sociable. He never was. The only person he wants to talk to is my sister and he's unhappy if she isn't in the same room as him all the time. Conversation is repetitive, superficial or non-existent... as I'm sure you can imagine. Music can irritate. Apart from a daily dog walk, his only entertainment is the TV (but only sport, game shows and the News), and he can't really follow those. My sister can't watch what she would like because he gets frustrated and angry when he can't follow those programmes. It's easier for her to avoid a sulk. Evenings, therefore, are especially boring and painful.
He would resist going into a care home because he is unaware of how dependent he is on E. (She doesn't have medical POA, so the LA would have to take the "best interests" decision for him.)
My outsider's view is that he has little quality of life at home, however - in large part because E is running on flat batteries. Through no fault of her own, she no longer has the energy or patience needed to keep him stimulated and happy. Painfully slow dog walks, watering plants or sweeping leaves in the garden and dozing in front of the TV isn't a great life.
E also needs a life but has none. She needs longer spells of respite than occasional sitting help could provide. Periods of agency in-home care is one option, but that would mean she would have to go away somewhere - hugely expensive and impractical. Moving her husband into a care home at regular intervals for a week or two might be best, if possible (rooms hard to come by though?). But would short stays prove more destabilising for him? I believe it can take weeks for someone to settle into that environment (especially if they're resistant in the first place)?
So... Is my sister right to think that this "betwixt & between" situation of her husband is unusual - perhaps because he has early-onset AD so his rate of physical deterioration is slower than for most? - and that a care home would be inappropriate until his "awareness" is much reduced so he more readily accepts his situation and the activities on offer there? Or is this relatively common and E "simply" needs to try and put aside her conscience and feelings of guilt about breaking her promise to care for him to the end and abandoning him (though she would, of course, visit.)?
I feel her situation can't be unique. Would welcome any thoughts. (If you got to the end of this, thanks!)
I have a question regarding my BIL's apparent "betwixt & between" level of awareness - a state he's been in for years now and which, in a horrible way, is making choices that are already difficult for her even harder. I'd love to hear your thoughts. Please bear with me while I give you some details that may help you to comment. Sorry this will be rather long!
My BIL's symptoms started showing in 2003, when he had to retire at 55. Diagnosed with AD in 2011. My sister (E) gave up work in 2012 to look after him and is now close to mental, physical & emotional breakdown. I'm sure this is familiar to many of you.
She has just triggered LA involvement and awaits a date for assessments (as urgent case).
However, although she feels unable to continue caring for him at home for much longer, she worries that even if the LA assess him as eligible for care, he is still too "aware" for a care home to be appropriate, either for short respite stays or full-time. This week, for the first time, she visited a home (luxury one they couldn't afford for more than a few weeks and the LA wouldn't fund), with a view to respite stays. She left in despair. "The place was lovely, people nice, but he would hate it, even if I could get him there. What would he DO all day? I can't do it to him. But I can't go like this either."
My BIL should meet all the eligibility criteria in terms of mental capacity (last cognitive ability test score 16/30 - so is in Stage 6), task capability, safety issues etc. He couldn't look after himself at home and needs 24/7 care.
BUT most of the time he doesn't realise how bad he has got. Since July he has reluctantly attended a Day Centre once a week (this, plus some family help earlier this year is the first respite E has ever had). He considers himself to be nowhere near as bad as all the other (much older) people, and finds all the "silly" activities "beneath" him. Although much of the time he behaves like a toddler, he's not yet at the stage where he will happily fold towels, rummage in a box of life memorabilia, complete a jigsaw designed for a 2-year-old... Doesn't want to play dominoes or bingo etc (I suspect because, in truth, he couldn't do them without help!). But nor can he cope with more adult games like scrabble or even simple crosswords.
He used to be an English teacher but can't now read or even sign his name. He likes the garden but without considerable help can't do much in it. Nor is he especially sociable. He never was. The only person he wants to talk to is my sister and he's unhappy if she isn't in the same room as him all the time. Conversation is repetitive, superficial or non-existent... as I'm sure you can imagine. Music can irritate. Apart from a daily dog walk, his only entertainment is the TV (but only sport, game shows and the News), and he can't really follow those. My sister can't watch what she would like because he gets frustrated and angry when he can't follow those programmes. It's easier for her to avoid a sulk. Evenings, therefore, are especially boring and painful.
He would resist going into a care home because he is unaware of how dependent he is on E. (She doesn't have medical POA, so the LA would have to take the "best interests" decision for him.)
My outsider's view is that he has little quality of life at home, however - in large part because E is running on flat batteries. Through no fault of her own, she no longer has the energy or patience needed to keep him stimulated and happy. Painfully slow dog walks, watering plants or sweeping leaves in the garden and dozing in front of the TV isn't a great life.
E also needs a life but has none. She needs longer spells of respite than occasional sitting help could provide. Periods of agency in-home care is one option, but that would mean she would have to go away somewhere - hugely expensive and impractical. Moving her husband into a care home at regular intervals for a week or two might be best, if possible (rooms hard to come by though?). But would short stays prove more destabilising for him? I believe it can take weeks for someone to settle into that environment (especially if they're resistant in the first place)?
So... Is my sister right to think that this "betwixt & between" situation of her husband is unusual - perhaps because he has early-onset AD so his rate of physical deterioration is slower than for most? - and that a care home would be inappropriate until his "awareness" is much reduced so he more readily accepts his situation and the activities on offer there? Or is this relatively common and E "simply" needs to try and put aside her conscience and feelings of guilt about breaking her promise to care for him to the end and abandoning him (though she would, of course, visit.)?
I feel her situation can't be unique. Would welcome any thoughts. (If you got to the end of this, thanks!)