Sorry folks, long one ... 'Are you sitting comfortably? Then I'll begin. (Yes, I'm THAT old!)
OK - quick recap: Mum, 89 years old (but a 'very young for her age' person), mid-stage Alzheimer's, pretty fit & mobile up until about 3 months ago, very bad short-term memory loss, lots of repetition but still mainly lucid. Still “knows her own mind”, though generally easy-going in nature. Lives in own bungalow with me as 24/7 live-in company & carer, but she’s losing her eyesight through macular degeneration, which limits interests & possible occupations. Obviously a depressing state of affairs for her/us. Can still watch TV, but not follow a plot for long. Doesn't wander, not incontinent (apart from a few recent occasional accidents). Ex Nurse, aware of what Alz. Disease is/becomes.
Became increasingly anxious in April, after a week's emergency Respite care (1st respite experience for either of us, excellent care). Mum has absolutely no conscious memory of it, but since being home has started to have nightmares about “I couldn’t find you” and “I was with a lot of people I didn’t know” and so on (& on & on & on ... ) and increasingly anxious about everything, but in particular being left alone, even for half an hour for me to go shopping. It doesn’t seem to be an attachment to home, as she will happily come out with me rather than being at home alone.
During the last 2 months, she has wanted to stay in bed all the time and her appetite for food has dropped off to nothing. I have tried all variations of getting her up, from 9am to 5pm, to try & break the pattern. She will stay in bed all day if left, but that leaves no window for food (or appetite for it, since she’s taken no exercise of any kind) so I don’t leave her there. I appreciate that while she is in bed she is not burning off any precious calories, but neither is she receiving mental stimulus of any kind, and her muscle tone – such as it was – is disappearing fast, not to mention her Quality of life. I’ve therefore been getting her up whether she wants to or not at about 11am latest to have breakfast (cereal & prunes, her preference), help her wash & dress, watch the lunchtime news etc. During the afternoon I try to take her out somewhere so that she gets a little gentle walking exercise at least, and some social interaction with someone other than just me. That’s been the plan, anyway.
In the last 3 weeks or so, she has become really weak on her legs. Not surprising, because I would guess she’s eating about 400 calories a day maximum and even that is just ‘whatever I can get her to eat’ rather than a balanced diet, and then only a mouthful or two. Full milk coffee, toast & marmalade, quarter of a sandwich (ham, fish paste or chicken usually), fish fingers, ice cream. After 2 mouthfuls she says “I’m full up” and then I try to spoon-feed her or finger-feed her a little more. Anyone who’s tried to feed a reluctant toddler will know how successful that proves to be! She’s always been quite a fussy eater, even when she had an appetite. She now weighs 4 stone 6 lbs.
Granted she is only 5ft tall and has always been petite, but 6 months ago she was 5 stone 5 lbs and not shakey. 4 years ago she was a healthy-looking 7 stone and really active (b4 Alz). She’s not ‘still losing weight’ now because she’s down to skin & bone – no more fat/muscle to lose.
THINGS TRIED:
Favourite foods (obvious)
Fortified drinks (from Dr., he prescribed a Variety pack to experiment with)
She doesn’t like them - Won’t touch them. I did manage to get some into her by incorporating mild flavoured ones into coffee, jelly desserts, fruit drinks etc., but not enough to do any good. (Getting her to drink more than a sip or two of anything is a lost cause too, although I do still try.) Also, although he did give me a prescription for them, the Dr expressed his reservations about them, in that he is concerned that over-reliance on them can lead to kidney failure.
Outside Carer coming in to give her a meal (theory being she might respond better to someone else)
This scared the hell out of her, and made her anxiety worse. "Who is this? Aren't you going to look after me any more? " We tried it for 3 weeks, reaction the same every time, followed by heightened anxious state for rest of the day.
Increasing amount of gentle exercise (to improve appetite) – lots of moaning & whingeing, even crying, not much exercise.
On one occasion (walking round the block locally) gave her a piggy-back home! On another, had to get a taxi. You can lead a horse to water ... etc.
Drumming up more Social interaction: tried that – didn’t work, extended family spread all over the country but none local, & extra ‘local resources’ like additional daycare not available.
Two weeks ago I called the Dr out for a home visit, at my wits end to know what to do with her, and very worried about how unsteady on her feet she had become.
All he could tell me is “I’m afraid this may be how she will go.” Don’t get me wrong, I know he’s only being truthful and straight with me, which I have always asked him to do. He’s a good, kind man and a good GP. But holy s**t, *** am I supposed to do now?
In the last week Mum has had several ‘near miss’ stumbles & falls (when I’ve caught her) & two actual falls. The first was on Saturday evening at Mike’s house; we had just arrived, she was in the act of sitting down on the couch when, instead of leaning back, she toppled forwards and pitched head first on to the carpet. No major damage done, just a little graze on her forehead; carpet-burn really. But worrying, obviously. Within 10 minutes Mum had no recollection of falling, no ill-effects.
Today (Monday) she toppled over backwards when getting out of bed to go to the loo at about 7a.m., hitting the back of her head and her arm on bedroom furniture on the way down. She didn’t lose consciousness at all, and only suffered a small cut to her head and another on her arm, and had a fright, and then embarrassment because she had wet herself. I lifted her back into bed, changed her wet PJs for a clean pair of pants, put a dressing on her arm and sat with her for 5 minutes until she was calm (fast asleep, in fact!). Then I put the kettle on for a cup of tea and heated her a wheat-bag in the microwave in case she felt cold (shocky). But she didn’t; when I woke her half an hour later, she was fine (if ‘fuzzy’, but only as is normal for her these days), no pain anywhere, good pulse, warm. Again, no memory of having fallen. At 9a.m. I phoned the health centre and asked for an urgent home visit. At noon the Dr arrived (not our own GP) and gave Mum a thorough check over; head, arms, legs, hips, collarbones, the lot. Slightly bent in a couple of places, but nothing broken. Afterwards I asked his advice about the lethargy > non-eating > no energy > lethargy roundabout. Basically, same answer as Dr #1. Kindly delivered, but the same. If she won’t eat, she will die.
So, my lovely friends, the experts` verdict has been spoken but - not being ready to knuckle under for that yet - I come to you for ideas. Please. Any ideas, however obvious, will be welcomed. Naturally I hope & expect I shall have tried many of them, but sometimes you can be so close to a problem that the blindingly obvious doesn’t occur to you. Help, please.
OK - quick recap: Mum, 89 years old (but a 'very young for her age' person), mid-stage Alzheimer's, pretty fit & mobile up until about 3 months ago, very bad short-term memory loss, lots of repetition but still mainly lucid. Still “knows her own mind”, though generally easy-going in nature. Lives in own bungalow with me as 24/7 live-in company & carer, but she’s losing her eyesight through macular degeneration, which limits interests & possible occupations. Obviously a depressing state of affairs for her/us. Can still watch TV, but not follow a plot for long. Doesn't wander, not incontinent (apart from a few recent occasional accidents). Ex Nurse, aware of what Alz. Disease is/becomes.
Became increasingly anxious in April, after a week's emergency Respite care (1st respite experience for either of us, excellent care). Mum has absolutely no conscious memory of it, but since being home has started to have nightmares about “I couldn’t find you” and “I was with a lot of people I didn’t know” and so on (& on & on & on ... ) and increasingly anxious about everything, but in particular being left alone, even for half an hour for me to go shopping. It doesn’t seem to be an attachment to home, as she will happily come out with me rather than being at home alone.
During the last 2 months, she has wanted to stay in bed all the time and her appetite for food has dropped off to nothing. I have tried all variations of getting her up, from 9am to 5pm, to try & break the pattern. She will stay in bed all day if left, but that leaves no window for food (or appetite for it, since she’s taken no exercise of any kind) so I don’t leave her there. I appreciate that while she is in bed she is not burning off any precious calories, but neither is she receiving mental stimulus of any kind, and her muscle tone – such as it was – is disappearing fast, not to mention her Quality of life. I’ve therefore been getting her up whether she wants to or not at about 11am latest to have breakfast (cereal & prunes, her preference), help her wash & dress, watch the lunchtime news etc. During the afternoon I try to take her out somewhere so that she gets a little gentle walking exercise at least, and some social interaction with someone other than just me. That’s been the plan, anyway.
In the last 3 weeks or so, she has become really weak on her legs. Not surprising, because I would guess she’s eating about 400 calories a day maximum and even that is just ‘whatever I can get her to eat’ rather than a balanced diet, and then only a mouthful or two. Full milk coffee, toast & marmalade, quarter of a sandwich (ham, fish paste or chicken usually), fish fingers, ice cream. After 2 mouthfuls she says “I’m full up” and then I try to spoon-feed her or finger-feed her a little more. Anyone who’s tried to feed a reluctant toddler will know how successful that proves to be! She’s always been quite a fussy eater, even when she had an appetite. She now weighs 4 stone 6 lbs.
Granted she is only 5ft tall and has always been petite, but 6 months ago she was 5 stone 5 lbs and not shakey. 4 years ago she was a healthy-looking 7 stone and really active (b4 Alz). She’s not ‘still losing weight’ now because she’s down to skin & bone – no more fat/muscle to lose.
THINGS TRIED:
Favourite foods (obvious)
Fortified drinks (from Dr., he prescribed a Variety pack to experiment with)
She doesn’t like them - Won’t touch them. I did manage to get some into her by incorporating mild flavoured ones into coffee, jelly desserts, fruit drinks etc., but not enough to do any good. (Getting her to drink more than a sip or two of anything is a lost cause too, although I do still try.) Also, although he did give me a prescription for them, the Dr expressed his reservations about them, in that he is concerned that over-reliance on them can lead to kidney failure.
Outside Carer coming in to give her a meal (theory being she might respond better to someone else)
This scared the hell out of her, and made her anxiety worse. "Who is this? Aren't you going to look after me any more? " We tried it for 3 weeks, reaction the same every time, followed by heightened anxious state for rest of the day.
Increasing amount of gentle exercise (to improve appetite) – lots of moaning & whingeing, even crying, not much exercise.
On one occasion (walking round the block locally) gave her a piggy-back home! On another, had to get a taxi. You can lead a horse to water ... etc.
Drumming up more Social interaction: tried that – didn’t work, extended family spread all over the country but none local, & extra ‘local resources’ like additional daycare not available.
Two weeks ago I called the Dr out for a home visit, at my wits end to know what to do with her, and very worried about how unsteady on her feet she had become.
All he could tell me is “I’m afraid this may be how she will go.” Don’t get me wrong, I know he’s only being truthful and straight with me, which I have always asked him to do. He’s a good, kind man and a good GP. But holy s**t, *** am I supposed to do now?
In the last week Mum has had several ‘near miss’ stumbles & falls (when I’ve caught her) & two actual falls. The first was on Saturday evening at Mike’s house; we had just arrived, she was in the act of sitting down on the couch when, instead of leaning back, she toppled forwards and pitched head first on to the carpet. No major damage done, just a little graze on her forehead; carpet-burn really. But worrying, obviously. Within 10 minutes Mum had no recollection of falling, no ill-effects.
Today (Monday) she toppled over backwards when getting out of bed to go to the loo at about 7a.m., hitting the back of her head and her arm on bedroom furniture on the way down. She didn’t lose consciousness at all, and only suffered a small cut to her head and another on her arm, and had a fright, and then embarrassment because she had wet herself. I lifted her back into bed, changed her wet PJs for a clean pair of pants, put a dressing on her arm and sat with her for 5 minutes until she was calm (fast asleep, in fact!). Then I put the kettle on for a cup of tea and heated her a wheat-bag in the microwave in case she felt cold (shocky). But she didn’t; when I woke her half an hour later, she was fine (if ‘fuzzy’, but only as is normal for her these days), no pain anywhere, good pulse, warm. Again, no memory of having fallen. At 9a.m. I phoned the health centre and asked for an urgent home visit. At noon the Dr arrived (not our own GP) and gave Mum a thorough check over; head, arms, legs, hips, collarbones, the lot. Slightly bent in a couple of places, but nothing broken. Afterwards I asked his advice about the lethargy > non-eating > no energy > lethargy roundabout. Basically, same answer as Dr #1. Kindly delivered, but the same. If she won’t eat, she will die.
So, my lovely friends, the experts` verdict has been spoken but - not being ready to knuckle under for that yet - I come to you for ideas. Please. Any ideas, however obvious, will be welcomed. Naturally I hope & expect I shall have tried many of them, but sometimes you can be so close to a problem that the blindingly obvious doesn’t occur to you. Help, please.
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