My mum (aged 92) has dementia. She also has difficulty getting-up unaided, or walking, and incontinence.
I'm looking after her at home. For me, this is a conscience-issue. My mum spent a lot of her life trying to do her best for me. For me to do anything else would seem to me like a betrayal of something very important.
She's just been in hospital, where they seemed to be seeing if they could do anything for her, and has just come out, and I think, is in a less-good condition than when she went in.
My main immediate worry is my mum's appetite. She's mainly surviving on 2 Complans a day, plus some chicken soup, and cups of tea with sugar. Her taste in foods can be very volatile, and it's really scary to wonder what might happen if she decides that she doesn't want to take the Complan. The hospital doesn't tell you about what you can do in situations like that (am I supposed to call NHS Direct if she won't eat anything).
Very little information about dealing with dementia patients seems to be given to carers by the hospital. One of the staff there gave me a printed card for the Alzheimer's Society. It seemed to be handed out, I think, as a courtesy. The person didn't say: "this website can help you with your problems better than we can". I've only just discovered this forum, and it may contain the answer to some of my questions (though I haven't been able to wade through the forum sufficiently to find them).
Last Summer I happened to notice a book review in the national press, of "Learning to Speak Alzheimer's" by Joanne Koenig Coste. I liked that approach, and got the book, and had been trying to follow some of it (probably not very well). Joanne Coste seemed to promote a "philosophy of hope" (at least that's how it came across to me), in suggesting that you might be able to do a lot more for the patient than you think.
A suggestion in Joanne Coste's book (I think), is that if dementia patients don't want to eat then there might be a reason for it (it isn't necessarily just a whim). Although finding the answer might not be easy.
The view of the hospital about my mum seemed to be "there's not much that can be done", "she needs convalescence". Simply looking at my mum, eating very little, and with her eyes closed a lot of the time, she doesn't appear to be in a very good condition. But I wonder what's going on in her mind, and if I could do anything for her, if only I know what it was.
When my mum came out of hospital it was the first time she'd been fully incontinent. Being in the hospital seem to have brought that on more than it had been. I think that stems from the practice of sticking people in incontinence pants, and letting them sit there for the day, simply because the hospital haven't got the support staff to take patients to the toilet every 2 hours. It just a matter of staffing arithmetic.
I think my mum has always had anxieties about toiletting. About worrying whether she could get to the commode, and the consequences of not getting there in time.
What goes through the mind of a patient who knows that they want to go to the toilet and knows that they are effectively having to go in their pants - anxiety, shame, lack of self-worth? And those feelings presumably recur throughout the day. I couldn't see much sign of anyone in the hospital thinking about issues like that. There were a lot of mental health professionals, who were frequently taking lots of notes, but actually seeming to do precious little to help the patient.
Another big puzzle that I have is that my mum often keeps her eyes closed a lot of the time. I think she's trying to shut out the world. And again, I'm not sure exactly why she does it, or if there is anything I can do about it.
I wonder how patients feel about their own condition. I have an impression that my mum understands her condition and is distressed about it. Is there anything I can do to make her feel more comfortable and less anxious (without appearing anxious about it myself, and making any distress worse).
I've sometimes noticed my mum dreamimg (making rapid eye movements and leg twitching). What sort of dreams do dementia patients have? I know that when I dream, I can recall being in situations from many years ago, even when I was at school many years ago. I know that my mum still likes to listen to dance music from the 20's. Does she dream of dancing the night away? It must be distressing to have such dreams, if she does, and then wake to find herself imprisoned in her present condition. I've asked her about dreams, but she doesn't say much.
There was one unexpected experience during my mum's stay in hospital. One afternoon a lay preacher came round the ward. My mum has not been to church since she was in her early teens (70 years ago), excepting occasional marriages, etc. The lay preacher started to recite the Lord's Prayer. And my mum, who can generally recall very little, proceeded to recite the entire thing perfectly. I was quite surprised. I've never ever heard her say it. My mum seemed to feel very positive about it. In my opinion, that lowly-paid (possibly voluntary) lay preacher did more good than any of the medical professionals. Afterwards I tried to find some prayers on the Internet and tried reciting a few. There was a very long one (The Apostles Creed) which my mum didn't recite, but responded to by saying "that was nice", after every verse.
My mum also responds to old 20's and 30's dance records. She's got some CDs which she likes to listen to.
At the moment I don't understand much at all, and my main concern is to get some food into her. My mum doesn't look too good, but I'm wondering if there are things I could say or do, to find out about her anxieties, if any, and aleviate them if possible, and get her to eat properly, and become more alert. Or if this is just part of an inevitable decline, largely beyond any control.
I'm looking after her at home. For me, this is a conscience-issue. My mum spent a lot of her life trying to do her best for me. For me to do anything else would seem to me like a betrayal of something very important.
She's just been in hospital, where they seemed to be seeing if they could do anything for her, and has just come out, and I think, is in a less-good condition than when she went in.
My main immediate worry is my mum's appetite. She's mainly surviving on 2 Complans a day, plus some chicken soup, and cups of tea with sugar. Her taste in foods can be very volatile, and it's really scary to wonder what might happen if she decides that she doesn't want to take the Complan. The hospital doesn't tell you about what you can do in situations like that (am I supposed to call NHS Direct if she won't eat anything).
Very little information about dealing with dementia patients seems to be given to carers by the hospital. One of the staff there gave me a printed card for the Alzheimer's Society. It seemed to be handed out, I think, as a courtesy. The person didn't say: "this website can help you with your problems better than we can". I've only just discovered this forum, and it may contain the answer to some of my questions (though I haven't been able to wade through the forum sufficiently to find them).
Last Summer I happened to notice a book review in the national press, of "Learning to Speak Alzheimer's" by Joanne Koenig Coste. I liked that approach, and got the book, and had been trying to follow some of it (probably not very well). Joanne Coste seemed to promote a "philosophy of hope" (at least that's how it came across to me), in suggesting that you might be able to do a lot more for the patient than you think.
A suggestion in Joanne Coste's book (I think), is that if dementia patients don't want to eat then there might be a reason for it (it isn't necessarily just a whim). Although finding the answer might not be easy.
The view of the hospital about my mum seemed to be "there's not much that can be done", "she needs convalescence". Simply looking at my mum, eating very little, and with her eyes closed a lot of the time, she doesn't appear to be in a very good condition. But I wonder what's going on in her mind, and if I could do anything for her, if only I know what it was.
When my mum came out of hospital it was the first time she'd been fully incontinent. Being in the hospital seem to have brought that on more than it had been. I think that stems from the practice of sticking people in incontinence pants, and letting them sit there for the day, simply because the hospital haven't got the support staff to take patients to the toilet every 2 hours. It just a matter of staffing arithmetic.
I think my mum has always had anxieties about toiletting. About worrying whether she could get to the commode, and the consequences of not getting there in time.
What goes through the mind of a patient who knows that they want to go to the toilet and knows that they are effectively having to go in their pants - anxiety, shame, lack of self-worth? And those feelings presumably recur throughout the day. I couldn't see much sign of anyone in the hospital thinking about issues like that. There were a lot of mental health professionals, who were frequently taking lots of notes, but actually seeming to do precious little to help the patient.
Another big puzzle that I have is that my mum often keeps her eyes closed a lot of the time. I think she's trying to shut out the world. And again, I'm not sure exactly why she does it, or if there is anything I can do about it.
I wonder how patients feel about their own condition. I have an impression that my mum understands her condition and is distressed about it. Is there anything I can do to make her feel more comfortable and less anxious (without appearing anxious about it myself, and making any distress worse).
I've sometimes noticed my mum dreamimg (making rapid eye movements and leg twitching). What sort of dreams do dementia patients have? I know that when I dream, I can recall being in situations from many years ago, even when I was at school many years ago. I know that my mum still likes to listen to dance music from the 20's. Does she dream of dancing the night away? It must be distressing to have such dreams, if she does, and then wake to find herself imprisoned in her present condition. I've asked her about dreams, but she doesn't say much.
There was one unexpected experience during my mum's stay in hospital. One afternoon a lay preacher came round the ward. My mum has not been to church since she was in her early teens (70 years ago), excepting occasional marriages, etc. The lay preacher started to recite the Lord's Prayer. And my mum, who can generally recall very little, proceeded to recite the entire thing perfectly. I was quite surprised. I've never ever heard her say it. My mum seemed to feel very positive about it. In my opinion, that lowly-paid (possibly voluntary) lay preacher did more good than any of the medical professionals. Afterwards I tried to find some prayers on the Internet and tried reciting a few. There was a very long one (The Apostles Creed) which my mum didn't recite, but responded to by saying "that was nice", after every verse.
My mum also responds to old 20's and 30's dance records. She's got some CDs which she likes to listen to.
At the moment I don't understand much at all, and my main concern is to get some food into her. My mum doesn't look too good, but I'm wondering if there are things I could say or do, to find out about her anxieties, if any, and aleviate them if possible, and get her to eat properly, and become more alert. Or if this is just part of an inevitable decline, largely beyond any control.
) but I believe that it hasn't been done yet. Also, in non-blind taste testing, I found that the complan were more palatable, but that's probably personal preference.
