Advice about my mum, and some questions about dementia

Discussion in 'ARCHIVE FORUM: Support discussions' started by john-w, Feb 25, 2007.

  1. john-w

    john-w Registered User

    Feb 23, 2007
    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.
  2. amethyst

    amethyst Registered User

    Feb 24, 2007
    N E Lincs, UK
    Hi John
    I'm new to this forum and my mum has only just been diagnosed with short-term memory loss.
    I'm sure you will get more helpful replies than mine, as others will have more experience than I.
    Years ago though, my sister-in-laws mum had AD and she would tell us about her mum and we would happily listen, not realising that one day the things I remember her saying would be of help to me with my mum.
    The Lords prayer is in the long-term memory and as the long-term memory isn't usually affected this is why they can remember things from long ago. The music as well, I read on here yesterday, where someones mum reacted positively to music from the 40's. The same with my mum when I had previously put on some 40's music in the car, her reaction had been amazing because it is in the long-term memory.
    My sister-in-law had said that as dementia moves along they "forget" how to eat. Forget how to go to the toilet, etc. My colleagues gran is in this stage of dementia as well. Its part of the process of dementia.
    I have also noticed that where I might think of an instance where I have had a problem with my mum, i.e. I have gone away worrying about it. I have noticed that she doesn't Its over with and out of her mind. She doesn't dwell on anything, which I suppose is because of the loss of short term memory.
    So, I don't know if they do sit and worry about their dementia. It will crop up where they notice it but they don't dwell on it.
    This is a bit of a response to your problem and as well we know there are no solutions. You say that your mum looked after you so well when she and you were younger. Then perhaps your mum, if she were that person now, wouldn't want you to get really down with her situation and that she would want you to put yourself first. She wouldn't want your health to suffer. I know this is easy to say because I have to say it to myself, its believing it thats difficult.
    Good luck.
  3. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya John, welcome to TP. So many questions, and so many that I think are unanswerable.
    Most days my mum eats well - some days she doesn't. I think the answer is to give mum as much time as she needs to eat. Aim to get calories in. Make sure that she drinks water regularly - dehydration can cause sleepiness.

    We play mum music that we know was familiar to her in her childhood, and early adulthood; we put on DVD's when we sit with her of old musicals that she used to enjoy. We cannot tell what she is hearing or thinking - - but all we can do is our best to try and make her feel safe.

    I am so pleased that you were actually offered an Alzheimers Society leaflet - that is more than has ever happened to us - but hopefully it will become the norm.

    TP is a fantastic resource - the amount of knowledge that our members have, exceeds anything you will find elsewhere (in my opinion) - it has the added bonus, that we are real people who try to support one another.

    Great that you have found us. I am confident that others will soon reply.
    Love Helen
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi John, and welcome to TP.

    This is something that worries me so much about my husband going into respite, or having to be admitted to hospital. It's so degrading, to be told 'you've got a pad on'. I know accidents happen, but ther's no excuse for forcing people to be incontinent.

    John also has his eyes closed a lot of the time. I think the world is so confusing, it's easier for him to retreat into his own world. He also insists on going to bed early, although this means that we both have disturbed nights.

    I don't think John is really aware of his condition, or worries about it. He seems quite content to rely on me. But I think what varies from person to person.

    I had the same experience with my mum. She was in hospital following a massive stroke, and although physically able to speak, was completely incomprehensible. When the hospital chaplain started to say the prayer, she joined in! After that I'm sure I detected her repeating the words on several occasions. She was the same age as your mum.

    Best wishes,
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hi John, , Another warm welcome to TP. Your devotion to your mother is very moving.

    I don`t think I have ever seen such a comprehensive account of Alzheimers as in your post and the responses that follow.

    So many questions and so few answers. Here are mine.

    Re- Incontinence;

    Not only are older people put through indignities by some hospital and care staff. In 1983, 24 years ago, I was hospitalized, on traction, with slipped discs and a trapped nerve. I wasn`t allowed to get up even to go to the toilet.
    Once, during the final `toiletting` of the night shift, I was unable to pass water, even though I felt the need. The nurse just stuck a waterproof pad underneath me and said `You`ll just have to use that ` I was mortified.
    I think this is something I`d ask about if my husband were to be admitted to hospital or an assessment unit.

    Closed Eyes;

    My husband often sits with his eyes closed too. Sometimes, if I`ve left him in the living room, apparently watching television, when I return, his eyes are closed, the TV is on and he seems startled when I enter, as if he`s been in a world of his own.

    Awareness of Condition;

    My husband is very aware of his condition. He knows when he has a `fuzzy` head that it will pass in an hour or so. He knows he has good days and bad days. He understands his confusion is caused by tangles in his brain. Unfortunately, when he is feeling well, he thinks his Alzheimers has gone.

    Regards Sylvia x
  6. john-w

    john-w Registered User

    Feb 23, 2007
    Thank you so much, for your replies so far.

    I think that's a really good point, and that it may actually be part of the problem.

    I think she may still want to protect me from anxiety, even if that involves her keeping her own anxious thoughts to herself now.

    But if she would only open up her mind, if she was willing to, and if she could, then I might better be able to do something.
  7. john-w

    john-w Registered User

    Feb 23, 2007
    Trying to get the patient to take the desired amount of fluid (8 cups a day) can be very difficult indeed, particularly if the patient is sleepy for long periods.

    I never quite established whether there is a rhythm to being alert and drowsy during the day.

    At one stage I thought my mum seemed to be alert and then drowsy in a 2-hour cycle during the day. So if she was alert at 10am, then she'd be alert at 12, and so on. And if you wanted to do something, like get her up, or get her to take a drink, or whatever, then that was the best time.

    But I wasn't sure.
  8. john-w

    john-w Registered User

    Feb 23, 2007
    I didn't realise that lack of fluid can cause drowsiness.

    I suppose it's just as important as food intake, but not so obvious to the novice carer.

    Getting the patient to accept drinks can be as problematic as getting them to eat.

    I can recall occasions where I've spent 15 minutes or so trying to cajole my mum into taking a cup of tea, without success.

    And then I've left the cup of tea, within her reach, and when the "time is right", she has simply opened her eyes, seen the cup, and drunk it.

    Does anyone know of any soups which are particularly nutritious, and preferably available from supermarkets. My mum does still like chicken soup. There are plenty of varieties on supermarket shelves advertised as "low calorie", but not many advertised as being "high calorie" and nutritious. At the moment I'm using Campbells. I'm not actually sure about the nutritional values of soups. The label on Campbells soup says it's mostly water.
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I think "cream of" soups have a higher calorie count - you can even add more actual cream to bump it up a bit. Also, from health food stores, and the like, you can get protein powder (normally used by body builders etc). A couple of spoonfulls of that doesn't alter the taste, and makes a standard soup much more nutrious. Alternatively, adding a beaten egg can help, although that will thicken it. Having said that, how is she about taking pills? Because a multi-vitamin supplement would allow you to simply worry about getting enough calories into her, without worrying about the lack of vitamins and minerals that can be absent from thing like tinned soups.

    It's difficult: we've been so well trained to cut down on extra fat etc, but when you're dealing with peaple in this situation, you have to reverse all that thinking.

  10. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    You could maybe add a bit of cream to it if you think she would take it. Lots of posh restaurants put a swirl of cream on soup - or they used to, not sure about now with all the cholesterol scare stories!
  11. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    think we posted at the same time about the cream Jennifer!
  12. john-w

    john-w Registered User

    Feb 23, 2007
    I think it's very true to say that, right now, my mum would not want to be a "burden".

    But that isn't a justification for taking that "wish" at it's face value. Quite the opposite in fact.

    If a person says "I don't want to be a burden", then that's all the more reason why you need to help them, I think.
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Ah well, cream (and chocolate) is never far from my thoughts!
  14. john-w

    john-w Registered User

    Feb 23, 2007
    Campbells (which I'm using) are "cream of" soups.

    My mum is currently taking 2 Complans a day, which I think have a range of vitamins and such.

    During her time in hospital my mum didn't like a lot of the food, and was being given Fortisip and Forticream as a supplement.

    When she came out of hospital I enquired about Fortisip at Boots, and the pharmacist there gave me the impression that Complan was basically as good, but a lot more economical.

    I think Fortisip costs £2.50 per single canister/meal, whereas Complan works out at 72p per packet/meal.
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I think you're probably right about complan versus fortisip. Incidentally, did you know that in certain circumstance you can get the fortisip on prescription? I vaguely remember they were trying to stop doing that (in the name of cost savings :rolleyes: ) 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.

  16. Hello John

    This may not be of too much help just now, but it's how I deal with stuff...

    I read all you had to say. Very clearly put.

    I see in you what reminds me of me when my father became more and more affected by AD. It's disrupted our family routine daily for so long now and for a time I tried to analyse everything bit by bit and intellectually assess each new problem and situation.

    Eventually I was beaten down and had to accept there was so much what I couldn't change. More than that, I had to make room inside for the cruel truth that things would be getting much worse as the months went past.

    Now this may seem all far too negative an outlook to work through, but actually it has built within me a resilience to keep pushing on and be there for my father - as a lady in the home said to us recently, it's "payback time".

    Exasperation is inevitable, with disease, nursing standards, nursing homes in general, red tape, and most of all with the cruel deterioration we see in our loved ones. But somehow a bit at a time we work on through, even though more and more is slipping out of our grasp.

    One thing's for sure - you're not alone.

  17. Áine

    Áine Registered User

    Just with an eye to our policy on advertising on TP ....... it's probably worth saying that "other products and suppliers are available" :)
  18. john-w

    john-w Registered User

    Feb 23, 2007
    I had sort of been wondering (or trying not to wonder) where it all might lead.

    Besides all the practical issues which seem to occupy a growing chunk of the day, there's a whole further dimension to the issue, which I suspect bothers everyone else, who is either seriously ill themselves, or who is a relative of somene who is, namely: "why is this happening".

    Are we helpless pawns in a mechanical universe, ticking along like a clockwork mechanism, unaware and uncaring of our predicaments. Or is the world more subtle than scientists would have us believe. Is this a meaningless nightmare, or there some kind of meaning in it.

    It's interesting that the thing which resonated in my mother's failing mind was a childhood memory of something religious.

    Some very clever people have pondered these questions over the ages (and they are not the ones in the hospital, either).
  19. ludwig

    ludwig Registered User

    Feb 8, 2006
    The answers are, of course, I dont know. My mum died at Xmas after almost 2 years of dementia. I was lucky in that I have two sisters who lived close to her (I'm 70 miles away) and we shared the load. We only accepted she needed 24 hr care about 2 weeks before she died.

    Now my Mum was the original independent, free thinking woman, who loved her independence, yet at the end she was an incontinent almost incoherent wreck who couldn't even walk. She would have been heartbroken if she could have seen herself just 3 years ago. The last two years were really hard, she said some awful things and we made mistakes but we resolved that she would stay at home as long as possible and we would do everything we could for her. Quite simply we agreed we owed her big time and if it was possible we'd do it. Note this is not intended as 'how to do it' there were 3 of us and everyones circumstances are different.

    Youcan only do your best and I can only relate that immediately she died we had this huge sense of release and peace. I miss her dreadfully but in one sense at least I'm glad shes out of it.
    Was the sense of peace purely psychological/comforting for us? Dont know but it was thereall right.
    I cant answer your questions but speaking as someone whos been through it (and especially the 'mourning twice' problem) and is trying to come out the other side all I can say is looking back we did our best for her, perhaps feel a bit guilty (as you inevitably do) but she has release now.
    It doesn't seem so mechanistic on reflection and I'm the original agnostic! Perhaps there is a purpose I dont know.

    Just do your best and perhaps dont think about it! Enjoy whatever you can of your mum (and it may not be much) but shes in there somewhere, sometimes.
    Good luck and keep smiling,
  20. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Dear John-w, so many questions I can't answer, but I'll offer mine on this.....

    Pawns? Maybe .... Mechanical universe? Maybe .... Helpless ... no way .....
    When I struggle with my faith it helps me to think 'Jethro Tull', 'Stephenson' .... pioneers of invention .... they were merely 'pawns' but grasped situations and problems and made a difference to quality of life ..... that's how I see MY role as carer to mum ... I can't quantify or rationalise anything ..... just keep doing my best from day to day to keep her as happy and safe as she can be and me as sane as possible .......

    Just thought I'd throw that in, in case it helps....

    Love, Karen, x

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.