1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    Can any one help with problems of diagnosis
    i know at the end of the day it does not change things
    But as i am sure you all it is so frustrating
    love BEL X
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Bel,
    Who has your husband actually seen for a diagnosis?
    (Thanks for the PM)
    Love Amy
     
  3. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Diagnosis

    When I first tried talking to my mother's GP they treated me as the one who was mad. It was the same at the hospital Rapid Results Clinic ("if your mother wants to go out for a walk after dark in her nightclothes she has a perfect right to do so, it isn't illegal, is it?" (Wish I had tape recordings of those discussions!) Couldn't complete the first memory clinic session as my mother lost her temper with all the "silly questions". My brother managed to get her to the second memory clinic appointment on the 19th April, and I suppose there must have been some sort of diagnosis as Aricept was prescribed. But I don't know whether the psychiatrist said anything about her care. She was not fit to be left alone with only 2-3 care visits a day.

    It was probably when Aricept was prescribed that she decided to end it all by self-starvation.

    Lila
     
  4. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Memory problems

    My mother in law has a non existent short term memory, although I don't think she has dementia as she can hold a good conversation with people and remember past events. She is 91 and very frail and ill physically. She now needs 24 hour care and is not eating properly, even when people are there.
    She is in hospital at the moment but we need to persuade a still very independent and stubborn woman that she needs looking after. At the end of the day, there is no way anyone can be forced into a care home unless they give their permission. It is only right, but still very difficult for relatives and neighbours, especially as she lives on the Isle of Wight, which makes visiting quite expensive and time consuming. The ferries charge extremely high fares.
    There does seem to be a general lack of support and guidance for carers, although the IOW. is much, much better than Kent!
    From Kayla
     
  5. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I have memory problems too, but that is probably mainly a result of stress, trying to look after someone with dementia without proper support, and now the shock of bereavement.

    Lila
     
  6. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Lack of appetite.

    Dear Lila,
    My mother-in-law is now in a care home and very ill. She is lying in bed for most of the day and she isn't eating. She is 91 and I think she has now given up, as she has always been so determined and cheery before. I have heard of old people not wanting to eat, because they probably just don't feel hungry any more. My mother in law has a very poor short term memory, but not dementia.
    She is very old and is reaching the end of a long and mainly happy life. It is sad and distressing, but unfortunately quite natural. I have always thought of my m-i-l as if she were a second mother and at Christmas she came and stayed with us and it was lovely to have her at home.
    Drugs don't necessarily make that much difference and loss of appetite may have happened without Acricept.
     
  7. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I'm glad that in your mother-in-law's case it seems quite natural, Kayla.

    I hope she is getting better care than my mother was in the hospital where she died.

    Lila
     
  8. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Of course my mother's death may have been entirely natural and unavoidable, but there were so many unanswered questions, and I think if a death is unexpected there should be an inquest. Even if the outcome of the inquest is "we don't know". There should have been lessons to be learned.

    Lila
     
  9. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Dear Lila,
    When my father was in hospital after a stroke, twelve years ago, we were very unhappy with his treatment and although he didn't want to complain, one of his neighbours wrote to our MP. He looked into the matter and there was an investigation into what went wrong at the hospital. My Dad finally had the operation he desparately needed and I think we received an apology from the hospital authorities.
    If you are not satisfied with your mother's care, your MP should be able to help you make a complaint. It could be that you are not the only person who has suffered an unexpected loss. Your MP would have a clearer idea of the whole situation. You would probably feel better for having taken action of some kind. We have found MP's from both main parties to be very helpful, although it might just be that this is a marginal seat!
    My Mum didn't eat much in hospital either and lost a great deal of weight, which made her very weak and I think we nearly lost her. I don't think patients get much help with feeding and the meal just gets taken away barely touched. Visitors could help at meal times, but our local hospital has really restricted visiting times. I don't think elderly patients get treated very well during hospital stays and the whole experience is very distressing for them.
    One answer would be smaller, more friendly wards and care assistants for the elderly to help with social needs. I was really annoyed that they don't even have names above the beds anymore and everything is so impersonal. I hope Mum never has to stay in hospital again as it was an awful experience for her (and me).
    Sorry I've gone on so long.
    Kayla
     
  10. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    I'm sure you don't have to apologize for "going on", Kayla. (After all, people can always skip messages they don't have time to read.)

    I will go along to the hospital and try to talk to the people, including the nurse who accused me of neglecting my mother. Of course I have to try to talk to them before involving her MP.

    It is a long way from where I live and a long way from my mother's house. That was the main problem. If I'd known she would only be there such a short time I'd have got a cab each day, but we were told 4 weeks. Having lost track of the passage of time she may well have thought we'd abandoned her there. (She was very good at thinking of herself as abandoned, even before she got ill.)

    Of course I don't know how much effort they made to get her to eat and drink. I know how difficult it was. I don't know who decides who gets put on a drip.

    On the day I visited they'd just given her a shower and washed her hair, I thought that must mean she's OK as obviously on a bad day you wouldn't try to do that, would you?

    She was put in a day-room in a semi-circle, with a noisy radio on, no-one asked the patients if they wanted to listen to that noise, she obviously hated it, and of course in those circumstances we didn't dare complain. That is one of the reasons why she was so reluctant to go in a home, the thought of sitting in one of those day-rooms with compulsory radio or TV, (I know homes aren't all like that), I mentioned in my letter to the hospital that if patients want to listen to the radio etc. they should have headphones rather than inflict the same noise as everyone else. It is very depressing to think of her being forced to spend her last few days in such a place, perhaps she thought it was permanent and therefore there was nothing left to live for.

    Lila
     
  11. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Lila, how old was your mother? How long had you felt that she was ill before she went into hospital? When will it be the right time to let it rest?
    Lila you had such a tough time before your mum died being at loggerheads with your brother, travelling on the bus to see mum; I am sure your mum would now want you to have some peace, and move on with your own life. What do you want for your own future?
    Take care, love Helen
     
  12. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Well I will stop posting in here if that is what you mean.

    Lila
     
  13. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    "Well I will stop posting in here if that is what you mean."


    Hi Lila
    I'm sure that is not what Amy means....I think she is trying to help you through this terrible time....as we all are...
    Go ahead ,if you are able to get there, and see the people involved...they're obviously keen to talk...
    And keep posting!
    Take care
    Love
    Wendy
    x
     
  14. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    My MIL has died peacefully

    My lovely mother-in-law died peacefully in her sleep, in the early hours of this morning at the age of 91. She stayed with us at Christmas and we enjoyed having her with us. My husband has been down to the Isle of Wight to help her while she has been unwell and she has spent time in hospital and a couple of weeks in a care home. I wish I could have arranged care for our horses and dogs so I could have gone too, but it was all rather complicated. In the end she passed away more quickly than expected, but we've visited when we can and telephoned regularly.
    I shall miss her as I've known her for 37 years, since I was eighteen. She lost her own Mum at 12, but was like a Mum to so many other people and she was cheerful to the end. I'll miss her but at least I still have many happy memories. She had a very, very short term memory, but did not have dementia. We were able to chat on the telephone. There's nothing I can do to bring her back, but I think she had a long and mainly happy life. I must remember all the very positive experiences that we shared together. I'm sorry this doesn't really have anything to do with dementia but I just felt that I had to tell some one about her.
    Kayla
     
  15. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Kayla,
    I am so sorry for your loss - your MIL sounds to have been a lovely lady. And what a legacy, the good memories that she has left you with, and the positive impact she has obviously had on your life. Will you be able to get to the funeral, or will you be having your own way of saying a final goodbye?
    You have something to do with dementia, and as I understand it we are here to support one another.
    Love Helen
     
  16. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Lila,
    No that was not what I meant at all Lila, I simply asked some questions. My mum recently had a fall, and I think that we could have kicked up a stink; but we asked some questions, and got some answers (not entirely to our satsfaction.) Should we pursue it, maybe, but would it make mum's life any better, would it make our lives any better? We feel that we have said enough to make sure that the same accident will not be repeated, for anyone. I was really angry, and upset when I saw the mess my mum's face was, but holding on to that anger will not do mum, dad or me any good.
    I am concerned for you Lila, my opinion (and that is all it is), is that it is time to let go. Grieve for your mum, remember all the good times and let her memory be the inspiration for you to build a happy future. I for one would love to hear of the good things that you go on to do, that is why I asked 'What do you want for your future?'
    Best wishes, Helen
     
  17. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    My MIL's funeral

    Dear Amy,
    There is a two week wait for funerals at the IOW crematorium so hopefully, we shall have plenty of time to arrange for the dogs to go into kennels and get some one to look after the horses for a day. My husband is going to the IOW on Monday to help with the arrangements and sort out financial details. The house was about to be put on the market to help pay the care home fees, but it will have to wait now until after Probate has been sorted out. (We understand that POA ends when the person dies)
    It is awkward trying to arrange things on the island but my BIL and SIL live there and can organise more easily. If she'd stayed in London life would have been much simpler! Everything seems a bit strange at the moment. It's the end of an era. We knew she was poorly and didn't have much longer to live, but it's still a shock. My daughter was very upset, (she's 27) and I didn't know what to say to comfort her, except that there has to be an end to every beginning and it is a sad fact of life. Nanna died peacefully in her sleep, which is comforting and at least we had that lovely Christmas with her staying with us.
    Kayla
     
  18. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Kayla,
    Is it your daughter's closest experience of death? If so maybe she neds to be reassured that the pain will pass; that what she is feeling is normal, and a consequence of loving.
    Love Helen
     
  19. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Reactions to death

    Dear Amy,
    We have had a lot of pets which have died and my daughter lost both grandfathers about six years ago, nine months apart. One was 90 and one was 84. She was very upset then as well, and I asked her to look after the catering for my father's funeral. She made an excellent job of planning and preparing a buffet lunch, and organising the shopping. She has always been close to her grandparents and we've spent Christmas and holidays together, so she is bound to be upset. Maybe she didn't realise how ill her Nanna actually was and so it was more of a shock to her.
    Kayla
     
  20. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    In my experience one death never prepares you for another, each is unique.

    Lila
     

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