1. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Dear Friends

    I wonder if anyone has any suggestions about how to help my me talk to my Mum about relatives who have long since died but who she thinks are still alive and may help look after her? She has Lewy Body Dementia and so has flashes of insight, but for most of the time is locked in the past . She lives in an EMI Nursing home which she sometimes thinks is her workplace but recently she thinks is a pub. When I visit she will ask if I have seen her sisters or Mum and dad (long since dead). I reply that I have not seen them for a long time she gets andry with me as thinks thinks I live near them, If I go along with the fact they are alive she gets angry becuase they do not visit or take her home to look after her. If I say nothing she realises they are dead and gets upset and if I explain they died a long time ago she also gets upset. It is as if she is hearing the news for the first time and it is dreadfully upsetting. Whatever I say causes her to cry and become distressed, the carers are wonderful and do their best to comfort her but nothing seems to work. Has anyone any ideas?

    regards

    Geraldine
     
  2. suzie

    suzie Registered User

    Oct 26, 2003
    12
    coventry
    my dad sounds just like your mum, he's also in a home he thinks is his work place and he often asks have i seen his dead siblings. as he seems to forget my reply the next day and forget all yesterdays conversation, i simply tell him they've gone on holiday this week so i haven't seen them and thats why there not here to visit. he seems to except this quite happily and as he's sometimes convinced he went for a drink with them recently, he dosen't get distressed even if i say it everytime he asks.
    funny he sometimes thinks the home is the pub too.
    i never say his long lost relatives are dead because i think maybe it would be like hearing it for the first time for him.
    goodluck whatever you decide to say

    all the best
    suzie
     
  3. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Dear Suzie

    thanks for your reply I have found it useful. I just say they have taken a break in the caravan it seems to help. Mum sems to have settled down a bit, the home has changed her medication and it does seem to be working. Not so frightened and distressed...fingers crossed that it continues

    best wishes

    geraldine
     
  4. Jude

    Jude Registered User

    Dear Geraldine, This is a really difficult one isn't it!

    Both of my parents refer to dead rellies quite often. In my father's case he has hallucinations that they are sitting in the lounge with him and chats to them. No worries about this, because he seems to derive comfort from these conversations and I don't disabuse him of the idea that they are actually there.

    My mother often wants to go and visit her mother, who died at least 20 years' ago. I found it better to go through old photos with her and gently explain that Gran died years ago. Rather better than trying to tell white lies about it. I'm not very good at that. Whatever you say, she always ends up in tears, but the photos do help.

    The worst scenario with my Mother is these 'flashes' of insight. I find these really hard to deal with and really heartbreaking. Usually, after a short nap, she wakes up suddenly and is totally lucid. Wants to know where she's been for the past xxxx months and then says she'd be better off dead if she can't remember anything about her life. Fortunately for me I guess, she tends to drift off to sleep again and reawakens with no recall.

    I've just joined this forum and am finding it so helpful to speak to other people who are dealing with these situations.

    Jude
     
  5. adele78

    adele78 Registered User

    Dec 22, 2003
    20
    manchester
    My mother is now in the late stages of Alzheimers Disease and has been in EMI and nursing homes for 4 years. I read with interest your message about your mother's behaviour and from what I have learned over the years that my mother has been in EMI wards and nursing homes is that there is a pattern to the behaviour in this illness. For instance, first signs of my mother's illness was when she started asking whether her mother was still alive (she died in 1958) and then started to tell people that her mother had died. Also she was always saying she wanted to go home and the home that she lived in with my Dad was not, in her mind, her home. When she first went into EMI wards, she thought she was working there. Two years ago, she suddenly stopped walking and talking, another part of the illness which is common. She now doesn't recognise anyone and has absolutely no quality of life anymore. I was asked two years ago to sign for a peg feed operation and as I did not have any siblings, decided I would feel quilty if I didn't sign for it. What I actually did was extend her life unnecessarily to date. She has not eaten anything for 3 years as she had a nasal feed prior to the peg feed. What kind of life is it when you can't even have a cup of tea? It's horrible to see this person who is not my mother anymore.
     
  6. Jude

    Jude Registered User

    Dear Adele, What a terribly tragic situation to be in - both of you. Thank you so much for your post as without information like yours being shared, then we have no way of knowing what might lie ahead and how to deal with sudden deterioration of parents. One of the most difficult aspects is that things change from day to day and seemingly only gradually, but in your mother's case, as you say it was a very sudden event when she stopped walking and talking and then stopped eating. Your decision was a brave one and although you feel that she has no quality of life as we know it, I really do hope that she is happy and content in her own world, wherever that may be at the moment.
    Best wishes
    Jude
     
  7. adele78

    adele78 Registered User

    Dec 22, 2003
    20
    manchester
    Dear Jude, Thank you so much for your kind words. I have only just joined, and I feel like I have friends already. It is a very lonely life watching your loved-one deteriorate before your eyes. Only people who are experiencing this illness understand. I suppose you could say the same about most illnesses.
    I signed for mother's peg feed 2 years ago because I did not believe that I should play God and that He would take her when ready. Having said that I have instructed my daughter not to take the same route if it happens to me. I would not want her to sign for a peg feed operation.

    Adele x
     
  8. Jude

    Jude Registered User

    Dear Adele, The great thing about this website is that we are all in the same boat and can share the ups and downs together - it's all happening for all of us. Sometimes though, things can get really amusing and these are the times that I choose to remember best. My father still has a great sense of humour and can be extremely funny, so we do have our share of laughs. One wonderful things is that he can still laugh at himself and his absentmindedness.

    Dad was talking about my mother today and said - 'He, [mixing genders as usual] really is a strange unit, isn't he? I've really drawn the short straw with this one, haven't I? I'd like a new one for Christmas' [They've been married 62 years...!]

    They had a small sherry before lunch today and Dad said - 'Don't give me a large glass - I get drunk on half an orange juice these days'.

    Cheers Jude x
     
  9. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Thank you to everyone who has posted more replies, they are extremely helpful. The more I find out about this terrible disease the more I am surprised about the similarities of behaviour that occur in the people that we care for. It is really helpful to know that we are not alone in having what seem like insurmaountable problems to deal with. I too like other members found it a great comfort to read about how we all tackle the various problems we are faced with.

    regards

    geraldine
     
  10. Jpr

    Jpr Registered User

    Dec 26, 2003
    28
    berkshire
    Some of the books I've read suggest that asking after dead relatives is often best solved with a hug. I'd have to say I don't think that would always have worked with Mum - she wasn't too keen on being hugged by a complete stranger!. (me at times!)

    I found you have to play it by ear, sometimes a quick burst of truth was ok, sometimes the white lie was essential. Dad, however could never bring himself to lie to Mum, nor even omit to tell her things. (He could, however, omit to tell us children the full truth - Why did he stop sharpening the knives after that nasty cut on his finger??)

    I agree though that witnessing the 'new'grief of a parent for her long dead family can be harrowing.

    I was fortunate that Mum made it quite clear that she would not want to be tube feed, so we had no problems declining artificial feeding when she had a stroke.

    Your CPN might have some useful suggestions as well.
     
  11. sue h

    sue h Registered User

    Jan 2, 2004
    28
    Maidstone, Kent
    Dear Geraldine,
    My Dad often thinks his mother and father are still alive (both dead for 30+ and 40+ years). According to him he `sees` them in the house and has conversations with them. Last Saturday he wouldn't let my Mum cut a cake at teatime because it was his mothers and she would be upset if they ate it! My Mum sat down quietly with him and explained that if his mother was still alive she would be 110. He eventually accepted this but as you quite rightly say they soon forget and its back to square 1.
    I don`t think there`s an easy answer to it, I tend to try to change the subject completely and distract Dad onto something else. Sometimes easier said than done!
    Best Wishes
    Sue
     
  12. cindharb

    cindharb Registered User

    Jan 31, 2004
    1
    US
    As a new member I find it so helpful to see that our experiences are not unique. Has anyone any advice on this: grandfather, w/ Alzheimers, is in nursing home w/ grandmother, who's been the caregiver for years but is now dying; no longer eating or responsive. They're in room together and he keeps patting her, kissing her and wanting her to get up. Mostly he's sweet, though obviously has no idea what's going on. Our worry is what will happen to him when she has died? Has anyone dealt with the scenario of the Alzheimers sufferer losing their spouse and caregiver? What is there to look out for, different from the problems in place before that death?

    Cindy
     
  13. kareng

    kareng Registered User

    Feb 5, 2004
    17
    Bristol
    When my dad died 18 months ago it did really affect my mum. In her lucid moments she has expressed feelings of guilt - she blames herself for his death, thinking that her illness worried him into the grave. She also obviously dwells on problems in her past relationship with him and sometimes talks confusingly about events in their past which I know nothing about and which she again feels bad about or which worry her. Sometimes she says that he didn't love her or that she was terrible to him. I talk to her about my dad, but it is always she who brings up darker feelings. She also expresses straightforward grief, wishes she could go back to when 'we were all normal people again' as she put it last time we spoke about it. Soon after his death she said that she wished she could have gone with him.

    In my experience these are really difficult things for the remaining family to deal with. It is hard to deal with the death of someone you love, doubly hard to cope with the grief and worries of their partner with dementia. And there are painful decisions to make about ongoing care. As someone who has just been through this, my advice would be to prepare yourself as well as you can now for those difficulties and decisions.

    I would also say that on occasions my mum has given me comfort and love and always a reason to cope at a time when I was grieving myself - very precious things!

    On the subject of talking about dead relatives as if they were alive - my mum hasn't done that - but she does worry that living relatives are ill or unhappy so I am always having to tell her that this isn't the case.

    All the best

    karen
     

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