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  • FIRST POST
    Babbawah
    Alzheimers & Bereavement.
    • #1
    • 9th May 15, 7:10 PM
    Alzheimers & Bereavement. 9th May 15 at 7:10 PM
    Here's a good one for the MSE massif.

    My no' 1 bestest favourite surviving uncle was diagnosed with Alzheimers over 2yrs ago and 8 days ago his wife for 48yrs died of a massive heart attack.

    His only son forbids anyone to tell him & I agree with him.

    However, it is ripping the family apart. There is a growing contingent within the family who insist that my uncle *MUST* be told & if his only son doesn't then they are going to take matters into their own hands & tell him themselve's.

    Together with my cousin + a few others we are in a minority, but feel that he is right.

    Please feel free to either agree or disagree, your input might help to make sense of this nonsense.
Page 1
    • McKneff
    • By McKneff 9th May 15, 7:18 PM
    • 36,768 Posts
    • 47,448 Thanks
    McKneff
    • #2
    • 9th May 15, 7:18 PM
    • #2
    • 9th May 15, 7:18 PM
    Does he not keep asking where she is. Seems very strange.


    And yes, I think he should be told but I think his son knows best and has his best interests in mind so this should be respected. Tell your family who are threatending to tell him to mind their own businesses.
    make the most of it, we are only here for the weekend.
    and we will never, ever return.
  • Babbawah
    • #3
    • 9th May 15, 7:25 PM
    • #3
    • 9th May 15, 7:25 PM
    Does he not keep asking where she is. Seems very strange.
    Originally posted by McKneff
    Yes he does, all the time & it is heart breaking. He's been moved to a home now that she's passed.

    And yes, I think he should be told but I think his son knows best and has his best interests in mind so this should be respected. Tell your family who are threatending to tell him to mind their own businesses.
    Originally posted by McKneff
    The point is .... Why is the son, + a precious few others, right in not telling him?

    Why do YOU think he should be told, please remember that he has Alzheimers !
    • Georgiegirl256
    • By Georgiegirl256 9th May 15, 7:25 PM
    • 6,592 Posts
    • 18,731 Thanks
    Georgiegirl256
    • #4
    • 9th May 15, 7:25 PM
    • #4
    • 9th May 15, 7:25 PM
    I don't know how far advanced your Uncles Alzheimer's is, and how much information he is or isn't still taking in? So it's hard to say for sure whether or not he should be told.

    My own personal view is that I feel he should be told. But I guess only your family know how distressed he would be and how much information he would actually retain.
    • jackomdj
    • By jackomdj 9th May 15, 7:27 PM
    • 2,969 Posts
    • 3,669 Thanks
    jackomdj
    • #5
    • 9th May 15, 7:27 PM
    • #5
    • 9th May 15, 7:27 PM
    It would depend upon your Uncle. Does he remember his wife/is he going to remember that he has been told that she has died?

    I think the family should respect the sons wishes. Although families are funny things and sometimes what should be done isn't!
    • Scottie dog
    • By Scottie dog 9th May 15, 7:28 PM
    • 65 Posts
    • 77 Thanks
    Scottie dog
    • #6
    • 9th May 15, 7:28 PM
    • #6
    • 9th May 15, 7:28 PM
    Hi
    So sorry for your loss. My grandmother had Alzheimer's, I'm very aware of how awful it is to see loved ones suffer from this cruel disease. Is your uncle aware that your aunt has gone (I mean has he asked why she hasn't been to visit etc, assuming he is in a care home?).
    My gran was in a care home and the only person she recognised was my dear grandpa. She would not eat unless my grandpa fed her so he made 4 visits to the care home every single day in the 2 years she was there. My mum, dad and I visited every night but she didn't know who we were or why we were there. It was frustrating sometimes but my grandpa needed our support. I'm not sure what we would have done if anything had happened to my grandpa but I'm pretty sure my gran would not have understood if we had to tell her that he was gone and wasn't coming back.
    I don't think we would have told her.
    Best wishes to you and your family.
    • splishsplash
    • By splishsplash 9th May 15, 7:31 PM
    • 2,950 Posts
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    splishsplash
    • #7
    • 9th May 15, 7:31 PM
    • #7
    • 9th May 15, 7:31 PM
    Normally, I would say out of respect for the man who spent 48 years of his life with his wife, he deserves to be told and given the chance to grieve and say goodbye. I (just a personal thing) hate to see people making decisions on behalf of others when it's really just to save themselves the discomfort of dealing with a difficult situation.

    Having said that, having had the disease for two years might impact how or when the information is passed on. It might be worth taking advice from other people outside the family - other families, carers, health professionals, support groups, talking point, etc.

    Best of luck, very tough situation. It doesn't matter who is right really, there's no good outcome here .
    I'm an adult and I can eat whatever I want whenever I want and I wish someone would take this power from me.
    -Mike Primavera
    .
  • Errata
    • #8
    • 9th May 15, 7:35 PM
    • #8
    • 9th May 15, 7:35 PM
    Yes he does, all the time & it is heart breaking. He's been moved to a home now that she's passed.



    The point is .... Why is the son, + a precious few others, right in not telling him?

    Why do YOU think he should be told, please remember that he has Alzheimers !
    Originally posted by Babbawah
    It may be the case that he'll forget he's been told his wife has died and will have to be told over and over again, each time experiencing heartbreak anew.
    It does very much depend on his awareness of where he is and how his memory is affected.
    .....................I'm smiling because I have no idea what's going on ...
    • troubleinparadise
    • By troubleinparadise 9th May 15, 7:44 PM
    • 1,076 Posts
    • 1,822 Thanks
    troubleinparadise
    • #9
    • 9th May 15, 7:44 PM
    • #9
    • 9th May 15, 7:44 PM
    Having lived with someone with dementia, I would say it very much depends what stage your uncle is at with his Alzheimer's, and how he is in himself.

    For some sufferers, due to the nature of their poor memory, they may have forgotten that person already; or forget they have been told; or have lost their ability to feel emotions and not take in the news with any sense of loss or bereavement.

    Or they may repeatedly remember, having to go through their loss anew again and again, which can be terrible for them and those around them.

    With dementia, we have to join the person who has the disease in their world, not try to force them back into our world and our normal as we perceive it. Looking after a person with dementia has to be done with their best interests at heart, not with our perception of the "right way" of doing things.

    So I'd say it all depends on your Uncle's situation, and how he is in himself.

    You might find the Alzheimer's Society forum a help with your question:

    http://forum.alzheimers.org.uk/forum.php

    on there it is often found that telling white lies, told to save having to cause upset and not to mislead, are a kinder way than harsh truths.
  • Babbawah
    Hi
    So sorry for your loss. My grandmother had Alzheimer's, I'm very aware of how awful it is to see loved ones suffer from this cruel disease. Is your uncle aware that your aunt has gone (I mean has he asked why she hasn't been to visit etc, assuming he is in a care home?).
    My gran was in a care home and the only person she recognised was my dear grandpa. She would not eat unless my grandpa fed her so he made 4 visits to the care home every single day in the 2 years she was there. My mum, dad and I visited every night but she didn't know who we were or why we were there. It was frustrating sometimes but my grandpa needed our support. I'm not sure what we would have done if anything had happened to my grandpa but I'm pretty sure my gran would not have understood if we had to tell her that he was gone and wasn't coming back.
    I don't think we would have told her.
    Best wishes to you and your family.
    Originally posted by Scottie dog
    Thank you.

    I need to share real life experiences of Alzheimers because this is my first time with someone so close.

    My uncle seems to recognise me more often than his son, yet he thinks we are both still 6yrs old. This is Alzheimers !
    • Hermia
    • By Hermia 9th May 15, 7:47 PM
    • 4,290 Posts
    • 12,509 Thanks
    Hermia
    It may be the case that he'll forget he's been told his wife has died and will have to be told over and over again, each time experiencing heartbreak anew.
    Originally posted by Errata
    I agree. I cannot see how it would be in someone's best interest to be told their wife has died and experience that pain/confusion again and again and again. Whenever my friend's mum asks about her husband everyone just tells her he has popped to the shops etc and she is happy with that. She can't seem to retain any information so I cannot see the point of people upsetting her with horrible news.
    • tooldle
    • By tooldle 9th May 15, 7:48 PM
    • 309 Posts
    • 583 Thanks
    tooldle
    This is a difficult one. My mum has dementia, and was also moved into a home when my dad died. She was unable to remember what had happened to dad. I had to tell her over and over that he was dead. She kept looking for dad for some months, before it suddenly stopped. I think it would be kinder to not tell your uncle myself.
    I wish you the best whatever you decide,
  • Babbawah
    It may be the case that he'll forget he's been told his wife has died and will have to be told over and over again, each time experiencing heartbreak anew.
    It does very much depend on his awareness of where he is and how his memory is affected.
    Originally posted by Errata
    Thank you.

    This is what we have been told by those treating him.
  • Babbawah
    Having lived with someone with dementia, I would say it very much depends what stage your uncle is at with his Alzheimer's, and how he is in himself.

    For some sufferers, due to the nature of their poor memory, they may have forgotten that person already; or forget they have been told; or have lost their ability to feel emotions and not take in the news with any sense of loss or bereavement.

    Or they may repeatedly remember, having to go through their loss anew again and again, which can be terrible for them and those around them.

    With dementia, we have to join the person who has the disease in their world, not try to force them back into our world and our normal as we perceive it. Looking after a person with dementia has to be done with their best interests at heart, not with our perception of the "right way" of doing things.

    So I'd say it all depends on your Uncle's situation, and how he is in himself.

    You might find the Alzheimer's Society forum a help with your question:

    http://forum.alzheimers.org.uk/forum.php

    on there it is often found that telling white lies, told to save having to cause upset and not to mislead, are a kinder way than harsh truths.
    Originally posted by troubleinparadise
    Thank you.

    You have been a BIG help.
  • Errata
    I guess the trick of being kind to people with dementia is to live in their world because that's their only reality.
    .....................I'm smiling because I have no idea what's going on ...
    • bagpussbear
    • By bagpussbear 9th May 15, 8:16 PM
    • 803 Posts
    • 2,678 Thanks
    bagpussbear
    I've been in this situation.

    I had to tell my mum her partner had just died. She was, by this point, in a care home and her Alzheimers was pretty progressed. I felt it was the right thing to do to tell her even though I didn't think it would register too much.

    However, she became very confused and upset. And I realised I had brought her sadness and grief that she was no longer equipped to deal with in the normal way a human being deals with grief. And of course when visiting hours were over, I had to leave her to go home, leaving her upset and not being able to communicate properly to anyone else at the home how she was obviously feeling. It upsets me to think about it even now.

    So in hindsight, it was - for my mum - the wrong decision to tell her.
    • thorsoak
    • By thorsoak 9th May 15, 8:20 PM
    • 5,979 Posts
    • 28,010 Thanks
    thorsoak
    I have a friend whose mother suffered from dementia, and had been moved into a lovely home, her husband of almost 45 years visited her regularly, and she thought of him as her "sweetheart" - she'd forgotten that they had been married, shared a home, had 3 children.

    He had bowel cancer and sadly died, some nine months ago. Her family didn't tell her, as she didn't really remember him as her husband. When a cousin came to visit her some time after the funeral, she said "Oh Jeff will be coming in later", her cousin said - but he's dead. Now poor Sally breaks her heart over her sweetheart who died, she thinks, before they married, whilst doing his National Service.
    • DaveTheMus
    • By DaveTheMus 9th May 15, 8:35 PM
    • 2,499 Posts
    • 5,410 Thanks
    DaveTheMus
    Chances are if he is told that he won't remember in the morning so will have to be told again...

    ... a pointless exercise IMO and a nosey intrusive bunch your family seem....

    I'd tell them to F off
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    • 74jax
    • By 74jax 9th May 15, 8:39 PM
    • 5,298 Posts
    • 7,393 Thanks
    74jax
    My mum forgets her mum has died, even though she has been dead for about twenty years.

    She used to say we need to pop round to visit and dad had to say she was dead, cue mum crying over again. Now dad just says 'later' and mum forgets.
    Forty and fabulous, well that's what my cards say....
    • Hermia
    • By Hermia 9th May 15, 9:18 PM
    • 4,290 Posts
    • 12,509 Thanks
    Hermia
    Chances are if he is told that he won't remember in the morning so will have to be told again...

    ... a pointless exercise IMO and a nosey intrusive bunch your family seem....

    I'd tell them to F off
    Originally posted by DaveTheMus
    I agree! It always amazes me in cases of illness how it is family members who are not the immediate relative who start throwing their weight around. I nursed my dad for six months until he died and it was relatives who only visited a couple of times who were suddenly experts in his treatment. I remember the hospice nurse saying she saw this a lot.
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