Oldest person with dementia?

Discussion in 'I care for a person with dementia' started by Raggedrobin, Jul 16, 2015.

  1. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    1,432
    I know a few of us on here have relatives in their 90s with dementia. I was just wondering who knows the oldest person with it. My Mum is just coming up to 98. I remember Witzend had an elderly Mum too, i think. Any others?
     
  2. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,653
    Hampshire
    Mum, who died two months ago was 103 5/12
     
  3. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    1,432
    #3 Raggedrobin, Jul 16, 2015
    Last edited: Jul 16, 2015
    I'm sorry for your loss but that is quite an age! How long had she had dementia for? My Mum only had it noticeably for the last couple of years. I know it sounds gruesome, but I am wondering how long she can keep going, while having the disease.
     
  4. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    My mother was 97 last month. I think so much may depend on their general constitution, whether they have any other health problems. My mother showed the first signs at about 81 or 82, though it's been so long I lose track now. She is not on any meds for anything and hasn't been for as long as I can remember, though she did have successful treatment for cancer in her 70s.
    Although her dementia is so very advanced and she is apparently physically frail now as regards mobility etc., she rallies quickly from anything like a chest infection, not that she often succumbs to anything. She has the constitution of a rhinoceros - TBH I sometimes think she'll see me out.
    Occasionally someone will say how wonderful it is that she's reached such an age. No, it isn't - given the state she's in, it is cruel, and the person she was would be the first to agree
     
  5. garnuft

    garnuft Registered User

    Sep 7, 2012
    6,589
    I'm wondering if it would be OK to query who was the youngest sufferer?
    Somehow I don't think so.
    #dementiafriends


    Sent from my iPhone using Talking Point
     
  6. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,653
    Hampshire
    Hi RR, probably around 7 years diagnosed and, with hindsight, symptoms for at least five years prior. She was quite fit and active up until maybe five years or so ago when she was less mobile.
     
  7. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,838
    Suffolk
    Garnuft, I think a 6 year was diagnosed recently. Certainly when I was researching this after OH was diagnosed the youngest was 7.
     
  8. garnuft

    garnuft Registered User

    Sep 7, 2012
    6,589
    I'm sorry but I would query the diagnosis of dementia in a child.
    In fact, I wouldn't believe it.



    Sent from my iPhone using Talking Point
     
  9. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,489
    Female
    Near Southampton
    Here are some conditions in children that involve dementia:
    ■Adrenoleukodystrophy
    ■Alexander disease
    ■Autism (Infantile)
    ■Batten disease
    ■Canavan disease
    ■Juvenile Huntington’s disease
    ■Metabolic diseases
    ■Niemann-Pick Type C
    ■Subacute-sclerosing Panencephalitis (SSPE)
    ■ Tay Sachs disease
     
  10. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,838
    Suffolk
    Thanks Saffie, I was just going to add not such a good resume!
    Many are genetic, some diseases lead to dementia.
     
  11. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    1,432
    hi Witzend, yes I thought your Mum was about the same age as mine. And yes, sometimes I also think my Mum will see me out! Sometimes she talks about when we both go, I think, thanks Mum, please don't take me with you! She did make me smile the other day, in a rare moment of not imagining she is 20 or whatever, she said she was worried about how she was going to arrange her funeral, when she was dead. :D

    i agree, people often say how marvellous it is she is so old but like you, I think not. My Mum is also very fit, she has broken both her hips in the last couple of years and recovered. last winter she caught the bad cold-cough that killed off so many elderly people, she was ill with it for about 3 days whilst it took me 2 months to get rid of the cough.

    I have chosen to move up to where my mum lives to be near her and see her as she does need this but I am afraid I find myself wishing her dead on an almost daily basis. I know it sounds awful but I want my life back. It's my choice but I never imagined she would keep going so long. I know I will feel bad that I wished her dead when she does go, but I find it is almost an obsessive thought for me, sort of hoping for an end to it. Apologies again Celia, I am sure when it actually happens it feels very different.x
     
  12. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    Well, Raggedrobin, you are not the only one. I know I will feel sad in a way when my mother finally goes - if I am here to see it! - but I know I will also be glad and relieved that she's finally out of it. The CH called last week to say that she could not weight bear on one leg and her breathing was 'laboured' - the GP was coming shortly. So I charged down to the CH - thank heaven it's very close - from the way they said it, it sounded serious. But she seemed just the same, though she was in bed, and not slumped in a chair. There were no signs of pain or distress at all.

    She hasn't known me for ages, there is never any response, and there is no conversation - she hardly even tries to talk but if she does then except for the odd word like 'No!' it comes out unintelligible. Her eyes are sort of 'dead'.
    I sat with her for nearly 5 hours until the GP finally arrived, and when he did he couldn't find anything wrong, except that there might be a 'slight' urine infection. I had been worried that they might want to whip her into hospital, but it wasn't mentioned at all.

    She is 'fine' again now, panic over. But the whole family will be away for some time soon, since my daughter is having her big wedding bash in France. My sister said the other day that it would just be Sod's law that 'something will happen' while we are all far away. I used to think that every time we went away at all, but it never has, so I don't any more. I know I will feel awful if none of us can be with her at the end, but since she doesn't know any of us any more, and makes no response at all, either just seeing us or to kisses and cuddles, I suppose it's not logical. But then logic doesn't come into it with a matter like that.

    TBH I sometimes think a swifter decline is more merciful, both for the sufferer and for the relatives. Since she has been in the CH - nearly 8 years now and she was very bad when she went in - I have seen so many other residents decline and go. The staff have said so often that a fall or some infection that would have been the beginning of the end for so many, just roll off her.

    I know she is not aware of her condition any more and has not been for ages, no more than my little granddaughter of 12 weeks is of hers, but that doesn't stop me wishing she would not have to go on like this, when I know how appalled her former self would be. But I do find it hard not to glue a smile on and not make some 'negative' response when anyone - even the CH staff sometimes - say brightly how amazing she is and the way she's going she'll be getting one of those lovely cards from the Queen! They say it as if it's something we should all want and be hoping for. And I wonder whether I am somehow weird or unnatural because I don't, not at all. Maybe it's just that 'manners' and rules of behaviour make them say such things when they are thinking the opposite - I don't know - or whether they really do think it's wonderful to go on for ever in such a pitiful state.
    Sometimes I am even bad enough to wonder whether the CH actively want to keep her going as long as possible, because she is self funded and therefore pays more than many of the residents, and I wonder whether if I let them know how I feel they will think it's because of the money. But it makes no difference to us at all, since my sister who has P of A was prudent enough to take out an annuity, which with her income will take care of the fees for as long as necessary.

    Sorry, rhis has turned into a rant/ramble - I will shut up now. Gone 9.30 and I'm not dressed yet.
     
  13. dottyd

    dottyd Registered User

    Jan 22, 2011
    1,066
    n.e.
    I have similar thoughts to you RR. After another traumatic visit I too wonder how long we both can put up with this.

    Mum is mobile but her quality of life is so poor. Wearing no bra, 2 pairs of trousers huge hard red cellulite filled legs and didn't say more than one coherent sentence and biting her carer, and refusing help with her hygiene is no way my mum would wish to live. Incarcerated in a building with people with the same complaint. No choice over her food and Living apart from her loved ones is no way to live.

    I hate it, hate it with a passion and so does my mum.

    If only shed gone 3 years ago when she had pneumonia we would have both been spared this living hell.

    Mum and I were like sisters, best friends . All gone.
     
  14. katek

    katek Registered User

    Jan 19, 2015
    191
    I have to agree. People seem to think living to 90 - 100 is always something to be celebrated, but for me it is almost the opposite when the person is in that sort of state. With other illnesses, there may be more physical impairment, such as being bedbound, but the person can still do things such as read, watch TV, listen to the radio, write and receive letters, phone people, look at photos, have conversations with visitors etc etc. However, at late stage AD, when this is not possible and you don't even know who you are, can't communicate, are doubly incontinent and need 3 carers to change you, what is there to celebrate about reaching your next birthday? My father, 85 next month, has been like this for about 3-4 years,(having had AD for 6-7 years before this stage) is otherwise pretty healthy, still mobile and (just about) able to feed himself, but the decline is so slow I dread it going on for another 5 or more years.

    Obviously my father knows nothing about it but it would have been his worst nightmare to end up like this.
     
  15. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,653
    Hampshire
    Whilst the last few months of Mum's life weren't so good once she lost weight and interest in food, prior to that she still had enjoyment in life and was able to enjoy her music, know who most people were and have reasonable conversations. I would have wished her to be spared the last few months but for the greater part of the time before that she had a reasonable /good quality of life even though what she could do physically lessened in the last year. I realise many (of all ages) have a very different experience.
     
  16. Raggedrobin

    Raggedrobin Registered User

    Jan 20, 2014
    1,432
    I'm glad your mother had a reasonable quality of life before going, Celia. Witzend, I feel the tiredness with your situation in your post, to have been dealing with it with someone in that age for so long, not easy. I also used to worry that I might be away when Mum goes but I have reconciled myself to that possibility, as it happened to me with both my sister and my father, I am now of the opinion that this may happen and I won't beat myself up about it, but it does make going away anywhere, especially, heaven forbid, a short holiday, feel worrying, as if I should feel worse if she died while I was enjoying myself.:rolleyes:

    Dotty and Katek, thanks also for your comments. Sad endings and the rollercoaster of wondering 'is this it?' Every time Something unusual happens, or the care home rings, not easy.
     
  17. dottyd

    dottyd Registered User

    Jan 22, 2011
    1,066
    n.e.
    A really good post of yours Witzend. Cynical old me also thinks of the jobs my self funding mum provides and how it's in everyone's interests to keep these golden oldies ticking over as long as possible.

    The more rational part of me would not want my mum to be in any pain or distress through infection or whatever so would want her treated.

    When my aunt went into a care home there was a lady who laid in the fetal position all day. Her daughter went up to feed her. She was unable to communicate. That lady must have lived the best part of a year like that before mercifully she was taken back home.

    Why?

    I was horrified. I don't want that for my mother.
     
  18. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    I think I may be in a quandary soon over eating and drinking. My mother is getting more reluctant at times. When I went in yesterday one of the carers was trying to get her to drink tea from a spouty cup - until recently she has always enjoyed tea. But her head was slumped forward and she wouldn't open her mouth. I took over and managed to get her to take a little, but it was very clear that she didn't want more than that. I tried over and over - it wasn't from want of trying.

    When my brother was there the other day he saw a man who's in a similarly pitiful state, being pestered and badgered to drink - the carer was trying to force the spout into his mouth while he kept turning his head away. My brother said it was upsetting to watch. At the time he was feeding our mother, who was then willing enough to eat a small amount.

    I know it's all done with the best of intentions - staff see it as their duty of care to get people to eat and drink. But where do you draw the line? Is is legitimate to keep on relentlessly badgering and pestering someone very old, with advanced dementia, when they clearly do not want it?
     
  19. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,838
    Suffolk
    I think this is where your LPA h&w comes in handy. Tell them that if she refuses, do not force. Mark you, it's difficult. OH is occasionally given drinks in one of those spouty cups, but doesn't realise that you have to use the spout, tip the mug up, then suck. Three things to get wrong. On the other hand, if you give him apple juice in a glass, he will drink all of it. He did try and drink from the covered water jug yesterday!
    It's a fine line we tread!
     
  20. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,282
    SW London
    #20 Witzend, Jul 18, 2015
    Last edited: Jul 18, 2015
    We have the old style P of A, set up and activated some years before she went into the CH and I'm pretty sure it's just for finances. I don't have it anyway - it's my brother and elder sister.

    I would hate to have to get into any argument with the CH since the care is very good, but I do get the impression that to them, 'duty of care' = automatic efforts to keep people going as long as possible, regardless of quality of life or whether it's really in their best interests.

    We have had plenty of discussions with the CH about 'what if...?' and they know very well, and agree, that there should be no 'striving to keep alive' but when it comes to eating and drinking... I have myself seen this badgering and pestering to eat and drink when the lady in question was clearly distressed, crying and whimpering and repeatedly turning her head away, but the carer just kept on and on.
    I just really do not want this sort of thing for my poor mother. She is no longer capable of feeding herself, or even of picking up any sort of cup and drinking from it, so she has to be helped, but it's where to draw the line between encouraging and badgering or trying to force.
     

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