I don't fear dementia any more....

Discussion in 'I care for a person with dementia' started by cebhh, Sep 16, 2016.

  1. cebhh

    cebhh Registered User

    May 2, 2014
    Five years ago when we first realised mum had dementia our world fell apart. Since then, the trauma and heartache of managing that condition became all consuming. We were so fearful of what the future would bring for mum but also would my brother or I get it in years to come? Yes we have had terrible times..too many and upsetting to document but now mum is reasonably settled in a care home close by and as happy as she can be.

    The reason for this thread as I said is that I no longer have that terrible fear anymore if it happens to me. I worry the effect on my family but not for myself. I have insisted that they put me into a care home as soon as possible to save them the heartache we went through, trying to cope with mum at home.

    To put this into context we have also looked after a very independent but lonely elderly man who until March this year lived at home on his own since his wife died in 2000. He is now 104 ! He still has full mental faculties and until two years ago even did all his housework himself. After a fall last xmas he had carers go in twice a day. They lasted two weeks till he said he didn't need /want them.
    He had another bad fall in march and since then his physical health has plummeted and now is completely bedridden and recently now in a care home too. He desperately wants to get up and get out and about (as he previously did daily ) but without a hoist and wheelchair he is now helpless.
    Mentally he cannot cope with knowing that this is his lot and just existing not living (his words).

    Maybe dementia where you don't realise what has happened to you is better than what our poor friend is having to deal with, as he faces the latter stages of his life but still understanding everything that is happening to him.
  2. Georgina63

    Georgina63 Registered User

    Aug 11, 2014
    Too true

    Hi cebhh
    I can empathise with that. After a couple of rollercoaster years of supporting my parents living at home, both with AD, they are now safe, well and relatively settled in a care home nearby, although it was a traumatic experience at the time. Dad asks about home, but the move has been much more positive than expected, and I also feel I can live my life again without the constant worry and stress. When my father in law had cancer a few years ago, he became immobile and had to move into a care home for a short time before he died. He still had mental capacity and didn't want to be in a care home. I'll never forget him saying to me 'you have to get me out of here'. It was very sad. So, perhaps you are right. And in the meantime, let's make the most of what we have. Gx
  3. starryuk

    starryuk Registered User

    Nov 8, 2012
    #3 starryuk, Sep 16, 2016
    Last edited: Sep 16, 2016
    I am sorry to read about your friend. Amazing that he was still doing his housework at 102! It must be very difficult for such a strong independent man to accept the loss of control over his own life.

    I used to think like you about my mum too. She would marvel at the magnificent house she owned ( the CH) all her servants (the staff) and all the guests (residents). I never tried to correct her. We were lucky that mum never developed the dreadful fears and hallucinations that I read other people with dementia go through, I suppose.
  4. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    #4 Witzend, Sep 16, 2016
    Last edited: Sep 16, 2016
    I am very glad you no longer fear it - just wish I could say the same! I know it's far preferable to be unaware - it was a profound relief to me that my mother was quite unaware of her pitiful condition, which would have mortified her - and anyone can understand how your poor friend with all his marbles intact hates having to be cared for, but still...

    I absolutely hate the thought of being a worry or a burden to my children. They know they have strict instructions to find me a care home, but it may often be quite a while, with worry and stress thrown in, before the care home stage is reached. I would absolutely hate my daughters to see me incontinent, being smelly because I won't wash, not knowing who they are, or being nasty or aggressive towards them, etc.

    And I really hate the thought of whatever money we would be able to leave them, going on care home fees, maybe for several years, as was the case with my mother. I absolutely do not begrudge a penny of that, but I want any cash of ours to make our children's and grandchildren's lives easier - especially in these days of sky high house prices, hefty university fees and uncertain pensions. I don't want it to go on keeping me in the sort of state my mother was in for years, with zero dignity, never really happy or contented, anxious or fretful for much of the time.

    Hence a Living Will to state very clearly that if I ever develop dementia, or any other condition where I am both unable to look after myself and speak for myself, then if at any point Nature is doing her best to let me go, please just let her get on with it. Do not whip me into hospital and stuff me with pills and drips to keep me going, just because it is possible to do so.
  5. skaface

    skaface Registered User

    Jul 18, 2011
    You've reminded me, thank you! I have an Advance Decision all completed, signed and witnessed but I haven't lodged it with my GP.
  6. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Cebhh, I'm glad you no longer fear Dementia. I suppose I would also feel that way if I hadn't seen how bad Dementia can get. I'm no way implying that you have had it easy by the way-because I know you haven't.

    I can vividly remember the fear, the aggression to say nothing of the confusion. My Husband fought and fought the illness -he never found any kind of acceptance or peaceful state. His body was attacked by infections and his weakened physical state also fell to prostate cancer. As well as AD he also had Parkinson's and Bi-polar. All this invaded the body of my super fit, funny, sensitive, intellectual Husband who died at the age of 68. If he had lived it would have been his 70th Birthday tomorrow. I should have been planning a party for him tomorrow and meeting up with dear friends.

    So, I would love my Pete to have lived to a ripe old age (not necessarily 104!) without Dementia darkening our lives. Old age even without Dementia I agree can be lonely and isolating, but memories are everything; to be able to look back with pride on things you have done must be priceless. Dementia stole that from Pete.

    I'm glad your Mum is relatively peaceful and I hope that continues
  7. camkam

    camkam Registered User

    Jul 20, 2015
    Just a thought and I don't want to put a damper on things, but my mum always said that if she had AD I had to get her into care as soon as possible, but when it actually happened she fought against it tooth and nail as she doesn't realise she has Alzheimer's!. When I remind her of what she said, she says 'but I'm alright why did you put me in here?'

    Sent from my iPhone using Talking Point
  8. cebhh

    cebhh Registered User

    May 2, 2014
    Thank you for all the lovely comments. The last five years in particular have been the darkest of our families life. To watch someone you love change into a shadow of their former self is heartbreaking as I'm sure most of you know. My mum was a very private, intensley shy, but knowledgeable and very capable woman and she would have been absolutely mortified if she realised for one minute how she has behaved /done over these years. Thank god she can't remember what happened five minutes ago let alone anything else. To those of you still going through this heartbreak it does get easier eventually. It also makes you realise how important it is to love and enjoy your loved one while they can still understand. At the moment mum still recognises us but is getting weaker and weaker. But, and this is very important. ... to appreciate and make the most of your own life. Keep your chin up. Xxx
  9. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    Given the choice we would not choose to have any terminal illness I would imagine. All of us who have witnessed our loved ones decline into behaviour that if they had awareness would horrify them but if they didn't have dementia they would not present with such behaviour to be horrified by if you see what I mean. No illness is better or worse than others to have but for me, dementia is unique in that in a lot of cases it robs the person at a fairly moderate stage of being able to make decisions, choices and crucially for many able to stay in your own home. I know having seen dads dementia what I would rather take my chance on.
  10. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    The sadness I feel most now is that Mum's dementia has taken away such a huge part of her personality and ability to have human relationships.

    Mum was loving, opinionated, passionate, naughty, fun, stylish, people-oriented ... Now for most of the time she's just this well-cared for, still beautiful woman who cuddles her teddy and wears whatever clothes her carers dress her in. It's an OK fate, she's better off than most of the world's humanity could hope to be, but I miss my Mum.
  11. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Exactly, and I think this is what so many people with little or no experience just don't realise.

    Some time ago I read a piece by some famous person - have a feeling it might have been Melvyn Bragg - saying that experience of a parent's dementia had made him vow to put a swift end to himself if he ever developed it.

    I thought to myself, well, you can't actually have all THAT much experience of it, or you'd realise that

    a) you may well not realise that there's anything wrong with you, or refuse to believe it if anyone tells you
    b) even if you had hidden a stash of pills away, you would very likely have forgotten where you'd hidden it, or even that you'd hidden it in the first place, and
    c) because you were not aware of anything wrong, your former plan (even if you remembered it) would not seem necessary any more.

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