Alzeimer's ripping my family apart

Discussion in 'I care for a person with dementia' started by Delight, Mar 23, 2015.

  1. Delight

    Delight Registered User

    Mar 23, 2015
    2
    Hello, I'm new to this group and I apologise if you've all discussed this before but my mother's dementia is ripping our family apart. My mother is 87 and over the past few years has gone from being a vibrant, creative and intelligent 'Mrs Robinson' lookalike (The Graduate) to a hunchbacked, frail old woman who is aggressive, very confused and frequently very tearful. My father is 80, a lovely man and her main carer but he's in complete denial about the care she really needs. The main problem is the rest of the family - badically my 5 siblings. Because my mother's been such a 'tour de force' and the matriarch of the family, they're terrified of upsetting her and I feel she's not getting the care she needs because they won't put their foot down with my father. He's desperately trying to maintain some semblance of independence which I totally applaud but he's unfortunately failing her sometimes because he can't see the wood for the trees. He does his best and loves her dearly but he too is terrified and feels he must be her 'advocate' and protect her from interference. So they won't have carers, won't take advice or helpful suggestions and are living in a house that's not suitable for my mother's dementia. He goes out and plays golf 3 times a week, leaving her alone with a lethal staircase that he refuses to block off because she insists on using the upstairs loo even though there's a perfectly good one downstairs. The front door doesn't lock so ANYONE could just wander in. A neighbour pops in every 45 minutes but for the rest of the time my profoundly deaf and confused mother is alone. There are so many small, cheap and simple changes that could improve both their lives but whenever I try to suggest them I'm told to butt out of their life and let them end their days as they want - even if it means some terrible catastrophe may occur. My other siblings are continually placating my father and nothing ever changes for the better unless someone (i.e. myself!) gets emotional and kicks up a fuss and rocks the boat. And that invariably means I get a pummeling from all concerned. I'm getting tired of the situation and just feel like doing my bit with my parents but checking out of the whole family thing. I've realised that the beautiful diamond that is my family is actually an illusion and its really just a pile of excrement seething with resentment, sibling jealousy and anxiety. As long as everyone keeps polishing it vigorously the illusion is maintained but anyone who steps out of line is quickly silenced! One minute I think the mature thing to do is to squash all my fear and emotion inside and just pretend everything is hunky dory and let them get on with it and at other times I'm plagued with awful images of my mother plunging down the stairs and dying slowly and painfully whilst my father has a heart attack because he's so overworked looking after this aggressive bag of bones that used to be his darling wife. At these times I think it's right to tell everyone what fools they're being because one day our parents will die, leaving the rest of us to deal with the memory of their hideous deaths and the accompanying guilt. But am I just being a 'pathetic, over-emotional woman' as my father so eloquently told me when I said I was finding my mother's dementia really difficult to come to terms with? Is it better to keep stumm and indeed let them end their days as they wish? Or am I failing my mother by not doing all I can to keep her safe? Sorry for the length of this post!
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,907
    Female
    Scotland
    Well your descriptive English would be a delight indeed except that the matter is so serious. The truth is that your father is indeed still in charge of his own home and you can't force anything unless he was neglecting your mother. As he has arranged for a neighbour to call in it doesn't look as if that is the case.

    There are no easy answers to this but I don't see you making much progress if your father, mother and siblings are arrayed against you. Perhaps you will have to step back for the moment.
     
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,346
    Merseyside
    Sadly it can take a catastrophe to prove how much care & support is needed.
     
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,106
    Male
    Bristol
    #4 nae sporran, Mar 23, 2015
    Last edited: Mar 23, 2015
    So sorry Delight. Your family is just like mine, my mother shut us out of my grandmother's care and my father refused help from my brother who is a nurse. That was slow decline due to heart problems, rather than dementia. Now nobody takes an interest in OH and her battles with Vascular Dementia. Still hurts, but I doubt pushing myself in where not wanted would have achieved anything, probably made it worse. Best regards to you whatever you do.
     
  5. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    Welcome to the forum, Delight, although I'm so very sorry that you're faced with such a horrible dilemma. I can sense your anguish and feelings of helplessness, which are very common.

    I know a little of what you're going through, because at first my dad was extremely resistant to the idea of outside help or making changes (my mam has Alzheimer's), but not nearly to the extent that your dad is. He wouldn't tell me to butt out, or be nasty, but he would just ignore any suggestions, or just not be able to see the sense of the things I was suggesting, which was very frustrating. But this has gradually changed as time has gone on and he now does accept help. Perhaps this will happen with your dad too eventually.

    In the meantime I don't think there's an awful lot you can do I'm afraid. Unless you might be prepared to contact social services and report your mum as a vulnerable adult? Which sounds harsh I know, and I personally have never been able to do anything behind my dad's back. But your circumstances sound more extreme than ours were.

    Good luck and do keep posting x
     
  6. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
  7. Delight

    Delight Registered User

    Mar 23, 2015
    2
    Thanks for all your comments - especially Chemmy and your link to the Victim triangle. Really interesting and definitely something to get my teeth into. Looking back on my initial post, I have made my family sound like a really unpleasant bunch but that couldn't be further from the truth. They're all incredibly kind and considerate people, well-educated, socially-aware, creative, bohemian and open-minded and until this crisis I put them high on a pedestal, especially my wonderful father. But this illness has exposed all our issues and insecurities and I suppose I'm coming to terms with that just as much as my mother's condition. I've especially seen my father in a different light and feel as though I'm falling out of love with him. This hurts the most and I suppose my wish to share this with others is actually a cry for help in preventing this. I desperately want to stop the resentments I feel from affecting the love I feel for my family. I'm behaving like the classic victim and I hate it!
     
  8. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    I (like you, I suspect) am a classic 'rescuer'. My husband is a natural 'supporter' which is actually the role we should all aim to take. What I see as helping, others see as interfering. That's been a hard pill to swallow, and to be honest, I still struggle to see the difference..

    I am now stepping back from situations where my instinct is to 'rescue' my grown up children, my MIL and my elderly neighbours. I now offer a solution to the latest problem - but only once - but if they choose to ignore it, unlike before, I shut up about it. I am forcing myself to accept their decision. And it's hard.

    The Mental Capacity act says something about people with capacity having the right to make their own decisions, even if in the view of others it's the wrong one. If you point out the consequences and they still choose that path, then you just have to say to yourself, so be it.

    (And have Plan B waiting in the sidelines for when it's needed :D)
     
  9. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    I suspect that part of your anguish is connected with the diagnosis and the realisation that there is nothing we can do to make things better or make the loved-one happy again. You need to step back for your own good and accept that your judgement on the situation is not, necessarily, the correct one. --Personally, if I had dementia I would rather fall down the stairs and die quickly than go through what my father is going through. He wanted to stay in his own home with minimum caring and I supported him in this wish up until such time as he became unsafe. He is now in hospital and utterly safe, but he is also utterly miserable.
    The reality of dementia is that there are no happy endings and everyone must trace their own path. In this case, the path is not yours to dictate. By playing golf, maybe your father is recognising that he needs brief respite on a regular basis or he will break down/have that heart attack? Maybe he is dealing with this in a very measured way? Perhaps the only truly helpful thing you can do is try to support him gently and also, listen to him. For prime carers, there are often a crowd of people ready to offer advice and no one who simply listens.
     
  10. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    I'd also say step back and wait, however terrifying and hard it is to do so. You're powerless to act anyway so the only thing you can do is to try to persuade ... and other family members won't be persuaded, at this stage.
     
  11. Angela T

    Angela T Registered User

    Jul 13, 2014
    187
    France
    So true, my mother is now in a nursing home, utterly safe but also utterly miserable.

    It really is so sad !
     

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