Unsupportive family

Discussion in 'I have a partner with dementia' started by Joyt, Jul 15, 2018.

  1. Joyt

    Joyt Registered User

    Jun 30, 2018
    My OH is in respite care at the moment to give me time to get some sleep. Unfortunately his sister thinks I should never have done this as he’s not that bad and she could have looked after him. I have been telling her for months how bad it is but she doesn’t seem to hear what I say. On their days out together he has been ‘fine’. Anybody else come across this?
  2. mab

    mab Registered User

    Mar 6, 2010
    Sadly, yes! It's a very common thread running through so many posts on TP. Usually from family who haven't seen the PWD for ages and certainly don't have the 24/7 involvement. Only last week I was informed, over the phone, by someone who has not seen my OH in over 6 years, that he's a great believer in 'mind over matter'. I was too gobsmacked to respond!
    Welcome to the forum by the way. I have a feeling you'll get a flood of comments on this theme!
  3. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    Oh Yes indeed!!

    There are two possibilities - one that OH ( like mine does) is 'hosting' ie can appear to be relatively OK in front of others. They cannot sustain this, and are often exhausted afterwards.

    The second is exactly what I have. My OH has two children from his marriage - the son, works in community care and fully understands the situation, and travels 200 miles + to help us when he can. The daughter completely ignores the fact that there is anything whatsoever wrong with her Dad - is no help whatsoever. So much so that last time we saw her in March, her partner, when she was not with us, - a chap I hardly know - said ' Now she is not here, how are you really coping?' - every respect to him for asking.

    If they cannot see it, they do not accept it, and it's easier for them.

    We are the ones whose lives cease to have any meaning, and struggle physically and mentally.

    My OH has damage to the frontal lobe of his brain - as a result HE thinks there is nothing wrong with him.

    So that situation then puts me, the carer, in the position of caring for someone who cannot care for himself, but thinks he can, with a daughter who thinks there is nothing wrong with him !!

    Makes me wonder myself sometimes, who is right and who is wrong !!
  4. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I bet that if you had said - Oh I hadnt realised that you would be willing to look after him. Can we arrange for a time for him to come and stay with you for a week? that you wouldnt have seen them for dust :rolleyes:.
  5. malomm

    malomm Registered User

    Hello Joy T, yes I think many of us will have been there, and can feel for you as I do.
    I am lucky in the sense that recent events in the family have brought us all together. But Mrs M's sister, the last surviving sibling of a very large family, has stated quite categorically that whilst we can exchange visits, no way can she help in the care of her sister. Turns out that Mrs. M holds a reciprocal grudge from their childhood days! The PWD may not remember what happened 30 seconds ago, but they can certainly bring back memories of 70 years ago or more.
    Keep smiling and take care,
  6. mumsgone

    mumsgone Registered User

    Dec 23, 2015
    yes ! nobody else knows as well as you do the trials and tribulations of looking after someone with dementia. My sister was full of being able to look after mum when her husband went into hospital, this lasted a week before mum was then put into a care home while husband was still in hospital. People with dementia can come across and reasonable and sensible when people that don't see them that often visit, bit like children really who know how to behave when needed. Just remember it's you and other half that count in this. best wishes xx
  7. carolynp

    carolynp Registered User

    Mar 4, 2018
    Yes! It’s right on top of my list of frustrating things! My SIL also tells me my OH (her brother) is fine. Luckily she lives 3000 km away. But she wants him to visit her; and they are both plotting to go to Italy.

    Beyond a certain point I can’t do anything about any of this. Last time my OH went to stay with her, he was also “fine”! But that was 15 months ago; and I know that, even then, he cannot have been “fine” for as long as the ten days he was there. Oh, and SIL’s two daughters both also thought he was “fine” - and indeed improving! So there’s a medical miracle for you.

    The only thing I’ve been able to tell myself, that’s worked, has been something I read: That the carer is the boss. Other people can give their opinions (and goodness knows they do, don’t they?!) but the carer - this means you and me - is the one in charge, and the one who makes the decisions.

    I’ve had long experience with a son’s intellectual disability as well as my OH with FTD, and if I’ve learned one thing, it’s that you can’t persuade anyone to leave the comforting place that is denial.

    They, as butters-in, can afford the luxury of denial. We are at the pointy end of care and we can’t.
  8. Joyt

    Joyt Registered User

    Jun 30, 2018
    Thank you so much for your very prompt replies. I feel better already... well a bit. I’m not sure ‘better’ is in my vocabulary at the minute. My oh has only been in respite for a week but already I’m dreading him coming home. The adult social services care coordinator has been great and very understanding. She has extended respite for a further week with a view to more as necessary. Your kind advice on finding the best way forward for both of us is very helpful.

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