1. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    To many outsiders, my husband would not seem that far down the track. He presents well, and is very chatty although now segues from subject to subject in a way that is totally baffling, and repeats the same thing constantly. At home, however, he is argumentative, dirty in his person, and querellous about absolutely everything, and will drink anything alcoholic he can lay his hands on.

    The CPN came round last week, and his memory level is now sufficiently low for her to feel he should not be left alone for long periods. She said that she and the care team had discussed the situation and wondered whether I felt I could not go on much longer. Would it be an idea to put him on the waiting list for residential care and funding? This could take months, if not years, and apparently one does not have to accept the first place offered.

    I said yes without even thinking about it. The Guilt Monster is now in overdrive.

    Over the past couple of weeks, while I have been involved in a local festival and every so often something really went well or I had various meals with people who could actually sustain a conversation, I have felt happy. Had forgotton what that was like - it has been a very long time since I have woken up looking forward to the day, but this activity has reminded me life can be better.

    My stepson has been totally supportive and understanding. I have spent several years coping, in a state of quiet desperation, with living with someone who is 200 per cent different to the person I once knew. I can see a glimmer of light at the end of a very long tunnel that I have been in for years, with the walls getting more and more constricting.

    Can others who have gone through this, and in particular have gone through a several month run up to putting someone into care, tell me how they have coped with this difficult transition period?
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Rosalind

    how I feel for your situation!

    You have to look for, and focus on positives in a very negative situation, in my experience.

    The process was actually very short for Jan, owing to her fall in hospital, but naturally I had been agonising about what would happen, and when, for many months... years even, while caring for her at home.

    The key was and is, for me, always to put Jan first.

    So, if it was absolutely necessary that she move to a care home, then it had to be one that I felt [on her behalf] comfortable with. She had to have the best of facilities in the good home that was available. She had to be cared for as well as one can expect in such a place. The home had to appreicate that I would be in daily, at random times, and that I was totally dedicated to her ongoing good care, and the life she has left.

    There are positives to be found in all that, and in the wee small hours, when I was berating myself for having lost the fight to care for her full time at home, I could latch onto some of [even one of] the positives, and feel a little better about it.

    For myself, I knew I had to be around, so I needed to build a life that, while embracing Jan to the maximum extent that her dementia would permit, would also give me something for the future.

    I never felt guilty because, if you do your best and fail, or do your best and have some small successes, then that is all you can hope for. Who can do more?

    It is all very much a day by day process.
     
  3. Áine

    Áine Registered User

    Hi Rosalind

    If the guilt monster is too bad it might help just to look on this as keeping your options open. If you're on a waiting list you can choose to not take a place when one comes up. If you're NOT on the list and you need to get a residential place you're in trouble :eek: For various reasons dad went into care without planning. It was OK ish in the end, but it made for a bumpy transition ....... first into emergency respite care, and then into a very unsatisfactory nursing home because respite couldn't cope with him and there wasn't a place in a nicer nursing home straight away.

    Remind the guilt monster that you've already cared at home for several years and that you're at the point of desperation. Better a plan than a crisis at this stage.

    I also found that once dad was in care we could have more quality time together. Someone else was taking the strain of all the day to day things that I'd struggled with and worried about. It meant me and dad could play board games (after a fashion) and sit and watch videos and look at photos - none of which there'd been time for when I was stressed out trying to look after him at home.

    take care of yoursel

    hugs
    Áine
     
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,432
    And that, of course is the key. You may not be comfortable with the decision in an emotional or intellectual sense, but luckily your sense of self-preservation spoke up for YOU.

    Jennifer
     
  5. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Rosalind, feel for you.

    Get rid of the 'guilt monster' you are doing your best. That is all we can ever do.
    We were never trained for this situation, but if we put their needs first, we can't be far wrong. Take care, love
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.