My husband's in a home because I couldn't cope now I can't bear the guilt

Discussion in 'I care for a person with dementia' started by Southey, Dec 28, 2015.

  1. Southey

    Southey Registered User

    Jun 28, 2012
    My OH has had Alzheimer's for over 11 years. I was 60 and he was 67 when he was diagnosed. For the last two years he was at home if we went to visit family he would want to come home within a couple of hours of being there. If we went on holiday he would want to come home within 24 hours. He hated going to groups, he just wanted to be at home "in his garden". Gardening had been his main interest outside his business all his life. We have nearly an acre of garden, and gradually it was me doing all the work, because all he could do would be to pick up a few sticks and carry them to the bin. He wouldn't use a container. He didn't know where his bedroom was, or the bathroom, and he needed help with cleaning his teeth, and he complained about food. He went into a CH in October because I was totally exhausted. It has taken him ages to settle, and he is very confused. I think he is worse when I visit because that reminds him of home, but I don't want him to think he's been abandoned. Yesterday I found a notebook in his room and he had written I AM HEARTBROKEN and I AM ASHAMED. It was very wonky writing, but that's how I feel too.
    My family say I must let him stay there because it's too much for me to have him home again, and he would become even more unsettled by being moved again, but I just don't know what to do. I've enjoyed being able to travel to see my grandchildren which I wasn't able to do when he was at home, and to be able to go and see my friends. He hasn't got any friends because he never bothered with people other than me and family, so no-one ever visited him at home. I feel so guilty.
  2. RedLou

    RedLou Registered User

    Jul 30, 2014
    Southey - put the guilt monster away. It isn't you that has made him ashamed or heart-broken - it is dementia. Your OH would be feel the same at home for, sadly, there is no restoring his peace of mind. You have done your best and your best is good enough. Don't let dementia eat you up too - enjoy your life, enjoy your family and your friends.
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Oh Southy, Im so sorry.
    Moving a loved one to a residential home is always a huge step and accompanied by guilt. The guilt should not be there because we have tried our best and have chosen a nice home for them. If we didnt care about them then it wouldnt matter - but we feel guilty because we do care about them.

    The trouble is that dementia is just too big for us - its like a huge tidal wave that can knock you off your feet. Our loved ones want us to put everything right, but we cant.

    Go back and write a list of all the reasons why he moved into a CH in the first place. I doubt anything on that list will have changed.
  4. TinaT

    TinaT Registered User

    Sep 27, 2006
    Guilt has no place in this story!! You have done your very best in circumstances which have been very, very hard to cope with and you have done it well for such a long time. Your husband is being cared for 24 x 7 which you cannot do alone! I had the same guilt and it haunted me for so long. In fact until he died three years ago.

    You did not cause this illness but you are the one who has had to deal with it as best you can. Put the guilt away. There is no need to feel guilty and guilt will corrode everything you do if you let it. Please don't let it.

    You are between a rock and a hard place, you want your husband home but know that his illness is more than one person can cope with. Try to accept what cannot be avoided hard though this is.

    My very best wishes to you.

  5. marionq

    marionq Registered User

    Apr 24, 2013
    IT would be comforting Southey if we could shake dementia by the scruff of the neck and make it feel guilty. Since we can't we do the best we can until it overwhelms us. That's where you got to and now you've had a rest you are able to reconsider your decision.

    Whatever you do remember how things were and how you could not cope. Would it be different now?

    Good wishes.
  6. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    North East England
    Hi Southey, and welcome to Talking Point. I'm so sorry to hear that you feel guilty about your husband being in a home now.

    I'm sure other members with more experience will be along very shortly to offer comfort, support and advice, but in the meantime I just wanted to say hello. I feel myself that sometimes it's just too much for a person to cope with, and that the guilt monster has a lot to answer for.

  7. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    I have the guilt monster as well although my husband has been away now for 18 months - I still trigger the "going home" response in him when I visit, but I know now that home is somewhere in his mind - a safe place with his mum and dad - a place that doesn't exist physically. I even had him home at Christmas, and he still kept saying he wanted to go home.

    I don't think the guilt feeling ever goes - you have to learn to live with it.

    Please be assured, as all friends and family assure me, that you have looked after him wonderfully for longer than most people could cope with, and try and push the guilt away - I am sure as time goes by he will become more settled and you will be able to enjoy quality time with him.
  8. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    Hello Southey Welcome to TP.

    I hope you will find lots of understanding and support here as I did and still do.
    I wish I could give your guilt monster a good hard shove and stomp on it for you.
    It has no right bothering you at all
    You have done your level best for your Husband for many years and just because he is now in a CH does not mean you have stopped looking after him.
    I trust you are happy with the care your Husband is receiving from the staff.

    I looked after my Mum full time for her last few years as Dad had worn himself out caring.
    You have looked after your Husband full time for many more years, now it's time for you to have a long break, you not only deserve it you need it you must be exhausted.

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