1. Q&A: Lasting Power of Attorney (LPA) - Thursday 27 Sept, 3-4pm

    Power of attorney (LPA) is a legal tool that gives another adult - often a carer or family member - the legal authority to make decisions on behalf of someone with dementia, if they become unable to themselves.

    Our next expert Q&A will be hosted by Flora and Helen from our Knowledge Services team. They will be answering your questions on LPA on Thursday 27 September from 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

When will it stop hurting so much?

Discussion in 'I have a partner with dementia' started by Jean1234, Sep 12, 2018.

  1. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    197
    i know most of you are still struggling with the difficulties of caring for your OH at home and it wasn’t so long ago (6 weeks ago) when I was on my knees trying to do the same and not coping at all. But now my lovely husband is in a very good care home and I know he is being looked after far better than I could do but it hurts so much. Completely out of nowhere I still find myself dissolving into floods of tears. The first three weeks were horrendous but I did think I was now coming to accept the fact that he wasn’t at home anymore but obviously not.
     
  2. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    530
    Cambs
    @Jean1234 I am so sorry to hear how unhappy you are and know that there are others on TP who are in the same position, and who have written of their distress, with their loved ones in a CH and feeling very bad about it while knowing that there is no choice. I just wanted to say a few words to you even though I am not in the same situation at the moment.
     
  3. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    197
    Thank you so much for your reply. It means a lot to know there is someone out there connecting which helps to pull oneself together.
     
  4. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    3,490
    Kent
    Different for me because it was my dad but it still hurt...every time I visited 4 times a week...it did lessen a bit as he declined further in the nearly 3 years he was in his NH and I realised that with other family issues I had to deal with and made an adjustment...gained acceptance of the no win situation...OH illness...I would not have managed dad's increasing challenges..18 months on from passing away I still have the feeling that deep down I know he needed more help than I or one person could give...that I could not have done any more for him...that I continued to care and be his advocate right to the end...so am thinking of you at this tough time of transition for you..for your OH. I suppose it is because none of us ever feel that dementia should have forced us to make this decision..we want things to be ok and for them still to be in their own home which of course for many pwd becomes impossible for both the pwd and carer...
    but it has and it is the right decision made lovingly and unselfishly for our loved one.
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    1,376
    hello, I am in the same position but a little bit further down the line, six months. I know, both of us have had awful times caring for our husbands at home, but this is a different pain, isn't it. Sometimes it overwhelms me and I do not know what to do with the grief. I visit most days and write about it on my thread: Please don't throw me away (also under I have a partner with dementia). I have found that, and joining in with the activities at the home has helped me cope. I am treated like a member of staff and that gives me such pleasure. Six weeks is such a short time, sweetheart. Don't forget that with all we have been through we are suffering with shock that is not really addressed in any way. Talk to us and we can help. With love, Kindred.
     
  6. Thethirdmrsc

    Thethirdmrsc Registered User

    Apr 4, 2018
    35
    I feel for you @Jean1234 i have all this to come, and don’t know what it will be like. I like to think I will keep him at home for as long as possible, but can see problems forming already, stairs and no loo downstairs. Just remember that he is getting good care, and so must you.
     
  7. SKD

    SKD Registered User

    So sorry to hear this @Jean1234 - it is such a hard adjustment. Although I wasn't caring for my Mum at home directly I have still found her move to a care home very hard - it has taken away a lot of the connection I felt with her. I think I had focused on all the organisation and logistics and completed forgot that there would be emotional fall out. Please be kind to yourself and remember it is very early days - you wouldn't expect to be over a bereavement in 6 weeks and this experience is very similar. 4 months on I have stopped crying quite so much but I am still mourning Mum and I's evenings watching tv and trips to the cafe round the corner. So pleased that you have found a role and place at the NH. I have found it helpful to find someone to talk to but it is hard to find people who understand rather than simply being sympathetic.
     
  8. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,241
    Ireland
    You are grieving your loss, @Jean1234 , for the second time. You "lost" your OH to the illness, and now you've "lost" him again to the Care Home. Also, in the deep places of your heart, you know that you still have the third and final loss to come. All these are, in their own way, bereavements, and each loss is deserving of being grieved. You've also lost your shared future, your hopes and dreams of shared retirement, etc. Grieve for it all. But know too that you are still caring for your husband, by ensuring that he gets the care he needs that you, on your own, could not provide.
     
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    57,038
    Female
    Dundee
  10. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    197
  11. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    197
    Been reading other posts on TP and it’s help me realise how lucky I have been before OH went into the CH. We had 27 years in which we were hardly ever apart except for going to work. And in those years right up until three years ago (if you don’t count my difficult drive through Spain two years ago when the car broke down which I mentioned at the time ) we traveled a great deal, seeing wonderful places in the world, went on cruises and generally had lots of fun. He was a real party animal and we had lots of laughs with some wonderful people. So looking back I am fortunate to have some wonderful memories and lots of photos of our happy times together. So yes it’s all now come to an end but every so often we get a short spell of the fun loving man in the CH and he makes the staff laugh. He’s still my lovely husband it’s just he’s hiding most of the time. And I can, as the Manager of the care home said, enjoy the good bits and let them deal with the difficult bits.
     
  12. Ernest

    Ernest Registered User

    Jan 23, 2018
    46
    @Jean1234. I too thought I was beginning to accept my OH having to be in a CH. I have good and bad days just like him. Thankfully, work enables me to put him out of my mind for a few hours because otherwise it's all I think about. Should he be there? Couldn't I cope with him at home? How do I stop feeling so guilty? Not being able to reason with him as to why he is there eats away at me. Every visit will include him begging me to let him come home. I'm getting better at distracting him but as I drive away back to my "life" I'm in tears. It's for the best and I know full well that if he came home it might last a day,a week, a month , but it would end up in him having a fall and ending up back in A&E then back to square 1 !! As I've posted on TP before, the CH assure me that he's not showing any signs of distress which is good. He doesn't remember what we say at each visit and he doesn't remember any of the previous falls and hospital visits so we start again each time !! It's really really hard but reading these posts bring me back to earth knowing that there are lots of us trying to come to terms with our predicament. So, Jean1234, we are in this together. I need to accept that he simply isn't capable of reasoning and that he probably never will be able to forgive me for putting him there. I hope you will find empathy here too.
     
  13. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    596
    Female
    South of the Border

    it is like a bereavement, but it is also acknowledging that the situation with and around your husband is no longer anything that you can cope with, and that he needs full time professional care - that is so very, very hard.

    In a bereavement people often say the " Time is a great healer" - it is not, it never will be, but the human mind is capable of learning to live with something that cannot be changed.

    You will, in time, become used to the current situation - you will accept that he is not coming home - because you have no other option but to accept it. Then you will move on and make a different sort of life, that still includes him, in your visits, but is no longer totally about him.

    I hope this helps a little - so I will tell you something......

    When I was 46, my very much loved 13 year old, James, died suddenly. One morning I lay in bed and the thought struck me that for however long I was going to live, I had to live with this terrible unhappiness that was in my soul - and I did not think I could do it - but knew there was no option.

    23 years later, I am now 69, and it struck me the other day, that I have managed to live through those years, I have done it. and that's all I can say to you.
     
  14. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    530
    Cambs
    I find your words so true and consoling @maryjoan and remind me of the poem with the phrase “rage, rage against the dying of the light”. I rage away against the loss of my husband as he was, but it does no good and I have to carry on caring for him, still at home and functioning of a sort, but no longer my husband but my child. The shared experiences, although at different phases of dementia, do help to ease the burden.
     
  15. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,569
    Toronto, Canada
    @Jean1234 I think I cried non-stop for the first 3 months my mother was in care. It is always difficult but I learned to endure it.

    @Grahamstown I had that poem "Do not go gentle into that good night" read by my high school English teacher, now a friend, at my mother's memorial service (with father changed to mother, obviously). It was important to me, as I deeply felt that my mother had raged long and hard against her Alzheimer's. My friend asked me if I were sure about my choice, as it certainly is not about acceptance or resignation. But I felt and feel it was the best choice for us.
     

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