Please don't throw me away, breaking my promise

Discussion in 'I have a partner with dementia' started by kindred, Apr 17, 2018.

  1. kindred

    kindred Registered User

    Apr 8, 2018
    When my OH was first diagnosed about four and a half years ago, he said to me, on the way home, please don't throw me away ... we are 72 and have been together since we were 18. He is the love of my life. I promised him I would never do that, never, he would never have to go in a home. We would stay together forever.

    Fast forward to this year, and four years of intensive caring as OH deteriorated oh so rapidly. I was broken and making myself carry on by writing 100 lines each night, I must endure. I am sole carer. Then the train crash, terrible fall, a and e and admission to hospital and the social worker writing the best interest statement that his needs were best met in residential care. I know this is right, I have watched three medical people move him, needs three, whereas I had been managing on my own. OH is tall and I am tiny.

    I have had to make another promise, I will be with you. We are still together. I spend up to three hours every day in his nursing home. I would like to tell you what it is like, you may find it reassuring. Yesterday when I went there after work (I still work two days a week as a mental health professional), he knew it was me and put his arms out for me and we had a hug. This has not happened in weeks before the accident. He is relaxed and happy for the first time. I think he was lonely with just me, even though I was trying to be an entertainer, well you know all that ...

    The staff greet me by telling me what he has been doing in the day, what kind of a night. They know and appreciate him so well, he is a gentle and positive presence even though he does talk nonsense all day!!
    I wonder how he will be when I go in today. And I am keeping my new promise, I am with him. That means the world to me, I have not failed completely. Thank you all, this is a wonderful forum.
  2. Beate

    Beate Registered User

    May 21, 2014
    You haven't failed anyway. Some promises are difficult to keep and his deterioration is outside your control. You haven't stopped caring and you have made the best decision for him - that's all anyone can do!
  3. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    Chard, Somerset
    Unfortunately mum is no longer with us but I believe I recognised her need for stimulating company over and above what the family could provide. She had amazing structured support and help from a couple of clubs and also went into day care where they encouraged her to knit, chat, do quizzes - things she refused to do at home and things within her sphere of understanding. Following the television was beyond her capabilities, she had no short term memory and, like you, I work part time so she was definitely lonely at home. She was living with us until a physical problem complicated things and she died after a short illness. I was looking at care homes for her from this autumn as it was becoming beyond me to meet all her needs - how on earth did you manage? I am in awe of you.
    Mum would not have realised the difference between a club, a care home and the family home but I believe she was content in all three and I don't think I would have felt too guilty come the time to have her move to a home.
  4. Bunpoots

    Bunpoots Volunteer Host

    Apr 1, 2016
    What a lovely and poignant post. It's so difficult to let go, even when you know you have to. You haven't failed, you haven't thrown him away, you've been brave enough to get him the care he now needs.

    This shows a high degree of love and selflessness.

    You still care. Well done.
  5. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    I will second all the above posts. Our wedding vows say we will love and cherish...and that is what you are doing. It is a very loving thing to put your husbands needs above your feelings. He is relaxed and happier, and you will be too. His day to day care is being done by others, you are providing the love!
  6. Lawson58

    Lawson58 Registered User

    You made a certain promise at a very stressful time in both your lives, a promise that was made with the best of intentions but without the experience and knowledge that you now have.

    We see this so often on Talking Point and those that are unable to sustain that promise invariably suffer dreadful feelings of guilt as if they have betrayed a trust. But things change, people get sicker and carers get older and the promise becomes the wrong thing for both, care that can't be given at home and an overwhelming task for the carer.

    Most importantly, you have not abandoned him and that's what really counts.
  7. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    south-east London
    You haven't failed at all - because the plain and simple fact is that you have not 'thrown him away'.

    What you have done is to make it possible to remain very much part of each other's daily lives, to enjoy each other's company and to make sure your husband's day to day needs are taken care of. The only thing that has changed is that you now have others helping you to achieve that.

    Thank you also for describing such a positive experience through the care home. It will bring a lot of comfort to others currently on the brink of making such a decision.
  8. kindred

    kindred Registered User

    Apr 8, 2018
    Thank you all so very much for your beautiful and so needed words. I will never abandon him, you all know that. AND today when I went in, OH said, so nice to see you my lovely lady ... It is as though a switch has thrown and he is back to being his loving self again. I led a group in a bit of hand jiving, then talked to individuals who I now see as friends. Last week I led them in a karaoke tornado of Delilah (you can have too much daisy daisy) and it was wonderful, everyone, staff, joining in if they could and swaying and belting out some of the words.

    Bit of a dilemma though today. One of the residents said, loudly, YOU SPOIL HIM, meaning my OH. So I said, how's that, sweetheart? and she said YOU SPEND SO MUCH TIME WITH HIM. So I explained he was my husband and she looked at me accusingly and said WHY DID YOU PUT HIM IN HERE, THEN??
    But I also take from this that many of the other residents (and I try to spend time with as many as I can) may be wondering why I spend more time with OH and it isn't going to be possible to explain.

    Thank you all with all my heart, I am finding a life in this, if you know what I mean, and I'm beginning to feel a valuable human being again. I lost that confidence completely when I was the invisible carer ...
  9. kindred

    kindred Registered User

    Apr 8, 2018
    Thank YOU. The atmosphere in this specialist dementia nursing home is wonderful. I had completely forgotten what fun was, and I am sure OH had too, and then we have discovered it again here. I would like to add that I am having to self-fund, and this is certainly not the most expensive home in my area. It just has an enormous heart.
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Such wonderfully positive posts @kindred. I just wish I could have seen a video of the Delilah performance!

    Wishing you and your husband much strength and many good wishes.
  11. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    In the Care Home where I work as a volunteer, you see residents subject to the whole spectrum of dementia. You see them, at times, unsettled, but so very often cheerful, laughing, engaged in some way which negates stress anxiety or the so often dire situation which was so evident when still at home. Whilst family and friends might speculate on 'I wonder how they are? 'What's happening to them, now?' as an ongoing thought process, the fact remains that so much of their day time is really positive and rather pleasant an experience. And when the Care/Nursing Home is GOOD, then you are likely to find such a reassuring outcome as your own. How can you have failed in any way? The day I entered my mother's Care Home, after a long period of quite intense caring, the very first day of 'emergency respite', was, to be frank, an utter nightmare. But, after a period of time, when everything 'settled' into the kind of presentation you describe here, it was as if an enormous black cloud was gently swept away, to reveal something quite heart-warming and genuinely uplifting. And the dementia, which at home seemed to rule the roost, retreats into its box for long periods, allowing the 'hugs' and the true loved one to flourish in their own, special way and in turn inspire one to meet the following day refreshed, and so very, very thankful.
  12. kindred

    kindred Registered User

    Apr 8, 2018
    oh YES, I so agree. I have seen so much love and devotion in this nursing home, so very much.My OH is so often the true loved one, as he was, even if he is now profoundly disabled. He looked so well and beautiful this morning. Thank YOU.
  13. Little Circles

    Little Circles Registered User

    Mar 30, 2017
    You have done so much, Those are lovely words
    Thank you for sharing those with us
  14. kindred

    kindred Registered User

    Apr 8, 2018
    Thank you so very much. Just come home from being with OH. An emotionally wrenching time. We had a session of dance and music therapy which was very instructive in the way it enabled the residents to express their emotions. OH was crying and that is something OH only did before when talking about his mother (who, like my mum, had MS). I felt so wrenched, he was crying in the classical music and jigging along in the Abba and the Country and Western (King of the Road an enormous hit!). Hugging him while he was crying, seeing his tears, wondering how many times the human heart can break ... my beautiful boy. Still my beautiful boy. Thank you with all my heart for your wondrous replies, I feel you are with me. This post is fantastic.
  15. Quenelise

    Quenelise Registered User

    Oct 7, 2017
    Thanks so much for sharing. Your new promise gives me hope. I'm sure everyone here fears the advent of a crisis point that may cause us to consider residential care for our loved one.
    You have shown a different angle. Your new promise, which I love, shows how a positive situation can be created out of what is perceived as a negative one.
    You haven't broken faith, you have just followed another pathway to keep your promise.
    Thank you again
  16. kindred

    kindred Registered User

    Apr 8, 2018
    Oh thank YOU. Thank you for liking my new promise. Thank you for your encouragement.
    It has always hovered over me, a kind of regret that we never held hands enough, me and OH. We were always outdoors on some new adventure. I can hold hands with him now and it's the answering press of his hand that I live for.
  17. kindred

    kindred Registered User

    Apr 8, 2018
    Me again, just back from spending several hours with OH. He wasn't in good place today, worried about business decisions as usual. I pretend to be his secretary and send memos etc ... He managed one lovely smile for me, so that makes it all good. I need to see his face as it's the only thing that eases the broken heart in me.
  18. kindred

    kindred Registered User

    Apr 8, 2018
    What's strange is that visiting OH in his nursing home is making me feel like a human being again, valued, able to support and be appreciated. I love it that the staff let me get so involved. When Oh was living at home, people treated me as though I had dementia, took a step back, brought every conversation back to my OH's latest deterioration, would not let me get away from it mentally. And yet in this nursing home, surrounded by residents with Dementia, there is more humanity, more loving moments and more all round interesting discussion. Never envisaged this. My self esteem, once at minus level is beginning to build again. Thank you for reading this. OH in much better place, oh I do love his smile.
  19. kindred

    kindred Registered User

    Apr 8, 2018
    So today in I go to OH's new home (specialist dementia nursing home) and OH first of all tells me I am amazing, but looks the other way when he says it. Grateful for small mercies, me.
  20. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    Totally agree

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