Coping with husband in care home

Discussion in 'I have a partner with dementia' started by Bugsbunny4, Jan 9, 2016.

  1. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    My husband went into a care home at the beginning of November. He now seems to have really settled down and his behaviour is no longer an issue as far as I am aware.
    However he has been taken off most of his diabetics medication dye to weight loss, and also his diazepam reduced to just one in the evening.
    He seems much more alert and is remembering things quite well, particularly when he has visitors who he can relate to the activities he used to take part in. He is quite capable of holding a lucid conversation, but at times will bring in remarks which don't fit. For example after talking with me and a friend for an hour in a very normal way, he asked me where I had been all day yesterday. I told him I had been to see him in the afternoon and we listened to a Louis Armstrong CD. He said I had gone out at 8.30 and not returned until after 10.00pm. He didn't seem to believe me. On entering his room he said quite firmly he wants to come home , he hates it there and he can't live without me. He can't wait to get out.
    Recently he has been talking about buying a car again( has no current licence due to stroke induced seizures)
    Also keeps asking when we can go on holiday again. I took him abroad on my own in June 2015 but it wasn't exactly relaxing. He was convinced one night I had been out all the night.
    I feel absolutely wretched because when he is lucid it's hard to give a good reason for him staying there. Wanting to go out and buy a car was a big problem before he went into care and caused a lot of stress because he has no understanding of why he isn't fit enough to drive. He said to my friend today "they all think I am mad around here , but I'm not"
    I feel bad because whilst I haven't been caring for him at home I have regained my life and have loved the freedom. I would be loathe to give that up, but I love him and if he has improved enough to come home I will have to accept that.
    Is there anyone out there who can identify with my situation?
     
  2. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Sweetie, I should think that everyone who has been in your position can relate to it. When John was in a Care Home, I told him it was a hotel, and some days, especially in the first few months, we had quite intelligent conversations. When I say "intelligent", I mean that anyone listening to them, would think that they were true.

    He would tell me that he'd had to stand on the train, all the way, when he'd been to work that day, he told me there was a boat outside, that was taking several of them on a trip along the Thames to Southend, but not everyone was going, so I wasn't to speak about it.

    He asked me to give him money, because when he'd been Up North the week before, he had no money for a hotel, so had to sleep in a field, and the police had brought him back to "this hotel". He asked if "this hotel" had paid his wages into his bank account, because he'd been doing their accounts for them.

    But then he also asked if I was pregnant (we'd been together nearly 50 years ;)), and one day, when I took him for a hospital appointment, he asked if we were going to get married. And because he sounded lucid, and would often plaintively ask if he could come home, I too wondered if he should.

    But then I had to think why I had sought a Care Home in the first place, and I knew I couldn't cope if he came home. But, like so many other spouses, you feel so full of guilt.
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,093
    Yorkshire
    Hi Bugsbunny4
    Scarlett123 sent her reply as I was typing - and her reply is so much better than anything I could write
    You're asking questions - rather than taking him straight home right now - because deep down you know you've done the best by him by finding a home where he is supported so well that he is relaxed and presenting at his best, and that he needs to stay, for his benefit and yours
    just think how many staff it takes to provide his care - and there's only one of you
    maybe read back over your posts here?
    Enjoy your visits with him - enjoy your time to yourself :)
     
  4. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    427
    I totally identify with your situation and this is after my husband has been in care for 18 months. I keep hoping that I can feel differently, but again, today, when I left him with one of my lies - "just going to buy a lottery ticket - I'll be back soon" - he said he only wanted to be with me and the dog all the while, and not with all these other people.:( I just feel devastated all the while.

    I always ask the staff how he's been and they say fine and I say what about the personal care and today they said " not too bad - once we get the water on him" but it still takes 3 of them and he still lashes out and swears and bites and kicks at first. I know I could not cope with this at home, and he always looks clean and well cared for when I go, and says without prompting what a nice place it is - then in the next breath "when are we going home". I've read his care notes and its not pleasant reading.:(

    I did take him home on 23rd Dec to stay overnight as his son and grandson were coming down from Yorkshire to stay over, so I knew I would have help if I needed it, and I wanted him to spend quality time in our own home with them. The evening was fine, he enjoyed the company and seemed to recognise the house (but he was a builder, and really I think he just recognised the work he's done on it.) When the others had gone to bed, I got him to go, but he was up again in 10 mins and refused to back to bed and I had to stay awake in the kitchen with him all night, with him constantly saying "when are we going home".

    I got him back to the home ok as I often take him out anyway and say we're just going in for a cup of tea and once he's in and everyone greets him like an old friend, he's ok and I am able to sneak away

    This made me realise sadly that home exists only in his head now as somewhere safe - he also mentions his mum and dad being there - so I know for sure that I couldnt manage him at home and he wouldnt be happy. I seem to be a constant reminder that he should be somewhere else, as the staff say he is ok when I'm not there. My only comfort is that his short term memory is so bad that once I've gone he won't remember me going, or even visiting, if you can call that a comfort

    Like you, I have regained my life, but so wish he could be better so I could have him home but unless they find a miracle cure for this awful disease, then we just have to live with our guilt feelings.

    Sending you lovexx
     
  5. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    I think you are very brave to take your husband home, I would never get my husband back if I was to take him out.
    You are right it does take more than one to do the personal care and when he was at home he wouldn't accept help from me, and took a shower when he felt like it. The staff tell me he is fine when I am not there but because he seems so much better I take everything he says on board. Sometimes he talks about his mother as if she is still alive.
    When he is " in dementia" it's hard to tell exactly where he sees himself in terms of time scale, but the lucid days are becoming more frequent. This is a good thing because some visits are really enjoyable, but at the same time when he is more like the man I love it's harder to leave him behind especially when he seems so unhappy. X
     
  6. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    427
    You just have to trust the staff when they say he is ok when you're not there - its hard to believe when they are so clingy and not wanting you to leave them when you are there. I've broken down many times in the home and the staff comfort me and say how he joins in with them when he's having sleepless nights, has pizzas with them etc. But I still feel like I'm abandoning him.

    He is very sociable with the staff but doesnt mix with the other residents at all - wont sit at a table with them, and doesn't join in activities with them. I go when they have music therapy and when they have an entertainer, to make sure he joins in with that, as he loves it once it starts. When I ask him what he's been doing during the day, he says he's been doing work there and then often rambles into a fantasy land, where he's been out and about doing other things.

    I wasnt really worried about taking him back home, as for the last year he was there, he never recognised it as his home and the aggressive demands to be "taken home" or him just going off - sometimes in the middle of the night to "go home" was the main reason I couldnt cope. xx
     
  7. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    Thank you , I feel very comforted by your reply. Xx
     
  8. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello bugsbunny4, l am going through exactly the same as you, l do visit everyday for 3hrs, he has started to say shall we go out, l want to see people l know, he cannot remember friends names, we did have many friends, but only two keep in touch, and one couple go to visit him. Everyday for the last week all his clothes have been on the bed, as he has to get out of this place and go home, he said he has had enough of it. Like you l am enjoying my freedom, and know l cannot have him back home, as l could not cope with him. I only stay an hour yesterday as l couldn't cope with him, he was so agitated. It is very upsetting for us, but there is not much we can do about it,
     
  9. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    You're being so brave Pam, and I know how hard this has been for you. Sending loving thoughts to all who have spouses in Care Homes xxxx
     
  10. Bugsbunny4

    Bugsbunny4 Registered User

    Nov 6, 2015
    80
    Yorkshire
    You really do understand don't you. Sounds like we are in the same boat. Today when I visited my husband he was asleep, roused after 1.1/2 hrs ate a slice of cake I had taken for him and drank tea then went back to sleep! I left after I had been there 21/2 hrs, couldn't see the point in staying.
     
  11. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Thank you Scarlett for your post, you know so well how we are trying so hard to cope with this awful disease, bless you
     
  12. pamann

    pamann Registered User

    Oct 28, 2013
    2,635
    Kent
    Hello bugsbunny4 l felt like that yesterday, so left after a couple of hours, didn't sleep that night. Oh what torment for us.
     
  13. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    So many memories of when I was in your shoes, and knowing how exhausting, distressing and painful it can be. You're all stars in my book :) xxx
     

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