1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 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.

Wanting to come home.

Discussion in 'I have a partner with dementia' started by TriciaBee, Jul 14, 2019.

  1. TriciaBee

    TriciaBee Registered User

    Jul 27, 2018
    16
    My husband has been in a Care Home for 6 months now. I thought he was beginning to settle but he has recently been demanding to ‘go home’. He doesn’t know where home is any longer and he doesn’t know who I am half the time. This is making visits unbearable. I went to stay with one of our sons for a few days and I think that triggered it off.
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,066
    Merseyside
    How distressing for you @TriciaBee. Hopefully it’s just a phase & will pass.
     
  3. Ernest

    Ernest Registered User

    Jan 23, 2018
    77
    TriciBee,. I'm not sure if I'm going to be any help, but my OH has been in a CH for a year now. I've probably already said this in one or other of my previous posts, but I have found that getting a routine fixed has helped. I'm lucky in that he knows exactly who I am but this can be difficult as he just worries about where I am and what I'm doing. Even though I may not necessarily be doing what I tell him I am, because it's part of the routine he kind of accepts it. He will often ask about coming home, why can't he come home, where is home ?? I try to explain that he has to stay there because I can't care for him on my own and keep him safe. He'll shout and rant for a few minutes then I just quietly change the subject. It's not nice but it's the only way I can deal with it. I avoid mentioning anything to do with our cottage and I never refer to it as "home" When I leave him after a visit I just tell him I'm going back to the cottage or the name of our village. He doesn't remember how to get there or the cottage so I think it's better to leave it that way. I don't talk about what I'm doing at home such as gardening or sitting outside as I think that may stir up something. I try to concentrate on what's around him at the home. He doesn't take any interest in anything going on there, but keeps himself to himself mainly. It's certainly not easy is it? Today even though he had it in his diary that I would be there at 4pm, when I arrived just before 4, he burst into tears. He said he'd been waiting and waiting for me and was so glad I'd got there. I tried to console him saying he knew I'd be there and perhaps having the TV on might take his mind off the time, well, he just went ballistic shouting "don't preach, don't tell me what to do, I don't want the TV on" This went on for a few minutes so I left the room then came back in and said"let's start again" He was ok then. In a very long winded way, what I'm trying to say is that you are doing your best and you have to try to rise above the angst. He's safe and well looked after, I hope. The sad thing is, we partners remember all these horrible times, our PWD probably don't. Each day is a new day. My OH certainly isn't settled, but he's gradually accepting the situation a bit better. Keep telling yourself that. Earnest xx
     
  4. TriciaBee

    TriciaBee Registered User

    Jul 27, 2018
    16
     
  5. TriciaBee

    TriciaBee Registered User

    Jul 27, 2018
    16
    Thank you Earnest. I can identify with all the things you describe. Writing things down for him is a good idea. I tried it before without success but I will try again. Also I take your point about having a routine. At the moment I go every day but not at the same time. Perhaps if I go at the same time it might help. My visits are upsetting for both of us so I will try anything.
     
  6. Bree

    Bree Registered User

    Oct 16, 2013
    237
    I know this has been said to me, but should you go every day ? Maybe you might feel less stressed if you went for 5 days, rather than 7.

    I agree with Ernest, routine is good, I visit MOH who's still in hospital, 6 days a week, but always at the same time. I help him to eat (if I can) so he knows I'll be there about lunch time. The one day I don't go is usually filled with weeding the garden and a general catch up with housework, but I don't have to dash about and drive for a half hour, and then back again.

    I still feel guilty about not going one day a week, but then I get my sensible head on, and think if I don't have a break, I might end up ill myself, and then won't be able to go at all.

    We all know how you're feeling, but you do have to take a step back some times, and chill.
     
  7. TriciaBee

    TriciaBee Registered User

    Jul 27, 2018
    16
    Yes, I know all this, but why doesn’t he know me? My heart is broken.
     
  8. pevensey

    pevensey Registered User

    Feb 14, 2012
    103
    Hi Ernest, and TriciaBee, a lot of what you have both said really relate to my situation at the moment, my hubby is on 2 weeks respite which finishes on Tuesday, I'm feeling sick and panicking and really anxious about him coming home, although our GP has said he needs to be in care permanently, he has vascular dementia, but like you Ernest when I go to visit him which is 6days a week hes always grumpy hardly any conversation and just complaining about everything, so I get upset on my way home, but ALL the carers say how well hes settled in and hes happy and chatty, laughs with the other residents, but I never get a smile out of him, but then he was always very angry and unsmiling at home the last few months, always worrying about something all day everyday. Sometimes I think hes relieved to be there because hes hasn't got anything to worry about what needs doing in the house or what he has to wear, it's all done for him.
    I really don't know what to think, I try to chat and I'm happy and smiley when I visit him but hes just grumpy and no conversation, it's hard work.
     
  9. Ernest

    Ernest Registered User

    Jan 23, 2018
    77
    Hi pevensey,. I feel for you, I really do! It's such an awful situation to be in. I suppose I'm lucky in that after a particularly difficult visit I can come home and move on until the next one. I had an awful time on Wednesday but Friday and today, Sunday, he was ok. The thing I keep coming back to, is that, if you're not with your OH 24/7 you can take a deep breath and think tomorrow another day. If you're not in that position, you or I, are too tired to keep up the pretence that everything is fine. I used to end up being really horrible to him because I simply was tired !!!! Keep taking deep breaths, counting to 10 and remembering that tomorrow is another day. Xx
     
  10. pevensey

    pevensey Registered User

    Feb 14, 2012
    103
    Thankyou Ernest, yes I do feel better when I get home after a visit and shut front door like world is locked away, I get peace of mind then because I know when I'm not there OH will be chatting and laughing with the other residents. I've been going everyday but am trying to make it every other day now. I'm feeling anxious this evening worrying what the Health and Social Care lady is going to say to him tomorrow, it's meant to be about whether he can stay another 2 weeks and then decide if he needs to be permanently in care, that is what his GP says he needs to be, permanently.
     

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