Every visit to care home my OH angry & wants to go home

Discussion in 'Middle - later stages of dementia' started by Bem, Nov 20, 2019.

  1. Bem

    Bem Registered User

    Jul 15, 2016
    9
    My OH has been in a care home for 8 weeks. It was extremely traumatic getting him there, and I had to 'lie' to even get him in the car! I have visited 3 times (each time with somebody with me),and every time has been really difficult. The moment he sees me he just says we're going home, then gets more and more angry when we don't leave. Twice I've had to 'escape' and once I told him I was going to the loo - and left. The CH just advise distraction, but it doesn't work for me. Once I've gone he's OK & seems to forget. Yet when I visit him again he remembers that I disappeared the last time! I'm seriously wondering if there's any point in me visiting at the moment. He gets really angry, and it's very distressing for me (and the person with me). I wonder if anybody has the same problem - and any advice?
     
  2. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    405
    Sheffield
    I’m in the same boat, my OH has been in the care home about 12 weeks but always thinks I’ve come to take him home. He won’t take no for an answer and makes me promise to take him home next time. It’s so heartbreaking I don’t know what to tell him. He thinks it’s a hotel most of the time and can’t understand why I go home and he can’t.
     
  3. Tealy

    Tealy New member

    Nov 6, 2019
    4
    Hi
    Mum been in 12 weeks now but she still asks to come home.
    Seems the more we visit the worst she gets.She becomes frustrated and agitated and then aggressive.
    It's awful and I feel guilty every day whether I visit or not.
    Have been I'll myself recently and not visited for a week as I needed to recharge my batteries but it doesn't stop me feeling guilty..Starting to think that she becomes more distressed f she sees us but it's tearing me apart
     
  4. buttercups

    buttercups Registered User

    Dec 31, 2015
    23
    Very similar situation with me. My mum in in the late stages and cant understand much atall. She cant do anything for herself. Speaks rubbish most of the time. Eats very little with fingers. Struggles to walk but is determined.
    The only sense my mum makes is when she repeatedly says 'I hate it here, please take me home'. I am heart broken. As soon as she sees me, every day, she says ' quick get me out of here's. Its unbelievable because nothing she does or says makes sense except for these desperate pleas.
    I feel guilt every day of my life leaving her in the home. The guilt takes away all enjoyment from normal life.
    I wish I could cope at home with my mum, that's all she wants is to be home. But unfortunately I cant but, i have to live with continual guilt which i cant shake off.
    Sorry I'm not of any help. There are no easy answers as it becomes highly stressful having a loved one with severe dementia at home. Something has to give, it's so very sad. Mums been in the home for 5 months now and the pleas to go home have never stopped. Very sad.
     
  5. Bem

    Bem Registered User

    Jul 15, 2016
    9
    Somehow it's reassuring to know that it's not just me! I totally echo what you're saying about the 24/7 guilt & feeling that I'm inadequate & a failure because I can't care fore him now at home. What I've also discovered, through friends who have visited him, is that he remembers my visits & that I just left him there & he saw me going down the drive! This in spite of the CH assuring me that a few minutes after I've gone he's 'forgotten' and is perfectly OK! (At home, he'd lost all sense of time & days of the week!) At least I'd been comforting myself that he wouldn't remember the dramas, but now I have the added agony of knowing that each visit seems to just pile on the agony - and anger. Hard to know if it's better just not to go at all....
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,773
    Female
    South coast
    @Bem @Guzelle @Tealy @buttercups
    This "wanting to go home" is so common in dementia it is almost universal, but the home they want to go back to is probably not the home they came from. My mum settled well into her care home and was happy, but in her final year she started to say that she she wanted to go home. I asked her about her home and it was clear that she wanted to go home to her childhood home and was expecting that her parents and siblings (all long dead) would be there. There are many, many, people demanding to "go home" when they are actually sitting in their own homes.

    Wanting to go home is actually a state of mind. What they want is to go somewhere before dementia started so that they can escape the confusion and anxiety of the dementia. Mum used to say "lets go - lets get out of here" even before she started saying that she wanted to "go home" and I think that she could not understand that things did not make sense to her because of the dementia and she thought that if she left the care home (I used to take her out for trips to the park, garden centre, coffee and cake, etc) then she would leave all the confusion behind, not realising that it was internal and she would take it with her.

    Ditch the guilt (easy to say, hard to do). I never said goodbye to mum - I used to leave my coat and bag in the managers office, so there would be no visual cue that I was leaving, time my visits so that I would leave when a meal arrived to distract her and then say that I needed the loo and I would be back soon. I would also leave before she started sundowning. Sometimes it is better not to visit for a couple of weeks to break the loop of seeing you and being triggered to "go home"
    xxx
     
  7. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    610
    #7 Sarasa, Nov 21, 2019
    Last edited: Nov 21, 2019
    I've had this problem on and off ever since mum went into her care home six months ago. Things are better if I can mange to slip away while mum is distracted, but today was a bad one with her screaming at me as I disappeared in the lift. Earlier I'd tried to encourage her to have a shower and she'd said,' I'll have one tonight when I go home, and then again tomorrow morning.' Not quite sure what is happening in her brain but she obviously still doesn't think of where she is as anything other than temporary.
     
  8. Bikerbeth

    Bikerbeth Registered User

    Feb 11, 2019
    449
    Bedford
    I am afraid no advice as i am just muddling through. Mum was agreeable to going into a home but the evening I arrived she thought I had tricked her into going. A week later she hates me and blames me for taking her there. She tells me she is bored, staff incompetent and food awful. When brother rings everything is fine.
    She is also fine with OH visiting so he is going to go every 3 days or so but I am stopping visiting at the moment for my own health even though it hurts to think she is so angry at me
     
  9. Bem

    Bem Registered User

    Jul 15, 2016
    9
    Oh this is really helpful - it hadn't occurred to me that 'going home' is really a state of mind! In fact my OH actually says exactly what you said, Canary, "Let's go...let's get out of here"! This does shed a whole new light on the situation - thank you! Some very good advice - and a great comfort to know that many others are in the same boat. I'm definitely keeping away for a bit - and then I'll continue to use the 'loo' etc excuses. Other friends & family are visiting, and so far they've survived quite well - he doesn't associate them with 'going home'.
     
  10. Mannie

    Mannie Registered User

    Mar 13, 2014
    116
    Bracknell area
    All - it is heartbreaking to hear your experiences and reminds me of times when I would pull the car over , after leaving the Care home car park, to have a good c ry, otherwise I couldn't see to drive!

    There is only so long, I think, that you can continue with this type of interaction, before needing a radical rethink, together with all your family and the care home manager. Otherwise you will start to associate these visits with aweful experience and you won't want to go at all. It is a traumatic stress.

    With our family, we arranged for other family members to visit for several weeks, so that we could be completely reassured that parent was quite OK.

    Another later strategy I found was that, when I was a young 30 something I used to call to see mum and dad but went back to my home for my supper. So I did the same.....I left as the care home were starting to serve a meal. So this behaviour fitted in with what my parent had been quite used to, in the longer past, but also, the arrival of the food service was a nice distraction, with staff busying around, and carers increasing their interaction regarding helping with eating. This worked well. Leaving coat and bag in the managers office also helped .

    You could do similar when there are other types of distractions, such as your mum leaving with careers to get dressed, have her hair done, the start of a concert, the start of an organised activity etc etc.

    You need to make clear to the care staff that you absolutely need their help in this regard. You can have this added to your mums care plan to formalise thAt they should help with this aspect.

    One thing our social worked said to me, and which I found to be true, is that dementia behaviours , those which are tough to deal with, are usually a phase that will pass. Hang on to that, and ensure that you are looking after yourself. You can call the hotline , to talk over your situation, that also helps .
     
  11. SofaSoGood

    SofaSoGood New member

    Nov 22, 2019
    6
    Male
    Hampshire
    My father lives in the same house that my parents have lived in since 1963. But he STILL says nearly every night that he wants to pack his things and “go home”. We thought keeping him somewhere familiar would be beneficial (maybe it is) but it’s almost impossible to prove to him that he’s sitting in his usual chair in the living room of the house he’s occupied since 1963!
    What he’d be like in a Care Home I dread to think
     
  12. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,334
    Merseyside
    welcome to DTP @SofaSoGood
     
  13. Ernest

    Ernest Registered User

    Jan 23, 2018
    82
    I totally empathise with everything written here. The way I deal with my OH being in a CH is to stick rigidly to the routine we've developed. His FTD needs routine. It's hard. We all know that, but it's manageable. I still feel guilty all the time but try to reassure myself by thinking I'm doing my best to make life bearable for him even though he often asks when is he coming home. I never refer to me "going home" Instead I say "I'm going back to the cottage". I write in the planner what I'm doing and we go through what's happening before I leave. I leave at the same time every visit. I go every other day as I " work" the days I'm not visiting. Partly true but it's easier if he thinks I am! It's always 6pm when I get ready to go and I help him to bed. He then thinks I'm going back to the cottage and going to bed so I can get up to go to work in the morning. Sometimes he's confused about where the cottage is but I distract him by saying it's just up the road. No visit is ever the same. Sometimes I can leave with his blessing as it were, other times it can be a little more difficult. It just doesn't get any easier and the guilt monster is a constant companion. I'm not saying that this will work for anyone else it's just how I try to get through this.
     

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