1. fortune

    fortune Registered User

    Sep 12, 2014
    143
    I've decided I can't have mum home. She's been in either hospital or respite stay in care home since January. I feel terrible but I know I will not be able to cope with caring for her now she has regressed so much both physically and mentally. My big problem now is what to say to her. she thinks she's just there til she is well enough to come home - though she has forgotten what home is. Every visit is constantly asking when she will be leaving. It is really hard, especially as she is far more able mentally than the other residents who she refers to as a bunch of loonies. I have no particular concerns about the care home, staff are very nice and it seems well run. Wondering if anyone else who has been through this wants to share what they did? Thanks.
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,256
    Female
    South coast
    ((((((((((((((((((((((((((((hugs)))))))))))))))))))))) @fortune - thats a hard decision to make.

    You dont actually have to tell her that she is not going home. I never did tell my mum. I told her the same as you - that she was convalescing and she could come home when the doctor says. I would just carry on saying the same thing to your mum.
     
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,093
    Toronto, Canada
    I agree with @canary - there is no need to tell her she's not going home. My mother didn't get fixated on going home but was fixated on visiting her parents (both my grandparents died in 1970). When she asked to visit them, I would immediately agree but would say "Let's go the day after tomorrow as I have a dentist/ doctor/ chiropodist appointment tomorrow."
     
  4. Jale

    Jale Registered User

    Jul 9, 2018
    248
    Female
    Mum went from hospital into a nursing home nearly 12 months ago now. We call the carers nurses and the floor a ward with private rooms. So far (fingers crossing now) mum thinks she is in hospital, last week she did mention about going home but distraction with a cup of tea and a biscuit and thankfully it went out of her mind. I will add that home to Mum is London and she hasn't lived there since she was a child.
     
  5. fortune

    fortune Registered User

    Sep 12, 2014
    143
    The home have asked that she signs an agreement that she will stay there permanently. They have suggested asking the GP to talk her though it. Has anyone else been asked to do this?
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,256
    Female
    South coast
    I signed an agreement, but mum never did.
    I cant see the point of getting someone with dementia to sign agreements like that. How could she commit to it?
     
  7. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,507
    Female
    I signed the CH contract, I have financial LPA, but now H&W. My mother wouldn't have been able to sign an agreement whoever 'talked her through it', she wouldn't understand what it meant and nowadays I very much doubt she could sign her name. I don't understand what value or purpose it would serve to have someone with dementia sign this, it sounds an odd request.
     
  8. Helly68

    Helly68 Registered User

    Mar 12, 2018
    402
    We signed Mummy's care home agreement, we have LPA. I would be very concerned about them trying to get her to sign anything - as raised above, how could she consent?
     
  9. fortune

    fortune Registered User

    Sep 12, 2014
    143
    I have LPA for finance, but there is no Health and Welfare LPA. I'm cautious about involving the GP. Mum's old GP had known her for years but she retired, and the new GP has never even met mum. It sounds like would essentially be a capacity decision. And if the GP thinks she has capacity, and she demands to come 'home', well it could all get a bit upsetting. In the meantime mum is on respite rate which is substantially higher than resident rates. Not sure what is the best way forward.
     
  10. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,507
    Female
    I agree it does sound like a capacity decision, although I don't know how the GP would make it, particularly if he's never met her. As she keeps asking to go home I think the CH are trying to cover their backs.

    Was your mother was living with you? If so, whether she has capacity or not you can say you cannot cope and refuse to take her back. If 'going home' means returning to her own house, that could insist on sending her back with carers at home.

    Let us know what happens.
     
  11. fortune

    fortune Registered User

    Sep 12, 2014
    143
    We moved to be next door to mum. Mum is self-funding so no social workers involved (yet). There is no way she could return to her old routine successfully due to her recent decline but also because I am not willing or able to provide the higher level of care that she now needs. I am sure she will beck either in hospital or the home within days. I agree that the care home are trying to cover their backs in case it all goes pear-shaped, but also to lay the paper trail in case it ever gets to a DoLs hearing etc. The alternative seems to be just leave her at the home on the respite rate, which as I mentioned is higher, until she really does lose all semblance of capacity. Not good.
     
  12. OutdoorGal

    OutdoorGal Registered User

    Feb 26, 2019
    32
     
  13. OutdoorGal

    OutdoorGal Registered User

    Feb 26, 2019
    32
    Hello there, I thought I had wrote this myself. I am in exactly the same predicament with my Dad. He was in a dementia rest home and fell and broke his hip, spent 5 weeks in hospital and was assessed for needing general nursing care. He has not settled in the nursing home, constantly wanting to get out, go home, wandering, getting agitated and now apparently he has become aggressive particularly when they are intervening to do personal care (incontinent). Last week he escaped through the fire escape at 5am and today they have taken him out in a wheel chair, to try and passify him, and he shouted to all the passers by "Help, these people are kidnapping me". I am at my wits end the Home, in a nice way, want him out and have said he needs to be in an EMI unit. I am awaiting an assessment with the Mental Health team but I really don't think he needs to be in an EMI unit. They are going to try and treat him with anxiety medication, scored high on an anxiety assessment, and have mentioned getting a one to one which they said I will have to sort. Had difficulty getting a social worker so trying to puzzle it all out myself, its very stressful.

    Its interesting reading different people's experiences on here and feels good to be able to talk about it to others in same situations. Thank you for listening to me and I hope you have managed to get sorted a bit.
     
  14. KenS

    KenS New member

    Nov 30, 2017
    1
    Hi,

    My mum was diagnosed with Alzheimer’s Dec2017 and then 6wks later my father passed away suddenly. As a result of that I had to put my mum into a care home as a respite plan. Within a few days she had completely forgotten about my father and as she had settled I made the tough decision to keep her there “in her best interests”. That is a phrase you start to hear a lot and wither you have lpa or not (although I have both lpa’s). As long as the decisions you are making are in their best interests then you shouldn’t face any issues.

    Over the time my mum has been in the care home I find that it is me who has all the issues, guilt & regret that I have put her in a home. Constantly questioning myself if I did the right thing, the constant turmoil in my head can be difficult and it stopped me visiting for a while. When I turn up she doesn’t know any difference, she doesn’t know I haven’t been there for weeks, she is safe, well cared for and looked after and I couldn’t ask for anything more.

    Make the decision with your head and you will be ok. Sorry long post.

    Ken
     
  15. SoAlone

    SoAlone Registered User

    May 19, 2016
    116
    Female
    Devon
    My OH has been in NH now for almost a year. When he was in NHS Assessment centre he constantly wanted to come home. Since moving in to present NH he rarely mentions it unless he is really agitated . Like Jale we call the carers nurses and explain that they are needed to care for him. With regard to signing documents, I have Financial Deputyship but not H&W because this can't be obtained once person cannot give consent and every big decision made by Multi Discipline team on 'Best Interest' basis. Asking your Mum to sign anything would be pointless as she wouldn't be able to understand what is explained to her. I signed all NH documents as Next of Kin. I did have a similar situation with DWP, who insisted on seeing OH before accepting me as Appointed Person for Benefits, but the chap that visited was very gentle and understanding and didn't press OH on any points. Hope this helps
     
  16. myname

    myname Registered User

    Jul 7, 2011
    2
    My auntie has been in care for 3 years, she went there straight out of hospital after yet another fall.,she was neglecting herself, her home was a tip, v smelly, it is ‘senile squalor syndrome’. Since going into care she has been clean, well fed, every visit she would say , ‘I wish I was home’. I have never told her that she will not be going home on the advice of the manager, why upset her? I just say that the doctor wants her there so she can be looked after. All has been well, she always accepted what I said and would say that she would be well enough one day and she had started to mention home less and less and was content, until these past few weeks when she seemed very anxious. I couldn’t understand what had changed,
    I spoke to the care manager who said there was new staff and because part of the syndrome means auntie is very plausible and would appear to have little wrong with her apart from being unable to care for herself or keep herself safe, a carer has told her that she is so well she will be going home in a few days... So I am now left with a fretting relative and my appearing in a court regarding a deprivation of liberty order being granted which was applied for by the care home but not dealt with by soc. services. I am assured it is just a formality but I still worry, her home has gone to pay the fees and because it had to be fumigated. So we try to do right by keeping our loved one safe and cared for then someone upsets the apple cart.
    Hope all goes well with you and your mum.
     
  17. Lizzy8

    Lizzy8 Registered User

    Jan 11, 2016
    1
     
  18. Tabby-cat

    Tabby-cat New member

    May 27, 2019
    7
    I am in a similar position with my mum. Some of the time she is lucid enough that I have tried to explain that the care home is her home now, at other times nothing makes sense to her. Perhaps this was the wrong thing for me to do but it is hard managing the situation and I don’t have siblings to share the responsibilities. She constantly asks why she can’t go home or when is she going. I have finally removed all bags and suitcases from her room as she was packing to go home every day. This has helped in one respect but then she worries that she can’t find her bag. She is very anxious and the doctor has been called several times now. I share the feelings that people have about guilt even though there is no way she could manage at home. She has been there for 6 weeks and each time I think she might be settling here is another episode of anxiety.
     
  19. Lifebuoy44

    Lifebuoy44 Registered User

    Jun 21, 2014
    18
    Male
    Sleaford, Lincs
    Dear All,
    My OH and I have seen these issues at first hand on two periods recently, The first was when my wife fell from our bed, as a result of a Urinary Tract Infection in April. She was in a Community Hospital for seven weeks, where she overcame the UTI, then went down with a chest infection; recovered from that to go down with another UTI; then another chest infection, and came home with Throat Thrush. All the time she was in hospital (45 miles from home) I was involved in a nine-hour daily visitation programme and she spent the entire time worried about being abandoned there. Dementia is so cruel to make our OHs suffer such worry and insecurity!
    More recently, I was taken into hospital for an emergency procedure, followed by two weeks recuperation, during which she had to endure Respite Care (though it really is a lovely, caring home with devoted staff). She is now home with me, but some evil, stupid person told her she was there because I had "dumped her". For most of today, this thought has been prevalent in her mind!
    We all know (don't we?) that one day, we will have to make that terrible decision and hate ourselves forever afterwards, but I know I really cannot cope for much longer, especially when unhappy thoughts are planted in such a vulnerable mind by some despicable person, making my OH even more difficult to guide and manage through daily routines.
    Has anyone else encountered such a situation? Please help me to know how best to deal with my OH's related insecurities and destruction of trust? I feel so out of my depth. Thank you, in hope and love,
    Lifebuoy44
     
  20. silkiest

    silkiest Registered User

    Feb 9, 2017
    65
    I am so sorry lifebuoy that your wife is distressed. The Admiral nurse told us that when emotional upset is present memories stick more. Unfortunately the situation may not even be directly related to the Pwd - it could have been an overheard conversation or even snippets of ideas from the television. I don't know how much recall she has - would she be able to give you any information at all as to where she got this idea?
    If it isn't possible to understand how it happened it may be easier to change to subject, talk about other things and to be as positive and reassuring as possible.
     

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