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  1. #1
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    Unhappy Mum is demanding to come out of her nursing home - help!

    I wonder if anyone can help with this. My mum's got mixed dementia and was admitted to a nursing home in April for respite care. She was then assessed and because of keeping her safe I and my brothers were pleased when she said she wanted to stay at the home. We had gone through a really bad time with her hallucinating while she was at home and in the end I had to call in the doctor and social services. My problem is that she is now on the right drugs and although she is middle stage dementia she is definitely more level in her actions. In the last couple of weeks every time I go and see her she cries and demands that she goes back to normal living in her own home. I'm getting really upset because I can understand how she wants her freedom to live a normal life but I would really worry if she went on her own again. I do worry if she has gone into permanent care too early. I'm starting to get really depressed with all this - it's a constant worry. Any suggestions please
     

  2. #2
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    Hiya Summer,

    You can find that this often happens with people who are in care homes but when you start probing the whole issue you find that things are not quite as they seem. For example, people talk about wanting to go home, but you often find that the home they talk of is not the home they have just left. Very often the plea to go home is more associated with a plea to go back to a time where everything was "normal" and they felt safe and secure. Around this time you find them starting to talk about their parents and siblings and old neighbours and friends. The home they speak of is often their childhood home but they are not seeking it physically, they're seeking the comfort that they felt that home gave them, if that makes sense.

    The next area that I would ask myself about is whether your mum has improved because she is in a care home where her needs are being met. Lots of us find that there is an almost immediate improvement on entering a home, if nothing else, because they are clean and neat and tidy and they look better because they are eating healthy food on a regular basis. Have you spoken to the home about your mum? Do they think that she needs to be in a home? Do they think she has the skills to live on her own again?

    Given that care home places are at a premium these days then you don't often find that people come back out of a home and return to their previous way of living as it takes such a lot of deterioration to have happened in the first place before a care home is even contemplated.

    If you mum went into the home voluntarily but the consensus is that she should continue to stay there for her own heath and safety, then you will need to talk to the care home about them applying for a Deprivation of Liberty order (DoLs) and this will give the care home the power to prevent her leaving of her own accord.

    Hope this helps,

    Fiona
     

  3. #3
    Hi Summer....Lots of Mums demand to be home. OK that is a bit of a generalisation, but there is some truth in it. I don't know your Mum's situation, i.e did she live alone, have carers in, manage her food, finances or personal care unaided?
    I've just seen that Fiona has said most of what I was going to say next ( Good Lass), but in all seriousness, do you really, honestly, think Mum could manage at home? If you do, then talk to the Care Home Manager, talk to her GP, the community Psychiatric Team, her Social Worker, then, armed with their input talk long and hard with your family, because this will have an impact on all your lives. Then, and only then consider moving Mum home, bearing in mind that such a move could spark a bad reaction.
    Yes, I know that I am being negative, I've been in your situation to an extent, but I knew that even while I was discussing it, my Mum could not live safely on her own.
    On her good days Mum is sad she is not in her home, she gets cross, but knows the right decision was made, on her bad days she is foul
    Good Luck.
    Maureen.x.

    Yes, I can.......I wish!
    ( apologies to Bob the Builder.)
     

  4. #4
    Hi Summer, I agree with Maureen and Fiona but even more strongly think you should step back and think it through very carefully. If I were you, I would placate my mother and use distraction techniques but I would not agree to having her move out of the nursing home.

    It is true that our loved ones often improve because of the care and companionship they receive. They're not alone (although they may complain bitterly about the "old people" in the home as my mother did), they are getting proper meals and with any luck, are getting bathed regularly (for those who co-operate).

    I suspect you have a guilt monster on your shoulder. This is completely natural but totally unnecessary. Knock that guilt monster off and keep telling yourself that your mother needs to be safe, warm and well-fed.
    Joanne
    Carer and Volunteer Moderator
    When you've seen one person with Alzheimer's, you've seen one person with Alzheimer's
     

  5. #5
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    I can totally relate to this as I am in the same situation myself. There are days when mum seems to be relatively normal but with poor memory, and on those days I wonder whether we put her there prematurely, but interestingly on those days she doesn't complain about being in the Home, it is on the days when she is really confused and aggitated that she insists on going home. I do feel really guilty about putting her in a Home, but I know the only way she could go home is with 24 hour support, and that is just not possible, and certainly the social services would only provide care for 2 - 3 half hours a day and this would not be enough.

    As said above you have to stand back and think how she would cope on her own. I also got some reassurance from the Home Manager that she is in the right place.
    It doesn't help your feelings of guilt but be reassured you are not alone in feeling like this.

    Carastro
     

  6. #6
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    My mum was in a care home from March until August. It was intended to be permanent. She made a fantastic recovery when she was there and demanded to be let go. A CPN was called and a mini mental test carried out. On the basis of this we were told she had capacity and as such she had the right to live in her own flat. She is now back in sheltered housing with a high level of support from carers 7 days per week and alot of safeguards in place. Its not what i'd have chosen but apparently it all comes down to human rights.

    If your mum insists enough and someone in the care home chooses to go with your mum's wishes and she is deemed to have capacity then she would be allowed to leave.

    I was told that capacity fluctuates so much in dementia until the dementia progressess beyond a certain point. This is certainly the case with mum.

    From mum's point of view she was lucky that staff in the home encouraged her and arranged for her to go home. I personally think they were wrong as mum struggles daily. Even her consultant says he believes she has perhaps as little as 12mths in her flat before she will be back in care for good. It seems alot of upheavel to take her from a first class care home, put her in a new flat and then have her back in care in no time at all it seems.

    Isabella
     

  7. #7
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    Its not what i'd have chosen but apparently it all comes down to human rights.
    this is a very delicate matter and practices vary from country to country. All around the world. I just know I would much rather get ill and old in some countries rather than in others. Just as I would much rather be a criminal in some countries rather than others.

    My mother was incredibly fortunate that, again and again, she was taken to hospital and not to a police cell.
     

  8. #8
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    Thanks very much everyone for your advice. It's a big helpxx
     

  9. #9
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    I'm so pleased I read these posts. My mum has been in CH since March this year and she comes to see me daily (she has a tracker) and demands to know what her financial situation is so that she can buy herself a wee flat. She is so level headed and convincing that I am regularly taken in and wonder what on earth I was thinking of agreeing to her going into care. Then she says "and what have you done with all our houses? Do we still have the top floor flat we rented out? I think I'll go and live there." And, well, I didn't do anything with 'all' the non-existent houses and we never rented out a top floor flat in my lifetime but there is no convincing her of this. She thinks I am lying and have some hidden agenda to keep her in care.

    So I have to force myself to remember and relive the past few years when she was living at home and the late night distress calls, the not eating, the barricading herself in and locking the door, the smoking in bed . . . you get the drift. Being in a care home is not what my mum wants but it is what she needs. And sadly she is not in the best position to make rational decisions about what's best for her so I have to do it and remind myself the decision was never taken lightly and it is the right decision for her.
     

  10. #10
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    My story is similar to Isabella's in that although my mother asked to go into residential care, after two weeks she asked to go home, so I asked for an assessment (she has been diagnosed with AD and VD). She scored 13/30 in her test and it was said she has severe cognitive impairment, but as she presents herself well and is plausible, a months trial is to be arranged. Trouble is that she went into care in March and it is now almost November, being 8 months! I am against her going home, as I know she will not cope again, and can't understand the consequences, but it is down to human rights! I am leaving it to social services to arrange her robust care package, over which they are taking their time. I can see such an improvement in her physical condition with communal meals and having someone always there. I feel it will all fail sooner, rather than later, and I would rather she stayed put, where she is not really unhappy, but just has an obsession about going home, which is not unusual!
    It is interesting to read other people's experiences on here.




    Pauline
     

  11. #11
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    My mum (86, been in care just over a year) says this too. She's in an excellent specialist unit, which I know is the best I could have found; I know she couldn't ever cope at home alone again and it would be too much for me to look after her on my own 24/7 (I had struggled as a distance carer for years, as she would never admit she needed outside help, so would accept no regular support from anyone else; we had numerous crisis incidents, the last involving a very lurid delusion and police being called).

    I also know that the "home" she means, as others have said above, is in fact her childhood home, which she hasn't seen for nearly 60 years and where she expects her parents and other dead relatives to be. She has no memory of her real home, 15 minutes away, which I have just put on the market, having spent the whole year clearing. So on all logical grounds I know there's no question of her being able to go home.

    However, the thing that most bothers her is the other residents - and here she has a point. They can indeed be very challenging, as can she to them! I would feel I was going crazy having to spend 24/7 with them myself (even an afternoon is totally draining), so I can't really shrug this off - it is perfectly rational and true. Yet I know I can't do anything about it. Wherever she might be in care, you can't control the mix of other residents and they are all equally in need of care; she doesn't realise that her own behaviour towards them is often just as diffficult as theirs to her.

    I suppose what I'm saying is that we have to be the realists here, because our loved ones cannot; if you know your mum is not safe to manage at home on her own (and presumably she's not, or you would never have come to this point), I'm afraid you have to ignore some of the discomfiting thoughts in favour of the greater good. In an ideal world, I wouldn't want my mum to spend the rest of her days being plagued by "mad" people who upset her; but I know (as she does not) that she is in the same state as them, and the alternative is her going through daily crises which could finally be fatal and me losing my life into the bargain. At least she is safe and physically well where she is. Your case sounds very similar, and even if your mum could theoretically have coped a bit longer in her own home, I'd say it's better to have made the move too early than too late.

    I think the worst thing is that you can never reason with someone with dementia, so they may never see that you have their best interests at heart. What counts with them is the emotion, which was never rational in the first place, and so often defaults to distress. I wish you all the best in getting her settled again.
     

  12. #12
    sometimes perhaps it may be that the person is not in the right place at the right time.......if you can change it then why not???...
    The past is a foreign country: they do things differently there.
     

  13. #13
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    Most days my MIL is asking me not to go and leave her, which is hard enough, but when she tells me that she wants to go home, I cry in the car before I drive home. She hasn't been even able to complete a cognitive test, she would get frustrated for not being able to think of any answer at all, even a wrong one, and gets grumpy so they would just give up trying to keep her attention.

    She may not know her own surname anymore but at times she is able to describe her garden in detail, when I challenge if she knows where her home is Then everything that I have been told by the doctors, that she will never get better, that AD just gets worse, all that goes out of the window for a moment and the guilt sets in, I can't help it. Going over again and again with reasoning with myself, to push those feelings away again, because I know she is in the best place being taken care of, I know I can't watch over her 24/7 and this is the care she needs. I know, but it is hard to accept it just like that, because she went down that hill so fast I still strugle to accept the fact she is not getting better, ever, and then she would plea with me not to leave her alone where she is.
     

 

 

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