Techniques to move "I don't want to go into a home" into a home

Discussion in 'I care for a person with dementia' started by Clemmy, Feb 6, 2016.

  1. Clemmy

    Clemmy Registered User

    Aug 14, 2015

    I am really interested to hear how forum members have successfully moved their loved ones into a home when they always say "I don't want to go in a home," "you are trying/going to put me in a home" and their whole position is deeply paranoid and totally against going in a home.

    I don't know that discussing the topic prior to the move would do any good whatever - I know the net result would be trauma for the person with dementia. I know the ideal method is to have input from the person who is going to be living in the home, to give them choice, and to have some little visits to the home that gradually expand to a trial. I think if we sat down and talked to my relative in advance of a move their behaviour would get very challenging and we wouldn't even get them in a vehicle to go to the home when the appointed day came. The relative has been brilliantly looked after at home 1:1 for the last 15 months and is where she prefers to be.

    The person is deeply suspicious and I know that moving her will make her potentially impossible for a while, and more difficult - but we don't have a choice going forward....

    Thanks for the help.
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    I'm sorry I don't quite understand, she is currently being really well looked after and working in her own home but now she is moving to a home?
    If she has capacity (and from your post it sounds as though she does), you can't do that - if she has capacity at the moment she says she doesn't want to move then you cannot move her into a home against her wishes because it goes against human rights. A home wouldn't accept her and social services would not allow it. In fact they wouldn't even allow it for respite (they told me so not very long ago in no uncertain terms).

    In my opinion (and I am aware that some others disagree) you can't pick someone up from one place one morning and change their whole lives particularly if she has had carers she is very fond of. I think it is very difficult but I suppose if she does not have capacity then it would be more acceptable on the grounds that it would avoid her being distressed. But that isn't what I understand your post to say - you are not talking about causing her less distress you are worried that you won't get her to go because she understands exactly what is happening and she doesn't want to go that route. That isn't ok in my opinion. From what you say she has understanding and her 'paranoia' is completely justified and not paranoia at all because that is exactly what people are planning behind her back.

    I apologise if I have mis read or misunderstood your post
  3. Lawson58

    Lawson58 Registered User

    Perhaps you need to explain why your relative has to move into a home, especially as you say that their care has been brilliant over the last 15 months.
  4. Clemmy

    Clemmy Registered User

    Aug 14, 2015
    She has to move...

    Live in 24/7 care is costly. The care is self funded. She will run out of money to pay to keep her in her own home - she will be unable to pay her care bills so we will 'have' to move her. She has no children of her own. Our ethos has been to care for our older family members in their own homes for as long as possible. The state will insist she sells her asset - her home where she lives - in order to fund her future care and in order to raise the funds we will have to sell her home. Chicken and the Egg. I am currently waiting the report back from our SOLLA Adviser on things like equity release and annuities. Equity release will probably not raise enough money to cover her forthcoming and increasing needs at home and then into care. My relative may express her wishes - loud and clear - and we hear her - but she doesn't have the insight to understand what care she needs right now. Those care needs are increasing and at some point soon will exceed the ability of one live in career to sustain the times they are up at night - and night care is prohibitively expensive. She already airily waves her hand at us and her carers and says "Why do I need so many people?" She isn't safe to be left on her own - she herself proved that 15 months ago after one visit from the paramedics and then later hospitalisation after she had locked herself out of her home. When she locked herself out of her house and was hospitalised, her GP and the Hospital dementia staff were very much you all (family) need to put her in a home or get her suitable care at home - and I agreed whole heartedly with their professional opinion. The EMI nursing home I visited a week ago were very much of the opinion that:
    a) no-one would dispute that she had lost capacity
    b) she didn't have suitable insight into her own needs to make rational decisions about her care needs
    c) she was probably further down the dementia pathway than we suspect - in her own home she will appear more capable than in a care home/out of her familiar surroundings.
    d) I spoke to someone on the Alzheimers Society helpline and they told me if I could find a way to fund keeping my relative in their own home without selling their property to raise the funds I would potentially be a very rich person as at present there isn't a method of doing so and a lot of people would be keen to know how I had done that. Equity release is unlikely to release enough cash for my aunt's long term care needs.

    Her present carer is having to leave the country and there will be a new live in carer - only 2 live in carers in the last 15 months have been able to manage my aunt successfully and they are particularly experienced with dementia. Like most families if we could afford to keep our relative in her own home indefinitely we would - but that might not be suitable long-term for her care needs anyway - also no-one has won the Lottery to fund the long term care so selling her home is the probable only option.

    She isn't always that fond of her carers as she has hit them - and that's the disease not the quality of the care she is receiving causing that reaction. My relative can be difficult and challenging, I love her very much, but that is where she is with the diseases she has.

    I am not being harsh, believe me, just trying to prepare for what is financially unavoidable. Working ahead and planning is essential.

    We have supported my relative in being independent in her own home since her diagnosis. We have put in place support as she has needed it - be that increasing daily home care and a regular carer to take her shopping, then help with household chores, through to live in care. Right now it takes the following 5 people to keep my aunt in her home:
    1 live in carer
    1 person who comes in to give above carer 14 hours respite a week plus running chores such as picking up the medicines and taking my aunt/carer shopping
    1 cleaner (every 2 weeks)
    1 Power of Attorney (family member) to deal with health and welfare/hospital/doc visits
    1 Power of Attorney (family member) who deals with all the financial and property affairs - that's everything from paying the care bills, to getting shopping delivered when they can't get out if my aunt is unwell, to picking up suitable picture books/reminiscence stuff from the library and suitable DVD, to getting a new toilet seat fitted or the annual boiler service done, paying the gardener.
    I effectively run 2 households - my own and my aunt's.

    My aunt has probably 'always' said she doesn't want to go in a home - it might be unavoidable.

  5. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    Hello, Clemmy. I am sorry to hear about the challenging situation with your relative.

    I can't speak to the funding aspect, as I don't live in the UK and don't understand that part of your system very well (I'm not alone in that, it seems), but I hope you are able to work that out.

    I'm responding to your post because I have, in fact, moved someone who didn't want to go, into a care home.

    My situation was made clearer, if not easier, by the fact that this was a move from hospital to care home, with no return to home in between.

    Briefly: my mother is 73. A year ago she was taken to hospital after a crisis (found outdoors wandering, no coat, disoriented, injured, and hallucinating). She was sectioned and spent 2 weeks in hospital. She was assessed, diagnosed with dementia, and I was told she could not live alone, could not live at home, required a residential care setting, medication management, and 24/7 supervision. We found a suitable facility close to where I live and drove her the 100 miles from the hospital where she was sectioned, to the care home.

    My mother has Alzheimer's, somewhere in the moderate stage, and no short-term memory, as well as some other medical issues. She was living alone with no support or services, other than myself (I was an hour and a half away but made regular visits for doctor's appointments). I had no idea she had dementia.

    She clearly lacks capacity for most things most of the time. She was not able to pay her bills, shop, clean, cook for herself, eat properly, wash herself or her clothing, take her medicine, or generally look after herself. She was anxious and upset all the time and barely slept.

    She is intelligent, educated, and very verbal, and is good at "covering." Even now, on a good day, you might have a short conversation and not guess she has Alzheimer's. She had been an in-home caregiver for her mother with Alzheimer's. My mother would never have tolerated the idea of living in a facility of any kind.

    We did not ask her, we did not discuss it, we did not tell her where she was going, we just took her there. She was angry and upset but we, and the staff, stuck to our story that "the doctor says you need to stay for a while, until they sort out your medicines." She had no memory of getting hurt, or being in hospital. She has no insight into her condition (Google anosognosia; it's not the same as denial although it sounds like it). If she had any memory of being in hospital, we were going to tell her it was like respite care or rehab, but with no memory of her hospitalization this made no sense to her. If asked, she will say there is nothing wrong with her, she doesn't need the nursing help or someone to give her medicines, thank goodness she isn't like all those demented old people who can't remember anything, and do I know she's at least 25 years younger than everyone else there and the only one not in a wheelchair??? (not accurate, as you might suspect!)

    It was rough going at first but she settled in better than we expected, within a couple of months. A year later, and she is content and much better off than she was at home, and frankly better than I could ever have expected. She is a social person and she had isolated herself at home the past several years, and the social contact and activities are very good for her, as is the reassurance of always having someone available. She wouldn't admit it to me, but she enjoys the activities, the outings, having company at meals, and the companionship of others.

    So I just wanted to tell you that it is possible to make the move to a care home, and it could work out. It did for me.

    I hope that helps in some way. Please don't hesitate to ask questions if you wish. Best wishes to you.
  6. Plymum

    Plymum Registered User

    Jan 9, 2014
    I may have misunderstood something ... forgive me if I have. If your Aunt's money is about to run out will the LA not partially fund carers for her at home? Have you involved the social services and her GP? Where I live the SS try to keep elderly people at home for as long as possible as it's cheaper than them being in a care home.

  7. Plymum

    Plymum Registered User

    Jan 9, 2014
    PS is she receiving the higher level of Attendance Allowance?

  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    We didn't discuss it in advance with my mother either - there was no point since according to her there was nothing wrong with her and she would never have agreed to go. But she was very bad by then, no longer able even to make herself a cup of tea, zero short term memory, and no longer safe to be left alone at all. A bad fall - her first, since she had never been a 'faller' had brought things to a head. As so often, we had put the decision off for a long time in the hope that it would never be necessary,

    The move was planned like a military operation - my sister and I took her 'out for lunch' to the care home very near me, which was a 60 mile drive, and we were petrified the whole way that she'd catch on and demand to go home. By then she had for some years been extremely reluctant to leave the house at all, so merely getting her out of the front door could have been a problem in itself, but her GP, who understood the situation and her urgent need for 24/7 care, prescribed Valium to make her more relaxed on the day.

    We had been asked to arrive for lunchtime. It was a measure of how bad she was then that although you'd have thought that it was blindingly obvious that it was a care home - although the sign is very discreet - she did not realise - she did think it was a restaurant.

    I can't pretend any of it was easy, and I can't pretend she was happy when she realised she was staying, but by then we simply could not see any alternative. The CH - a specialist dementia - was very good and she did settle eventually. I can't say she was ever really happy there, but then she hadn't been happy at home, either, so often anxious or frightened about things she could not even name. She had always tended to be a 'glass half empty' person and by that stage I honestly don't think she'd have been properly happy anywhere.

    Might add that we were all absolutely dreading the day, and felt awful leaving her there, but at the same time there was colossal relief that she was safe, and not going to be trapped in a burning house, which had been a serious worry for various reasons.

    Not sure this has been much help, but that's how we managed it.
  9. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    I imagine there are very few of us who would actively choose to move into a care home if there was any way we could stay at home. Unfortunately (for the individual concerned), needs must trump wants, and as in the rest of our lives, our financial position often dictates what happens next.

    Consider this...if your aunt had a 'thing' about going into hospital, but it was clear that she needed to be admitted, would there be the same moral dilemma? I don't think so.

    Many people are scared at the idea of moving into a care home, often because they've heard bad things in the press. But the reality is that those with dementia usually settle fairly well given time, once they start to forget about their old life at home. For both my mum and MIL, the move in to a suitably-chosen home was a positive experience.
  10. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    Sorry to hear about your tricky situation Clemmy...and can complete relate having been their myself with my parents last year.

    I think the terminology and connotations of it don't help. My parents flatly refused to consider a 'home' but when asked about 'Assisted Living' had a different view. And that is where they have gone to. Essentially a CH that badges itself as Assisted Living. It's the same thing. But the word associations are very different for them. 'Somewhere we can get a bit of help' vs a CH makes them feel more independent somehow. If they ever ask me if they are in a CH I say no it's assisted living and they are quite content again.

    Just a thought anyway....
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    I agree that it is worth trying this as an option. I obviously misunderstood - the first post sounded as though she had capacity and was not able to make a choice
  12. Bod

    Bod Registered User

    Aug 30, 2013
    Having been down the same path as Witzend.
    Say nothing, just do the planning, get everything in place.
    The Care Home will have to assess her for suitability, which is when the cat may stick its head out of the bag! But it was just a visit by someone who is going to help look after her. (Stick to the truth, but just not all of it!)
    On the day, just take her, by fair means or fowl, let other pack her bags whilst she is in transit.
    The staff at the home will have dealt with this situation many times before, just let them get on.
    When the staff say "go" go don't hang around.
    It may be a fortnight, before visits are recommended, phone the staff for progress reports, expect a tough first visit.
    Remember you are doing this for the right reasons, although they'll never see that.

    Been there, got the tee shirt.
  13. fizzie

    fizzie Registered User

    Jul 20, 2011
    #13 fizzie, Feb 7, 2016
    Last edited: Feb 7, 2016
  14. Katrine

    Katrine Registered User

    Jan 20, 2011
    Fizzie, you are assuming that the PWD has the same sense of time that you do. For many people, there is little difference between an hour and a week. Every time a family member visits they are a potential trigger for the PWD to detach from their tenuous attachment to their new environment and fixate on 'going home'.

    Since most PWD newly arrived in a CH will have poor short term memory, it is natural for them to latch on to their long term memories of what home and security means. They focus this through familiar people.

    Gradually, as they become familiar with CH staff and routines, the PWD may come to associate the CH environment with home and security. However, when close friends and family visit, that emotional tug to the past is triggered and the PWD can become distressed.

    Some people settle quickly in residential care, others like my MIL take several months, while some others never fully settle. There is no one size fits all solution to visiting in these early days. The family has to develop trust with the caregivers, and be available to come in if the staff feel that the PWD will benefit from this.
  15. fizzie

    fizzie Registered User

    Jul 20, 2011
    #15 fizzie, Feb 7, 2016
    Last edited: Feb 7, 2016
    I visit care homes regularly , different care homes and different people and see the people so called settling in - many of them are distressed anyway and likely to be distressed anyway - but most of us would be if we had been moved from our familiar environment
  16. Hair Twiddler

    Hair Twiddler Registered User

    Aug 14, 2012
    Middle England
    Oh dear, Fizzie you're going to be very angry with me.
    I had mum bokked into a care home for 2 weeks of respite whilst I went on holiday - actually it was 2 weeks 2 days, a day before we went abroad and a day after. Hubby me & our 2 children went abroad and I didn't visit for those 2 weeks 2 days. It kept me sane and I felt a huge relief not to have the full responsibility of looking after mum. Like I say - you will think me very cruel. Does everyone think me cruel?
  17. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #17 Shedrech, Feb 7, 2016
    Last edited: Feb 7, 2016
    Hi Hair Twiddler
    everyone's circumstances are specific to them - you did what was right for you and yours - there's no way you can be in 2 places at one time
    so, no - you're not cruel
    you made sure your mum was cared for - you needed a break
    no-one is judging
  18. fizzie

    fizzie Registered User

    Jul 20, 2011
    Sorry i wasn't talking about respite, respite is so different isn't it - its a short break for a short time to allow those of us who care to give a good quality of care because we are refreshed, that's the only way to be able to do that. You wouldn't be able to recharge if you were visiting the whole time xxxx
    I was talking about people uprooting and having their whole lives changed forever and noone that they love and trust to help them through that transition. I think they are two completely different things for many reasons not least one is permanent and one is temporary (and often saves us from a nervous breakdown !!)
  19. fizzie

    fizzie Registered User

    Jul 20, 2011
    #19 fizzie, Feb 7, 2016
    Last edited: Feb 7, 2016
    Shedrech is right - everyone is different. I get cross with the care homes because they do this to people who are going through permanent moves because it is easier for them and of course people take their advice because they are exhausted, and already highly stressed and think that the care homes know best - which we all know is not necessarily true. I've seen some situations where people have been married for over 50 years and they tell the husband not to visit for 2 weeks - it has devastated both the husband and the wife - unnecessary pain - when a permanent move is made, a change in lifestyle (often a life in the same house, with the same neighbours, the same member of the family) then people need to be very cautious and aware that putting a familiar bookcase into a room or a photo on the wall does not do the trick, what helps through this painful and unnerving journey is the people who are loved, trusted and relied on to provide stability, real flesh and blood, familiar voices, someone who knows when they are in pain emotional or physical, that's what makes the difference to the transition.

    None of this applies to respite which I believe most of us recognise as an essential part of the caring pathway.
  20. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    For the first few days after my mother went into her care home I visited every day. One of the reasons we had chosen it was because it was only a short drive from my house.

    I wish I could say those visits brought my mother any sense of care or comfort - all they did was ignite her fury at us for putting her there - she had absolutely no insight into her condition - and she would angrily accuse me and my siblings of all sorts, mostly of wanting to get our dirty filthy hands on her money. When I wasn't there she was calm and apparently accepting. So were these initial visits good or helpful for her? Yes, it would have been infinitely better if I could have given her reassuring hugs, and we could have had a reassuring chat over a cup of tea and a cake, but at that stage it was never going to happen. Given her reaction every time, after those first few days I cut visits down to once a week.

    I don't think you can ever generalise about what's best, and I must say I think it's unhelpful and judgemental to brand what people may decide to do in extremely difficult and upsetting circumstances, as cruel.

    Might add that I was not at all new to either dementia or care homes at the time - we had already been through several years of it all with FIL.

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