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

RedLou

Registered User
Jul 30, 2014
1,162
Witzend - I second your post - my father was moved to a hospital against his will (he lived abroad) and even though it was not me who placed him there, he was sometimes unpleasant and always demanding when I visited. The nursing staff told me he was quite tranquil when I wasn't there and they felt he was trying to 'guilt-trip' me. So there was an element of uncertainty as to whether my visits were actually bringing him any real comfort or more positive emotions at all!
 

fizzie

Registered User
Jul 20, 2011
2,727
I knew i would get some stick for the post but I stand by what I say. I also accept that people are different and their relationships are different and some people have relationships that will never be mended.
i think people need to think about what they are doing and why they are doing it and the advice of leaving it a fortnight (which incidentally no matter what you think of my post Witzend you did not do and whilst you cut down your visits to once a week you were there in the initial days - you didn't just dump and run which is what some care homes advise and my bet is that other members of your family also visited - so it doesn't reflect at all the 2 weeks without seeing anyone familiar!!!) is not good advice in my opinion. Of course your MiL was cross, I'd be furious if someone put me somewhere I didn't want to be - wouldn't you? Just because someone doesn't have insight doesn't mean that they don't have feelings either. That doesn't mean that i would want to be left in the hands of strangers. Your circumstances are not what I was talking about at all.



I'm not going to answer any more. I apologise if I have offended people but I don't take back what I have said - it comes from a very long experience of working with people , many people, with memory loss as well as caring for members of my own family. I only hope that even if it makes you cross you will at least think about and all i can hope for is that some people won't take the advice of leaving them alone for weeks that they will continue to visit and take some of the flack in the hope that it will in the long run help the person adjust and deal with those feelings of anguish - I guess that is what discussion forums are for.
 
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Clo_24

Registered User
Feb 7, 2016
1
Care Home

Hi,

This was one of the most difficult things my mum and I had to deal with when we were advised that my nana should be in a home. My nana always said 'don't you dare put me in a home', which made us feel so guilty for even thinking about it. We had care workers visiting 3 times a day, however my mum and I would often have to visit in between those times also.

We had the option though to put nana into restbite for a few days to give us a break. At first we found this difficult and again guilty to leave her in another strange environment. Although we would beat ourselves up about it, nana infact had a great time. We used to tell her she was going on holiday and she did think that she was in a hotel. It was more the company she benefited from and her mood improved. We still insisted that she wouldn't be put in permanently though.

During a time of great struggle and stress, things did get difficult for myself and my mum. Nana was put into emergency restbite, however as her time there was coming to an end, nana was assessed and the decision was made that taking her out of that safe 24 hour care environment, she would be a danger to herself. They gave her permanent resistance, therefore the decision was made for us. We felt awful. However I have to admit it was the best thing that could have happened to her. We had been selfish and beat ourselves up with the guilt of putting nana in a home, we let our own feelings get in the way of what truly was the right thing for her. She came on so well, she had company, she done activities and most of all she was happier.

The dreaded 'care home' talks, il admit are the worst. However don't beat yourself up over it, put your loved one first and think of their needs. You may think you are the best person that can look after them, but reality is these places offer 24 hour trained professionals. Your loved ones can speak to people their age/ with the same illness. It not letting go of them. Its horrible to say but it got to the stage I didn't enjoy the times I had to check on nana, I dreaded it. When she was in the care home, I looked forward to seeing her. She was happier, settled and not stressed and that made me happy.
 

Boldredrosie

Registered User
Mar 13, 2012
244
I am fascinated by this thread. My mum is 85, has no insight into her situation (hasn't for years), everybody in the family and people who care for her think she belongs in a home where there will be someone on hand 24 hours a day and she'll have company. I have written reports from two different healthcare professionals to say she does not have capacity to make decisions about her care and yet social services and the memory clinic persist in agreeing with her 'stuck in the groove' claims of she doesn't want to leaver her home. The home she doesn't recognise from one day to the next. And despite the fact that I have said repeatedly that I cannot and willnot look after her. The whole system's a joke.
 

canary

Registered User
Feb 25, 2014
13,418
South coast
Mum went into a CH straight from hospital after a TIA so it was easier to get her there. I took the line that she was convalescing and could go home again once she was better, but it didnt comfort mum at all. Just seeing me would set her on a "I need to go home - have you come to take me home?" loop. The staff suggested that I didnt visit for a week or two to break this loop and, indeed when I went back she was much calmer. If me being there would have helped then I would have visited more often and I find it difficult to see why denying someone something that will help would inconvenience the staff!

Anyhoo, she has settled very well and enjoys company and some activities. Like clo mum is now much calmer and happier and thinks of the CH as her home.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Clemmy, as you can see from the discussion here, it's not an easy decision to make or to implement. Every person with dementia is different and each family/caregiver/PoA has to make the best decision they can, with the information they have, at the time. It's incredibly difficult and often complicated.

Likewise, the decisions about who should visit and how often, once someone is in a care home, are equally challenging. Whether it's multiple visits per day or visiting once a week or visiting once a month or not visiting at all, it just depends on the situation. I hope we're not distressing you, or stressing you, too much.

There have been a lot of threads here about this topic and if you think it might help you to read more about the experiences others here have had, you could do a search. Here are a few to get you started.

http://forum.alzheimers.org.uk/showthread.php?85089-Refusing-to-go-into-a-care-home

http://forum.alzheimers.org.uk/showthread.php?80328-how-to-tell-mum-about-care-home

http://forum.alzheimers.org.uk/show...ed-advise-on-deciding-how-best-to-help-my-mom
 

fizzie

Registered User
Jul 20, 2011
2,727
Mum went into a CH straight from hospital after a TIA so it was easier to get her there. I took the line that she was convalescing and could go home again once she was better, but it didnt comfort mum at all. Just seeing me would set her on a "I need to go home - have you come to take me home?" loop. The staff suggested that I didnt visit for a week or two to break this loop and, indeed when I went back she was much calmer. If me being there would have helped then I would have visited more often and I find it difficult to see why denying someone something that will help would inconvenience the staff!

Anyhoo, she has settled very well and enjoys company and some activities. Like clo mum is now much calmer and happier and thinks of the CH as her home.
Canary once again you are not talking about a leave and run situation, it was a situation which you had been in, tried out and it didn't work so you needed to try something different. That is completely different from moving someone from their home one morning and leaving them in a new place with new faces for two weeks without trying to be there for them during the transition. You tried it, didn't work, tried another way through it which did but the trail started with compassion and care, very different
 

notsogooddtr

Registered User
Jul 2, 2011
941
Why is two weeks respite any different to two weeks in permanent care?I doubt than a PWD can differentiate.People have different opinions about whether care homes are a 'good thing'or not but I think anyone facing the decision could do wirhout the judgemental attitudes which are unfortunately becoming prevalent on here.Fizzie,you said on another thread that you left a 13 year old sleeping overnight with your mother who managed to get out of the house.I would never have considered doing that but have enough respect to assume you had good reason and made a considered judgement.Dementia is never easy and I'm pretty sure most people do what they think is best.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,779
Kent
Moderator`s Note

It`s important to be able to post your views and opinions here on Talking Point, it`s what discussion is about.

However, please acknowledge everyone is entitled to express different points of view without others pursuing their points in too assertive a tone.

TP is about peer support rather than peer instruction or judgement.
 

fizzie

Registered User
Jul 20, 2011
2,727
Why is two weeks respite any different to two weeks in permanent care?I doubt than a PWD can differentiate.People have different opinions about whether care homes are a 'good thing'or not but I think anyone facing the decision could do wirhout the judgemental attitudes which are unfortunately becoming prevalent on here.Fizzie,you said on another thread that you left a 13 year old sleeping overnight with your mother who managed to get out of the house.I would never have considered doing that but have enough respect to assume you had good reason and made a considered judgement.Dementia is never easy and I'm pretty sure most people do what they think is best.
Wow i'm impressed you've been reading my threads, especially as you don't like the majority of them. To clarify our personal situation for your benefit and others who may take your comment out of context, my son often slept over with grandma they had a wonderful relationship right to the end (he unlike many teenagers, spent afternoons, doing jigsaws with her, going out to lunch with her sometimes - all voluntarily and all guided by him - he was 15 when she died), I live 2 minutes away and for 4 years I slept with the phone by my ear and sometimes I slept at my Ma's if she was having a bad patch, and we live in a very close community. What we didn't realise at that time was the impact of having the bathroom door and the backdoor literally right next door to each other - my mother mistook one for the other in the middle of the night. Lesson learned, after that she lived in the same place for another 2.5 years as her memory loss worsened without another similar incident. My mother wasn't a wanderer. Yes we treated my mother like a mother and grandmother right to the end with great respect and dignity just like I would my friends, just like a real person. She wasn't easy, the path was hard, very hard, as it is for everyone. I am always amazed at how angry you are with me notsogood and I am equally amazed at how frequently the word 'judgemental' is used when people don't agree with what others say!
Can I also apply judgemental to you then when you say "I would never have considered doing that"? I don't think I will because that is your opinion and you are quite entitled to it.
 

notsogooddtr

Registered User
Jul 2, 2011
941
As I said you made a considered judgement as do most people who face dementia.You have expressed your opinions about visiting(or not)very eloquently and yes have made a judgement.Everyone comes from this from a different angle,my kids also had great relationships with their grandparents btw and still love their grandad dearly.But they have their own busy lives in different parts of the country and can't be there weekly or even monthly.That's the way it is but it doesn't mean they don't care.As to not liking your threads,that's not really the point.The PWD is the most important person to you and I admire you for that.My point of view is that the carers are equally important,not more or less.
 

Hair Twiddler

Registered User
Aug 14, 2012
892
Middle England
I wish I could speak for my mum. She has Alz and has lots of opinions, many of which are contradictory and even vary from black to white in the space of a-minute-on-Neptune. When she goes into respite I am relieved. When we are all here together we get through - day by day.
If she does, at some point go and live in a CH, I'll visit - i'd like to think that in the beginning she will see me often - but who knows? It might be that the anger is bad - in which case I am fully prepared to admit that I would stay away.
As fizzie said earlier "thats what discussion threads are for" - airing, venting etc etc.
 

theunknown

Registered User
Apr 17, 2015
434
It's a shame if people feel they can't post contradictary opinions on here. There's no way we're all going to agree. As individuals we're unique - that means we'll disagree - it doesn't make any of us bad people.
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,228
England
It is very healthy to have opinions and be able to express them freely which, most of the time on this forum is what happens.

Sadly from time to time when a very emotive subject comes up we don't always remember to take into account other members feelings and remember that we all deserve respect, regardless of what choices we have made or in many cases have had forced on us because of the deteriation or extreme health problems of our cared for.

We are a peer support group, all dealing in our own way with what we have in front of us, nothing is black and white, most of it is decidedly grey and very fuzzy around the edges.
 

Aisling

Registered User
Dec 5, 2015
1,805
Ireland
Hi

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.
Sorry I don't really understand. If your aunt is self funding and has live in care, why can't this continue? She is also happy at home. What does her doctor advise? Why do you think her behaviour would become challenging? She sounds like a person who knows her own mind. Am not being helpful, just posting you a few questions which you may find helpful.

Aisling
 

Beate

Registered User
May 21, 2014
12,022
London
Sorry I don't really understand. If your aunt is self funding and has live in care, why can't this continue? She is also happy at home. What does her doctor advise? Why do you think her behaviour would become challenging? She sounds like a person who knows her own mind. Am not being helpful, just posting you a few questions which you may find helpful.

Aisling
Clemmy has already answered these questions, not that she had to! No one should have to justify why they are asking a particular question and I've been astounded by some of the things that have been said on this thread. No one considers a care home lightly, and the fact that someone doesn't want to go into a home does not mean they always have the capacity to decide what's best for them.

As to the original question, I've heard people suggest talking about it being a holiday hotel, somewhere to stay until their house is renovated or that the doctor suggested it for their wellbeing. Whatever works really.
 
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chrisdee

Registered User
Nov 23, 2014
171
Yorkshire
Hi Clemmy, I'm not sure you have got the sort of answers you have been looking for, apart from a couple of posters.
so despite F.Sinatra posting on here [MY Way] or someone else that uses the 'handbagging' techniques redolent of a deceased PM, here goes: no one I have ever met with Dementia will ever vote for going into a home. They simply do not understand that there is anything much wrong. I understand 24 hour care at home is v.expensive and can understand that you wish to plan ahead having done the sums. Our mental health nurses realised that things were getting desparate, and made us an appt with a psychiatrist, you could also do this privately I guess. This resolved the capacity question once and for all. Mum was unsafe at home and we moved her into a sympathetic, suitable home, with the help of MH nurse and previously prescribed sedative [lorazepan]. The assessment was done in a local cafe. If you are dealing with wandering and aggression, its sometimes the only way.
 
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TooHard

Registered User
Sep 16, 2015
109
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.


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).

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.
My mother would never have tolerated the idea of living in a facility of any kind.
You could be describing my mother almost to a tee. There is little doubt that my mother would be better off in a care home and we are going to have to face this sooner than any of us would like as it would not be possible for any of us to take her in and we all live between 100 and 500 miles away from her. If she understood that she has dementia (at the moment vehemently denying it and has no memory at all of our visit to the dementia specialist who explained it all to her in great detail including analysis of a scan. At the moment she is deemed to have the capacity to say 'no' to any sort of support despite being almost blind, having mobility issues (severe arthritis...five hip replacements....several falls that we know of, who knows how many we don't know about) and the dementia. She can't use the cooker or the microwave and, I think, is no longer able to use the toaster. She barely eats but argues that she does so refuses the very reasonably priced meals on wheels. She has bladder incontinence and, increasingly, can't use the washing machine. She hasn't had a bath or shower in over 2 years and is unable to wash properly and leaves open packets of wipes to dry out.

At some points her lack of capacity to understand her own needs and act on them will force her into a care home...I suspect it will be in similar circumstances: another crisis leading to a hospital stay that she won't remember. I'm appalled that she was let home after the last two and she has no recollection of the period of time I spent looking after after the last stay.

It's a horrible, horrible disease and I dread the future.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Don't want to hijack the OP's topic but responding to TooHard

Sorry for the tangent, OP.

TooHard, I am sorry to hear my post resonated so much with you and that you face such a difficult situation with your mother. My description was actually a bit sanitized; my mother's home was filthy and horrible beyond belief. (It's difficult to imagine that dementia, or any disease, could affect one's brain and perception to the degree that living in dirty, unsafe, and miserable conditions, combined with constant anxiety and distress, could be interpreted as "fine." I really, really hate dementia.)

I have lots of sympathy to offer, and not much useful advice. Just two things:

1) if family is all at a distance from your mother, move her closer to the person with PoA, or the person who will be able to visit most, or just closer to someone. I moved my mother from 100 miles away to 10 miles away and it's been a huge relief, just to have the drive shortened.

2) if you are able, investigate care home options BEFORE you need them. You could even put her on some waiting lists; it's usually not a big deal to refuse a place if it becomes available, but remain on the list. I wish I'd had more time to look at care homes and that I hadn't had to do it in a hurry, stressed, and upset while she was in hospital. (One of my dirty little secrets is that I never saw the care home my mother moved into, until she moved in. I was 100 miles away with her in hospital and my husband is the one who picked out the care home here where we live. I normally don't even admit this on TP because it seems [insert judgemental word here], but it is what we did. All judgement aside, it was not a method I'd recommend.)

You have my sympathy. It is awful to know you have to wait for the crisis. I'm so sorry.
 

notsogooddtr

Registered User
Jul 2, 2011
941
You could be describing my mother almost to a tee. There is little doubt that my mother would be better off in a care home and we are going to have to face this sooner than any of us would like as it would not be possible for any of us to take her in and we all live between 100 and 500 miles away from her. If she understood that she has dementia (at the moment vehemently denying it and has no memory at all of our visit to the dementia specialist who explained it all to her in great detail including analysis of a scan. At the moment she is deemed to have the capacity to say 'no' to any sort of support despite being almost blind, having mobility issues (severe arthritis...five hip replacements....several falls that we know of, who knows how many we don't know about) and the dementia. She can't use the cooker or the microwave and, I think, is no longer able to use the toaster. She barely eats but argues that she does so refuses the very reasonably priced meals on wheels. She has bladder incontinence and, increasingly, can't use the washing machine. She hasn't had a bath or shower in over 2 years and is unable to wash properly and leaves open packets of wipes to dry out.

At some points her lack of capacity to understand her own needs and act on them will force her into a care home...I suspect it will be in similar circumstances: another crisis leading to a hospital stay that she won't remember. I'm appalled that she was let home after the last two and she has no recollection of the period of time I spent looking after after the last stay.

It's a horrible, horrible disease and I dread the future.
The situation sounds dreadful.Who has decided your mum has capacity?I know the reasoning is that an adult has the right to make decisions even if they are bad ones but this sounds as though that theory is being stretched to the limit.I feel for you,you must be out of your mind with worry