When to move a parent into a care facility

[Sarasa]

Take it one step at a time @PRGirl. Don't talk about going into a home, but that mum is going on a little break as work needs to be done on her home. That is true, if the wiring in dangerous it needs to be done. I don't know about the home you've chosen for your mum but my mum was originally going in for a couple of weeks respite because of my brother being in hospital and me going on holiday. Then we decided to actually move her in as a permanent resident, as I could cancel with one month's notice, and I really knew she wouldn't have been safe to have returned home anyway. So if it doesn't work out you will have options.
You are not getting rid of her, and if any of her friends or other relations tell you that pull them up. You will still be caring for her, visiting her, sorting things out, but in an environment that is safer for her and that gives you peace of mind. When I moved mum in I was in a right state about it all, but the care home staff were very supportive of me as well as my mother, and now it feels a bit like another home, I was handing out cups of tea and doing the washing up while mum was dancing with a singer they'd got in for them all yesterday.
It's a different life for your mum, but not a worse one, and in many ways it could turn out to be a much better one, even if your mum claims it isn't.

 

[canary]

Do you know why the relatives are against her moving into a care home? Usually it is either because they dont believe that the person with dementia is that bad, or else they can see their "inheritance" dwindling.
I think a robust reply is the answer. When I was looking at care homes for mum my brother (known on here as an "invisible", because you never saw him) said he didnt want mum to go into a care home, so I simply said that she was too bad for me to look after, but if he could do a better job he was welcome to have her come and live with him. I never heard any more about it

 

[wanderer22]

My mum is currently in hospital, following an unplanned admission when they decided she couldn't come home. Carers 4 times a day, I work office hours, but home in the evening and at night. Not enough though - she was alone between carers.... left the front door open and crossed a busy road to go off to the supermarket for biccies. I woke up at 4am to hear her opening the front door in her pyjamas because 'a man told her to go out'. Would poke the door keys out through the letterbox so people could let themselves in as she couldn't get the key in the lock. If it wasn't for the carers she would still be living off jam on toast! So the hospital are arranging the transfer to a nursing home at the moment.
Then her aunt asks me if I'm doing the right thing! Then next minute says she would only leave mum on her own for an hour, if she was watching tv. Well YES I'M DOING THE RIGHT THING. It's not what I want at all, but it's about getting mum somewhere people can look after her 24/7, and she'll be safe. However, try and tell her that and she has a major hysterical meltdown, swearing and everyone including doctors, and bursts into tears.
But, like everyone else on here, the past year has been hell. Mum has become more frightened of everything. Can't communicate sometimes. Won't even come out with me now. I've broken down at work in tears. Can't sleep properly as I'm listening out for her. At breaking point. No future, no breaks, no hope.
So, the unplanned complete change where the hospital wouldn't let her come home has been a godsend for me, for her, for the whole family. They've previously been in somewhat denial about her condition, but now are thankfully totally supportive. I've always been the strong one, and I've been blubbing with all of them, so now they really understand I can't cope anymore, she's worse than they realised, and she needs more help than I can provide.
I'm worried about her not liking the nursing home at all, but it is for the best all round.
I love my mum very much, crying again now, but I can't do it any more.
Wish I'd found this forum long ago.

 

[canary]

Hello @wanderer22 and welcome to DTP. Im sorry it had to come to a crisis before your mum got the support she needed, but it does seem to be a common theme on these boards. Im sure your mum will settle down (though it may take a while) and whatever happens - do not feel guilty. Dementia will take everything that you have and still want more. Your mum is now safe and cared for.

 

[PRGirl]

I moved Mum today and it was tough to say the least. I am stil thinking it will be a couple of months while I have work done at house but it remains to be seen, She was mostly okay although did keep asking why she had to be there and I just kept explaining.meanwhile she saw the chiropodist and she was escorted for a tour by a handsome young male nurse and her face lit up. I left and her sister will go tomorrow. I am sure she will complain but she might enjoy some of it. I hope so

 

[Pete1]

Hi @PRGirl, that is a really tough day, and so have the past few weeks for you. I hope that your Mum does settle and begins to appreciates the support and people around her. You have had to deal with a lot of resistance which must be so soul destroying when you are only doing it for the one that you love. Stay strong, keep posting. All the best.

 

[White Rose]

Do you know why the relatives are against her moving into a care home? Usually it is either because they dont believe that the person with dementia is that bad, or else they can see their "inheritance" dwindling.
I think a robust reply is the answer. When I was looking at care homes for mum my brother (known on here as an "invisible", because you never saw him) said he didnt want mum to go into a care home, so I simply said that she was too bad for me to look after, but if he could do a better job he was welcome to have her come and live with him. I never heard any more about it

You are spot on there @canary inheritance is so often in the background and I firmly believe that those who aren't involved in the care aren't entitled to an opinion - unless they decide to take over care themselves. I know there's no way my partner would be able to live alone and if it wasn't for me living with him then he would have to be in a care home too. The PWDs safety is paramount.

 

[copsham2]

Hi Bunpootd thank you for responding .i have booked the room today and will move her in two weeks . Strangely she managed to hang onto the story and tell her neighbours . Two have been telling me for ages it is time but one started crying and saying if only your brother was here you could share the load but I think it has gone beyond that, To look at Mum you could think she was okayish until you tried to have any kind of conversation . She had told two separate people she didn’t see me at Christmas and had friends over or went to her sisters / not the case I picked her up and she had forgotten and was having a bowl of microwaved coleslaw. Lunch was eaten and she became anxious about getting home and not wanting to be a bother and in the end I took her home. Her reality is so different from the facts and on this basis I think she is too vulnerable to live alone with 3 hours of care a day. I could get more care but she is still alone at night in a house with stairs. The live in thing just didn’t work for her or the carer. I can’t live with her as I run a business and I would go mad myself Still feel bad though as she loves her house

Hope you are okay? How are your plans going? It is a hard time. I remember being more upset than my mother on the day she went in! She was a bit oblivious and I was feeling so guilty. Best wishes.

 

[PRGirl]

Apologies for radio silence. Mum has now been in residential care for 2.5 weeks. It is tough going. She is still on the floor with the folk with very bad dementia who sleep most of the time but she is strangely oblivious to this. She has had more visitors than she has at home but feels lonely but takes part in the various activities on the floor with the folk who have medium requirements or just have health issues. When I visit I take her up there and try to engage with some of the other residents . What it has made me realise is how Mum has deteriorated. She seems unable to engage with others and most of her comments are negative. When I visit or indeed some others she says have you come to get me and today started to cry but stopped as quickly. She confuses me with her mother and her sister and has little chat unless it is to repeat a negative story about an apparent resident who said we don’t want people like you here. I have no idea if this is true. Her friends visited her yesterday and again she was negative about them talking about a book that had been borrowed and not returned. I took her to the memory clinic this week and she was more muddled than ever talking about how she makes her own food but doesn’t like cooking etc I notice it more because at her house chat was difficult so I would just busy myself with coming and washing but now it is just conversation it is so apparent how bad she is. The family rift continues with one sister not speaking. She visits but took Mum out in the garden on her first visit and Mum fell and had quite a bruise on her hand. The home called me but nothing from my aunt which I found amazing.

I wonder if visits make Mum worse - of course I will continue as will my other aunt and my son but I do wonder a bit if it is counter productive and causes more distress.

Also amazingly I thought her diagnosis was 2018 or 2017 when it was 2015 which shocked me and she was very confused then.

 

[PRGirl]

Just thought I would post an update. Mum has settled well but does seem increasingly confused. Sadly they won’t move her to the floor with the folk with less needs as personal hygiene and wandering are an issue. We had a review last week which took 3 hours and I was very impressed with the attention to detail. However it transpired that she may not be able to stay there because of the personal hygiene issue. They mentioned she may have to move to a nursing home which seems ridiculous to me as she is not I’ll as such. So we now are just waiting which is stressful so not sure if I should look for another organisation as I would have thought personal hygiene issues went with the dementia territory? Has anyone else had this problem?

 

[canary]

Yes, @PRGirl , Im afraid it is quite common that places advertise themselves as accepting (or even specialising in) dementia, but once the person with dementia reaches a point where they are wandering, going into other peoples rooms, developing incontinence, resistance to personal care etc, then they are asked to move, even though all of these things are, indeed, common behaviours in dementia.

What you need to look at is EMI or Dedicated Dementia units. There are places out there that will accept people at all stages of dementia (my mum was in one that looked after her until she passed away), but you will have to look and ask very pertinent questions about what they will and will not accept and how they would deal with your mum - woolley answers probably indicate that they dont have much experience.

 

[Pete1]

she may not be able to stay there because of the personal hygiene issue.

Hi @PRGirl, you seem to allude that it isn't yet decided? I'm assuming the issue is refusal of personal hygiene care? I wondered if they have tried different approaches? You would certainly expect that before taking the decision to move someone. Incontinence is pretty much common place with PWD so I'm guessing it's not that 'simple' (I'm not down playing that in any way as it is extremely challenging to deal with but fairly 'normal').

 

[Sirena]

There is no way your mother needs a 'nursing home' for personal hygiene issues - that comes under social care and would be dealt with by any good dementia care home. If this CH feel they cannot cope with it, you should have no problem finding one which can.

Is the issue that you mother is aggressive when the carers attempt to help her, or do they not like dealing with continence issues in general? Whichever it is, a dementia care home should be able to deal with it.

As Canary says, some places call themselves dementia care homes but only want 'easy' residents. I looked at one CH where the manager said he had told a resident to leave because he wandered around the corridors 'and upset the others'. Just an example of some supposed dementia units not being prepared to deal with common dementia behaviours.

 

[PRGirl]

Thanks for all the input - does anyone have recommendations. We live in north west london or north londonIts weird now as there is a lockdown because of virus so no entertainment or visits. Generally I am impressed but I think the problem is Mum presents well but actually is more advanced than she appears as her body is upright and strong but difficult for her to express herself and deal with personal care: Some or most of the others are virtually unconscious while Mum keeps up appearances but is not really there as I was visiting but she forgets the moment you are out of sight which causes her distress.

 

[PRGirl]

My Mother has advance Alzheimers and Vascular Dementia and the lockdown seems to be causing additional problems. Mostly because even when we visited Mum couldn't remember if you had visited presumably the moment you had gone but recently with the lockdown she does appear to be getting quite distressed and doesn't understand why we cannot visit, although as I say if we did she would forget 5 minutes later. She literally doesn't recall if she has had breakfast or lunch, if she has done an exercise class although reports of her enjoyment are fed through. It's so difficult as emotionally I imagine she is quite unhappy but clearly with the lockdown she is in a much safer place - fortunately there are no incidents of Corona at her care home and she has the same staff all the time so is never alone. If she was at home she would have a range of carers coming in but she would not be able to understand the lockdown or the fact that her neighbours would not be able to visit etc. Also I feel the carers at the home are so mindful of their own personal safety it is better than carers going in for an hour at a time who have been visiting lots of other households. Just makes you feel really bad and powerless as her life must be hard and horrible but with her memory problems I don't think it would be good anywhere. At least she is safe.

 

[canary]

her life must be hard and horrible but with her memory problems I don't think it would be good anywhere. At least she is safe.

And this, I think, is the whole crux of the matter
xxx

 

[Sirena]

As you say, the illness means she would not be happy anywhere. But it sounds as if she can still be happy 'in the moment' if she enjoys certain activities.

We need to look at it from the PWD's (person with dementia's) point of view., rather than how we'd feel ourselves in the situation. A PWD needs to live somewhere safe, surrounded by people with familiar faces who can reassure and help them. Your mother has all that, and she may even be reasonably content most of the time, which is the best we can hope for.

 

[Henkerann]

So difficult for you PRGirl but I found the solution presented itself to me. My Mum has been in very assisted living for 5 years now. She didn't want to leave her home but when she told me she had done something silly (went out at 1 am in the morning to get my dad, whom had been deceased for 2 or 3 years, fish and chips, to name but one event) I knew something had to be done. My brother was not supportive but I took my mum and showed her, told her it was a good idea and I would be able to see her more. and then played the emotional card saying that the winter was coming and I really didn't want to drive for an hour in bad weather, what if I had an accident I wouldn't be able to see her at all. Her motherly love kicked in and she said she would move. The guilt through all of this is immense and changes with each new challenge but ultimately it is about your loved ones safety. After all as I have found, if you are not doing all the caring, your time together is more fulfilling.
Best wishes. x

 

[Sarasa]

@PRGirl , my mother was very unhappy in her flat, but when I moved her to a care home she spent the first few months telling me how unhappy she was and how happy she'd been a t home. Things have moved on now and I think she, if not exactly happy, is content most of the time. She is also a lot safer than she would have been in her own home, even if the home has cases of Covid-19.

 

[Helly68]

Want to agree with many posters above. Mummy (mixed dementia) still had quite a lot of physical ability when she moved into a care home, but being her carer was slowly killing my Dad and when Mummy started to wander, it was time for a care home.
The decision is never easy, more "least worst" than best option. Sadly dementia removes so many other options. I agreed that neighbours with opinons should know better. We had one of them. If you are not supporting the PWD or carers, you really cannot understand. Made me so angry.
Mummy is now in the late stages of dementia. She relies on 24/7 care of the type we could never have provided. Whilst she went to a CH fairly early, this allowed her to make friends and form strong bonds with the staff. It wasn't easy at first, but she settled in well.
As dementia progresses, sadly the problems intensify. You may be better making the move now than waiting for a crisis. When you first take her, try to be as positive as you can. Put any cases etc in her room out of her view. Wait until she is engaged in an activity or meal, leave. Do not say goodbye. Sounds harsh but anything else just winds everyone up. Let her have some time to settle in before visiting. My first visit to Mummy, she was so engaged in gardening with other residents she didn;t even realise I was there. I, on the other hand, was an emotional wreck.....