My mum hates being in a Care Home, help!

[hobbitone]

Apologies but this is a long one....
Bit of background......my mum worked in a Newagents until she was 85 and tripped over a box at work and fractured her spine. She then fell at home because her legs didn't work properly following her fall at work and broke her hip. Following this she was completely immobile and had 2 carers 4 times a day (she lives alone). She didn't eat properly, she wasn't drinking so was getting urine infections, she had 5 bed sores, was malnourished and dehydrated (the Carers were lovely but could only be there for 30 minutes at each call so her eating and drinking was not encouraged). She also has early stage dementia. When she had a urine infection she used to call me in the night very confused not knowing where she was and wanting to get out of bed, she was also seeing children that were not there and thinking that there were people in her garden. This was very upsetting for me as well as I live 100 mile round trip from mum so it wasn't just a case of popping round, plus I work. She then became very ill and ended up in hospital as her health had deteriorated drastically and her bladder was near to bursting. The hospital raised her care level from 2 to 5, which meant she had to go into residental care. I did my mums shopping, washing, ironing, housework, garden, finances etc. when she was at home and to be honest it made me ill and started to affect my homelife and marriage. My Niece tried to help where she could but she also has a full time job and small children.
Following the spell in hospital, my mum is now in a very nice care home, however she hates it! My mum is a very stubborn lady, every answer is NO, she is very secretive and very private and has a hangup about being old!
My problem is that my mum wants to go back home and I know that if she does her health will deteriorate again and she will end up in hospital and we will be back to square one. The Carers in the home all seem very nice and they tell me that mum is fine when I am not there, although when I visit she tells me that she hates her room (she has a lovely room with a big bay window and en-suite), the Carers are not very nice, the food is horrible and she just sits all day (the same as she did at home!), however she won't make friends or join in any of the activites, however she will chat and joke with the Care staff. She chooses to sit in the darkest, quietest part of the lounge and she refuses to sit in the lovely conservatory where it is light and bright, she says its too hot! She is refusing to read magazines, do puzzles, knitting, I have offered it all. She asks to go back to her room at 4pm every day and she stays there watching TV until the morning. Many of the other residents in the home seem to be further along in the dementia stage than my mum, but I suppose you get all stages of dementia in care homes, I dont know.
When I speak to the Care Home Manager about how mum is, she tells me that mum is fine, eats well, drinks well and has put on weight. She has had her hair cut and her feet looked after and showers every week and goes on the commode. She didn't have any of this at home, she wouldn't even let anyone wash her hair, she also had just bed baths, resulting in 5 bed sores! She just sat and watched TV in her lounge all day and fell asleep and then the carers would take her to her bedroom at 4pm where she would sit in bed all evening and fall asleep.
My dilemma, what do I do.....my heart tells me she shouldnt be in there because she is unhappy (or is she?), but my head tells me that she is so much safer and healthier there and she also has company around her and things going on, even if she doesn't join in. At home she is on her own most of the day and through the night when she used to get scared, which I worried about. I just dont know what to do as I hate seeing her like this and she is adamant she wants to go home.
We have been waiting for a Social Worker to be allocated to us since July and I am getting absolutely nowhere with that.
Has anyone else been in this situation and and advice would be grately appreciated please. Thank you x

It's the best place for her

OP when my DM first went into her care home, she had been unable to cope at home even with private care because she has mild dementia and is frail - both because of Parkinson's.

The difference in her body weight, grooming and general health was marked after three months in the care home. She then began to say she didn't like it and that some staff did X, Y and Z she didn't like, that she couldn't eat the food etc.

So I went to the manager and asked if this was the case and the manager very diplomatically said, basically, that this is very, very common, that residents are fine in the home, but tell relatives they aren't. When I asked why she said, "Well, it's to punish their relatives really, to make them feel guilty."

All the evidence you need is in your DM's very improved health and the report that she's fine when you aren't there. She would not, of course, be fine at home. Don't feel guilty - go to the Cockroach Cafe instead.

What's the Cockroach Cafe???

Apart from that I recognise everything you have said @BinaryDot. At least I don't sit in the evenings worrying that my mother is lying at the bottom of her stairs, has forgotten to lock the back door or has let some crook in. People really aren't safe living alone with dementia. If you can live with them, okay, but even that gets hard if they have physical care needs.

The Cockroach Cafe is a long running series of threads on Elderly Parents, where we support one another.
We advise and sympathise with women (and men) who are struggling with their parents' problems.

It's a brilliant resource. Look under the Elderly Parents list of threads. All are welcome to post.

Oh I see. Thanks.

Cockroach Cafe

Thanks, MereDint.

I'm on my phone and I find it's a faff to link threads.

I quite understand. I find it so much easier on the desk top than on a tablet - littlle things like having the [ symbol available at the same time as the alphabetic keyboard.

My mum has dementia amongst other age related health problems and like your mum was very independent for a long time and is in a care home now and still after a year always asks to go home and yet we know that home is not the best place for her now. It breaks my heart when she so dearly wants to live independently but she just could not care for herself now.

You know in your gut what and where your Mum needs to be and it is tough and heartbreaking. Sending a hug.

That’s interesting. The registered manager at my mum’s care home also used to get it in the neck from my mum. We often used to joke about what it was we had done wrong this week.

Whereas the the deputy manager and a couple of the carers were able to do no wrong in mum’s eyes, and they saw her as a wonderful sunny person. One of them travelled 20 miles each way on her day off to sit with mum the day before she died. I suppose they had been friends, really, for four and a half years (mum was physically disabled with multiple conditions and very frail, but had only mild cognitive impairment).

People are complicated. I’m in no doubt that moving into the home was the right thing for my mum, for yours and for OP’s.

And we can’t sacrifice ourselves and our family life for our elderly parents. I certainly don’t want my son to do that for me when the time comes.

For a long time my Dm with dementia was fixated on going home. She had no idea that she’d been completely unable to cope - couldn’t even make herself a cup of tea any more, plus she simply wasn’t safe to be left at all. There had already been one fire in the kitchen. Was hiding keys, and never knew where they were, because of course she hadn’t hidden them, must be next door neighbours, etc. etc.

Eventually I started the good old ‘love lies’ - she’d always been an inveterate ‘mover’ so ‘I was looking for a nice little flat for her, just down the road from me, so once I found a really nice one we’d go and have a look together.’

It worked really well and since her short term memory was zero, I could rinse and repeat ad lib.
Eventually she did stop asking, but she stopped recognising me, too. I was just a ‘nice lady’ who made her cups of tea and brought her chocolate. Might sound awful, but TBH it was something of a relief.

She is in the only place that is appropriate for her. It may be a bit disconcerting but it sounds like she got in at the right moment given her care levels.

To echo another PP, she might not even mean home as you consider it. It might be her childhood home or the home she had when her child/children were young. Sadly the personality also changes with dementia so the withdrawn demeanour might have been the same at home too.

Dementia is horrible, no two ways about it.

My mum has been in hospital and there was a big hassle about her being returned the care home. Last night she was eventually delivered and installed in her be. Apparently she has not stopped smiling. So happy to be back.

It has been two years since she moved in and now she knows it's home.

We too told several lies. This time last year we told her that the she had to stay put because of the cold winter that was coming and the threat of power cuts. She needed to stay where she was in the warm. Now she just talks about going home to her mum and dad for Christmas.

@hobbitone the key thing here is does your Mum have mental capacity to make this decision for herself? If you’re not sure what this is have a look here https://www.nhs.uk/conditions/social-care-and-support-guide/making-decisions-for-someone-else/mental-capacity-act/

If she does have capacity to make this decision for herself, it’s important to note that people have the right to make unwise decisions.

If she doesn’t, do you or anybody else have power of attorney for health and welfare? If so that person (or people) can legally make decisions in your Mum’s best interest. If not then the team of professionals who are looking after her must make that decision.

Now she just talks about going home to her mum and dad for Christmas.
This is sad @IthinkIsawahairbrushbackthere but sadly resonates here too.

@IthinkIsawahairbrushbackthere how lovely she is happy and smiling. Relief.

She had been refusing food in hospital and got home after tea had been served but the nurse in charge got her a bowl of jelly and ice cream which she demolished very happily! I never thought she would be happy again!

My DM went through a phase of wanting to visit her parents (dead some 30 and 50 years) because ‘they must be getting old and could do with some help.’
The house she remembered hadn’t even existed since the late 1970s.

I used to say I couldn’t take her today (because my car was in for a service/the roads were very icy/any other suitable excuse) but ‘Maybe we could go tomorrow?’
Always kept her happy - or at least as happy as she was ever going to be.
Zero short term memory meant I could ‘recycle’ over and over. ‘Love lies’ can be a godsend!

It's tough but you need to judge the whole situation, her being at home isn't sustainable for you, it's not safe and the care wasn't sufficient. She may settle, hard to say, my relative did after 6 weeks or so, she was more advanced in dementia though.

Looking back granddad was harder, 25 years ago so homes weren't as nice, he kept escaping, but naked! Got to laugh

It's a sad reality of our longer lives, don't feel guilty choosing the best option for her, she hasn't got the ability to make these judgements now. Instead spend time with her, can you take her out for lunch maybe, do nice things? We used to take my in law out in a wheelchair to feed the ducks most Sundays, she loved that

I don't want to sound like I don't care, but why do you have to do anything? Why are you responsible. I'm unsure how her dementia affects her but if she's deemed not to have mental capacity then a social worker will act on her behalf (with clinicians etc). Maybe you can help arrange an appointment with someone do she can talk through her options but ultimately I'd keep my influence to a minimum.
On the face of it, it sounds like this is a good place for her. Would selling her home release funds? Could you employ a befriender? There are charities do this buy if you employ someone yourself it might make hercdays more interesting. Maybe a nursing/college student.

My mother. who has dementia. wanted to go 'home' when she was still living in her own home. She was going back 50+ years to when I was young and we were all living in a different house on the other side of the village. She is now in residential care because she cannot look after herself any more and cannot be left unattended. She is a wanderer and twice escaped through the fence and got picked up by the police more than a mile away.

It's very hard emotionally because you do feel guilty and it's upsetting if they seem unhappy when you visit, but ultimately you have to do what is in their own best interests,

IYes, I think they pine for the life they had as a busy, engaged adult - they don’t want to be old, confused and bored - I’m sure I’ll be the same when my time comes.

@hobbitone hi OP - just wondering how things have turned out for you? Did your Mum settle in and feel a bit happier in the care home?

I'm going through something very similar.

We are now 8 months in and my DM is still asking to leave / go back home / saying how miserable she is. Still not really joining in with activities or socialising much with the other residents. I thought it would have improved a bit by now. I feel so guilty and am constantly weighing up whether she should go home (although I know is she can't really).

Sympathies, I do know how hard it is. TBH mine was much the same (wanting to go home, even when she meant the home she’d left in her early 20s). I’m afraid it only got a bit better when I pretended (over and over) that I was looking for ‘a nice little flat for her, just down the road from me’, and later, when she had stopped recognising me (which happened quite suddenly, from one week to the next) and I was just ‘a nice lady’ who made her cups of tea and brought her chocolate.

IMO, assuming her short term memory is now almost non existent, I’d advise whatever ‘love lies’ you can come up with, that will sound plausible and keep her happy for the moment - given that she’s probably going to forget whatever you say so soon anyway.

And personally, I’d ignore anyone who tries to tell you that fibbing to someone with dementia is always wrong. From experience, such people usually have little or no experience of the daily, practical realities of dementia.

Dementiasuccesspath2239 on YouTube has some good tips for this sort of thing- you’re here while your house gets fixed etc. it’s helped me a lot with MIL.