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

Can you tell that your mother is cared for? Does it look that she has put on weight? Does she look clean and hair washed and brushed? If your answer to all of the above is yes, then she is in the best place. Quite often my MiL told my FiL that she hates the care home and wanted to be at home, but to us it was a very different story.
It is impossible for he to get care at home, so she shouldn't be at home alone.

Yes to all of the above, she looks so much healthier than she did at home, but she tells me she is so unhappy and she cries when I see her, although the Care ladies have not seen her cry when I am not there. It's so difficult. Thank you for your reply and advice x

She clearly needs the care in the home. And it's horrible that you feel guilty about her being unhappy, but you know she wasn't doing well at home.

Surely, if she has been assessed as needing residential care then you shouldn't/couldn't be taking her home until she has been reassessed and deemed capable. The only other choice would be to have a full-time live-in carer at home, which realistically means you, unless your mum is very wealthy. (And you might find you are told your mother should never be left alone, just like a small child, which would make being her full-time carer very hard indeed).

It sounds to me that your mum is in the best possible place. Of course, she doesn't like being ill and old, but I can't see that she has much choice. There is no need for you to feel gulity.

It does sound like she is where she needs to be. My understanding is that it takes at least a couple of months for them to settle, so if you are happy with the home and she is being well cared for, you need to give it time. I am a member of the Mobilise FB group and this question often pops up. If you join it, you can ask there, its a Facebook group for unpaid carers, so lots of different experiences.

Thank you I will join the group. x

Could the GP assess her mood? Does her mild dementia affect her ability to assess her safety?

Maybe she just wants to be at home to hasten the end. Sounds brutal but that was my relative. Went home- deteriorated quickly but in the end the quality of their life was rubbish- which is what it sounds like for your Mum.

We treat dogs better than the elderly in the UK. End of life needs to be a choice.

Hi, we had this with Dad and to us he'd say he hated it, that it was all doom and gloom and the dementia played a part in this. However, we saw the pictures of him attending activities with others, he talked to others when passing and engaged with them and even smiled at the staff, giving us only a frown! The staff were wonderful, everything was there and it was where he was the safest. There is no way that he would have been safe at home any longer and the need for constant care had to be there. Believe me we tried home care (awful and incredibly expensive and less than safe imo), supporting when able, in fact every option we could think of other than a home, but it got to the stage that nothing was as healthy or safe as the home and it was the only way we could guarantee the best care for him and that he would be constantly checked, at minimal fear of falling, well fed, responsive medical attention, was to be in the home and it was lovely, as we checked and spent a great deal of time there with him to see for ourselves. What your Mum wants and needs are two very different things now and we had to look at what was right for Dad's wellbeing and safety and it was the home. Not something done lightly and he managed at home till 84, but the last fall nearly killed him, alongside the confusion, so decision made for all of us. You have to do what is right, the relationship changed for us from child to becoming the parent and taking the decision for him. You have a life to lead, believe me, the home is the right thing for her. Sending hugs for what is always a tough place to be.

Can you take her out at all? A walk in the park in a wheelchair or such like. Something for her to look forward to when you visit and get her out of the environment for a while. Sounds like she is well looked after, be breezy and cheerful, say how well she looks and how worried you were when she was home alone, whatever seems appropriate you know her, try and break her out of the bad thoughts.

The problem is, you will never know my mums mood, as she is sad with me but fine it seems with everyone else. We had a phychiatrist visit her and she was completely different with him and he had no concerns. Maybe Ill ask the home if the GP can come in and do an assessment. Thank you.

I really feel for you OP. You have done exactly the right the thing for your mother and it sounds like she is really well looked after in the home. I gave in to my late DM’s request to stay in her own home. It ended very badly. She eventually had to go into a care home and died 3 weeks later. As you have pointed out carers and relatives visiting cannot provide the level of care needed when a person has such high care needs. My sister virtually had a nervous breakdown trying to care for my late DM. She also had me run ragged and professional carers going in. You have two choices really. Tell her honestly that she can never manage at home again. Or lie and say her going home is in the process of getting sorted out and just repeat this every time you visit. She is venting her frustration and emotions to you because you are her daughter. My DM used to do the same.

I'd say if she is thriving physically in the care home then that's the best place for her. You can't provide the same level of care yourself, you are one person, and it will take a massive toll on you plus she could fall etc.
but as others have said a trip out with her when you can and regular visits would be good. That way she will get the best of you and you can spend quality time together rather than feeling frazzled and guilty and resentful.

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Oh my goodness, everything you say is exactly how it is with my mum. Thank you so much for your response and kindness. x

It sounds like a good care home, doing their job well

but who among us would want to end our lives there? Mourning the loss of independence and happier times. There is no easy answer to old age and you as the kid can’t fix this. It’s just sad. Sounds like you have done the best by her and are very caring.

My grandad has dementia and has been in a home for a year. Cries to us every time we visit telling us its like a prison and he wants home, goes on to tell us the staff are lovely and the food is nice. The careers have said he's in the stage of dementia where he acts like a child and puts on an act as soon as we get there, crying to us and telling us nobody talks to him, the care home reassured us he talks to most the residents and gets involved with activities. The care home post pictures on their social media of activities they are doing and quite often my grandad is involved and has a smile on his face.

OP I think it's really helpful sometimes to think of an elderly person with dementia as being like a small child again. You know how little kids can cry about stuff like having to put their shoes on, and can say things like 'I hate being in the kitchen'. And it doesn't really mean anything very deep, it's passing moods according to things that happen that really aren't very serious. If she's well cared for and the staff are kind and loving she'll probably settle in and these episodes will become less frequent. Give it a bit of time and don't panic; you've done the right thing making sure she's safe and looked after.

Objectively, from what you have said, she is happier in the care home. She is not scared. She does not have sores. She is not alone.
it is extremely difficult and distressing that she complains to you, but what she wants is her old life before she was injured and before she had dementia. It’s very sad but no one can give this to her.

Is she able to get out on an outing? If she was in such a social job for so long she must really be struggling with the change - the suddenness of it as well. We arrange with support to take our great aunt out most weekends for tea/garden centre/ the odd matinee etc. She likes doing non care home activities but by degree is beginning to engage more.

I think being around people who are further along into dementia must be hard. Especially if your mum on some level believes she is capable of being at home.
You have done all the things caring families do, had an assessment, trusted the professionals etc.

I do feel your pain. Is she just putting this on for you? what was your relationship like earlier?

Stepping back - it's as if society values physical health and longevity over happiness and good mental health. "Best interests" decisions focus on keeping people safe and alive. What's her quality of life in the care home? Does she still have the capacity to understand the risks to her physical health if she goes back to 4 carers a day?

This is hard for you but my advice is to take an emotional step back. She can’t go home because she can’t look after herself and daily carer visits isn’t enough. That’s what the social worker will say, so I can’t see any point in chasing that.

It’s hard for her too. She’s lost her home and independence. But, tough, really. No one’s going to let her go home unless she can afford to pay for full-time live-in care. So, she’s stuck with it. You can acknowledge her feelings without arguing or trying to cheer her up or worrying about doing anything at all. It’s all under control.

I’m in a similar position, and frankly, it’s like a burden has been lifted from me. I feel like hugging those care home staff every time I visit, but I restrain myself and just hug my mum.

When she says she wants to go home, what she is probably really feeling is that she wants to go back to the stage when she was able to live at home without support. Sadly the time has passed for your mother to be able to live in her own home, and you cannot turn back time, or make your mother happy by trying to, because the attempt would be doomed to failure. She would not be happy at home either in her current state.

Many dementia patients want to go 'home', and when they are able to answer questions, it turns out that the home they are talking about is their childhood one, or one that they left years earlier.

It’s hard OP. We took our mum to a care home just before Covid lockdown. It was the best thing as managing her care at home was hard, she didn’t want (but needed) full time care.

It was a nice place, good carers who had been there for a long time. She used to try to escape and didn’t like her fellow residents. But her dementia was progressing and she was safest in the care home. She put on weight, was properly medicated and clean. I don’t think we would have avoided bedsores etc in her own home with piecemeal care.

It’s obvious she’s in the right place.
Personally I think you should speak to someone and express your feelings around this, private counseling or clergy.
As for dealing with your mom, if she’s in a bit of denial/early dementia. Just reinforce that although unhappy she’s not strong enough yet. Her fractured bones need more time to heal.
Please don’t take her home and don’t hint to staff that you might. Work on your feelings which although legitimate does not sound like you can provide the level of care she needs, and frankly you know it would be unsafe.

Many dementia patients want to go 'home', and when they are able to answer questions, it turns out that the home they are talking about is their childhood one, or one that they left years earlier

This is it, exactly. People are yearning for what used to be, not for a physical building.

OP your mother is long past the stage where caring for her at home would be remotely possible.

She is absolutely in the right place now - don't even think about taking her home - if you did, she would deteriorate immediately and you'd have to get her back into the home. Can you imagine?

Come and join us on the Cockroach Cafe threads. You'll get advice and support.

https://www.mumsnet.com/talk/elderly_parents/4856638-cockroach-cafe-summer-2023?page=1