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

I think given how well she is there you just need to say something like "it's a shame that it's not possible I know, but let's look at what's going well here" etc.
Maybe appeal to her need to protect you say something like: "it's important for me to know that you're safe and protected - and I can't do that for you at home. It makes me so worried for you"
Your physical and mental health matters just as much as hers.

Honestly OP, I could have written your opening post. I’m constantly feeling guilty and sorrowful about Mum being in a home, but she looks so much better than when she was on her own in her flat, she just couldn’t cope and had accident after accident. It’s tough what you’re going through, so be kind to yourself. 💐

Yes, I have been exactly where you are, and it’s hard. Can you take her out for trips? My mum really enjoyed that. And also, she’s allowed to be sad, and you can’t fix that for her. You can only be a listening ear.

And of course it’s easy for me to say that now - it’s different when you’re overwhelmed by guilt.

what is the alternative? she can't live alone, are you thinking of having her live with you?

in a care home there are a team of staff for cooking, cleaning, personal care, activities etc. who work shifts and go home to rest. if she lives with you, then you have to do it all 24/7.

it's definitely in her best interests to be in the home (if it's a decent one, it sounds like it is)

having experienced similar, I am making it really clear to my kids that when the time comes,put me in a home. I don't want them to feel this guilt and conflict. I am sure that she wouldn't want that for you, in her right mind. getting old sucks, doesn't it

did you ever had a small child that you brought in a nursery? Very often they cry when their mum is leaving, but when she is out of sight , the tears dry up and they just have a real nice day.

I have a dad in a care home and he is always complaining about everything. But when he was still at home with carers his situation was 100x times worse. And he doesn’t see this, but i do! He doesn’t seem to remember that part, he only thinks about the good old time when he could still lead an independent life.

Would your mum enjoy a fridge with some snacks of her own? I bring my dad every week some cold beer cans and his favourite fish -salad. And his own marmalade and some other stuff. It makes a difference.

I agree with this. Clean hair and cut nails is not the mark of a quality life. Your mum probably is surrounded by people with more advanced dementia. people have to have severe needs to be in a care home now and people with dementia are not very good company. ( my mum has advanced dementia).

You mum is miserable, she is not making it up. There isn’t much you can do about it. There’s not really a route back home. But please don’t minimize to her the terrible grief and loss she will be experiencing. She deserves to have what she is going through recognized. She’s lost everything really, hasn’t she?

My mother is in a sort of care home place - with a bit of independence, supported living. She was very unsettled at first, she wandered off a couple of times, had all that wanting to go home stuff, she criticised EVERYTHING, even the butter they put on her toast. And there was 'never anything to do', despite them having two activities a day and her life at home consisting of sleeping in to midday every day, and pulling up weeds in the garden.

Ultimately an old person with dementia has to be where they are safe, you cannot run yourself ragged so they can preserve some illusion of independence. My mother is a bit happier now, her surroundings are now familiar and her brain is so foggy that I imagine she has probably forgotten a lot about her old home.

Don't be tempted to move her back to her house, the homecare provided in this country is just not adequate. My mum was starting to lose weight and have nutritional difficulties, at least she is receiving three meals a day now and her meds at the right time.

I’m sorry but this is a terrible analogy. A mature woman is not a child. Nor is she someone going home to her house and family at the end of the day. She’s a mature woman who understands full well what she has lost, her home, her community, her friendships, her health, her job, her independence. She has lost choice and agency over her whole life.

She is not a child, she is an adult. Her situation is NOTHING like that of a child at nursery. And it says a lot, though nothing good, about our appalling attitude to older people that this analogy has been made. It’s massively disrespectful and utterly patronizing.

She isn't happy about getting old - and has the right to be angry and miserable about that no matter how 'comfortable' she is.

Is it aging and loss of independence what she is distressed about rather than actually not being in her own home (where she did less and was less comfortable... and was unsafe)? Wanting to go home is actually wanting to go back in time.

Perhaps she needs to sound off about it all and doing so to you is safe?

At the moment she is sort of passing on her distress to you (and also making you feel guilty). You can't make this right; it isn't your fault and you haven't the power to change the tide!

Perhaps you just need to let her tell you these things and be sympathetic to her. Listen but don't offer suggestions or 'look on the bright side'. Let her get out her pain. Try not to let it pile on you.

IMO you would be extremely unwise to even consider the possibility of your mother going home. She very obviously needs more care than could realistically be provided in her home. All you can do is listen to her complaints politely and change the subject, telling her about your life, an anecdote about pets (if she likes animals), or some item of local news that might interest her, for example.
If your mother were to return home it is likely something would happen that might hasten her demise, eg another fall, dehydration, mistake with medication, her leaving the house and getting lost or injured in an accident. Stay firm, others have determined the level of care she needs for sound reasons.

Today is the best she will never be.
Sadly needs now outweigh wants. And sometimes good enough has to do.

In the first half year my dad was in a care home, when i visited him he was angy, sometimes sad. Often we would talk about how he would walk through his house and garden. There was respect all over the place I guarantee you. Everytime i left i felt upset, i felt like a monster.
But his carers told me that after I had left, he would be very lively, making jokes, not sad at all! I just couldn’t believe it, i thought they were making it up just to make me feel better. But apparently me being with him triggered all these big emotions. And after I left he was ok. It happens more often they told me.

I do think it is the same underlying mechanism as with kids in nursery. It is what Alzheimers does to the emotions. It has nothing to do with disrespect.

I'm an adults social worker and I see this a lot. The families tearing themselves apart with guilt whilst mum is usually having the time of her life.
I'm sad to say that once a person is in residential care they very very rarely go home again. The kind of support they are receiving now just isn't available in the community. Plus it usually isn't in their best interests, to have the huge change that moving entails. I have only had one person who went home on the insistance of the family, who assured me they could cope and would be doing everything themselves and it was a disaster.

She is in the best place possible and you need to think about yourself too!

@cptartapp is right, sadly - dementia is progressive and she will become less capable as time goes on.

It is better that she is in the home now when she has some chance of laying down memories of the layout etc

❤️

How long has your mum been in the care home@hobbitone ?

Hi, about 9 weeks x

If it is any consolation to you, it is very common for NH residents to "play to the gallery". They can make you feel such awful guilt and distress, but when you leave they are fine and get back to their NH routine.

I am a veteran of this, and I literally have scars and bruises to prove it from being hit with mother's walking stick and various objects when visiting because I would not (could not) take her home to her house immediately.

It was very hard to believe that she was a Jekyll and Hyde, but the NH had videos of her happily joining in at sing alongs, birthday parties, etc. and she never mentioned going home to staff. She was very well cared for thankfully.

The Director of nursing was concerned at her physical abuse of me, so for a while all visits took place in communal areas (not in her room) with staff present. At the height of it they advised me not to visit for at least 4 weeks to allow her settle down. That was very hard, but a relief too, and gradually things improved. Her illness brought out severe bursts of anger and frustration, aimed at me, but I used the call bell as advised when visiting in her room, and staff took over and I left. She had sessions with a "successful aging" research group at our teaching hospital which helped a lot too.

All I can say is that if things get difficult, leave immediately, either to go home, or to somewhere nearby. Then if she has calmed down go back. If not stay away for the time being. I had a hard time remembering that the staff are used to dealing with this, they see it every day, and they can cope because they have no familial or emotional ties with the resident. We have, and it's hard to walk away, but sometimes you must.

So sorry for the long post, but I know what it's like. Mum lived on for 18 more years in the same place, and was their longest resident. She was fine and well looked after, I see that now.

I could have written your post myself. My mum moved into a lovely care home two years ago today. Previously she had lived with me and my husband but in a granny annex in our garden. We had two care visits a day to get her up and put her to bed as she has severe arthritis but I had become increasingly aware of her deterioration. Following a fall and a possible stroke she went into hospital and I promptly had a breakdown! Once there it was agreed that she would need 4 care visits a day instead of two - I would still fill in the gaps and provide all food, laundry, cleaning, life admin but no personal care. While waiting for an increased care package it became apparent that she needed 24 hour care - for instance she was unable to transfer from the bed to a commode or chair and back again.

She begged and bargained with me not to stick her in a home. She moved in two years ago today and hated it. She would cry and beg me to take her home. She did have a spell on antidepressants but they just knocked her out. When she stopped taking them she seemed much brighter. She still talks about going home and we tell her that we just say that she can't go home today, things aren't ready. We also told her last year that she needed to stay put because of the heating and the cold winter that was coming. Now she talks about going home to her parents and wonders if they are expecting her for Christmas - she talks about Christmas all the time!

But she was so unhappy before she went to hospital/to the home. I would spend hours with her every day at the expense of my own family but she would sit and cry and say she was so lonely even if I was in the room with her. She would phone me in the early hours convinced it was lunch time and wanting me to help her dress. But of course once she moved out she only remembered the good times, telling people "I want to go home and be surrounded by my kids". The "kids" in question were my kids, all of whom were adults who had left home.

Two years on she is very loved by the staff and other residents. There is a wide variety of abilities/capabilities in the home from disabled people who are completely with it to people like mum who can hardly talk and there are some ladies who she is particularly close to even though she doesn't know their names.

The first six months or so were heartbreaking for all of us but I know it was the right thing to do and she is happy and peaceful.

Thank you for your comment,

This is exactly the position I am in. Thank you for taking the time to tell me your story. I am pleased that your mum is happy now xx

Exactly this.
It would be disastrous for her to be at home. It just isn’t viable. And as a pp said, she’d deteriorate very badly at home.
This is tough for you OP, much tougher than for your mum. Lots of us have been through this, you are not alone. Don’t even think about trying to care for her at home. You know it can’t happen.

@hobbitone That's really not very long.

My mum hated going into a care home and only agreed to go in initially because she recognised that Dad, who was her carer at that time, needed to go into hospital, as his health was failing, and she couldn't manage at home on her own.

Dad was in hospital for a fortnight and then decided that he needed respite care to recuperate, and went to the same care home as Mum, where they had a shared room.

Dad actually settled very well and would have been quite happy to stay (I think he enjoyed all the attention he got from the staff!) but Mum kept agitating to go home. They lasted about two weeks at home, until it became quite clear that Dad could not manage there and they had to return to the care home. Mum was still not happy, but she put up with it to be with Dad.

As time passed though, she got used to being there, and eventually settled, recognising that she was being well looked after, didn't have to worry about anything and was in the right place. She had been so resistant to going into care in the first place that I was quite surprised when she admitted this. After Dad died I think she also realised how lonely she would have been had she still been at home.

@hobbitone You know your mum's in the right place. I think given time, she will come to realise that too.

Care home staff here!
sounds like she’s trying to make you feel guilty for putting her in a home, it’s very common

That’s not long. My mum lived in hers for more than four years and in that time she did develop some friendships. She hated the lounge “full of old people“ though. We settled into a routine of visiting parks and gardens and tea rooms with a wheelchair. Although she complained to me, she told absolutely everyone else it was a lovely home and she was well cared for. I truly think she had an extra four years of good quality life being there.

When she was dying (of cancer, very quickly) she was desperate to get “home” from hospital and was genuinely delighted to see her favourite carers during her last days.

She will settle in. Sending you 💐.

Oh I feel for you it’s horrible to see them upset. But you need to think about what sort of life would your mum have if she moved back and yours too.
It wouldn’t be long before she was ill or had another fall, and think about the constant worry you would have too ,which I know from my own experience is the worst thing ever.
My mum 92 needs to be in a nursing home, she has four carers a day, but their not very good. She’s anxious, depressed and lonely. I’m an only one and it’s killing me slowly, not physically, just the worry, I can’t sleep or eat properly, but still she refuses to budge. If your mum knew she wouldn’t want that for you.
It’s early days yet for her. Keep going she’ll settle eventually. Take care.