Calling all who have a parent in a care home.

[Tolkienista]

My mother turned 96 this week.
Her health is gradually declining, including her mobility.
She is in cognitive decline, though she'd deny that.
Currently she has an ITU which has been treated with antibiotics since Thursday & she's very confused as a result
She's been in a care home for the last four months after a fall last April which seriously affected her mobility.
We love the care home. Her room is fantastic, great meals, lovely residents, great carers too. We were so pleased we found it.
I can honestly say it feels like extended family when we visit.

However, she's still not properly settled in.
I'm writing this because after visiting her today, everything was so negative.
Culminating in her saying " I want to leave"

I guess why I'm writing this is, how do you cope with a situation like this?
I've spoken to the carers,.managers too & they think she's doing fine.
She lived independently for 95 years, so it was never going to be easy adapting to the confines of a care home.

As one of three siblings, I get the brunt of her frustration, I live closest to her & I'm her next of kin.
I see her four times a week, around one and a half hours per visit. I'm really doing my best, but it's really hard.
She gets lots of family visitors too across the generations.
Any observations will be very welcome from those of you who have a close relative in care.
Thanks.

Ask the carers what she is saying when there’s no family there. We found that our visits upset him, and that’s when he got upset saying he wanted to go home.

It does sound like a lovely place and they are hard to find. Is she able to say what it is that she is missing? Something a s simple as being able to make a cup of tea for herself when she wants or have her own choice of TV channels. Not having her favourite furniture or pictures. The ability to get out for a trip to a cafe/library/shops?

If she could try and explain then it might be possible to make some little changes

At the moment she is confused so I would keep it simple, if she says she wants to go home just say OK, she's poorly at the moment and is being looked after. We tried to loo, for the positives, you're looked after, you don't need to worry about paying bills, shopping, cooking, cleaning etc, it's all here and the staff say you're their favourite resident. Family know you're safe and warm and you get lots of visitors.

Could it be she means she wants her old life back before the fall? Which is impossible? It sounds like a lovely place- you are visiting an awful lot. Could you step back a bit to protect yourself?
🌺🌺

MY DF has been is a care home for 2 years he still asks to come home now but it is few and far between, I think just gently change the subject as it works for me

She is confused and wants to go home, I would say that's usual. I just say to mine 'once we treat the infection' and it seems to pacify them in the moment.

My dad had a tour of the care home he was then to move into, and said how nice it was. However, he would regularly ask when he was moving to 'the real home'. I would say something vague about maybe in a week or two, rinse and repeat next time. This may sound callous but it's a symptom of dementia or cognitive decline to be convinced you're in the wrong place, and ask to 'go home' or similar. My theory is that they are unsettled and know something is not as they want it to be - ie they aren't at home with loved ones anymore, can't think as clearly as they used to - but can't process all the related bits of that so it just comes out as a wish to go somewhere else.

If you have seen she's generally happy and well cared for where she is, that's worth a lot. I would say something non committal about maybe in a few weeks' time. Be prepared to maybe be saying this repeatedly.

I would also suggest cutting down the length of your visits, if you live nearby so 4 times a week is doable. I found with my dad that he didn't have as good a sense of time passing but was always pleased to see me. So 20-30 minute visits were as good as longer for him.

If you are 100% certain it's not the home, then work on trying to make her room feel familiar for her. Lots of photos in frames, make some photo books, maybe her own bed linen/blankets and a chair from her home. Even her own TV - my Dad found having a different remote control very unsettling. We took his old TV and his radio in which comforted him. And maybe some snacks in her room so she doesn't have to ask someone for food?

It's hard for new care home residents to go from independent living to somewhere very institutionalised where everything happens at a set time every day.

This is very common and it does taper off as they begin to forget their previous life. Change the subject and chat about something else. If she returns to it, say something like ‘Let’s see how it goes’ and keep kicking the can down the road.

You’ve done the right thing - don’t let this derail you. You wouldn’t let a child make decisions about their own welfare and, at 96, your mum is in a similar position.

I’ve been you. I know how hard it is but this has to be a practical, not emotional, approach.

Ugh. I understand this completely. My MiL fell and had the same outcome. She now in the most beautiful care home, it’s clean, well staffed, the menus are awesome. Her room is dual aspect and overlooks the garden.
But…..
She complains all the time, the windows aren’t clean, the lights are dirty, she had to wait twenty minutes for a carer, she doesn’t like the menu, someone has stolen an extra stong mint that she’d hidden in her glasses case. Literally I could write a book on her complaints.
She was vile to a family member just recently when they’d come to visit her. So vile and so entitled that I had to kindly but firmly ask her to apologise. She told me that the family member was lying and that she had done nothing to upset them. I know that the family member speaks the truth.
I’ve asked MIL if she’d like to move care homes, I can find her somewhere else, but she says that her friends are here. So I then asked her about the positive things about the care home. She could only list three. If she’d stayed in her flat, she would need two carers four times a day which she didn’t want. Plus she would have been very very lonely. I do remind her of this but it falls on deaf ears.
I don’t think that there’s a real solution, it takes time to transition from dependent living to communal living. May ask your Mum what her solution would be.
Good luck OP.

My mum has awful dementia, in some ways that makes the situation so much easier.

Four visits a week sounds like a lot.

If your Mum has capacity I would perhaps be telling her there isn't another option and that her complaining is upsetting me, that said if she's very confused at present it's more tricky.

it's not easy.

Home might not be her actual home if she still has one outside the care home .
" Home " could mean her childhood home she might be remembering whilst confused with the uti .

Yes, this - along with a soothing approach when it comes up. My experience was that trying to be rational or solution focused with someone with dementia simply got me nowhere. Harsh reality didn't help and only upset them - my mum was dead, no changing that, and my dad didn't remember, but telling him didn't make him feel better. Quite the reverse. So instead I was vague, said we'll see about the move, Mum's being well looked after and you'll see her soon I'm sure, that sort of thing.

It is terrible to see it but you can't fix the problems of people with dementia. They are un fixable. All you can do is try to make them feel less frightened and more comfortable in the moment. It's a very cruel situation.

I know you haven't said your mum has full dementia OP, but at 96, I'd have to suspect some element of it.

Do you have a camera in her room so you're able to observe her when you're not there and see for yourself how she is?

Thanks for getting the ball rolling, that's great.
Her room has her favourite bits and pieces from home, photos, trinkets and knick knacks.
She hasn't got the strength to make a cup of tea for herself.
They being a trolley round twice a day with biscuits and cake on offer too with a cup of tea.
It's too cold over winter to take her out, but we'll resume outdoor visits once the days get warmer.

As for going home, it's really just to see the place, nothing in particular.

Some weeks I do three visits a week , but I think this ITU has really impacted her thinking.

@rainythursdayontheavenue yes to all the points you made in your post.
She has a whole drawer of her favourite chocolate & snacks.
Also she has a digital photo frame opposite her chair with photos from her childhood, through to adulthood & all of us, grandchildren and great grandchildren too.
She loves it.

Can you take your DM out for tea at a local cafe or garden centre? She may feel a bit trapped in the care home, however lovely it is. Sometimes a glimpse of normal life helps settle the restlessness. The home will have details of adapted taxis if mobility is a worry. And you need to make sure she has been taken to the toilet beforehand so she won’t get anxious while you’re out.

I also visited often, I felt it was necessary for the care home to know me so if any issue arose it could be dealt with promptly. But it does swallow up your life.

MIL is 90 and very similar situation. She’s in the nicest home in town and isn’t capable of living independently after a series of falls and having very limited mobility.

She feels she has had her trial and wants to go home. She’s conscious it’s costing an arm and a leg. She wants her children to look at alternative options (there are none). All live about 2 hours from her and while she definitely has capacity her grip on reality is reducing. She suggested her daughter move closer to her…

Anyway, the strategy is to kick the can down the road. No one’s house is suitable for her to move in - that’s been mentioned. Everyone works full time too. That’s repeated. She said she’d have someone in her house…they are going to cost it (likely yo top care home by some margin). It was very difficult to arrange a carer and then she unilaterally reduced her hours before. Hopefully she will gradually accept she’s going to have to stay there and get used to it. She’s definitely got very self centered and selfish in recent times.

We had her to stay for a few days before she went into the home and I couldn’t leave the house. She also can’t make the loo easily so there is a commode to deal with. It’s very tough.

Yes a good point.
She doesn't have dementia, but as you say at 96 and with a decline in her cognitive ability I think she may well have elements of it.

She came out to stay with people over Xmas and gets taken to the pub for lunch regularly. She’s not been abandoned but I think she forgets much of this and doesn’t appreciate the efforts everyone is going to. Sadly that’s old age for many.

Thanks for your post.
Yes it does sound similar.
She had carers in for around four months after her fall, but she had dizzy spells and a minor fall & it no longer felt safe for her to be in her own home.
I never thought it would be easy for her to transition to a care home environment but now we're in to 2025, it's going on longer than we expected.

Yes I can see so much of my mother and her behaviour in your post.
The only difference being that she has never upset a visitor, so that's why they keep coming back.

I think today was particularly bad because one of the carers had helped to wash her and she said her hands were cold, that had upset her (the carer was wearing latex gloves)

Anyway, you have my full sympathy.

Yes we did it regularly when the weather was good & although it was a challenge we will resume this when we get into longer, warmer days.
We have taken her out too to indoor shopping centres.

Personally, I just redirect the conversation. After 3 years my 87 year old aunt still says she wants to go home, but actually is so much happier now