Struggling with my mum hating the care home she is in

[AdamF11]

Advice needed. I am at my wits end. In October my father was taken to hospital and was admitted for 4 days over that time me and my cousins took it in turns to look after my mum. We managed to get a care home assessment and they agreed to have her. We always thought / hoped that if dad got better he with the help from us all she could come home. However, my father passed away in Jan and she keeps saying that she hates it in the home. The home is very modern and staff are always very nice.

She use to have friends who went in and see her, but she can be very awkward and slowly less and less people will now visit and in all honesty I don't blame them.

I go about 4 or 5 times a week but all I get is I don't want to be in here, you forced me in here and actually I wish I was wasn't here at all.

what were the reasons she was placed in the care home? Is she self funding?

My father had been her carer for about 5 years and couldn't cope any more, we all work and since she has been in she has had a fall and now can't stand or walk. Yes we self fund

Could you look at a package of care at home?
Do you know exactly why she is unhappy? Are there things that could be tweaked? Or does she simply miss her home? Might a different home suit better?

Sometimes there are apparently small things that make people unhappy with their residential home. Can she see through the windows or are they too high? What is she looking out on? Is there canned musak that is driving her nuts? Is another resident being a nuisance? Can she watch what she wants on TV? What is the food like? What is it about home she misses and can something similar be replicated in the home? Is she missing her pet?

It is worth going through her day in detail to see if there are changes needed.

Is she their under a DOLS evaluation?

If she is in the throws of dementia, and doesn't remember day to day ( or minute to minute), just say okay, we will sort that next week, use something like car in garage or having to give notice to the home, or her house needs a new bathroom fitting and that will take a while.

If the council are funding it then the don't normally suggest a care home unless all other avenues have been exhausted.

Could she go home? Does she have capacity to make that decision? If she where to go home what would that mean for you?

What she like when you aren't there?

It's difficult. My dad was in a home under DOLS and he regularly asked to go home. This just wasn't possible and we used the above phrases. When we weren't there he was fine and engaged with the staff etc.

If she can’t walk then care at home is not really a viable possibility. If she can’t get herself to the toilet then she may be sitting in shit for a few hours at a time.
My mother had carers at home but moved into a home when she couldn’t get to the toilet.
OP, get the nursing home involved and ask them to explain to her why she can’t come home. The other thing you could do is tell her she can go home when she is better.

Sorry cross posted. Agree- try and get to the bottom of why she wants to go home if dementia isn't in play.

But sometimes there are no easy answers.

Have you discussed with nursing home?

It’s really really hard, but I think there are some realities that have to be faced and you should not feel guilty.

Your mother does have to be in a care home and at bottom what she’s saying is that she doesn’t want to be old and frail and needing care. That’s understandable, but the reality is that she is old and frail and she does need to be there..

My limited experience is that with time people settle down and adjust. Also be alert for UTIs because staff sadly don’t always pick these up and they can contribute to how she’s feeling. Sometimes the only clue is behaviour.

I know someone who is in a care home, said she was miserable and wanted to go home. A couple of days later she was happily playing a communal game in the living room, from her wheelchair and then watching TV.

Don’t take what it said at one time as an indication of how things are permanently.

Have you talked with your DM about 'home'? Does she want to go home, or more, go back in time?

With my DM 'home' stopped being her bungalow and became her childhood home. It was populated by her long dead parents.

Yes, this. Have you spoken quietly to the manager and staff to find out how she is when you aren't there? I know several similar families where the home resident professes a hatred of the home, the staff, and a desire to be back at their former home; yet are normally actually happy there in general - one even featuring regularly in home media posts laughing, dancing and jiggling her zimmer frame at the regular music and movement sessions, whilst maintaining a constant narrative to her visiting daughter of how she is always lonely, never does anything, and "would rather die" than be in the home.

Sometimes, sadly, it's not about what a person wants but about what a person needs and, if your mum needs a team of people making sure that she is safe, fed and warm, then, as hard as that can be, the home is the best place for her.

Also sometimes a person's repeated desire to "go home" isn't actually to literally go home. They want to go back to a place and time where they are fully mobile, vibrant and healthy. Even if you did pull out all the stops, put your own life on hold and destroyed your own peace to get her "back at home", would she realistically be any happier, regularly visited by friends or more mobile again? Probably not, and you would then also have to face the prospect of reintroducing a care home setting further down the line when things have deteriorated again, plus her increased frustration that getting her out of the home didn't have the desired effect that her mind is telling her it would.

You have and are doing the very best for your mum, but I can sense the despair flowing from your post. Are you able to grey rock a bit and employ "love lies"? e.g. don't respond to the negativity beyond noncommittal noises, or aim to cut your visit short if it goes on for too long? Stuff like "I don't want to be here." "That's a shame mum. What's on the menu for dinner?". "When can I go home?" "When the doctor says your walking's good enough." "When the doctor says so.". It's not an outright untruth, but it's also not a wall of "no".

You're not a bad person and you're doing your best for your mum out of love. I'm sorry that you lost your dad and have to bear this burden. Seek out the Cockroach Cafe on MN if you want to - it's full of wisdom and kindness from others in similar positions.

Best wishes to you.

I feel for you OP. We have just been through almost the same situation. Mum has had to go into a care home because although she is medically 'well' her mobility is almost non existent. We attempted to have a live in carer to keep her at home but that didn't even last 12 hours as Mum up a lot in the night as well as the daytime. She really hated it when she went into the care home in March. However we had to have a strong conversation with her and once she realised that going home wasn't an option and the care home is her home now, she settled a bit more. She is self funding but her estate will only last for about 6 years of fees which is another worry. I am lucky as there are 4 of us locally and we can visit every day which helps, but its so hard seeing your Mum so sad and upset, really pulls on the heartstrings. Good luck to you all! x

Thank you for all your messages.

Exactly this. Please don’t listen to the “take her home and have a couple of hours a day care and then you take over the full burden because you owe her that” brigade which always come onto these threads

I’m afraid this is quite common and will probably remain difficult unless she accepts the inevitability of the situation. I couldn’t blame someone for not wanting to be there but it’s what has to happen. Does she have some of her own possessions with her? Can she get to a communal area where she can be with people in a similar situation?

Sorry to hear this , we were the same but with very bad dementia too. Mum was very unhappy for the last 6 months of her life in a home. But her condition was so bad there was no alternative. It was a horrible time for her and we were pensioners looking after a very old pensioner, with our own health issues. Sadly the care system is broken and despite eye,- watering fees, we were all let down by the home, nhs and social services. We were on our knees. There were some wonderful compassionate carers and many indifferent. Mum was very angry and daily visits were an ordeal. Gaining this horrible knowledge has made me have serious thoughts about my own future. I will not allow my own children to go through the stress that me and my siblings did. Thankfully Mum now at peace .
Sadly the government has no capacity or intention to improve things, so I will be having an advance directive to avoid the fate of a home.
Sadly all the homes operate on a business model and I have seen a very low bar.
As with us a home move would not have helped as like your Mum ours wanted her past life. All you can do is your best and that is what you are doing, the only solution is acceptance, very hard I know. You have utmost sympathy, be kind to yourself. we are now slowly recovering from the trauma of that time. Sadly , many others will follow our path.

So she has full capacity? In that case it should be her decision about how she lives, provided it is within her financial means. If that means care at home and sitting in shit for a few hours and sleeping in a chair, then she has the right to do that (many do, I used to be a carer and it's not an uncommon set up. You can take meds to make it more likely you will need to go at a certain time). If not that, is there another home she could choose to live in?

There are options, even in these circumstances.

From experience, I would reduce the number of visits per week to a minimum for a little while anyway. I found that the more I visited the more agitated my mother got, and the more upset I became because I couldn't give her what she wanted - to go home.

In my case it was a revelation. I used to go every evening after work and it was a terrible trial both for her and me. I reduced that down to Saturday mornings and one evening per week. After a while she settled well. There are so many activities that she gradually became involved with that she didn't even miss me!

There is a period of adjustment obviously in moving to a new and unfamiliar environment. I personally think (with hindsight) that it's best to leave them to get used to a new routine and integrate a bit without making things confusing by visiting a lot.

I'm not saying what I did was the right way, I'm just giving you the benefit of my experience.

We went through the same thing with my grandma 30 years ago. It's really sad but the home is the best place for her. Nod and sympathise with her that it's a shame but unfortunately she's not well enough to go home. Try not to feel guilty OP.