Mother in assisted living 'wants to go home'.

[gemstoneju]

My mother is nearly 88, widowed three years, with dementia though physically very fit. She was living alone with a lot of support from us until a month ago. My brother is a shiftworker living 10 miles from her, and I am a single parent with SN kids. We struggled, and she was very isolated (and complaining about loneliness). And unsafe, by definition. The only carers we were eligible for could only call for five minutes once a day, and the company was pathetic, tbh. Useless staff who breezed in and out, signed a log, and didn't bother heating her a meal. Half the time she missed her medication. She took a fall in the NY and broke her arm, and we decided that it would be best to find a supported living place more local to us. We got one specifically for people with dementia, own flat with support, it is lovely, lots of activities every day. Gardening, your own little plot too. I mean, you'd think it would be ideal, wouldn't you?

Instead she is fretting and unsettled. She keeps telling me she 'wants to go home'. My mother has never been very sociable and a bit remote with people, while complaining of isolation too.

I am bloody soul-destroyed at the thought of having to live with this from now on. I feel guilty too. Has anyone ever experienced this? Does it get better? Should we try to move her back home and pay for a private carer (who she'd probably resent) and muddle on ourselves? Does anyone have any experience of doing this? Sometimes I wish she was really just away with the fairies 100% and then there would be no choice. The choices we have are both deeply imperfect.

Try asking her where home is.

In many cases people with dementia will answer with somewhere they lived fifty years ago. As PP have said, it's a concept of home they want.

It's often easier to accept theoretically that by wanting to go home they're not necessarily longing to return to the place they've lived for decades, than it is to shut yourself off from responding emotionally to what often seems like a simple request.
I have to forcibly remind myself of the scrapes MIL used to get into in her quest to get 'home', while she was still living in her own house. Her nursing home is only a short drive from where she used to live. She wouldn't even make it up the front steps of her house. There would be no end of aggression and agitation, if she even recognised it. And still, and still, the temptation to just pop her into the car and take her there when she's upset is sometimes overwhelming.

My grandmother, who also had dementia, spent the last two years of her life looking for her little girl who died when she was three. It's all horrible. It really is a protracted, living nightmare.

Yes it is the most devasting illness for all concerned. However, you cannot dwell on that. IMO you must separate the emotion for the logic. You are obviously a very caring person, BUT all of you family need you. Make sure you do not become depressed.

My mum who has had dementia for some time and is now bedbound and more or less unable to speak used to ask all the time about her parents coming to see her and going home, and we just reassured her that it would take a bit of organisation but we'd sort it out but probably not today, and she'd say yes please and be satisfied until next time.

In fact, she is probably in some ways happier now, asleep peacefully and often, enjoys being fed and a nice meal and smiles with real pleasure at visitors. It isn't always worse and worse.

I mean, it is awful sometimes for us. But I think she isn't unhappy and that is the main thing.

Yes, it does get to that point. My uncle, who is much, much worse than my mum, sits in his chair singing songs and hymns he learned in primary school. The agitation and anger has gone. Doubtless he's drugged to the nines. Still sad though.

Oh yes, still terribly sad. But I was so glad when I realised my mum wasn't actually unhappy any more. There are different challenges. But not having to witness the misery and anger is really a great relief and it must be much better for her too not having to feel like that all the time.

This sounds exactly like my mum who moved into a nursing home a couple of weeks ago. She says she hates it and wants to go home. She tells me she is existing not living. She is absolutely correct of course.

She had a catastrophic stroke earlier this year and life has been torture for her. I have no nearby siblings to share the load and the whole experience has traumatised me. I hope and pray that the situation will not continue for long, truth be told and I feel terrible admitting that.

I wish I had some words of wisdom but am just stumbling around in the dark trying to cope. Main task at the moment is trying to get my mum a comfortable wheelchair - absolutely clueless about this and she's spending her days in pain in a completely unsuitable seat.

I just wanted to say that I really appreciate everyone's contributions to the thread as I feel so alone and desperate. It helps to know that other people are struggling too and I wish you all the best.

I understand exactly where you are coming from, @Eomt. I really think modern medicine is a double edged sword when it comes to the very frail and elderly. If people are old, mentally failing and incapacitated, it is kinder to let them slip away, surely. Existence is not 'life'. Your poor mum sounds exhausted and just tormented.

Yes, it's a cliché but very true that you wouldn't leave your pet to suffer like that but there is no other option for people. It is very cruel.

Yes to the last two posters. DF lingered for years. They threw everything at keeping him going even though he was a shadow of his former self. We wanted him to pass with some dignity but he didn’t in the end.

He is at peace now.

It's a blessing really @Tracker1234.

We do seem to have drifted a long way from the more pragmatic view that led to doctors calling pneumonia 'the old person's friend.'

It's just awful, we've created this dreadful situation for them, for us 😢

There are really nice “robocats” who respond to stroking by purring and even rolling on their backs

I explained to my dad he needed to get fitter before coming home, and he concentrated on that for a while. Then he moved to specific complaints like wanting to fix his wardrobe to the wall to stop it falling on him. Eventually he settled.

She hasn’t been there long. Every so often there’s a thread in MN started by someone who’s just moved into a new house and is now wanting to go back to the old one.

I care for an elderly lady with dementia who often asks to go home. She lives in the same home she's been in for 60+ years.
Sometimes she tries to pay me her hotel bill before she leaves. Sometimes she thinks her house is her old work place. Sometimes she thinks it's her sons house and that he's letting her stay.

I think old people wanting to go home/ wishing for more company/ complaining, are actually wanting to turn the clock back to a time when they were busier and happier.

They expect others to step in and make the busy and happy life they want.

But no one can fix this.

In Welsh we have the word "hiraeth" which can be described as a homesickness for the past. Before the dementia really took hold when mum was in rehab she would say "I just want to go home to my kids!" I am her only child. The "kids" she wanted to go home to were mine - all of whom were adults and only one living locally. She asks about "the kids" and "my little ones" and my cousins DD. My cousin's DD is a tall, elegant teen, not the "little one" my mum pictures and she would have no comfort from seeing her. Mum wants to go back in time to when my dad was alive and they lived in our garden with the children in and out all day everyday. There is nothing I can do to help her.

I think unless you have been the child of someone like this you really cannot comment. I know it sounds heartless but we really cannot go on like this patting ourselves on the back that people are living longer (look at us - we are pushing the boundraries of medical science for older people) and not recognising that the pressure on family is immense.

People are lingering for longer and longer, care homes are no longer unusual and the people muddling on through with their poor children trying to support them is rentless. Someone is making a lot of money out of care. Its heartbreaking but if I am honest the majority of people dont want to live in care homes. They want to go in their sleep but instead the 'burden' (and I dont use this word lightly)is horrific. I have a friend who wont go on holiday because her Mum who insists on living independtly relies on her SO much. Mum wont hear about a care home even though it will be local to my friend who I know would visit a number of times a week or even every day. Why is the Mum dicating what happens and we all run around making sure that her wishes are covered despite the fact our own family is missing out on. Needless to say the DH of my friend is getting increasingly annoyed about the situation. I have told her (yes I am really bossy!) that she cannot ignore her husband withdrawing like this.

I know I sound like a heartless cow but something needs to give.

I am firm with my Mum re boundaries. I wont jump to her tune and if she starts fussing and telling me her woes then I am sorry I will be closing down negative conversation after negative conversation for my own health and wellbeing.

I put on my late Father's coffin 'At Rest'(i was seriously thinking of puting finally!) but of course that wasnt appropriate.

Totally @Tracker1234 . Just in relation to this thread, I was reading the BBC news website this morning and read this story. Unpaid carers: 'I had to choose to care for my husband or my sister' - BBC News

It's so sadly representative of the lives people lead - this woman is 77 and a cancer patient, AND has to provide care for her husband and sister in two locations, while relying on the goodwill of friends to 'babysit' the husband while she goes out. It is absolutely inhumane pressure on an unwell elderly woman. I live in NI myself and can testify to how awful the fight to obtain support is, our system is in bits.

I am not sure its necessarily support we are looking for. That costs both the tax payer, the carer and the well being of the carer's family. My DM could live another 8-9 years getting frailer and frailer. I noticed with my Father that during the worst of Covid they priorised him for everything. He was in hospital for a number of weeks, horribly confused, lashing out at medical staff and generally being very very difficult to deal with. I wasnt able to visit and tbh - I didnt want to living so far away.

So for once it was for someone else to deal with. He lasted another couple of years and finally he was let go. The care at the end was completely disgraceful and I wont go into that but I nearly lost it at the hospital with the attitude of the staff, the throwaway comments by junior doctors who looked about 12! In the end he went down fighting. Dr said he wouldnt last the night but I said you dont know my Father. He will go in a couple of days just to prove you wrong.

We need to allow people to manage their own ends. My Father had DNR on his notes but we might need to think about widening this. I know - I have my tin hat ready for that one but I have seen the inside of a number of care homes more times that I want to and some are literally just slumped in the chair or as a PP said sitting by the front door with their coat on... There was a woman at DF care home who used to rush the door everytime it was open and one time did manage to push past me (by pinching me on the face!).

Yes. I don't want to start an argument about abortion, but we seem to have these strangely out of joint ideas about it being perfectly legal to abort a healthy pregnancy until 24 weeks, or to abort a disabled child at near term, yet seem so unwilling to confront or pursue the argument for euthanasia/assisted dying for degenerative conditions like dementia for which there is no remission and no hope. Society has strange ideas and priorities and values when it comes to the 'sanctity' of life.

I could have written this post.
Its my experience exactly.

Also my aunt sits by the door of her care home waiting for her father to collect her.
She’s 89 and during Covid almost died- she was nursed back to health very aggressively. Given the choice I am sure she would have chosen to slip away with dignity. Since her mid eighties she was saying she was ready to go.
So sad.