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.

What's her concept of time like? Can you permanently tell her she's going home in a few weeks once she's had stairlift/alarm/new carpet fitted at her house?

In my experience, no matter where you'd move her to, she would still 'want to go home'. It's dementia talking.
Try reading Contented Dementia it is really useful.
My MIL wanted to go home and we all stuck to the same story - she would be going home in a week or 2, as soon as the decorators were finished.

Are the staff worried that she isn't settling?

Not sure @titchy? I think it might just agitate her more!

I do know what you mean,, @netto. Every care home seems to have a little old lady sitting by the front door in her coat, waiting to go home, waiting for the bus or whatever. I think my mother is fated to be that woman. It's harrowing.

If it helps, I've met people with dementia who are at home who say 'I want to go home'

'I want to go home' is a very primal thing when we are upset, a bit like 'I want my Mum'. It doesn't always mean 'take me home right now' but 'something is upsetting me and I don't know how to express it'. And she is upset as she finds the world very confusing.

It's only been 1 month, give it more time.

Yes, I think what she really wants is for my dad to come back and take care of her. It was only when he died, very suddenly, that we realised what a lot of shoring up he'd been doing. She was completely incapable of living alone whereas many people are used to it.

Good advice above. She doesn't really want to go home but she is yearning for past comfort and familiarity.
My MIL was like this too and has lived in her care home for 3 years now. She hasn't asked to go home for several months - it's taken her a long time to learn this is where she lives now.
We don't try and explain it to her, just offer reassurance and say we can't take her today which seems to mollify her.

Thanks for replies. I might try to speak to the staff tomorrow, or even try to get hold of the geriatric psychiatrist who diagnosed her and see what he advises. It just seems a bit unfair to fib to people but I suppose we are not dealing with someone rational, or with much recollection.

She may be more settled when you are not there. You know she is in the safest place with the best care. If she likes cats or dogs could you get her a realistic soft toy, sitting stroking a 'pet' might soothe her
Finally, this is a phase which will probably pass.

Don't think of it as telling her lies. Think of it as trying to help her stay calm and as happy as you can.
I've become quite the liar since working in dementia home, we have a resident who waits at the door as she is quite new. Eventually they move away with encouragement and settle over time.

They have dogs come in most days, the staff bring in their dogs for a bit of daycare! That is good to know @MrsCarson that it may just be temporary. I am hoping that she settles as the nights draw in a bit over the next few months and it becomes a bit cosier, because I guess it isn't nice to lose your garden in July...

Change her front door so it's the same as the one as her old house, or create a skin from a photo that can be stuck full size on her door.

Make sure her new home is as close in layout and familiarity as her old home - same furnishings, photos etc.

Your mum, with dementia which is a memory illness, has been picked up and dropped into an environment which is nothing like the one she remembers. In time, she will grow accustomed to her new home but in the meantime, it needs to be as close to what she can remember as possible to encourage that.

@minisoksmakehardwork We have done that, bar the front door, and in many ways it's nicer than her house, which was getting pretty dilapidated! Lovely kitchen and bathroom. If it was a depressing slum, I'd understand...but it's the illness that is making her feel like a fish out of water. People of my mum's generation lived in the same house for decades, left their mark on it, knew every inch of it. I wonder how it will be for people of younger generations many of whom won't know what a permanent home is, unfortunately.

My friend who has dementia thinks he is in a hotel and asks when he will be going home. It is the home he has lived in for 30+ years. It's the dementia talking.

One care home I go into sometimes as part of my job has one woman also waiting in the communal area with her handbag for her daughter to take her out;it's sad but it's a wonderful home who provides multiple daily activities

My Mum was exactly the same. She hated every second of every day that she was in a care home, and it was heartbreaking because there was no alternative. her dementia was very severe by the time she moved in and she was completely incapable of living alone or looking after herself. I was completely happy with the home, and they couldn't have done any more to support her, but she just didn't want to be there. One of the other care homes I visited had an area with a little bus stop with seats in the downstairs lobby and told me that a couple of residents sat there all day waiting for a bus to go home.

My mother is law is much the same too. She went into extra care housing three years ago now because of very bad dementia, and even now, although she admits her new flat is lovely, she still asks constantly when she can go home. It's so sad.

Often they want to go home to when they lived with mum and dad …..
kind management if dementia suggests fudging upsetting subjects as the answer isn’t retained and understood anyway (eg if a spouse is dead better to say “ he’s popped out/ not here right now “ rather than making them experience the bereavement over and over )

so you need a “ not today let’s see what’s for dinner “ type answer - maybe ask the home how they deal with it ?

This is a great little Australian film about dementia, OP. Some of the words and ideas are a little outdated, but it's such a sweet little ode to this particular generation of people

My mum asked repeatedly to go home when she was in her own bungalow. She kept trying to get up out of bed and get herself ready to leave. She meant go home to her mum's house where she had lived in the 1940s. One day she said she had something important to ask me. She said her mum and dad were coming for her and would it be ok if she went with them. I said I thought it was a very good idea, and when they came to get her she must promise me she would go with them because she would be happy then. I like to think they did come for her at the end.

I wouldn't tell 'fibs', which are really lies. Depending on their condition, people can and do have flashes of insight and realize that you are lying. This can create real anxiety, anger and sometimes violent behaviour. Diverting is the best possible way. "i want to go home"...yes Mum, I know that's how you feel.We are doing our best for you. Let's go and have cup of tea, walk in the garden, I wanted you to help me plant these seeds, game of cards etc. Don't try to dismiss her feelings. YOU ARE DOING THE VERY BEST FOR HER. KEEP TELLING YOURSELF THAT. She WILL EVENTUALLY, develop some kind of routine. ........ And take care of yourself too. The whole family needs you to be healthy and not careworn. All the best to you xx

Thank you all so much.

Dementia is an AF. It really is.

It’s very sad indeed. I remember my gran in her care home with dementia continually asking to go home, so mum got her ready one day and took her, it was only down the road. She stood outside and was completely overwhelmed, and said oh no I can’t go in there, it’s too much for me I’m too tired and too old. She never asked again.
My own mum now is 92 and very frail, should be in care or at least assisted living, but flatly refuses to leave her very dangerous 1st floor flat. Even though she has had three life changing falls in the last three years, one falling down the stairs last year and ended up with a brain haemorrhage.
I guess what I’m saying is, even though I live everyday with my broken heart in my mouth, you can’t make everything right for them no matter how hard you try.

My experience too. I used to say Maybe another day we will arrange something. And repeat . And repeat. Don't feel bad about lying or telling her things she doesn't like. You are making a judgement based on reality and she is not. My elderly uncle kept asking for his mother , he was 92. Just told him that she wasn't here st the moment. He would forget until he asked the next time. Didn't see too upset either.

The ones who want their husbands/wives Mum or Dad usually end up asking me if I've seen them. I say, that no I haven't seen them but if they come in asking for you I'll let them know where you are and direct them to the lounge to wait. That usually settles them for the afternoon. It can be heartbreaking when they get their coat on to wait. We've had a few thinking they were in a hotel, we let them know it's all inclusive so no need to worry about paying it's taken care of. Using meal times works too. They want to leave, but Oh no the cook is making you your Dinner, it'll be ready in 30 minutes, don't go before that.

When my mum moved into the home it was awful. At first she was articulate enough to tell us that she didn't like it, that she didn't belong there, wanting to go home. It probably took a year for her to settle. There was no alternative to her being in a home. She has no mobility, requires two people to lift her with a hoist and she is incontinent alongside severe osteoarthritis and dementia.

She no longer asks to come home every time we visit but will occasionally ask how long she is staying or where she will be spending Christmas. We say she just needs to get a bit stronger or Christmas is a long way away. But as she is losing her language it is getting easier to visit her.