How to respond when a parent with dementia expects to move in

[Aussierelative]

My DM is 90, had a diagnosis of dementia about 18 months ago. DF passed away nearly 20 years ago. She still lives on her own with a care package that has been in place for over 3 years. She has been persistently stubborn over this and very often refuses to co-operate with them. She is supposed to have help 3 times a week for showering, hair washing etc. but from the care app it looks as if she has showered twice in the last month. Her short term memory is very poor but she still has some agency in her life which we try and respect if possible even though she is awkward and argumentative [ frequently tells us black is white]

DSis lives much closer than me and does a lot for DM day to day [appointments, shopping, sorts out cleaners, carers etc.] DM comes to stay with me for about a week every 6 weeks or so partly to give my DSis a break. I also try and treat these breaks as a holiday for DM and generally fuss over her cooking her favourite foods, lots of day trips in the car, and I know she enjoys this.

Since her diagnosis she has asked both me and DSis repeatedly what happens when she can't cope at home. When I say repeatedly, this topic comes up 5 or 6 times a day when she is staying with me. The answer given is always the same that she will be cared for in her own home for as long as possible and then we will find a lovely care home where she can get full time care and we can visit regularly. She does not like the idea of a care home and we try and help her understand that her being more co-operative with the carers will enable her to stay at home longer. Unfortunately she seems to be getting more intransigent!

She has started to tell people [neighbours, chiropodist, cleaners] that she is moving to live with me full time. These people have rung my DSis to check on the details so we know what is being said. Being a full time carer for DM is not something I could do [not could DSis] She has always been hard work and although we both love her as our mum, living under the same roof, even without a dementia diagnosis is a non starter. We do what we can for her but there are limits.

She is coming to stay this weekend for a week and I strongly suspect that she will raise this, she has dropped hints in the past. Her dementia means she gets very fixated on an idea or topic and will present this move as a done deal. I wondered if anyone has advice for me or has dealt with a similar issue?

Can you find solid reasons why it is not possible (not enough bedrooms, no ground floor toilet or similar). And yes to starting to research care homes now. You can still take her out on day trips etc if she is in a home, have her round to your house for visits etc, take in favourite foods etc. But if she is managing with admin etc help and only 3 care visits a week, unless she is self-funding she won't get a care home place till she is much worse.

Remember it's not her fault she is questioning/seems awkward-she can't help it any more than if she had a foot problem and couldn't walk. There's lots of resources from dementia charities and advice for relatives which is really helpful, to try to make sure they can get the best possible, with guidance for how to speak with them etc.

My grandma moved in with us when I was 7. Agree, don’t do it and look for care homes now so you have a clear picture for when she really does need to go in one.
I know a lady of 96 who still lives alone. She has help but I don’t think it’s an official carer. She hasn’t got dementia but she’s getting very frail/forgetful/deaf. It scares me a bit as she could so easily have a fall but I’m not family, so …. (She has lot of family)

If you said yes, you will be moving in soon. Would she remember? Would it calm her down, and/or do you think she'd still keep asking. If she'd still keep asking because she's forgotten what you said I'd just say yes, as soon as we can arrange xyz.
You are still going to have to answer the question umpteen times a day but at least you won't get into an argument /cause her anxiety every time you say no.

My dad was similar and we'd just say that we would collect him up when the car got back from the garage. That made him relax (until the next visit anyway).

I expect she's quite scared by the idea of a care home. I wonder if she'd be a little reassured (at least temporarily until she forgets about it again) when you eventually get to the point where she can picture the actual one? Or if she knew it was going to be a home extremely close to either you or your dsis?

I'd start looking now tbh if she's already imagining herself not being able to cope. I'd also look close by. I think residents who have family who drop in frequently and randomly (even for short visits) probably benefit from that when it comes to the care they get. Even things like not being the last to be got dressed and the first to be put back to bed mid-afternoon because that's easier for the staff and they know there isn't a visitor due till the weekend.

Definitely start looking for a care home.
And if she asks, just tell her she can move in with you. She won't remember anyway and it'll keep her happy temporarily.

Perhaps talk about a hotel with care. My aunt was physically frail and when she could no longer cope at home, we found a lovely care home for her. It described itself as a hotel with care and it presented as a hotel with carpeted floors, a bar area, communal lounges and dining room, a hair salon, cinema and accessible gardens. They also had a dementia care wing for those whose condition had deteriorated since moving in, so the transition was made easier.

No point arguing with her, her reality is much different to yours and mine. You can try saying oh we will cross that bridge when we come to it your fine mum! I understand how frustrating it can be, unfortunately dementia runs in my family and I've lost two close family members to it, it really is hard.

I agree with PP, there is no point discussing it with her or trying to convince her of the virtues of a care home, because she is immune to logic, and she is fixated on the idea. And it is very unlikely she will remember an hour later what you said anyway. Just repeat what you have said previously, and then try to distract her and get her off the subject as quickly as possible.

Thanks for the responses so far. DM had a formal assessment at home a few weeks ago. They made a couple of recommendations for small adaptations but the bottom line is she is a some way off needing full time care. She will be self funding when the time comes. As we have POA the final decision will be for my DSis and myself.

My home has a GF ensuite bedroom that she stays in when she comes so in her eyes it is very suitable. She has always been quite difficult to live with and the dementia makes it worse and I am not cut out to be a full time carer.

There is a new care home with dementia beds being built very near my DSis house which we will no doubt look at. She did say to our DM that it would be nice for her to go and have a weeks respite care in the home and then she can see what it is like but that received a resounding NO!

Solid reasons won’t wash with someone deteriorating with dementia.

No, I know they won't but it will stop you weakening and be a quick and easy way to stop the conversation with anyone else that suggests it or has heard it from her.

My Dad lives in one of the hotel type ones they are very open to visitors, it might be an idea to see if there is something like that nearby (subject to finances) and take her in a few times for coffee or to the events (some do open theirs to the public) so she starts to become familiar with it (I know she won't remember but at some level). It might open her eyes to the fact that they can actually be very different to how many imagine them and much nicer.

My mother had dementia and when she couldn't live alone any more we found a lovely nursing home for her. She did talk about money for the first year or so and worried if there was enough money for her fees.
One day, when she'd been there about six months she said to me that she always thought that she would end up living with family as her mother had lived with her. This was a stunning moment of lucidity and I replied saying that her mother hadn't needed as much support as my mother did, for example my mother needed to be helped when going to the bathroom. My mother mustered her thoughts to protest and then realised that she couldn't go to the bathroom on her own.
She never raised it again.
There is a huge problem with Nursing Homes. If they have a bug they shut down and the home might be shut for weeks, and with Covid it was months.
In all other ways Nursing Homes are awesome. They have staff to look after residents. No one is trying to cook dinner and take someone to the toilet at the same time.
The home my mother was in employed staff to provide stimulation every morning, afternoon and evening. There were choirs, bands, dogs and many other visiting. Meals were 3 courses so there could be something a resident might enjoy.
My mother was there for four years. I couldn't have provided the 24/7 care that she needed. I also could never have provided all the activities she enjoyed. Instead I was able to regularly visit and have as much of a relationship as possible.

@Mathsbabe That is helpful. My mum's family have not been long lived and she has not had the experience of caring for an elderly relative herself or even visiting someone in a home - sounds odd given she is 90 I know. Years ago I was aware that she had very little insight into the consequences of living to be very old and maybe this accounts for some of her fears now.

It is unusual for someone to agree to move to a care home, because they want to stay in their own familiar world at home. But there may come a time when it is unavoidable. I told my mother she was going to the care home for a mini break (she thought it was a sort of hotel). And of course the break never ended. Within a few weeks she told me she loved it there.

Fortunately even with dementia my mother was under no illusion she would move in with me!

Several people have suggested that DM would forget if I agreed to her request. Although her short term memory is poor she does get quite fixed on certain ideas and remembers them and comes back to them repeatedly. Given the move here has already been mentioned to several people I suspect she is not going to forget it easily. She also makes things up quite a lot!! Sometimes she remembers them and they become quite real to her.

I also hate lying to her, I have learnt to sugar coat a lot of things to smooth the way but it does not sit easily with me.

This was the approach my parents took with my great aunt (in her 90’s).

They found a lovely care home (she was self funding but had £££) that had beautiful rooms, a plush restaurant, loads of activities on offer and helped her “go on holiday” for a fortnight.

Upshot was she never left and despite previously being adamant about not going to a care she loved it there, decided herself she wanted it to stay and spent a very happy 5 years there before she died.

i think many people are not unreasonably scared of going into care and have some very fixed ideas about what it’s like.

Often the only way to change that is to let them experience it.

With a great aunt the family also took "we'll look into it when the time comes" approach to kick it into the long grass. Then "two weeks holiday" at a very nice private care home that became 18 months until the end of her life. It helped that she knew a woman already there.

Another advantage of care homes - especially nursing homes - is that they either have medical care on tap or visiting regularly.

We found this to be a major advantage for FIL as he lived in an area with an appallingly lacking GP service and getting anything at all while he lived at home - prescriptions let alone appointments for a bedbound individual - proved almost impossible.

I feel for you and your Dsis and do hope that you can find a suitable place for your DM sooner rather than later. But I have to laugh a little at your last sentence here:
I also hate lying to her, I have learnt to sugar coat a lot of things to smooth the way but it does not sit easily with me.
Sometimes an outright lie is absolutely the best thing to say to someone with dementia. My MiL lived with us for 4 years with vascular dementia. She was a smoker and at the start we were able to leave her alone in the house for a period of time, but as her dementia increased, her smoking became more and more of a danger. I observed how she used cigarettes almost as a reflex, lighting one, taking perhaps a few puffs and then letting them burn in an ashtray. So we figured that she wasn't really addicted to the nicotine hit, but to the action of "smoking". I purchased herbal cigarettes and put them into her SilkCut packages to see if she noticed they weren't nicotine. She didn't. And since the herbal ones burnt quicker than the others, we were relatively happy, but still concerned. So when she returned home from having had a mini stroke and subsequent short hospital stay, we removed them all and told her she had quit while in hospital under doctor's orders. It was a lie of course. But were we wrong to do it? I don't think so.
At the end of her life she suffered from intestinal pain that was probably a tumour of some kind which we opted to treat palliatively and keeping her in our home. On the last morning, a district nurse was due to come to fit a morphine pump around 10am. My MiL was in quite a lot of distress around 9.30, calling for someone to get her a doctor. I said I'd call him, knowing that I was going only to call the nurse to come sooner if possible. In a moment of lucidity, my MiL said, "I bet you're not." I still do feel bad that she was right. Nevertheless ...

@SylvanMoon I know what your saying about lies and I know that ultimately it is kinder than the blunt truth in some circumstances. RIP your MiL

There is no point knocking down the idea over and over, it will just come back up as she won't remember or hold on to the reasoning. There comes a point when you realize you're just disappointing them/putting them through pain over and over again. She will be fixated on the idea whatever you do, so you may as well opt for not repeatedly letting her down and just saying yes mum if it comes to it, or similar, over and over.

My elderly relative had to go into a home as her dementia was to the point that multiple care packages had failed and she wasn't safe, we also found an absolutely amazing one but she spent 2/3 years saying she was going home soon and it didn't matter what you said. We soon learnt to just say 'ah ok that's nice' rather than putting her through the pain of telling her that was never going to happen. She has, finally, settled in now and no longer says it, thankfully.

you have two choices. A lie, or the truth. If she’s anything like my mum, who has Alzheimer’s,, dancing around the subject doesn’t help. So either yes mum, you can move in once you need it but your assessment says that’s not yet. Or no, mum, you won’t be moving in because I’m not qualified to look after you. End of statement. I know it seems harsh but my mother seems to respond better to facts, in that she then drops the matter and finds something else to obsess about. I think it’s important to remember that revisiting conversations isn’t manipulation on her part, like it would be if she were in her right mind. Her brain just doesn’t think it’s had an answer yet. You’re not hurting her, she won’t remember, so if you feel better telling the truth, you can.

@Ifyounevergiveup the only thing with that is if it is something really upsetting - which your daughters saying you can't move in and would instead have to go into a home is likely to be - then you are putting her through distress in that moment. For example - and this is at the extreme end admittedly - my grandmother could not retain the information that her husband had died, she used to ask for him every time, and every time we told her she would be distraught and go through that loss yet again, it was always that new and raw to her. We soon realized it was far kinder to say he was coming to see her soon, and she believed he was until she died.