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?

@BeEagerRubyBird ooh I absolutely agree, I sympathise and you clearly did the right thing for your grandmother. My mum, on the other hand, responds better to bald facts (although in the example you give I, too, would lie). I hope my post made clear that dancing round the truth is absolutely a good option!

Absolutely, and I guess it does very much depend on the individual and how they respond! Sympathies for your situation with your mum too, it is so hard.

@BeEagerRubyBird @Ifyounevergiveup I have found you posts really helpful thank you. I think I will try a different tack with her this stay and just be very vague saying that we will consider all the options when the time comes and she cannot cope at home. Maybe that will allay her anxiety about going into a care home.

SIL was determined that her mother should be told the truth - I thought it was just cruel.

Having dealt with a parent with dementia, there is no point in arguing with them when they get fixated. Say something non-commital, and change the subject. Get your sister on the same page and make sure you're saying the same thing to her.

Would it also be an idea to be unavailable next time your dsis needs a break, and suggest you book her into a local care home for a "holiday" for a week's respite or similar. In my experience older people - my parents included - have a very skewed idea of what a care home is, rooted firmly in the past and they think care homes are just a step up from the victorian workhouses.

Could you arrange to not be available next time your DSis is due for a break? Book a holiday, work travel, your children or grandchildren need you, you’ve caught something debilitating? That way she has to go for a week’s respite and gets a chance to experience what a CH is really like?

It’s very difficult when they fixate on moving in with you. Mine did for years (no dementia!) and I realised it was partly because we made a big effort when she did come to stay. Which she couldn’t see. All the favourite foods, activities and trips out just to her liking. I hated it because it was so much work and so different to our normal routine it meant I hadn’t had a break myself from work! This only ended when she decided to stay longer one time, which overlapped with us being at work, children back at nursery and preschool. She hated that we didn’t sit down and talk with her because we’d just got in from commuting and had to get children to bed, evening meal was
far later after children were in bed etc.

I haven't reached this point yet with my mum but our DMs are similar age and health and I feel for what this is doing to you both.

I did start to look at homes for my mother at the end of last year or autumn..I found one quite close to where she lives and really good distance from where my brother lives. Then we tweaked the carers arrangements and things do seem ok ISH. So I've put it all on the back burners. But it could take you a while to find one that you think would be suitable.

I think you need to start doing the leg work and when you find one you like, put her name down for respite care. Say to your mum that everyone will be having a holiday for a week or so. You and your sis and your mum are having a break at the same time and so your mum will be staying in this lovely place. You do need to be sure there are activities and aspects she would like about it and I really am optimistic that you will find these things. For the one I most like, they stream a Sunday service from the local church ans my mum would love that. But there are other social " clubs", bingo, a "cinema", lots of things. A good home will do such a lot for the clients, if that's the word. I guess I'm assuming the money situation will allow this. When she is on- side, you will have more success with setting up a proper move.

Hope I'm not making too many assumptions here. I don't think anyone can expect you to care for her when the dementia worsens, as I think it does tend to do. You and your sis need to look after yourselves too. all the best.

Last thing - I take it you or sis has LPA ? Have heard it's nigh on impossible when dementia has been diagnosed..Doubt the care homes would like that situation.

@Mathsbabe hi I hope this isn't a rude question. Can I ask in what way your mum needed help with going to the bathroom? Is it because of the effort of sitting down and standing up again ?

It’s heartbreaking but sounds like she’s got a good few more years at home yet.

I’d reassure her of that - and get a respite week booked in this year at a care home so she gets the impression they’re ok. She won’t be able to remember much but reassurance never hurts.

My mother was very disabled when she went into a care home. She went in because she didn't recognise the bathroom as a bathroom so wet herself while fully dressed. She would then take off all her clothes. Later on she would have the same problem with finding her bedroom so would leave her flat and walk naked round the building trying to find another lady to put her up for the night. This period was very brief and in the nursing home she soon became more physically disabled so she needed help with every aspect of using the bathroom

I’ve currently got my mum with dementia but she’s not the first in the family. We’ve tried honesty and we’ve tried lies. As sad as it sounds, lies are often the better option. It keeps them happy short term. That said, with the living situation I’d be quite firm and just repeat. My mum’s petrified of a care home so I’ve always told her I’d get a carer in to her so she doesn’t have to. I tell her it at least once a day. Be kind to yourself @Aussierelative. It’s impossible to please someone who lives in a different world sometimes.

My DM has mixed dementia, when she first had carers she refused to let them in, and argued with them every time they tried to do anything. But as the disease progressed she mellowed and was quite happy with them visiting, although she would never let the male carers in.
She is now in a lovely nursing home, and very happy there, which I never would have thought possible a couple of years ago.
I would just do whatever necessary to keep everyone calm and happy at the moment, and deal with things when you need to, rather than worrying about what the future might look like.

If your mother has dementia she isn’t going to remember nor is she going to understand. I speak from direct experience.

Doctors also say not to correct people with dementia a it can confuse them further, make them feel anxious and agitated and they may get aggressive.

So as always when a person with dementia says something you agree and distract.

There isn’t any advise on how to handle this at all that will work. Agree and distract.

Honestly unless you have experienced someone close to you with dementia it’s hard to understand but nothing will work. Your mother is fixating as that is what people with dementia can do. It isn’t personal it’s a disease that causes this to happen as very often they repeatedly ask because they don’t remember the response.

Thank you to everyone who has taken time to post. Lots of useful tips and words of support. Having a parent with dementia is always going to be a tough road. I am fortunate in many ways, my DSis and I work well together and support each other. We have LPA in place and DM has the financial means to pay for a good home when that day comes. I know not everyone has these things.

I've had both parents in care homes for 8 years each, one with dementia, both now RIP. You've had a lot of good advice that I won't repeat. One tip I've not seen that worked well with my dad was deflecting decisions to some sort of nameless authority, "they". It meant he didn't blame us for decisions because we framed it as "they say this needs to happen" and he didn't argue, he accepted it was the system in action. Obviously this might be completely wrong for your mum, but I thought it was worth mentioning because you might find an approach that works equally well, even if it's different. Dad was always very law abiding and this didn't change, maybe there's a "hook" that will help you present things acceptably to your mum?

My mother was coping OK on her own until an acute illness meant a month long hospital stay which definitely changed her for the worse. When she was medically fit for discharge, they said she wasn't mentally capable of being alone at hom and would need support. We arranged "convalescence" at what turned out to be an amazing care home and planned to transition back home but after a couple of months there,she said she'd prefer to stay. It made it so much easier for us.

I agree OP, this doesn't sound like a situation where the person forgets a moment later what was said. I would tell her she can keep coming for visits and you will keep doing nice things together, but if she ever starts to need lots of looking after, it will be in a nice nursing home, because you won't be able to look after her properly at home, what with your bad back or work commitments or needing to use your guest room for something else, or whatever. But you will still visit and make sure she has everything she needs. Keep saying it.

Deflect. If she asks if she is moving in with you, say, 'Do you enjoy being here?' Or 'It's nice to spend time together, isn't it?' Or, 'Well, you seem to like it here.'

It is exhausting trying to respond honestly to people with dementia. My mum asked me about 20 times an hour where my dad was after he died. I couldn't bear to see her grief every few minutes by telling her the truth, so I started to say, 'He's sleeping' or 'Let's leave him in peace for now.'

Your own stress levels matter. No point in attempting logical conversations that loop straight back because they don;t sink in. Say what is easiest for you, without lying, and make plans for a care home. Visit a few, put her name on the waiting lists of any good ones. The best, especially for dementia care, are hard to find.

@BoldNavyCritic Interesting tip about using the word 'they'. DM like many in her generation is very deferential to those she perceives as having status i.e. doctors, so this may be a helpful tactic.

Yes, this is exactly why it worked with Dad. "They say it might not be possible for you to move in with me, they might not allow it", might be a possible approach? And then be very vague about who "they" are, deflecting into "oh, I didn't catch his name, there are so many of these people in the NHS/government, aren't there?" if pushed - but for us, "they" was nearly always enough. For us it helped that it literally was "they" saying he needed residential care, and we weren't sure who all the people were either, so half the time we were telling the exact truth and not even deflecting!

For now I would just reassure her that shes doing really well at living independently and you can talk about it when you get to that stage. Just keep on repeating it. She's probably worried and its playing on her mind.

Realistically, you can't make any decision for her while she had competency. Although, you dont have to house her or look after her. I think at 90 shes doing great to live independently.

My nan lost her competency a long time ago. She retired at 72 by 75 she was in a care home. She actually begged to go into and then was desperate to come out. She lost her competency and her liberty. She has had a DoLS for about a decade. She's just not safe out alone. It's really sad to visit her. She has no idea who we are and hasnt for a long time.

I think kicking it down the line is the best approach here. Just say we will deal with it then, it might be years off, who knows what’s round the corner. Tell her that she has a few options and she’s fine currently and we can up the home help.

@Mathsbabe thanks for explaining this to me..Yes I can imagine that was a really difficult time for you. Glad you found her a lovely nursing home where you could be sure they took good care of her health needs plus providing all the stimulation activities..I think my mum would enjoy doing more if ( when ) I can get this sorted out . I'm not completely sure myself how you know when is the right time you really have to do it. My mum's health is quite stable for now. Hope I'm even properly qualified to be opining on the subject here..

Many thanks.

Too often the move into full time care is the result of a crisis such as a fall and probably more traumatic as a result. I would like to think we can move DM into the right home in a way that is more planned and at the right time for all of us, but of course that is not always possible.