How should we talk to elderly mum about staying in care?

[unbuttonedowl]

My DM moved into aged care a couple of months ago. She was hallucinating and wandering at home, had a fall and it became clear she was no longer able to live at home. She now asks constantly to come home, is agitated and furious at the doctors, wants us to speak them them etc. It is clear she can't live at home without round the clock care as she can no longer walk.

Is it kinder to tell her that we are looking into bringing her home and working on adapting the house etc, or do we avoid the question, or do we say to her - this is your home now, this is where you live?

It's so hard to know what is kinder because she has limited memory and understanding and really hates what her life now is (and I don't blame her) but at the same time, is it stopping her from settling there if she thinks she's leaving in a day or two? The home has made it clear to us that she won't be coming home, even for palliative care, which I found quite confronting and may push back on when the time comes (but again, have no idea if that's the right decision or would be for our benefit and not hers.)

If your mum has limited memory and understanding I would just keep telling her that she can see the doctors next week and talk about it then.
I know several elderly people who are in residential care and they tell me quite regularly that they are "going home next week". One even has her suitcase packed ready (it has been for 6 months)

Maybe that particular care home isn't the one for her. Is changing care homes an option. But it's very common for elderly people to keep asking when they're coming home even when its just not feasible for them to live at home. Seems the best answer is you aren't ready to come home yet. Rather then say
you're never coming home. I don't think I'd say we're looking into adapting the house. I wouldn't be happy about the home laying down the law about what happens to her.

With my friend's mum in a similar situation her family told her she wasn't well enough and needed the nurses to look after her. She had been in hospital after a fall so it was framed that this was a continuation of that care after her fall and she needed to be looked after as she wasn't well enough. It was true. The home looked after her well and we all boosted that by saying how nice it was, how the food was beautifully done, weren't the staff nice, etc.

I don't know that changing homes is feasible at this point, she's only just gone in there and it's been a huge change for my dad. The care is good and so is the food, she is doing well and has put on weight. But we will see what happens. I feel like the agitation is part of the dementia too and will never resolve at this point. We are more or less saying we'll talk to the doctors, she's still recovering from the fall, give it a little longer. It's reassuring to hear that other people took that approach rather than the bleak truth which is that she's not going to go home.

I would go for empathy.
I know you would prefer to be at home, but you just aren't well enough at the moment, so you need to be here with the doctors and carers.

one thought to hold on to, is that the ‘home’ they want to return to is a combination of a physical location alongside the better health and capability they used to have when they lived independently.

it’s hard on the person, also hard on their loved ones. We kept to the ‘just need to build you up a bit so you are ready to go home’ line.

It reminded me of all those carrots I agreed to eat so that my hair would grow curly , or straight or whatever.

With my DMIL I used to say “shall we catch the bus in the morning?”. She had travelled by bus for most of her life so this was familiar to her, I would then change the subject. DM was content because she hadn’t been challenged and luckily, was very easy to distract afterwards.

Usually when people lose cognition they can often ask to go home. It is often the sense of comfort and security that they crave though rather than the home or people.

My DMIL asked to go home regularly but had forgotten the home that she’d lived in for 50 years and raised her family. In fact before she left she had thought she was in a holiday home.

So phrases like “we’ll see about catching the bus tomorrow” or “we’ll talk to the Doctors tomorrow” .

The Alzheimer’s Society has some useful information here on how to deal with requests to go home.

It is a big adjustment for all of you. Keep talking to the staff to see how your DM is. They should be used to getting residents to settle. It can take time too. My DU who has full cognition and chose to go into a home took a good 6 weeks to settle.

If her memory is bad and she keeps forgetting then constantly distressing her with "the truth" over and over again is cruel. New approaches simply agree and distract when people get to this stage because it causes less agitation and stress and there is no point in telling them the blunt truth because they will forget it 10 mins later.

So, I would say "yes, of course, we'll ask the doctor when we next see him about you going home. How about a cuppa now?"

Yes as PP have said it's kinder to say something like "when the doctor says you can, he's coming tomorrow"

Also it's common for ppl with dementia to mean their childhood home when they say home rather than the home they just left.

it's very painful OP, I really sympathise 💐

yes that has been the response we've fallen into because it's felt like the easiest/kindest option, i just wanted to check we were doing the right thing though... she blames the doctors for everything that's happened so I don't mention them but i do mention the care staff who are absolutely lovely.

I would keep saying that she's not well enough at the moment to go home. I would not say anything that isn't true. Agitation and even fury are normal with dementia and it may not help to jolly her along saying the home is lovely- or it may, you can judge that. What a terrible disease this is. You will be helping her just by visiting.

The fact she ‘blames the doctors’ for what’s happened sounds like she is in denial about ageing and becoming less independent. So her going home request isn’t just about going to the physical place, it’s about wanting to turn the clock back to when she was well and obviously that can’t happen.

White lies about needing to stay and get a bit stronger are kinder and then distraction by offering a biscuit, talking about the weather, the music playing etc.

With my mum we gave all sorts of excuses/reasons while playing up the positives of where she was. We embroidered the truth somewhat, even invoking Boris Johnson and Jenny Harries. During the pandemic mum had become obsessed with Jenny Harries so all we had to say was "Jenny Harries has said..." and she settled well enough until the next time.

We never said that anything was forever, only "for now".

Is it possible to speak to them about some appropriate medication to reduce her anxiety and agitation. My grandmother had to take some to reduce her becoming distressed in a similar situation. Dementia is horrible, sympathies as you often get the brunt of their aggression and it’s horrible.

This. This. This.

Dementia is so cruel because you retain parts of your brain function. So you are trying to communicate something and too often people keep telling you 'No', taking away your sense of self. We will go soon, or When you are better is so much kinder. She's lost so much - let her hang onto hope, and to the belief that people around her still hear her - tough as that is for you. Been there. Got the badge. Sending lots of support for you dealing with this cruel illness.

I’ve been through this with both my grandmother and my stepfather, both of whom I was the names relative dealing with their care homes. It will soon pass because it will become the new normal. I used the same suggestions that others have suggested - keeping it casual, low key. It took a few weeks until they settled more.
Your point about palliative care is understandable, but in all honesty, would it really benefit her to be moved into what will be unfamiliar surroundings by that point? She will be in her ‘home’, surrounded by staff she is familiar with and who, most importantly, will be familiar with her and her care needs.

Thanks for all your suggestions and personal accounts. It really is horrible because she has moments of such clarity and quite rightly feels it's very unfair and something should be done, but strangely doesn't seem at all aware of the fact that she's lost the use of her legs and mostly her hands as well.

Soontobe60 that is what the staff said to us when we were talking about end of life wishes. This is her home now. It makes sense, but was still hard to hear. It's a dementia only care home so pretty confronting at times (though also lovely to see the staff trying to give the residents a good day with games, music etc.)

One thing I read on here is to remind myself that she's safe and cared for and that does help a lot.

She does get anti anxiety medication at night and when needed but I will ask dad about maybe getting her more. Her anxiety has always been a huge issue long before this but it's worse than ever, even she says it.

I know its awful for you (been through it myself) but the staff will be well used to it so continue to ask them for their advice. MIL was in a home for nearly 4 years and never stopped asking when she was going home until her dementia was in the very late stages. My DH did comment he'll be going to hell with the white lies he had to tell her "oh, when you're better ", "maybe next time, we'll have to ask the nurse", "not today as it is raining/dark/too windy" etc etc. False reassurance and deflection is the key. Don't feel guilty about the white lies though, see them as similar to Santa and the tooth fairy.

My DM’s short term memory was practically zero, so I was able to recycle the ‘love lies’ ad infinitum. For quite a while in her care home at first, she was asking me (forcefully!) to take her home, saying, ‘Get me out of here!’ etc.

I will just add that it was a lovely care home, purpose built for dementia, and we had left it late anyway to move her there - she simply hadn’t been safe to be left alone at all any more.

She had often talked (pre dementia) of ‘moving to a little flat’ , so I told her many times that I was looking for a nice little flat for her, just down the road from me, ‘And as soon as I find a really nice one, we’ll go and have a look together!’

It always kept her happy (or as happy as she was ever going to be) for the moment.
I hope you find a way, OP, and please don’t be reluctant to use ‘love lies’. To me there is absolutely no point in sticking to the truth with sufferers of dementia, when it’s only going to distress or make them angry - and they’re going to forget whatever you say so quickly anyway.

From experience, people who say you must always tell them the truth, have little or no practical experience of the daily realities of dementia.

Agree @KnittyKnotty, gentle reassurance without actually lying. “OK let me look into that for you” works well in my elderly parent’s case

Thanks all. It is good to hear other peoples' experience and how these are 'love lies' and not harmful or disrespectful.

I do feel sometimes like we pull her back to her old self which is distressing for her. She also doesn't have the 'happy' version of dementia that other people there seem to have, but we will keep going and find the lines that work... fortunately she also loves sweets and is easily distracted by something to eat or sometimes gives up on the argument or insisting we do something and drifts off.

@GETTINGLIKEMYMOTHER I wish I’d heard the term “Live Lies” when DMIL. FIL refused point blank to tell DMIL any lies at all when several HCPs explained that he was basically tormenting her.

She would regularly ask for her DM. I’m not sure when she died but I’ve known DMIL since the late nineties and I e never met her.

I used to say things like “she’s just popped out to get us something lovely for tea”. DMIL would be happy with this and then could be distracted.

FIL would insist on telling her, if he was therex that her Mother had died years before and she was being ridiculous. I did find it very hard to forgive him for the upset he caused her. Fancy finding out regularly that your DM was dead and you weren’t going to see her again.

The Care Home actually asked him to stop visiting several times because he was upsetting her so much. Mind you, I’m not sure that she liked him much before the Dementia but that’s another issue.

My DM didn’t have the ‘happy’ version, either. 🙁, unlike some in her care home. One old lady happily used to tell me almost every time I visited, that her Mum and Dad and Gran and Grandad were coming soon, and they were all going to the seaside together.

How I wished that my mother could be happy, back in some sunlit childhood idyll like that!

*love lies 🤦‍♀️