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

Thank you for wording this so beautifully. The bit about the carrots is just perfect (and I’ll keep it in mind when attempting to comfort both my parents)

I agree with all those suggesting kindly white lies. This is what we did with our mum. "Yes mum, you just need to be here until you're a bit stronger" etc. But having been furious for weeks, she is used to the care home now and, miraculously, quite content.

It’s a term I first came across on Talking Point, the carers’ forum provided by the Alzheimer’s Society. For far too long (since both DM and FiL had dementia) Talking Point was a lifeline for me.

I’d thoroughly recommend it to anyone having to cope with this horrible disease. There aren’t often any easy answers, but whatever you’re going through, someone else will have been there, and - unlike most of the general public, who so often like to pontificate and tell you where you’re going wrong - will know exactly what it’s like.

OP you mention hallucinations and falls - has she been checked out for any infection which might be adding delirium to the dementia? If she did have any delirium it would contribute greatly to any distress and anxiety. Another thing to ask nurses about is pain. Analgesia can make people much more comfortable. Other posters have given great advice about reassuring her she is in the best place to get well and stronger and keeping it vague but positive about what happens after that.

Such a good post, thank you. With my dad it was trains (lifelong train commuter). We kept some old timetables in his room and between getting him to look up the time of the train we should get and preparing his briefcase (just an old one that he'd gather up various assorted things to take in and out), he could usually be distracted out of it. Trying to say that he needed to wait for the doctor or that he wasn't well enough or couldn't look after himself would provoke rage (despite all these things being true) so that wasn't a good idea.

You're so right that when they say they want to go home, what they're really trying to say is they feel scared and unhappy, they want to go somewhere they feel familiar and secure and loved (and in my dad's case anyway, busy and needed) rather than the last place they actually lived which may not have been any of those things - he didn't really have the cognitive ability to remember where his last home was or how he lived or with who in any event, so when he was saying he wanted to go home I suspect he was maybe meaning our old family home (long since sold) or perhaps even his own childhood home, or just a general sensation / memory as above. Doesn't make it less heartbreaking of course but at least in our case there was absolutely no doubt that we couldn't take him where he wanted to go which I guess did something to ease the guilt. Whatever we could do to distract him and try and instil that feeling he was desperately seeking towards (I'm sure the briefcase was a very important prop towards bringing back those feelings even though it had nothing at all in it) was the best we can offer. It's so tough OP though

*love lies 🤦‍♀️

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!

@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.

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

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.

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.

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.

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.

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.

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".

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.

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.

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 💐

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?"