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.)

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

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.

The hallucinations were worse when she was at home as she was being given medications she didn't need, but is now off those after the hospitalisation to get her medication reviewed properly. The fall happened in hospital unfortunately and that ruled out going home, although the doctors had already ruled it out.

She does have a lot of pain as her muscles are so seized up and she never moves but she does get regular pain medication. I will keep asking about this at her reviews though. If it were up to me I would give her a light sedation at all times for her anxiety/distress.

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.

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.

Well I went today and love-lied the entire time and she was perfectly happy to ask - should we go now? and hearing - in a few minutes, let's just wait for the nurse (or whatever else I said) and eventually drifted off to sleep. I also left a couple of times to get her things from her room and she'd say when i came back 'I was waiting for someone to come and it was you!' which was very sweet. She will no doubt be agitated again but today she was fine and my presence helped. Thank you all. So helpful to understand the idea of 'home' being general and not her actual home too.