Worries about being put in a home

[kitchenassistance]

My DM has had a significant decline in her memory over the last couple of years. She lives with my dad who is very capable, so I think we haven't seen the full extent of her decline. She told me yesterday that she's started keeping a book where she writes down people's names to remember them (including ours) and she's massively withdrawn socially (given up hobbies etc). She's having trouble with words and with some familiar tasks, etc.

Her GP referred her for a full memory test a few months ago and told her to chase up the appointment if it didn't come through soon. It hasn't come through, and I keep reminding her to follow it up, but she never does. I assumed that she was hesitating because she feared it would be an unpleasant experience and that she'd be given a diagnosis of dementia (which is quite possible, though it might be MCI).

Anyway, talking to her yesterday, it became clear that actually she's worried that they'll not only give her a diagnosis but then put her straight in a home. I've tried to reassure her that that's not how it works, and that she's perfectly capable of living at home with dad's support, but I think she's really worried about it (she's always been a massive worrier, and her decline has made this worse). At the same time, its become very clear to me quite recently that there's no way she could live alone now, and that if anything happened to my dad, she'd need some sort of assisted living).

I just wondered if anyone had any words of wisdom on this. I want to reassure her, but also to introduce the idea that yes, she may have dementia, but there are some drugs that might help, and it's better if we all know what's going on and can plan ahead, rather than burying our heads in the sand and waiting for a crisis. At the same time, I totally understand why she wants to do that. She's just so scared and sad about it all, it's really hard to know what to say.

Care homes are a very expensive last resort - nobody is going to put her in a home while she is capable of living safely at home and making her own decisions.

I can’t provide a lot of hope with medication although there are some that can show benefit if the diagnosis isn’t left too late (FIL is a great advertisement for these, he was diagnosed in 2016 and is still living at home with MIL and only has carers in a couple of times a week to help with showering). A diagnosis will get you access into the world of dementia support services and the chance to meet other families who are living with it.

Usual advice - get POA asap if you haven’t already. POA means she can brief people on what she wants now; it only kicks in if she can’t make her own decisions any more so she has time to make sure everyone understands what she would want just in case things do decline.

My mum had a mixed dementia diagnosis about 18 months ago. Been prescribed a drug called Memantine (sp,?) which slows progression of it. Definitely no talk of care homes but she's doing ok with my dad as carer. He's so fiercely independent we can't even persuade him to have a couple of hours respite. They also go to a weekly support group which is great. People don't generally need residential care until much later and you have time to make choices.

I would suggest get the appointment because the sooner start on meds if appropriate, the better. Hope that is reassuring

Oh yes and definitely POA.

Try and encourage her to go back to groups and hobbies as social interaction definitely improves mental health and can slow the symptoms of memory decline. Age concern often have memory cafes and groups which support this. Google dementia friendly neighbourhoods and see if there are any local events near you

Thanks all. We've already got POA sorted, which is a relief. It's so, so hard to persuade her to continue to socialise. Some of her interests (quizzes, crosswords, bridge) she's just no longer mentally capable of. She's embarrassed to see friends, I think, as she's so worried about forgetting names or repeating herself or not being able to follow the conversation. She has various health problems (arthritis plus suspected IBS) which mean that she's not terribly mobile and often feels quite rubbish. She sleeps terribly, which then means that she'll usually pull out of any social arrangements that she (or my dad) have made.

It just all feels so difficult at the moment. There's a huge vicious circle (I think) of her memory loss, anxiety, apathy and health issues stopping her from doing anything, but then the lack of doing anything contributing to all of those problems. My dad has tried and tried to persuade her to still engage, but he's finding it very hard. Meanwhile she just sits at home fretting and worrying about her health, her memory and her future.

I guess I just need to keep reassuring her about the care home issue and keep urging her to chase the appointment (and hope it comes through of its own accord).

If you have got POA (for both health and financial?) then you can tell her that nobody but herself and the person(s) who hold the POA can put her into a home.

It might be worth visiting some homes with her to allay any concerns she has about being in a home and what that might look like. Sometimes actually seeing the reality makes it easier to deal with.

I'd also see if there are any memory cafes around where your parents live. The ones round here are great. They meet monthly with additional trips and provide support for both the individual and their carers. It's a great place for people to chat and discuss things with people who really get what they are going through.