Thinking about giving up work to full time care for Mum- experiences and advice please

[Ghostofallnightmares]

Hi everyone,
My Mum has had Dementia for a few years but after a fall and hospital admission it seems to have accelerated rapidly to Stage 6(?)
She's at home now having been discharged, with 4 brief carer visits a day. I was able to stay fr the first 4 days full time with her, but we were literally downstairs in a small house all that time.
She's on her feet but nowhere near as steady as she was and is unable to make tea or drinks or anything. She hates adult incontinence pants and there are issues with her in the day and night trying to get to toilets, removing the pants etc.
Long story short, it's definitely looking like she might need full time care.
It all feels so fast - out of hospital on Thursday and now family are talking Care Home. I do not want to put her in a Home. I want to care for her but I'm scared . How do you know if you'll cope ? What's the reality ? I'm told by family it'll break me , but I want to try .
I'm so scared and upset and it's all so fast .
I don't know if you can give me advice? I've been beside myself for days.
There are no good choices are there in this game 😭
She's 88, Type 2 diabetes and survived cancer twice. Not to be harsh but her life might be limited. Who knows?

OP if you're 58 (I'm assuming a name-change fail) you'll find the sheer relentlessness of caring will destroy your own health.

Don't do it.

Have a read of this thread.

https://www.mumsnet.com/talk/elderly_parents/5036546-so-bloody-exhausted-waiting-for-someone-to-die-3

Well it may shorten your life by four to eight years.

Long-Term Caregiving May Shorten Life Up to Eight Years - Lewy Body Dementia Association (lbda.org)

But, it can be better for your mum.

Study finds that caring for older people at home can be just as good – or even better – than hospital care | University of Oxford

It's never a good idea to enter into a 24 hour caring role for an undetermined period of time if even a small part of the decision to do so is guilt about protecting an inheritance.

I say that as a long in the tooth social worker who has seen too many people break themselves into tiny pieces to preserve a financial benefit.

No money is worth your sanity.

As I said up thread, it is very likely that your mum will get to a stage where one person alone isn’t enough to care for her. Especially things like washing and dressing, or cleaning up, and especially if she becomes aggressive or violent. You would have to have experience in how to look after her as she gets less mobile, would you be able to manage if she could no longer walk or was at risk of pressure sores etc? Or to change her diet as her needs change? I’m not trying to scare you OP, but I know from experience it’s easy to be a bit naive about it all. Dementia is taboo in society so there isn’t enough talk about the realities. And it’s so much harder to find care at later stage dementia when you will be more desperate and in a rush to find it too.

Maybe if you put your approx location people could maybe recommend good homes to look at on the offchance they know any in your area?

And as PPs have said, just try not to think about the money. You don’t have a choice, not really. Your wellbeing and sanity is most important, and I agree with whoever said that good care would be a good use of whatever money she has.

It will take a massive toll on your physical and mental health, and potentially devastate your relationships with everyone else and anything else you care about.

If the money she worked for and saved gets her a safe and comfortable end of life then it’s money well spent. Find a lovely care home, and be her daughter. Your memories should be of popping in for tea, a jigsaw, reading to her. Not scrubbing the carpet and skin checks.

That second study isn't relevant to this question - it's comparing hospital-at-home with hospital admission; not informal family-provided care with a care home. Totally different things. Hospital-at-home is for people who would otherwise need a short term hospital admission, it involves very intensive support with close monitoring and dedicated medical staff calling or visiting multiple times a day.

OP, I know it's a shock when things progress quickly but for your own sake and your mum's, don't do it. Care homes have training, equipment, specially adapted environments, multiple shifts through the day so staff can sleep, and hotlines to GPs and district nurses (or on-site nurses) for much faster medical response when needed. You can't provide any of these things, however much you want to.

Thanks again everyone. Some very sobering advice about the reality of the toll it'll take. Also thinking about the "remaining her daughter part", which has struck a note..💕💓
I just want the best for her and I'll have maybe accept that's not me.

It does sound like she is ready for a care home.

It is hard but don't delay the decision. You have time to look at care homes and make an informed decision. She will then have time to settle and familiarise herself.

Talk in terms of respite. Tell her she is a bit poorly and needs to get over this before she goes home.

Expect to feel sadness and guilt. This is normal. It is much easier then trying to navigate the anger, frustration and sheer boredom of trying to care for someone with dementia at home on your own. Also, do not underestimate the difficulty of trying to deal with healthcare providers on her behalf especially if she presents as semi-normal in conversation. They will assume she has total capacity to make decisions and deal with correspondence. Don't assume you will be heard even if you say she can't manage these things independently!

I think you need to stop thinking about the cost and whether she will be able to leave anything to her grandchildren - that’s never a good reason not to use professional care.

I have seen several relatives with dementia and would never choose to look after them full time. It really is a 24/7 job. My stepfather now needs hoisting, it takes 2 carers to toilet him or bathe him, he needs turning every hour throughout the day and night. He can be very aggressive and lash out at his carers. Meanwhile, he has no idea who anyone is. He cannot communicate or feed himself. It’s absolutely heartbreaking to witness. He now has minimal money because it’s all been spent on his care home, and rightly so.

Wise words @ZippyDoodle and @Soontobe60

My FIL was in a very similar situation to your mum OP, it's heartbreaking. One thing that we found is that he didn't recognise the carers and got very angry and upset about strangers in his house. As carers were coming in 4 times a day it was distressing for both him and the carers and we felt it couldn't go on. He has been in a care home for just over a year now and after about a month he actually settled in well. His Alzheimer's progressed very quickly and it soon became obvious that he needed residential care. Just something to think about