Care refusing mother

[CarerinCrisis]

I am not sure if anyone can offer any advice but perhaps people have experience of similar situations.

I live 80 miles away from 90 year old mother who has multiple health conditions and was given months to live two years ago and a maximum of a year to live in early 2023. The good news is she is still here, the bad is that she is living an isolated and miserable existence but continues as she is because she will "soon pick up" , according to her.

She has had multiple professionals involved , who strongly advise respite or care at home, all of which is refused. I am the only carer and am needed every week for shopping, cleaning, washing etc whatever else is happening with my family or work. I would visit anyway but I hate that she has no local carers whatsoever , in case I am unable to get to her and no one else but me for company and support. Having frank discussions ends up in her getting angry and upset. Allegedly she has capacity to make "unwise decisions" and boy does she and regularly!

I have a strong feeling of resentment mixed with guilt at how I am feeling mixed with dreadful anticipatory grief at the inevitable loss that I am facing.

I realise there are no magic solutions and sending good wishes to all coping with way more tricky caring situations than mine 💐.

You're not going to like it but the only option is you stop helping her. That way she'll be forced to rely on professional and accept their help or she'll just suffer further.

@ILikePistachios unfortunatly I agree with you, easy to say but we probably all know its a very tough one to do! . OP can ypu try and step back a bit??

Allegedly she has capacity to make "unwise decisions" and boy does she and regularly!

That may well be the case, that she can make decisions for herself, but this doesn’t mean she gets to make decisions for you.

the only person who should decide what you do, is you.

so she can choose not to engage with any other carers / cleaners / laundry maids. But that doesn’t mean she gets to decide that you will do all these things instead.

would you expect your children to do for you, what she is expecting of you?

This is absolutely correct.

What would happen if you were injured, in hospital, or incapacitated in some way? Or burnt out and unable to cope (not unlikely, in the position she's put you in).

The current set-up is unsafe for her because it's way too dependent on you personally. There need to be professionals involved who are familiar with the siruation and can cover any absences.

This type of post really makes me angry.

I'm old and infirm. I see it as my duty to use all the help I possibly can to take some of the load off my daughter and her partner.

I think it's selfish to refuse outside help in favour of putting a burden on your adult child.

I have a load of things in my house to help me retain the maximum independence I can.

And I know, without a doubt, if the time comes where I need help with personal care, I'd much sooner have a paid carers help, than my daughters.

I saw how much my own Mothers relationship with my sister changed when my sister became her part time carer. No way am I going to let the same happen with my daughter. I'm Mum, she's beloved daughter. I didn't bring her into this world to make her a servant to my needs.

She does help me a tremendous amount. She ferries me to health also and to visits with friends. She shops and cooks when she's around.
But I'm very conscious of trying to impinge on her life as little as possible

So softer with @rickyrickygrimes. Your Mum takes her decision, and you take yours.

Oh I 😆. I meant that I try NOT to impinge on her life

If she has capacity then she is allowed to make crap decisions. She is not however allowed to make crap decisions for you. You need to step back op - or alternatively keep doing what you are doing for ever because she will let you…

That's such a thoughtful approach, I'm sure your daughter appreciates it.

OP, it's possible that something will happen and she will have no choice. It's not fair to you though.

I think you need to start saying things like, 'I won't be able to come for the next two weekends, Mum. We're away for one of them, and then we've got things planned for the one after.'

What would she do? You are absolutely entitled to have other things going on at the weekend, not just driving 80 miles to sort her out.

If it means she will run out of food, then perhaps try setting a future date - 'Mum,. we are away for two weekends in July. We need to sort some care/help for you'.

But she's not actually refusing care, she doesn't likely want to pay for it? She's happy you exhausting yourself doing it for her.

I'm in a similar position, although local to my DM, there nothing I seem to be able to say that will persuade her to have carers because she thinks that I'm nearby. It's been going on for years and I'm exhausted, I had cancer a couple of years ago but still ended up looking after her all through treatment. I have the same range of emotions as you. I haven't completely given up helping her, but I have stepped back a bit and only done the things that a paid carer wouldn't, taking her to medical appointments if she needs me there (although the last one I let her get hospital transport and told her to just call me when she was in with the doctor) and helping her with her finances, which neither of us would want somebody else to be managing. As PPs have said, I've just reminded myself that it's her choices and if we have to wait around for a big crisis to prompt something different, so be it.

Thanks so much everyone ; I appreciate every response . Apart from how it impacts on my life, it is an inadequate and unsafe arrangement for her, so something needs to change. Your advice given me much food for thought as I think about how we move forward.

has* given me

Tell her you're going abroad for 3 weeks, in a month's time. You don't have to go, but turn your phone off. She won't get help while you're running yourself ragged.

Taking care of the carer is not an added extra.

Remember the rule about putting your own mask on first in an aeroplane emergency. You are more help to others if you do this .

She is being unreasonable and you need support in order to do the best for her.

Is she getting Attendance Allowance? That might help her change her mind about getting help.

What is it that puts her off care? My mum has just gone into care, she loves it. It is like living in a hotel. Someone to make you a cup of tea or a sandwich whenever you want, company whenever you like, things to do on tap and someone to fix the TV.

Although I wasn't caring for mine at the time, she got a wake up call when she was suddenly admitted to hospital. And I couldn't get there as I was unable to drive for medical reasons at that point. I'd told her this. She'd ignored the information and just assumed I'd be there and would sort everything out.

I couldn't get there. Her friends had to sort her out.

It was actually quite a useful thing to happen as until then she'd assumed I'd just dive straight in and deal with everything in.

I think you need to make sure you're unavailable for a period of time. You must need a holiday after all this time.

Yes she receives attendance allowance and could afford help . I am sure she would really enjoy the social side of a care home but you can take a horse to water ...

But your responses have all been really helpful . It has made me see that it is MY decision as to whether we continue as we are or not . I already feel less burdened to be thinking I don't have to do this. Less martyr, more me time.

I was where you are (except my mum was only 25 miles away) a couple of years ago and I came very close to a breakdown and stepped back. I had been telling mum for ages that her expectations of me were unreasonable and that she had plenty of money to pay for some outside help and that I would help her to find that help and she just refused every time, even when I told her what it was doing to me and begged her to get help or even to just call my brother instead of me all the time. She didn't want to pay anything to anyone or take any responsibility for herself.

She had a couple of crises, was eventually found not to have capacity and went to a care home about 18 months ago. She's doing much better now and so am I.

Sounds like mine @terceira I ended up with cancer, which I'm convinced was because of the stress, and also begged her to get help again at that time because I felt as though it might actually kill me but she still refused. Refused again today even though she doesn't know which way is up anymore through memory loss. The sad thing is, her last 5+ could've been spending quality time with me, but instead they've been fractious at times and stressed and I've had to focus on practical things, I've tried my best to make things nice for her but they could've been so much nicer if she just could've got help from somebody else as well.