I don't want social services or hospital treatment for mother

[Trendy1]

My 90 yo mother lives alone with no carers, she is very stubbonly independent, but actually, I do everything (62yo female), shopping, gardening, etc. She is very negative (rubbish childhood) and has no friends or other family that will visit. It is very difficult to get her to the dentist, the doctor is even more difficult. She is fit and healthy for her age, with no illnesses or problems except HBP. Her mild dementia causes a lot of anxiety. Because of this, I have never enforced her to hospital or doctors, and in fact, she has never really needed treatment. She gets very angry and anxious if anything different ever happens, ie dentist or hairdresser. I am a carer, and I have seen clients under social services and what can happen when somebody is 'in the system' and it hasn't usually been stress free and happy. My fear is that I want my mum to just pass away at home, which is what she wants too. I'm not sure it is ethical to just allow nature to take it's course. There is currently no reason to go to hospital, I am just pondering the future. Does anyone else on here think this is ok?

Most people have to fight to get social work to support elderly people. If you don't want their involvement I expect they will be delighted.

If she has capacity to choose then she should be able to choose. I'm sorry you're going through this.

Depending on type, mild dementia may be treatable, which is likely to help the anxiety. The available treatments don't work once it's advanced.

While she has capacity, she is free to refuse hospital admissions. Maintaining good health by dentist and GP visits (and hearing and eye checks) will give her the best chance of both maintinaing capacity and staying out of hospital.

Social services can do care needs assessments and assessments for adaptations to the house without having any further involvement - and while you are providing care they will be delighted to stay away.

On the one hand, I’m with you. I too have seen too many people’s lives extended who would very likely have preferred a natural death sooner.

But as you know, it’s not that simple. When it comes down to the wire it’s pretty hard to say no to treatment. She’s on medication for high blood pressure - why, if you want a natural decline for her? Where is the line? What if she gets a chest infection or a UTI this winter? Is she having her flu/covid jabs?

Does she have the capacity to make decisions about her treatment, and if not do you have LPA for health and welfare?

Ofcourse it's ethical to let nature take it's course, possibly unethical to do anything else if those actions are against the person's wishes.

If you can cope crack on as you are but if you need support then getting the ball rolling sooner rather than later is better.

Has your mum got a health power of attorney in place, or has she filled out a respect form outlining her wishes?

Looking to the future, she is likely to either have a fall or an infection which is serious enough to warrant a hospital admission, a respect form could outline under what circumstances she would want an admission to take place.

Easier to have the discussion now than at the foot of the stairs at 2am.

People do not always just "pass away", so I don't believe letting nature take it's course is ethical without frank discussion.

@Trendy1 it sounds to me like you’re doing what you can to support her to stay in her home, which is what she wants. I think this is ethical if you and she can cope, and there’s no danger to others. I’m sorry you’re getting no thanks or appreciation. Solidarity.

Even those of us who have worked in social care, the NHS, or as carers find caring for a relative is different and tougher to navigate. Be kind to yourself, especially if she’s very reliant on you and refusing outside help.

DF is a lot younger but in poor health. We had been supporting him to stay at home for a long time, while he could manage some things independently but his physical and mental health started to deteriorate rapidly and he did end up in hospital (repeatedly), which forced our hands. We tried options such as sheltered housing with visiting care but DF needs 24 hour supervision and is now in a nursing home. I often think DF hopes he’ll have a heart attack and it will be over, like other men in his side of the family but we’re now in the system and DF is not happy.

I don’t see anything wrong at all in what you're doing, I just hope you can keep going 💐

It's perfectly fine as long as she has capacity.

The issue is likely to come when she falls/has a crisis, wants to come home and you end up on 24/7 nursing care and don't get sleep etc etc etc.....

I think letting nature take it's course is in theory fine while she is fit and well, but in practice if she doesn't just go to bed one night and fall peacefully asleep, there are going to need to be some decisions that need making about medical care/pain relief should she become sick prior to passing away.

I think the difficulty is that you can't predict the future. In theory, yes she can stay at home with you and she may not need any intervention but she may need something. It would be unethical to leave her at home without medical intervention if that lead to her being in pain- for example what would happen if she broke her hip? There also may be other situations where she may need extra support- if she was constantly falling, doing things that put herself in danger etc.

None of that may ever happen but you just don't know what could happen.

My advice would be- if she still has capacity to make decisions get a POA in place and work with her to make an advanced care plan but be open minded to all eventualities. www.england.nhs.uk/wp-content/uploads/2022/03/universal-principles-for-advance-care-planning.pdf

You seem to think that you not contacting a doctor will mean that she'll just fade away peacefully. But completely neglecting an illness is far more likely to mean that she dies in agonising pain or gasping for breath in terrible panic.

It's completely ethical to think that a 90 year old woman who hates interference should die peacefully at home.

However, there's many a slip betwixt cup and lip. It would be best to plan for events. Ask her if she would grant you power of attorney for health and welfare; it's either you or a doctor (or paramedic) she's never met before who will make decisions when she can't.

If she won't do that (or even if she will), she should be encouraged to complete a RESPECT form.

If she won't do either of those things, you have done what you can and should be at peace.

Do you have Health & Welfare PoA? This will enable you to deal with HCPs on your mother's behalf when she no longer has capacity. Does she have a letter of wishes? Has she discussed DNR with her GP? These are things you should get sorted out whilst she still has capacity. It can be upsetting to talk about but needs to be done to enable her care and eventual demise to be as per her wishes.

Thanks all of you, for your kind words. Just a few things to add...@olderbutwiser you make an interesting point as to where to draw the line, she has been of HBP medicine since her forties, but I get your meaning.

She has twice broken her arm in the last ten years, both times not especially because she was elderly. Obviously I dropped everything and took her to hospital. There is a slight assumption that I would allow her to lay in bed dying in pain. @saraclara your comments are rather cruel, and unnecessary. I "seem to think" nothing at all, I am attempting to carry out my mother's wishes, and in fact, the post is actually asking the community if that is ethical.

As a carer, I have seen clients die in hospitals, care homes and own homes, and on the whole, own homes seems to be the nicest way to go.

I am going to organise LPA health (I already have finance), DNR forms and RESPECT forms, and have another discussion with her. She has been adamant about her care for years - the first conversation we had about this was when I was sixteen and she first asked me to ensure she was not on life support machines. Hey-ho, I suppose everyone's childhood is different!

The father of a friend of mine died recently after refusing all medical attention for years. When it became clear that he was seriously ill, they were able to access palliative services at home despite the lack of diagnosis (because he wouldn’t visit the hospital for a scan, but a doctor saw him at home), and he had pain relief.
My grandmother died in her own bed in her late 90s after refusing treatment for a UTI and it was a fairly quick process. My other grandmother took all care offered and lingered for a long time in discomfort. It’s a hard balance to find.

From what you've described @Trendy1 - absolutely ethical to uphold her wishes. I think we've all seen and heard about what the current health system is geared for, and they are not places of comfort and healing. A realistic view of what a hospital admission could do for her is very sensible.

It's good that she's been really frank with you, although I'm sure discussions of it at 16 are a while different kettle of fish!

I don't know how you feel about bearing the responsibility of being your mother's advocate when she is no longer to advocate for herself, I see it as a massive privilege which speaks to a long, deep and trusted relationship - but this is not always the case.

These little griefs along the way are very hard to carry at times, and I hope you've got wider support, it can feel very lonely and overwhelming even when you have the capacity and ability to deal with this.

I think you are doing a really great thing facilitating your mother’s wishes Trendy1

I think you should worry a bit about yourself though as being a ft carer takes its toll.

If possible financially, maybe start gathering one or two trustworthy people around you, who can step in for a morning, afternoon or night just in case you fall ill yourself. Even having one afternoon off a week could make all the difference to you.

Hi @Timeforabiscuit , I do have a lot of support from my own family, and DH has lost his 90 yo parents in the last couple of years - both with dementia and in the system, both a continuous source of stress and loss of control (by DH). My brother is unhelpful, won't visit, and my father left years ago for many other women in another country, so it has always been just me and mum. I don't particularly like her as she has always been controlling and negative, especially about my DH. However, I said I would look after her and I will, so I wouldn't call it a loving relationship, but it is nonetheless deep and trusting. Odd selection of feelings really. And I'm suddenly finding it very helpful and therapeutic to put these words down.

My worry is that you've had to be caring for her/listening to her plans for nearly 50 years. That is a long time when she's not been very kind to you and has been controlling too.
What about your quality of life (working as a carer for a job and a carer for your mom) and your wellbeing.
You deserve time to live too ❤️

I think it's all very well following your mother's wishes regarding health, but if the daily care/welfare needs start ramping up more i.e. daily meals and commode cleaning - doing that every day for potentially years, is a very different ask.

The health question I think is the easiest, as it's a clearer cut one. Care creep is insidious, and if they aren't a generally appreciative person, doing it alone will put both of you in a horrendous and risky position.

If she is clear about her wishes, you can be clear about yours too, whether that is levels of general courtesy, specific tasks, timing or frequency of visits.

If you are happy to do all the support that’s fine. Although it’s odd that you want to do it for someone you don’t particularly like.

My grandmother managed happily at home until her early 90’s, sadly now late 90’s she’s ended up in nursing home and whilst it’s high end and lovely, they are prolonging her life in a way I don’t think is helpful. So I do get it. My grandmother is too well tended to, so she hasn’t died. But it’s not much of a life.

My mum had dementia. We paid for private carers to go in four times a day towards the end but I was really ‘in charge’ of her and her finances etc. about six months before she died she became unresponsive. Couldn’t hear her breathing and I rang 999, they told me to pull her onto the floor and start chest compressions. I dragged her onto the floor from the sofa and she began breathing again. She was admitted to hospital and had had a stroke. Her dementia took a big decline after that. She was in hospital for a couple of days and returned home via ambulance to die. She was bed ridden and only really tasting food. She wasted away really, over the period of about 3 months. Ate mouthfuls and drank cups of tea and sips of fortifying drinks, but that was about it. She wasn’t ever distressed and one day took a turn downwards. I rang the GP who visited immediately and said the end was imminent. She died a couple of hours later, comfortable in her home.

Thank you, last four responders. I have, frequently, expected to find a client passing away when I arrive (I very much stay 'til the end' although I am not specifically palliative care) and depending on their wishes, I wonder what my reaction may be; if they have prayed every night to 'go and meet their husband' then I may very well just sit quietly and hold their hand. One lady insisted that she didn't ever want to go to hospital, and eventually, very much wanted to. As someone said - you cannot predict the future. Caring is insidious, and I don't think it's odd that I'm doing it for somebody I don't like, I don't feel I have a choice, it's not her fault she's the way she is, she is a victim of circumstance.
Thanks also, those of you who've told me to look after myself. Not something I am particularly good at!

Others have raised lots of valid points, and you have to be practical about modern medicine, it does have lots of ability to make people more comfortable and ease suffering as well as the negative of perhaps extending life for the sake of it.

Just be aware of the effect on you and your health. It's a lovely thing to nurse and care for your elders, but it can be exhausting. We talk about it needing a village to raise a child, but we also need support when we are elderly and infirm too and I can't see one person being able to do that all in their own.

In addition you DM might benefit from anti-depressants. I have seen people with mild anxiety really benefit from taking those at any age

I agree you can care for someone you don't like.
There are millions of people performing roles we don't like, I've definitely had jobs like that, parents and teachers must do it all the time and nurses & police.
It's called professionalism and also humanity, everyone deserves to be treated well, even if they are/were un likeable