How to support elderly parents who refuse help and future planning

[Swallowsflight]

What do you do when your parents say no everything you suggest or offer them to make their lives easier. They don't want outside carers or a stair lift. They insist on sitting in the hottest rooms in the house and opening the curtains, even when I suggest to keep them closed until the sun goes down. They resist all support and yet constantly tell everyone how I'm very busy with my own life and family for them to bother me. One of them is heading into renal failure imminently and just refuses to discuss it and plan for the future, apart from wanting to avoid hospital at all costs. I feel like they want my help but they won't accept my suggestions. I'm not sure if they just me to be their carer? And maybe they are sad that I won't give up things to do that. I already do a lot for them regarding finances, life admin and looking after house but I can't be there everyday, not least because I find the fact they don't take any advice absolutely frustrating. They are in a good financial position to get any equipment or care they need without worry. I just don't know what to do next. At their next medical appointment, I know they won't want me to be honest with the consultant about how their function is declining, but I feel I must.

Let Them.
I know it's a bit of a debunked theory with the whole Mel Robbins thing, but it was quite helpful for me.
You can't fix them, change them or make them live the way you think they should.
You can offer the help you are able to, but if they don't want it that's their choice. You can't give up your life for them, unless you genuinely want to, and few of us do.

I agree.

My mum refused everything external yet slagged me off as 'too busy' to help (single solo parent, full time job etc etc). Refused gardening help, housework help, food had to be made from scratch, refused to do any sort of POA or will.

My dad and stepmum have future-proofed themselves already which I'm immensely grateful for. Downsizing to a supported flat, poa in place, wills written and shared. Happy to listen to advice and have implemented some already.

Let them op. Make sure your own oxygen mask is on before you start on theirs

I agree. If they absolutely refuse all suggestions you eventually have to choose between putting yourself in an early grave or letting them fail.

It sounds as though you’re doing a lot for them already.

Do they have Respect Forms filled out? If the DP with renal failure wants to avoid Hospital they probably need that on their Respect Form.

Tou have my sympathy. It’s really hard watching someone you love going headlong into a car crash but at some point you have to realise that if they have cognition then this is the choice they are making.

Sometimes there isn't very much you can do. It's hard to watch them deteriorating and struggling but to a certain point you have to let them get on with it.

But you are right to draw a line in the sand as to how much you are willing to do for them. I was prepared to do all the financial admin and arrange care for my mother, I was absolutely not prepared to do hands on care myself.

Do you think that in addition to their physical problems there are also cognitive issues?

Do you have LPA for one/both of them? If not, there really isn't anything you can do other than strongly suggest. But if you have LPA, you can make decisions in their best interests.

It does sound as if there is a bit of a tug of war going on.

Has this been triggered by some third party getting in touch and saying you ought to ‘do more’ or ‘do something’? Who are your parents telling all this to about how busy you are?

If so… that third party feels better because they have ‘done something’, ie give you a non specific hard time, and they have offloaded the worry to you.

It sounds as if the one going into renal failure will want you to call the GP if things deteriorate. You could ask if they want that? Or do they just want to expire slowly with no medical support? (I would call the GP whatever tbh but the chances are if the GP says they will have to go to hospital they will give in).

Im not sure there is a way to get through this stage unbruised and unbowed. It’s really hard. You have to keep track of your own needs and priorities too.

Old people can be unbelievably stubborn in refusing help, especially any from non-family, that they have to pay for.
Sometimes you can only let them get on with it, and wait for the almost inevitable crisis to eventually occur.

I’ve known of 2 cases - both old men doing their valiant best to care for wives with dementia, but refusing all help - where the crisis point did occur. One simply collapsed completely with exhaustion, so much so that although he was able to phone for help, he couldn’t get to the front door to open it - the emergency services had to break in. Once recovered he visited his wife every single day in her care home - the one where my DM also stayed.

The other, an old neighbour of dh’s parents, fell and broke a hip, so he and his wife ended up in different care homes. The old chap told dh that he really wished they’d made the moves earlier - he was enjoying life again. But sadly he lived for only a few more months.

It’s all very difficult unfortunately and it’s a big problem, I never came to terms with the fact that my mum virtually refused everything I ever suggested.
She lived in a first floor flat with a stairlift, one day she had a dizzy turn and fell she was found at the bottom of the stairs by a relative, long story short she had a brain haemorrhage, spent a while in hospital but then insisted she went home again there was nothing I could do to stop her. I spent the next two years, until she died fretting and having nightmares about the stairs. Really impacted my life at the time.
You have to decide how much you’re going to worry / do for them and then get on with your own life. Not easy at all.
Good luck

Leave them to it. Those of us without kids will just have to deal with all this stuff ourselves, as we get older, so why can't your parents? They may be making bad choices, but they are allowed to do so - it's their lives. Things may change if and when a crisis occurs but, until then, just take several steps back.

They are allowed to do so because mental capacity but that doesnt stop (some) professionals moaning at family members when they do. They seem to be under the impression that family members have some sort of magic wand to make a deaf elderly relative hear them (when the professional cant) despite said relative refusing a hearing aid. Apparently the state thinks family members can work miracles where professionals cant despite the state bringing in the mental capacity laws in the first place!!!

I have been in your position. We could only get carers in when Dad had a fall and Mum accepted that he had dementia. When he passed away we kept short carer visits for her welfare checks. We could see the amount of confusion in her increasing. She didn’t like it but the visits had become a bit routine. The visits have slowly increased in terms of what carers have done.

She had a number of recent falls and now is in a care home for rehab. We have said that if she gets stronger she can move back, but this is unlikely.

So it has been around medical need that we have been able to gradually increase the amount of support. This has always been with her safety at the forefront. She would still be at home with us monitoring the cameras and keeping up the monthly visits if we thought she was safe. She was not.

If not in place, I would beg you to get POA for finance and Health and Welfare. We have had POA forms signed for years. Both parents also had respect forms. Dad was sensible like that. This was really important to me when I was asked about giving my very sick father an invasive treatment. I was able to refuse and knew I was respecting his wishes.

POA was really important in keeping Mum in the home when NHS staff would have discharged her. Goodness knows what planet the staff were on. Maybe they listened to her a little too much. (After one of her falls we had watched her on the camera telling the ambulance dispatcher that her daughters were upstairs. Mum lives in a bungalow, one daughter is a three hour drive away and one needs a three hour flight plus a long drive to get to her).

So with POA we were able to override her stated wishes. This was not nice - but her saying “ don’t worry about me, I’m fine” is not living in the real world. The stress and worry has been making me ill. She doesn’t understand if I try to say that. The way she talks, she is describing what she was doing ten years ago.

I’m no longer kept awake half the night listening to the camera pinging watching Mum wander around the house not responding to me shouting to her to go back to bed. Such a relief.

I have waffled for too long, but I have tried to share real examples. I suspect the heat wave has been a major concern for you. I really feel for you.

Like previous posts have stated, at the end of the day you cannot do more. That generation were stubborn and proud. Care homes used to be quite grim so I get the fear.

You have to be realistic in what you can do - and you have to be kind to yourself. You have a life to live too.

Make sure your own oxygen mask is on before you start on theirs

such a helpful piece of advice

Agree 100%. I would be insisting on a respect form completed by both parents individually with some third person Such as a practice nurse.

From someone that spent months/years worrying about both of my parents for similar reasons:

Focus on what you can control.

Try to let go of what you can't - the resentment & frustration will only make you feel worse.

Inevitably, at some point, the shit will hit the fan. At this point, your parent/s will have no choice but to accept help.

Take care of yourself. It's very difficult to watch someone you love make choices that don't make sense to you. But they are their choices, regardless.

I could have written this thread.

There are no answers. I’m currently in the middle of this shit storm.

When they are deemed to have capacity but you are just waiting for a crisis point to be reached or another fall.

There’s so much to sort out and we can’t go on like this forever. My parents are 85 and 90. No will, no POA and a brother who decided to stop taking his medication for schizophrenia 4 years ago thrown into the mix.

For the sake of my own sanity I have had to step back. All I can do is be there to pick up the pieces in the future.

I'm right in the middle of this at the moment. I do not want to be DM primary carer as I live too far away and have my own life/work.

DM health has declined rapidly in last 4 months but we have no clear diagnosis as to why she is so ill. She can no longer go out or shop for herself and is struggling with housework. She is reluctant to return to the doctor, is refusing recommended painkillers, and resolutely against carers or food deliveries. She was planning to move to sheltered accommodation nearer to me but cannot sell her house in the current market. In any case I think she will now need to rethink whether she needs more intensive support than just sheltered.

I am on the cusp of contacting her GP to explain my concerns because I am certain that the GP has not got a full picture of all her symptoms and the seriousness of her decline. There is POA drawn up but not activated but DM has capacity so I can't force her to do anything, just raise concerns and not be sucked into more and more visits every week.

That sounds exhausting, and I recognise a lot of this — the bit that got me was "I already do a lot for them... but I can't be there everyday." That's the whole problem in one sentence, isn't it. You can manage the admin and the finances from a distance, but you can't manage the not-knowing.
On the consultant appointment — I'd go with honesty. Not to override them, just because a doctor working from an inaccurate picture can't actually help them avoid hospital, which is the one thing they say they want. You can frame it gently in front of them ("I want to make sure Dr X has the full picture so we can keep you out of hospital") rather than behind their back, which might feel less like a betrayal to them.
On the refusing help generally — we went through something similar with my own mam, and the thing that actually shifted things wasn't persuasion, it was a crisis making the decision for her. Which I know isn't what you want to hear. Until then, honestly, the only thing you can control is where you draw your own line on what you're willing to do — it sounds like you've already found some of that line and feel guilty about it, which you shouldn't.
Has the renal team given you any sense of timeline, or are you flying blind on that too?

There’s nothing you can do unfortunately. They’ve made choices, and choices have consequences.

I do not think it is stubbornness. Getting old is bloody scary, and watching all that is meaningful in your life drift inexorably out of reach is hell. That many older people try to desperately cling onto some sense of normality and familiarity is not at all surprising.

You can make suggestions but you cannot make them do or not do anything. As long as they have mental capacity (even if it is not quite what it once was) they have the right to make their own decisions.

Work out for yourself how much and what you think is reasonable for you to do for them. And just do that.

Research the options for meeting any shortfall in terms of LA, NHS or voluntary organization (local Age UK, community transport etc.) help so that you have these solutions up your sleeve if they raise a problem and it is outside the parameters for your own involvement that you have set. There is more than one way of discharging what you might reasonably see as your responsibility to your parents and it does not always involve doing it yourself.

You are only responsible for doing your best within your own limitations, both emotional and practical.

They resist all support and yet constantly tell everyone how I'm very busy with my own life and family for them to bother me. It is important that you do not concern yourself with what they say to others and what those others might think. Those others will also know about elderly relatives and may not be as judgemental as you think.

I feel like they want my help but they won't accept my suggestions. I'm not sure if they just want me to be their carer? And maybe they are sad that I won't give up things to do that As someone who has disabilities and AC I would doubt that they do want you to become their carer. It is the last thing I want. I think that some of these thoughts stem from you feeling guilty that you cannot (nor indeed want) to be their carer.

As to your sensible suggestions that are ignored - you must ignore this and not let it exasperate you. They have the right to make decisions that you see as bonkers!

Absolutely agree that POA for health and finance are essential. Age UK will help you do them and will charge you very little. They have to be done while parents are capable. If left too late Social Services / Court of Protection will step in and you and they will have no say.
Mine are already done and in the box with my will, bank account info, life insurance and letter of wishes. Hopefully won't be needed for a while but I have peace of mind.

Agree re PofA - we did ours when in our 40s. They were a godsend when my OH sadly acquired a neuro-degenerative illness.

Exactly the same as my experience. Parents refuse all help unless it’s coming from me, tell everyone and anyone who will listen how I should do more. Despite having money to pay for care. And me being time starved and money poor. You can’t do anything. They just get worse with age and their expectations go up and up and their gratitude down and down. Decide what you are willing to do/sacrifice then stick to your boundaries hard. Very hard to do. Very hard not to feel guilt. After about a decade if you are like me, you’ll stop caring what they tell others about you.

As far as I'm aware there isn't a respect form filled out. I'm going to bring it up at the next renal appointment with the consultant. This is one of the things I'm really worried about, that they will end up dying in hospital rather at home as they want to.

I have finance lpa for both but not health and welfare. This was their choice. I'm not too sure of the reasons behind it because they won't discuss the topic of death or preparing for the worst.

I know I can't change things but I feel so responsible for them and I just want to make the time they have left the best quality for them but they seem to prefer to suffer on. I'm usually quite pragmatic and realise it's out of my hands but I can't bear to see suffering and I know things could be easier for them.

My partner and I will definitely be downsizing and taking responsibility for our own futures. It seems so alien to them that this is even something people consider doing.