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.

I guess the thing that has triggered it for me this time is knowing that eventually there will be a need for palliative care and I really hope they don't refuse it. I need the support even if they don't want it. I don't know how they think they can avoid hospital if they don't take steps to plan how to stay at home to die.

Thank you. I know this. I just needed to hear it. I feel guilty that I cannot convince them to make changes because I really think they would be happier with more support but maybe they are scared.

No sense of timeline from renal team because they are following his lead and he is telling them he is coping and doing OK. His numbers are not good. I think I'm going to have an honest conversation with the consultant about how much his function has decline the last couple of months. He doesn't want dialysis, which I respect but he will need medical support to reduce any potential unnecessary suffering.

@Swallowsflight it's the finance LPA which is the important one really.

My mother never did a health LPA either, I have no idea why, but doctors et al all said it made no difference and they still shared info with me.

Thank you, that's reassuring.

It's interesting as what you might see as "suffering on" might feel to them as though they are making a positive effort to keep going.
Would that we could see.inside each others' brains!

I do understand what you mean but unfortunately I think it's more a case of denial and mistrust of professionals. They are acting out of fear maybe rather than taking proactive steps to remain at home. Anyway, I know I can't change it. It's just very difficult for everyone else including me, to see.

My family is just weeks in to having have moved Mum to a care home. The massive relief that she is now safe even though it is against her wishes is tangible.

I have to say that telling GP was no help at all. Even telling the rehab team of concerns was no help. I said that Mum was not safe when left alone because she would get up, wander and fall. POA was what we had to refer to when they were ready to discharge her home. Guess what, this week the home are not letting her stay alone in her room at the moment because she is unwell with an infection (every couple of months). Had she gone back to her own home she would have got up without her mobility aids and been back in hospital after falling.

We are going against her wishes but she has to be safe.

So back to persuading your parents to get POA - you know their wishes better than a social worker who would be called in if they are deemed as not having capacity.

It is so hard.

How did you get her there "against her wishes"? No decent home would accept a resident under those circumstances.

How did you physically get here there if she did not wish to go? Even P of A does not allow you to do that if she is of sound mind.

You are relieved she is safe, but how does she feel? Adults of all ages choose to take risks that we might see as foolish, but unless they have lost mental capacity they have a right to make those choices.

I know it is hard. These are decisions that many here have had to deal with, including me. But elderly people still have rights and that is, as most people on here have acknowledged, the central dilemma. Relatives finish up with a burden of worry because of this principle.

Just to say I didn’t have POA. I had the help of a social worker, It was hard work getting everyone on side to believe mum wasn’t safe at home. But she went straight from hospital to a fully funded care home aged 92.
Such a relief to know she was never on her own, but she sadly passed away after six months, it was what she wanted.

We needed Mum and Dad to sign a consent form before we could speak to GPs. Once we had that in place access was no problem. You do need to explain to your mother that this will make things easier when you need to get appointments, you need to sort prescriptions etc.

There are forms to fill in but once done you can play your part

I’m glad your Mum got the support she needed even without POA. Social worker agreeing must have been reassuring that you were doing the right thing.

Just let them get on with it . Honestly these pages are littered with people struggling to help parents who don’t want help , refuse to see they need help , have no money for help or haven’t planned anything for their older age .

Just joining in with the let them. It's incredibly hard as all those of us that have been there can attest to. Whilst they are in denial which often just works out as you should do it you can only set strong boundaries as to what you will and won't do. I started doing housework bits of shopping dog walk drives to appointments but it became so much. I started with getting home helps in for cleaning which was a huge battle. This progressed to daily help, nurse visits to shower then on line shopping bills to DD as paying by cheque got too hard and a couple of defaults scared them into getting the internet and letting me manage bills online.

Every step a battle between their desire for independence and my refusal to enable them to believe they were independent when actually I was doing everything. My husband describes our remaining parents as like herding drunk toddlers.

Honestly - it will be some life changing event that will force some sort of change. My late parents continued to live in the family home - too big - large garden no downstairs toilet. Suggested to my parents they move. Took my Dad's ill health and death for my Mum to move to a more suitable house.

I'm in a similar situation, parents late 80's, dad severely disabled from a stroke but mentally ok and mum declining at a rate of knots with dementia (undiagnosed because she refuses to see a doctor). She is his carer but it's becoming untenable however they refuse to have any help other than myself and siblings. Neither can look after themselves on their own or together for much longer and we don't know what to do anymore.

Do social services ever step in and remove people from their homes when they are unsafe to be there?

Yes but you need to report them. My disabled wheelchair bound father was trying to care for my house bound doubly incontinent mother. I spoke to a community nurse on a visit (I live 5 hours away) and she reported it to adult social services for me After a year of tooing and froing to A and E hospital home and back the social worker and I ganged up on the hospital and declared it an unsafe discharge. The social worker told me exactly what to say and it was still really difficult as apparently she had 'capacity'. With stage 2 Alzheimer's incontinent and bed ridden the hospital still tried to send her home but the social worker told me to ask for the ambulance driver to do a quick home check before they dropped her off. He spoke to my dad and me and just told the hospital absolutely not. Be prepared to fight tooth and nail to put your frail elderly vulnerable parent in a home against their wishes. It's the worst and best thing I've ever done. The social worker was brilliant with setting up community care getting them sorted with benefits and they listened to her in a way they would never listen to me

You can email her GP and say that you’re worried about her de line in cognition and ability to look after both herself and your DF. You have to make it clear that you aren’t after information as you know they can’t give any but, and this is the important bit, you need to say that you want to avoid unnecessary Hospital admissions for both your DM and your DF.

Ive done this a few times with different relatives and the GP has them called them in under some pretext, like a medication review and they’ve happily gone along because it’s the Doctor asking to see them not you.

There is nothing you can do if they have capacity. My very elderly parents both refuse any outside help whatsoever despite them both being incredibly frail and numerous health issues.
When mum has had falls a carer is arranged by the hospital. They will put up with this for a day or so, then say they no longer need them!
They refuse a cleaner or any help from family or neighbours.

I have spoken to their GP about getting help. GP couldn't help much apart from listen to me as there are no POA in place [ something else they refuse ]. All GP has done is to put a marker on their records to keep an eye on them.

I have had many conversations with them about getting outside help. I now have had to take a step back for my own sanity and let them get on with it.

LPA for health has made a difference for my parents. It has meant that we could refuse mum going back to her home (as the care team suggested with four carer visits, 2 carers at a time) and stay in residential care because she was not safe (the opposite of your case). Being “unsafe” was that she would not reliably stay in her chair when the carers were not there. She has already started trying in the residence - 3 weeks into her stay.

It also meant that I could refuse drs suggestion of dialysis for my 94 yr old unwell father. His respect form had stated “no new interventions” so I knew it was his wishes.

I think it makes things quicker and smoother.

Good luck

Thank you for your reply. I do have the health LPA but hadn't realised I could use it in such circumstances so I will look into that. My siblings and I are going to have another chat with them and after that step away because the only way they will realise they need help is if we don't give them any harsh as it sounds.

I have a friend with a mother in her 80s. Her mother lives in a big family home with a garden a few miles from the nearest town. About 15 years ago my friend suggested to her mother that she should sell this house and move into a smaller house in town. Her mother was unhappy with this suggestion and refused to do this.
A few years ago her mother had had a fall that resulted in a broken hip. She required several weeks of help and my friend did the majority of this. Her siblings were quite happy to leave her doing this.
Along with this my friend has been doing various little jobs for years to help her mother out.

Her mother now has some cogative decline and needs more help with certain things. She is repeating herself at times. She told someone information that my friend wanted to be kept private. Her mother then just brushed it off when my friend said why did you do this. Her mother has moaned for years if my friend asks her for any help.

Her mother has refused to listen to advice for years. She has nothing put in place for this stage of her life that would make things easier if she needs more help.

After a few things recently my friend has decided she had enough. She has started to make plans so she won't be as available going forward. She can see that her mother is going to need more help in time. Her mother does not want to go into a nursing home but thinks my friend will just move in and provide all the care she needs.
The reality is that my friend won't be available for this. Her siblings will have to step up and help out when the next crisis happens. They are also going to have to sort out and pay for carers if required.