What are the next steps when elderly parents don't listen to a word you say?

[Barney16]

Hello everyone, I have posted before about my elderly parents and am looking for some more advice. Both mum and dad are elderly but my dad's health has really taken a turn for the worse. His mobility is very poor, he can get upstairs, get into bed and dress himself but with a great deal of effort and often needs assistance. His main problem is his knee which can't be operated on and causes constant pain but generally he's very frail. He sits on the sofa in the living room all day except for rather laboured trips to the loo. Doesn't ever leave the house. He has recently started to fall. I got a message during the night to say he has fallen again. I suppose what I'm asking advice on is what's the logical next steps? Neither my mum or dad take any notice of anything I say, I have had brief conversations about carers but got no where. Do I just wait for a crisis? It seems so ridiculous to wait for something monumental to happen but they literally disregard me. Nicely, but most of the time I am literally wasting my breath.

Inform their GP. There is nothing else you can do.

This may be what you need. It can be rapid if necessary - and yes, you can phone and request this for your parent(s).

https://www.nhs.uk/social-care-and-support/help-from-social-services-and-charities/getting-a-needs-assessment/

Realistically, not much. I made myself a little bit mad trying to get DM to get a hearing test/cleaner/rid of the trip hazards. And that was after a huge crisis.
Now I protect my sanity and try not to worry too much.

Has he explored whether he can have a steroid injection into his knee? This might help him. My DM has it done 2-3 times a year. Her mobility is still poor but not being in constant pain helps her immensely.

Do you have any siblings who would have input into this situation?

It is a good idea to flag the concern with a GP, although it does depend on what kind of a practice you are dealing with and how your relatives interact with them (the text message 'Come and discuss cholesterol' type links that get sent out to my parents would have no effect).

You could flag up to the GP that he needs a falls assessment?

Might as well not have bothered to post - even though my advice comes from direct and recent experience …

You decide on your boundaries and tell them up front what support you’re able to offer them. You tell them you love them very much and want them to be safe. You say it’s time to start getting things in place for when they need it when they’re older (rather than saying they need it now). You organise a SS assessment to find out “what kind of help they want to consider”. Then you spend the rest of the time feeling guilty you’re not doing more, stressed that the next crisis is coming and angry that they’re acting like immature teenagers which their heads in the sand - this last sentence depends on how sensible they are.

I could have written this. My DM refuses hearing tests (very deaf - refuses to wear her aid ) eye tests (very poor vision , glasses are years old and the optician checks other things as we all know!) to get a walker, to get a cleaner , go to the dentist (I suspect t she’s struggling due to the state of her remaining teeth) ….

I get no where and she refuses to discuss anything and I don’t want her too upset and stressed so I’ve had to accept this is what she wants although I despair. It’s a slow car crash to a crisis. And everyone will wonder why an Earth all these issues weren’t addressed before .

sorry that was long - I need to vent once in a while.

It's great advice, but parents can also get around this - this also from direct experience.
In the phonecall made to them, to arrange the assessment, they had a conversation that said they did have aids on the stairs and outside door, they couldn't fit a shower in their bathroom because of the type of bath, and they did have a commode chair from the last time of a hospital admission. The person this would have affected most is very hard of hearing when on the phone, the other in the couple is very articulate, hates visitors, and was the speaker in the conversation.
The reality is that only one door has a banister, and the other has some nasty and slimy steps; only one side of the stairs, likewise, because the other wall is of chipboard, and neither of them have strength to get into the bath without a stool(!) or change the bed. They have looked into blue badge application but the online aspects are too much for them to deal with and they believe 'it's easier if you have been on benefits'. A GP or Physio's word, in a letter, would count for a lot to assist but they have to have got that together. I have said many times I will do the online work if they supply the evidence to scan.
So the phone conversation didn't result in a home based assessment. I don't know how it went but my guess is that they blocked it and their point of view of their needs and capacity succeeded in overriding mine.

Mmm … In my experience it has been the adult children who phoned and spoke to the assessment people, made the appointment and were present when they arrived at the parents’ home.

I did indeed, but as I said, a phone conversation in the interim overrode mine and it depends on what is shared.

Not everyone is like you or the people you see though. My parents won’t even open the door to me, let alone professionals who are trying to help.

Won’t let me phone, won’t let me make appointments, won’t let me help in any way. Just wants to sit there complaining about everyone and everything.

These people may be cantankerous and rude and unpleasant and fearful and whatever else, but they are entitled to live in the way they want to.

Help is there but if they don’t want it we cannot force them.

That does sound tough, @NoCommentingFromNowOn. Surely there’s someone they allow to cross the threshold - a cleaner, or neighbour, or the vicar? If not, how on earth will anyone know if something goes badly wrong?

Although, tbh, if they can still get to the front door (to deny entry!) they probably still have some energy and capability. But someone needs to be able to assess whether they might be a danger to themselves at any point.

Reading your post OP, I wonder about the message you got. Who is contacting you about falls in the night - are they calling you, or someone else? Are they expecting you to go there, to do something, to listen? Tbh I would say next steps depend a bit on what their current expectations and your involvement are.

i agree with Tilly that a care assessment is a really logical next step. Since the falls are changing in frequency, it would also make sense for their GP to refer them to a Falls Clinic.

So I think in your situation I would be a broken record about ‘I’m happy to contact social services, I can call them right now’ and one day, if the answer is anything other than a flat ‘no’ don’t wait or ask again, get on the phone. (I would be hoping for equipment, OT assessment and perhaps a physio review). Likewise I would tell rather than ask them that you are going to write a short note to their GP about the increase in falls. Actions that you take are your own business, they can’t stop you writing, even if they say no as soon as the GP contacts them.

In my experience the social worker made the appointment directly with mum and didn't get back to me until after they'd been round and told me how wonderfully mum is getting on. Except she'd told them she goes to a weekly social activity that had stopped running a year before, that she does all her own housework (has a cleaner 3 hours a week for a four room bungalow), does all her banking on the computer ( has never done internet banking in her life and DB looks after her finances and insurance), takes herself to the supermarket (I have to take her or she lives out of the small corner shop), doesn't smoke or drink (lies).

@Barney16 - also, come on over to the Cockroach cafe where you can have a vent when you need to about not being allowed to help and being made to watch the oncoming crisis in slow motion.

Do you have POA? Do they have living wills?

It is terrible but in this instance you have two choices -
a) wait for the crisis and find out yourself what the choices will be then so you can just crack on or;
b) be pretty frank and brutal about it. Falls are increasing, they won't engage with you to get assistance in place so they can stay at home [which most want to do. - "I'll leave in a box etc"] so when the crisis comes, which it will unless they pass in their sleep [again, probably hoping for that], they will likely hurt themselves to the point that they are hospitalised and may never come home because the opportunity has passed to adapt the house, or have a trusted carer and they will be beyond your ability to care for.

My situation is a bit different because it came from terminal illness but my remaining parent just dug in, refused to do anything until hospital and end of life care were the only options. All our lives we'd heard "only leaving here in a box" but at some point that shifted to "I'm not changing my house, I don't want live in care - so when I leave, I leave". It was quite upsetting as we'd spent months trying to sort care options but when it came to it we had entirely wasted our breath and time and energy and it took us all a while to reconcile to this new reality that terminal hospice care was the preferred option in the end.

So while your parents have capacity, the only thing I can recommend is that you take it as it comes and feel no guilt about the position they will put you in through their intransigence because it's a situation of their own making and they may be perfectly happy to accept it.

You can only help those who want to be helped. 💐

Yes you wait for the crisis. And this is coming from someone who is currently dealing with the crisis - which actually feels like a relief even though it's horrible. It's shit isn't it. Good luck!

I think you need to be clear that you can't give night care. They need a wearable button to call for help and a key safe. It's only by refusing to do everything that they may accept help. Even if they pose it as your fault and how awful you are, don't fall for it.

Some great advice here op. I know it’s hard to wait and the guilt gets worse when medical / care professionals clearly think ‘why haven’t you done xyz like a dutiful daughter would ?’ when you have literally had refusal to everything because are in denial or lack insight into their needs (and likely don’t understand that you cannot drop all your other commitments and sacrifice your own life to rescue them).

@HarryVanderspeigle is right that you have to have boundaries about things like incidents in the night - you need to look after yourself first or you will burn out - and they need to consider what they would do if you were ill or unavailable.

Very sage advice, thank you for all your replies, I have been at work, so apologies for not coming back sooner. I checked and my dad has had an assessment, it was framed originally as a chat with someone who came round which is why I didn't mention it originally. The suggestions were a stair lift, parents aren't going for that because "it would be very difficult to fit one on our stairs" having a bed downstairs "there isn't room for a bed downstairs". There was discussion about him using the special recliner chair they already have but he fell out of that a little while ago so " that's not really an option". He did agree to a special cushion to sit on. If I wasn't living this total weirdness I would honestly assume it was made up. I do have POA but I may as well use that to write a shopping list on because they have capacity and as I said in my OP they take no notice of anything I say. It's all so bizarre and sort of upsetting.

No help @Barney16but I feel your pain. Me and my sister sat in a 2 hour meeting with my parents and adult social care last week after my mum, with alcoholic dementia, was referred to them by 111 after accidentally overdosing on antihistamines due to memory issues. She’d already visited last week where they presented well, refused everything and said everything was fine.

SW wanted us present to try and persuade them otherwise. This wasn’t the first time they’d attempted a needs assessment after a third party referral but the first time we’d been asked to attend. However the result was the same as always. My mother denied everything and my Dad who is the victim of a coercive controlling relationship backs her up. Ultimately the outcome was that, yes they need more support but as they are deemed to have capacity we/they can’t force them to accept it. My mother refuses to give up drinking so MH services won’t do anything re her memory issues which is central to the problems we experience.

As I’ve said to my sister really the only thing we can do is wait for a crisis to occur that no one can paper over. It’s not ideal but it is what it is.

That's very sad and I send you my very best wishes. The whole thing sounds very frustrating.

I hope you are ok, yes it's awful. It's frustrating,annoying and upsetting all at the same time.