AIBU to insist on a respite care stay?

[ApparentlyIsMyCircusAndMyMonkeys]

DM is 80, moved 6months ago closer to me as becoming more and more reliant. She’s now in a lovely retirement flat (independent living set up, so no carers on site, but a property manager Mon-Fri 9-5). Found the move very stressful and difficult (I did it all - found new properties to view, cleared whole house, instructed solicitors and managed agents and moving team etc, but appreciate it’s a big change at that age) but now more or less settled in.

In the past 6 weeks, she’s had a heart attack, followed by 3 further 999 calls due to chest pain. The heart attack lead to a hospital stay of approximately 1 week plus a regime of daily medication (something new to her) that she’s struggled to get her head around, so my DSis and I have taken charge of that with pill boxes, tick sheets and general checking in with phone calls and visits to make sure she’s taking the right stuff at the right time. She’s also stayed with each of us for a week since it happened.

The side effects of the have been bad so there’s been a lot of adjusting it or taking a minimal dose. Issue is that then she doesn’t have enough in her system to prevent angina attacks, which feel to her like heart attacks again (hence subsequent paramedic call outs). Two of those resulted in A&E visits (hours and hours waiting in corridor - wonderful staff but system completely broken etc) both times I’ve accompanied her throughout to keep her calm and help her navigate it (mild memory issues and rarely has hearing aids in!). This morning my sister was visiting and she had another angina attack so called 999. Paramedics came and assessed her, recommended hospital but she chose not to go as pain had subsided by then. I’ve now taken over from DSis who had to get back to her kids. I had plans with my family today but could more easily opt out.

So now I’m stuck here all day again (poss overnight) as needs someone around in case she feels ill again. But meanwhile has been able to get up, make sandwich, potter about etc, as if nothing happened.

So here’s my AIBU: given that when she is feeling ok, she doesn’t need much help; would it be unreasonable to insist she goes into respite care at a local nursing home while this medication issue is sorted out? Staying with either DSis or I is not an option (both done it before and too stressful due to SEN kids and work). My empathy is waining and I think she just needs to accept that this is what happens when you’re old and unwell - you have to be looked after by professionals. We took her to see one a few weeks ago and she didn’t like it (long story) so wouldn’t be that same one, but there’s another one nearby that I think she would prefer. Fortunately finances are there to allow for this for a temporary stay.

Has anyone done this and found it helpful? Or did you end up responding to lots of complaining phone calls from the person instead? I guess I’m hoping she’ll get there and they’ll be better placed to help her manage meds and adjust them with direct contact to gp etc, and then should she need more care in future, she’s familiar with somewhere already.

Can’t get any local carers to come in (none available in our location) and the problem is these angina attacks are totally unpredictable so feels like she needs help on hand 24/7 at the moment until the meds are sorted and it’s stabilised.

Thanks if you’ve made it this far and have any insights to share. None of my friends are going through this as their parents are much younger/ in better health. No DF on the scene - left 40yrs ago and she’s still bitter about that too!

Does she take her gtn spray straight away when this pain strikes?

No - she calls me and I have to remind her to do so. I can then usually be at her flat within 5mins to oversee next dose / call for more help etc.

Well yes, you can insist but what will you do if she says no?

It can seem a fabulous idea, but they arranged this for my Grandad, he was supposed to be there Alfie 6weeks then come home. He died the evening after they moved him to the nursing home.

Good question. I think she would reluctantly comply this time, as there have been 2 x 999 calls in the past 3 days. So she can see it’s not sustainable… and know she feels guilty about the impact on DSis and I.

But if she refuses, I either have to keep dropping everything when she calls, and therefore damage work and my own family relations. Or, stop leaping into action, let her navigate A&E alone and see what happens then… feels like a no-win situation!

We never had quite this situation but certainly found short-term stationary geriatric care helpful with my dad. Be aware though that the more you shuffle them around at this age can also cause disorientation, even in somebody who's bright as a pin and without the slightest trace of dementia.

I’m sorry for your loss.

Thanks - that’s a good point. Her meds cause a bit of confusion so that’s bound to increase I suppose.
Does stationary care mean people coming into see her at home? Would love to have this but nothing available in the immediate term.

I’m not sure that respite care will teach her how to manage her own medicines, unfortunately. One of the reasons my DM ended up in a care home is because she couldn’t remember to take her medicines, or what they were for. Once she was there, being reliably medicated, properly hydrated and fed, she was like a new woman.

For her too it was initially for a 6 week stay following a couple of weeks in hospital, but a month at home undid all the good work. She fell and ended up in hospital again, and then decided to move into the care home permanently. She lived for another four and a half years, with only the barest traces of cognitive decline, and died from cancer in the end.

Thanks for sharing- this is really helpful.
I wouldn’t be massively surprised if it became clear a permanent relocation into a nursing home would be the best bet. I can’t envisage her ever wanting to do that, but if she did it would be a massive relief knowing it was a decision she made.
I think she should have made this move into the place she’s in now several years ago when she was generally in better health, no memory issues and more energy and confidence to get to know other residents and build a social life here. She’s avoided all opportunities to do that since she got here…Perhaps this is the same thing happening again - she needs more support but won’t accept it yet.

It sounds like you must encourage her towards a care home. Certainly immediately for respite and then hopefully she will accept that she does need that level of care in the long term.
I have discovered that it is best to act quickly before a crisis develops. Once in a crisis position many of the choices available are taken out of the hands of the elderly person, could you explain this to your mum?
Good luck!

I’m sorry if I can across as blunt in my earlier reply. It is just still quite raw and I can’t help but think the move to respite was a factor in grandad’s death.

No need to apologise- it must have been an awful shock. Can understand your concern about care homes as a result of what happened x

Thank you, this is such a good point. I feel like either she’ll end up in A&E again imminently or I’ll lose my marbles if we don’t at least try something different. And the point about having choice is really valid.
My DSis is v onboard, so I think we’ll call the place we’ve seen and check if they could have her, then go on the hard sell to convince her. Thanks again!

It’s an awful position to be in.
It is best to act quickly. I did not with my dad and left the decision to him - he deferred for too long and by the time he really needed a care home the choice was out of his hands.
He spent his final days in a care home that wouldn’t have been his choice but which was the only one which would accept him.
He was self funding too.
My mum learned from dad’s experience and made the choices for herself before it was strictly necessary.
She lives now in a sort of half way house between a nursing home and sheltered housing.
She is very happy fortunately.
I do hope your mum can be guided towards the right choice.

We have a kind of similar situation with my MIL at the moment, so you have my sympathies. We live abroad so can't dash round at short notice, but we do get a lot of calls from her and are constantly trying to deal with problems from afar.

If you do the respite care, just make sure they have time and resources to actually work on the medication problem and try to get her on appropriate doses. My MIL has carers at home who also work some shifts in nursing homes and they say they are run off their feet in the care homes. MIL is mentally pretty good for someone in her late 80s but also struggles with meds, and often won't comply or persevere because of side effects. She has just been admitted to hospital again (DH is a little bit relieved because we have fewer calls to deal with!).

About the dying in care - two of my grandparents who were being cared for at home died in hospital/respite care. My dad died during the night in hospital after the family had been with him all day. I've heard that sometimes it's a an unconscious choice by the sick person. Your mum doesn't sound like she's at that stage though.

Does she have the meds in a blister pack. It might be easier for her to take them that way. If she's never been on medication before, she may be experiencing side effects.

Continue to look for carers/care agencies.

You can't force her into respite if she doesn't want to go but just work on gentle persuasion.