Care at home for someone who has lost most mobility - any experiences of making this work?

[DinahCat]

Mum is 93 and very frail but until now she has had enough mobility to get herself into the loo, to the kettle to make a cuppa, and upstairs on the stairlift.

However she has been in hospital for a week now with an overwhelming infection and can barely support her own weight. She is also confused (delirium according to the staff here) though this is now easing. Memory however seems pretty shot.

She will soon be medically fit for discharge but obviously needs comprehensive nusring/social type support (only moveable with a sara stedy etc)

My guess (OT has not yet assessed but we expect it to happen next week) is that they might refer her to what is laughably known as "reablement" in the community hospital (around 40 mins away).

She was sent there last year on discharge from the acute hospital (broken shoulder and generally bashed about after nasty fall, and tbf stated out similarly weak) and the total of 6 weeks in hospital definitely left her with reduced mental and physical capacity (it was only then that she had to have care/use a stick indoors etc - and she stopped using her bed and moved to the riser recliner)

This time ideally I'd like to see her home sooner but I don't know how her personal care would be managed. Do they supply anything like a sara stedy for home use? Would regular "food prep washing and toileting" carers be able to use one or is that officially "nursing".

I'm not expecting answers to these questions specifically so much as hoping people might have their own different experiences to share, of fairly intensive care delivered at home, what was provided, what worked/didn't and (😭😭) what did it cost?

Thank you 🙏🙏

Oh the call button …. Mum always complains that the staff ignore her. Then when I have been at the home the button seems to have slipped too far away for her to reach. BUT when I have given her the call button to use she has put it to her ear like a phone. Then when staff ask her if she wants the bathroom she refuses. 30 minutes later when they are in the middle of serving a meal she needs the bathroom (takes two people) and complains that no one answers the call button that she surely didn’t use anyway.

No one’s fault. Staff need to give out meals. Mum doesn’t know how to plan when staff do their tasks.

Being in her own home would not have helped because she would have been alone between visits. Her dementia is so hard.

@Ilovemyfam and @Nat6999 I can absolutely anticipate these all being issues with Mum too. Part of me wants to done everything possible to bring her home - not least because she misses her riser recliner so much, and hospital just won't give her one (they just tell me they are all 'in use')

But realistically she needs someone there 24/7 and probably people in pairs 4 times a day. Plus one of us there frequently to check the arrangement is workt, as she is pretty much unable to communicate on the phone now (unlike last time she was home from hospital with a new care arrangement)

I have now been away from home and work for 9 days and I m exhausted - the other poa lives a bit nearer but has cfs so has to be very careful with their reserves. I can see that for Mum to have what she wants would require a desperately unsustainable level of input from us both.

She still.sems.really unwell..If she was clearly EOL we would pull out all the stops but I don't think she is (despite the fact she has hinted that she wishes she was :/) - but on the other hand I can't see her getting stronger either, especially as she has so little appetite.

Ugh. I am starting to realise there is unlikely to be a good answer to this. As Mum herself has been saying, "it's a mess"

@DinahCat if your mum is realising that "it's a mess", then she probably has in some way recognised that she's not likely to be going home to her recliner or how it was "before the hospital". I think you've realised that too, especially since you and your sibling really don't have the capacity to fill in all the gaps. I wish you well in finding a suitable place for your DM.

Thanks @SylvanMoon , I think you're probably right. She seems to be declining still cognitively versus even a couple of says ago - despite being more lucid "in the moment" she can't retain anything new whatsoever 😢

She's also saying (quite calmly) "I don't see myself getting any better. I don't want to be"

Then five minutes later I ask if she wants a yoghurt and tiday for the first time she said "umm I'm just trying to remember what a yoghurt is"

Which is a new one 🙁🙁

Check she doesn’t have a UTI that can present as confusion.

Talk to the OT, as long as there is space it should be feasible to aim home with the Sara steady or whatever the appropriate equipment is. They can be used singlehandedly if appropriate for that patient which would help with the care. Consider if mum has any overnight needs (generally toileting/pad change/agitation overnight) as that can make returning home difficult.

Sorry you're going through this. If she had a care home I wondered if she could have her riser chair in the room? It might help bridge it a little.

We are currently looking at a home a friend of the family went to locally , where she was able to have her iwn chair - so it may possible and might be the best compromise.

My mother was in a care home and when her mobility and cognition was severely affected the care home supplied a riser recliner bed. It lowered to the floor so that if she rolled out of bed she wouldn't injure herself, and it raised up so the carers could transfer her to a chair and do any necessary personal care.

I think a good care home will provide your mother with whatever aids are best suited to her needs. I am glad you are looking at care homes now, as I think at-home care would be unsustainable.

Frequent UTIs really scrambled Mums brain but she has also deteriorated quickly. One of her recent observations is that the care staff have bottles of alcohol in the home and they are hung over daily! No idea where she got that from.

She also frequently wishes she was not still alive. It is sad but it is what it is. The home is the best place for her because being at her own home was not sustainable. I hope you get as good a place as you can.

That sounds ideal.tbh - thank you so much for sharing that. Doctor friend has advised me to ask to talk to palliative care team, as physical comfort (and peace) feel like the priorities now

So grateful for everyone 's input on this thread, it's really helping me to understand what out options are, and clarify my thoughts ❤️❤️

I seriously doubt that would qualify for CHC.

My mother was literally pronounced end of life / no longer eating and she died on the day of the CHC panel and was still refused.

CHC is rarely given the whole thing is ridiculous.

Thanks @Noras . It now turns out that as well as an overwhelming infection (that they think began in an infected surgical wound), she has had a stroke, one side of her vision gone and also unable to create new memories so has no idea what she's just been told.

Unlikely to be recoverable as only diagnosed 10.days after original admission. So that's fun 😬. On the other hand she walked a few steps.today! So all bets are off really....

@Noras agree CHC is a joke. My mother from diagnosis to death from primary brain cancer 4 months. Turned down for CHC twice

I got this for my late OH on appeal, and I was involved in the system as an adult services social worker.
The fact that some people's parents did not get it does not mean they did not qualify .... it means that the people advising them don't have a clue what they are doing. This is why I advised contacting Beacon as they can ensure that people go into the process armed with the correct information and ready to fight their corner.
My OH was refused twice, but because I knew the system I was able to challenge them and launch an appeal. I received the money in retrospect after he died. By that time I had already sold our home to fund his care.
Talk to www.beaconchc and get the facts.
It makes me furious that people are being told rubbish. I have heard so much of it.
The system is totally flawed.

I’m sorry to hear your update @DinahCat
i Hope you find the right care for your mother.

So sorry @DinahCat, especially the recent diagnosis. In case this is helpful for you, or one coming later to this thread I wanted to share a different perspective.

DF was discharged last year with barely any mobility, in similar circumstances to what you describe after a disastrous prolonged stay in an under resourced cottage hospital following a fall. He had a hospital bed, riser recliner and Sara stedy and various other bits and pieces of OT equipment. He was adamant he wanted to stay at home.

one carer is able to transfer him to the Sara stedy for cleaning purposes and commode. He has calls 3 times a day although DM is also in the house but has various issues herself that mean she isn’t waiting on him hand and foot. he is paying for care.

Remarkably, he seems to be able to be in the riser recliner the whole time and not had any pressure sores. They occurred previously when he was using the hospital bed though, which I don’t really understand why that would be different with the chair. The carers take him outside in wheelchair.

I wouldn’t pretend that this is any kind of life, but given he didn’t want to be in a care home or separated from DM it is the best we can manage. I just wanted to make the point that the care is possible with one carer if they know what they are doing. Not all of his carers are that confident about moving him and generally don’t unaccompanied, but the more experienced ones can manage it solo.

Ah, thanks @AddledPeacock , our.experience in the community hospital was not great either when mum fell last year.

If mum could support her weight reliably I think this might have worked (and she has been really comfortable sitting and sleeping in her chair for a year with no issues)

But she remains weak, and has almost no interest in eating. She still needs two people to move her.

The other issue of course is that there is noone there otherwise, not only to be conpany/bring drinks and food, make phone calls etc but just generally run the house..And mum simply isn't going to be able to do any of that - she was starting to struggle before this and it was already a lot for me and fellow poa, but now she won't be able to do a thing, or help herself in any way.

We're in an absolute vind, because while she probably won't wver recover much capacity/ability her best hopes of doing so would be at home. But unless she regains that capacity/ability, we can't see how she can be cared for satisfactorily. Just little things like the tiny threshold (2cm) that would need to be crossed on the sara stedy to get her to the bathroom.

Re the bed sores, I can't help wonder if lying on a plastic mattress with just one sheet between it and skin in a hot sweaty hospital might have contributed, likewise lying in a soaked nappy 😕.

Ugh it's just a desperate situation. If she was at home I think she'd know where she was, as it is - and similarly if she were in a care home, I think she would just keep asking....

It's all so bleak 😔

Mum is apparently "end of life" though this has not been mentioned again since the day after admission (when the somewhat ambitious geriatrician though she could be discharged with hospital at home and "some care if she needs it" ....

I don't know what that was about but wondering what "end of life" actually means??

My mother was supposedly 'end of life' two years before she actually died. Like your mum, she had a small stroke. She was already in a care home at that point and it was agreed she would not go to hospital. The GP supplied the 'Just in Case" pack (which is the end of life pack) and we did the RESPECT forms. She then recovered to her (very low) baseline, and lived another two years.

That is a fairly extreme example, but end of life doesn't necessarily mean the person will die within a fortnight.

If it becomes possible to move her, your mother would probably be a lot more comfortable in a care home, as a hospital is a loud and confusing place for someone with her issues.

It Sounds like she needs a nursing home tbh, unless you are able to provide 24 hour care at home.

Even with a full care package it won’t be enough to regularly reposition her (to avoid getting pressure ulcers), get her to the toilet if she needs to go, sort out a spilt drink or help her if she falls.

End of life means they think your mum is coming towards the end of her natural life and they want to get an end of life care plan in place. This usually includes a TEP form (this will state whether to resuscitate your mum or send her to hospital for iv antibiotics etc). It doesn’t mean your mum will die soon but that it wouldn’t be a surprise to anyone if she did iyswim.

Our experience was that the equipment took forever to arrive. After everything we were promised the OT for the care company didn’t come for ages and the carers put our relative to bed and wouldn’t get them up without the OT’s permission. It ended up with them stuck in bed for weeks with pads despite being continent and having cognition.

Food prep was also erratic and hardly any drinks were given.

Sorry into be the bearer of bad news but I would take any promises before discharge with a huge pinch of salt and ask for her to go somewhere for assessment.

I did this after the last Hospital visit and despite being assured that she was suitable for being at home, the assessment ward said that she needed a Care Home and my relative has been living in one very happily ever since.