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 🙏🙏

Best to wait for the OT, but yes it is possible to have reablement at home, but it just depends if your area has such a team commissioned. An appropriate transfer device can be prescribed by the OT following assessment, assuming it will suit her property and carers can use these. Typically the maximum care package is 4 calls a day. If she is sleeping in a riser recliner and not a bed the OT won't (or shouldnt) be happy as it a pressure care issue.

Yes - but it can be a very long time between care calls and no help overnight. So potentially in a wet pad for a long time. It sounds like she needs a 24/7 environment.

Thanks @Edictfromno10 - they did suggest a hospital bed last time but she declined (v small downstairs space). It's still a possibility though. Ironically she has slept in the riser recliner for a year with no pressure / skin issues, but the ill-fitting hospital bed, with just one thin sheet between her sweaty skin and the plastic matress (why on earth do they do this?)seems to have caused a skin breakdown in several places in a matter if days. And the riser recliner is so much easier to get out of , as it helps, unlike the bed.

She's self funding so we could have someone live-in, though I don't think she'd want to pay for waking care. She did have live in for a few weeks when she came home before, but she was a lot more able. This time she seems to have lost a lot of her sight (not clear why, eye clinic next week) so that is also going to complicate things

Contact adult social services. They can provide hospital beds, mobility aids , walking frames etc.

My parents have carers. They help them to get dressed, prepare meals, tidy up , do the commode etc.

Consider a lifeline if your mum is frail.

A Sara stedy is only suitable if your mum can weight bear and will require 2 carers to use.

I had this with my Mum in a care home. She went in as diagnosed with primary brain cancer. She had use of one leg and an arm and pulled herself up from a rise/recline chair to the Sara stedy. OT said this wasn’t safe. Her good side was becoming weaker.

instead she was moved in a full body hoist. She hated it. She wasn’t truly incontinant but because there was never carers about to do the transfer in time she had to wear adult pull ups.

Her last month she couldn’t get out of bed at all and that seemed better kinder in a way as she wasn’t being pulled about.

OT for fill home assessment for aids plus live-in carer. I can see no other option.
Former SW here and widow of someone with similar problems who did in fact go to nursing home in the end.

Ah @BeMintFatball I did wonder about no of carers on the Sara Stedy - the nurses in the hospital are managing do do this solo - I m wondering if it's different at home where there is noone to call over to assist if Mum starts to wobble. It probably is. Drat.

We think there are funds enough for one live-in carer for a bit while she gets re-oriented. But two is obviously out of the question. And thinking about it, if the new vision loss is permanent she might never be safe to wean back to 2 visits per day anyway 🙁

...which probably means a care home - which she has always insisted she doesn't want ...😬

It’s totally possible if she’s safe to be left between visits (max is usually 4 calls a day) and doesn’t need pad changing/repositioning over night. But if she has delirium that might not be the case.

in my experience (ex LA social worker) once someone is at the point of needing “double up care” (hoist requires 2 carers) and care overnight/cannot be left, then care at home becomes not feasible.

it is possible to have a live in carer plus a second carer visiting 4 times a day for transfers but that generally then becomes more expensive than a care home so wouldn’t be funded.

if she can transfer with the assistance of one cater who could sleep at night and wouldn’t be required regularly overnight, and she has a spare room, then 24 hour live in care is an option,

or if she could last from an evening call to a morning call with no visits and be ok in between calls ie. Not attempt to get up, be able to call for help in an emergency - then 4 x daily double calls could be possible at home.

Thanks @throwaway3749574 - that's a really helpful list of questions to ask ourselves. We don't know the answers yet as she's still (very) slowly improving.

She's self funding from savings currently and owns her own home so in theory there are more options but as my other poa points out, now she is probably unable to sort anything out or communicate easily the burden on us "running another household" (and neither of us lives locally) also has to be considered vs using her house value to fund a decent care home.

If money was effectively no object, and she was very keen to stay at home, and was settled overnight so that a carer could mostly get an uninterrupted nights sleep, then I would explore live in care plus a second carer coming in at fixed times, or even 2 full time carers (but that would be a few thousand a week I expect). My own grandma had that for a while, and even though she ultimately went to a care home (when she started waking up the sleep in cared too much) it kept at her home for quite a while

My wife has virtually no mobility. The OT at the hospital arranged for a Sara stedy to be delivered to our flat.

She started with two carers four times a day. We requested this to be reduced to two visits as we like the freedom to go out with her in a wheelchair.
A recent OT and physio assessment reduced it to one carer as my DW is now used to the Sara stedy

This isn’t practical they can’t do personal care in a chair
she’ll need pads and they can change her on a hospital bed as the can raise and lower it
she needs a ripple mattress

It sounds as though she might qualify for NHS Continuing Care funding (for care at home or in a nursing home). Take a look at: www.beaconchc.co.uk

They are subsidized by the government to provide information on this funding stream whereby the NHS pays for the care under certain strict criteria - it does sound as though she might qualify - my late OH did.

My parents always said they didn't want to go to a care home.
They had carers visits 5 times a day but they really needed somebody 24 hours a day.
Dad booked himself into a nursing home but wouldn't leave mum at home on her own. She ended up falling , in hospital for 6 weeks so they are both in nursing home now.
I asked dad the other day if he was happy there, he said if he needs to be changed during the night staff come in.
If he's hungry during the night they give him food. None of that was possible at home. Mum is much better too.
She was exhausted minding Dad, wasn't eating properly and living on cappuccinos.

They are much happier and healthier in the nursing home

Nursing home can indeed be a positive move.

I was an adult services SW and family often felt guilty about a home, but I used to tell them that there were lots of ways to discharge one's perceived responsibilities to an elderly parent and nursing home is one of them. It is not a cop out. Sometimes it is the right choice.

My late OH had PD and he came to see what caring for him at home was doing to me, even with lots of outside input. He suggested nursing home and I moved heaven and earth - and sold our home - to make sure he went to an excellent one.

sometimes what we need and what we want don't co-incide.....

My mother was discharged and sent home totally immobile. We were provided with a Sara stedy, a special chair, a hospital bed. She had two carers four times a day - to get her washed and dressed in the morning and give her breakfast; to heat up and serve lunch; to give her a cup of tea in the afternoon and to change her and put her to bed. On each visit they would use the Sara steady to change her incontinence pad and clean her. She only spent three weeks like this but it was totally unmanageable. I was there with her from 9.00 till 6.00 every day and my DD went to spend every evening with her, when she was already in bed. I would go home for lunch and she would phone me saying the carers had forgotten to make her a cup of tea or hadn’t left her with the remote control for the tv and I would have to go back. She had attendance allowance but we had to pay the shortfall. Our local council will not pay for a nursing home unless the person has dementia.

I can’t give much help but I’m so sorry the original poster and her family are facing this.
Unfortunately it’s a situation more and more of us will find ourselves in as parents ..and ourselves…age and medical conditions become more prevalent.
We should all be making adjustments as we and our family age…it’s a very sobering thought.

I understand the dilemma.

My DS and I are not local - she is a couple of hours away and I am a flight away. We managed to make it work that DPs and latterly DM alone stayed in their own home. We stayed for a week every other month so kept food stocked up and did little jobs around the home. Cameras helped. When we could not get her to understand that she could not wander around the house when carers were not there and she was hospitalized after several falls we agreed that she was unsafe and had to make the difficult decision to move her to a home.

Care fees are now about £1500 a week. That is about the same cost as two carers four times a day which is what the Care Team assessed her as needing. It did not include overnight care.

Mum did not want to go into a care home but even if I had gone to the extreme and left my family to move in with her I would not have coped with the nights.

There is a point at which it is not only about what she wants but also what is safe and reasonable for all concerned.

This is good… and I’m sure it gives you more peace of mind.

Thanks everyone - back now from an exhausting and disheartening afternoon at the hospital -I expect everyone here has been there 🙁.

Mum is more lucid today and therefore, clearer about how fed up she is and how she doesn't really want "any of this" any more, and that there is "no point".

She has so little mobility that she can't move to make herself comfortable but when im not there to find a nurse to help move her, I m not sure she really remembers what the call button is for. And apparently she was screaming out for me earlier when id told her i was going for a coffee...

Anyway, I am hoping the OT is able to advise on what is feasible, in her opinion. We have many options to ask about thanks to you kind posters. Sorry, too tired tonrespond properly this evening but all the posta are so valuable in twrms of understanding what choices we might have so thank you ❤️

Sorry., lots of tired typos 😳

My late mum was discharged with very limited mobility, it was a nightmare even with 4 care calls a day, if she needed the commode I had to ring either my brother or my ds & dsil to get her on & off, luckily the district nurse & carers arrived at lunchtime & declared it unsustainable, she went back to hospital in under 36 hours after being discharged.