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

Not to scare you on price. We are looking at getting MIL (86) out of a care home (only there since July following a broken leg) and back home for full time care. She had carers 3 times a day prior to that. Current quote is over £12k a month for 1 live in carer with 4 hrs relief daily. This is self funded. London based.

My DH has been completely bedbound for 4 years. In many ways it is easier to have that situation than someone 'kind of' mobile with a frame and falling all over the place (which happened for a few years before)

He's in his 80s, has some sort of genetic anomaly IMO that means he heals very well and I don't think without that it would be possible.

Basically though people who are bedbound or reliant on something like a Sara Steady to get them out of bed need 24 hour care, there is a bit of leeway if they can use eg an alarm, as long as their cognition and ability to use it is OK and they will not try to mobilise themselves.

You need to think very carefully @DinahCat if you can get support in place that will facilitate this, and if you can't, don't beat yourself up

Ice just reread your post again and if the Hospital discharge her with Carers then that “care” should be free for the first 6 weeks. There are some good ones but I really wouldn’t expect better care than your community hospital and at least there there will be staff 24/7 instead of 3 or 4 5 minute visits a day.

Its not unusual for them to be left for over 12 hours at night without a visit either.

Sorry I’ve just read the full thread and seen that your DM is end of life care. I’m so sorry.

I would talk to the Consultant that’s she’s under at the Hospital and ask them how long they think your DM has and what can be put in place to make her end of life more comfortable.

If it’s under 3 months she should be entitled to a free place in a Nursing Home. Unfortunately, your DM may no longer recognise her own home if she has delirium and has been away from it for a while. People with delirium often ask to go home but they are craving that sense of security, comfort and belonging rather than an actual place you recognise as their home.

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.

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.

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.

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.

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.

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

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.

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

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.

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.

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.