Have to get mum out of nursing home... but how?

[OmLet]

Last month, my mum (who has never seemed elderly to me before!) suffered a medical incident and has gone from being fit and healthy to being dependent on 24 hour nursing care in a residential nursing home. I am still trying to get a handle on her nursing needs but they are significant. She has also lost capacity and I’m not sure of what she is aware of. She was assessed for a hospice but wasn’t a candidate as no one knows how long she will live. It’s likely to be weeks/months rather than days as the condition progresses... but equally if she has another medical episode she could go at any time.

We are not allowed to visit her at all in the nursing home. We are very upset by this and the thought of her slowly dying alone is killing me. She once made me promise never to send her up a home and now we’re in this position.

How on earth do I get her home? Is 24 hour home nursing possible? I will try to start the process If getting her back as soon as I can but what do I need to be aware of? Will the NHS fund it? Do I contribute?

Has anyone been here before?

I read this recently;
www.bbc.com/news/stories-54366336

I think you are 110% right about her being better at home. I imagine stuck in a care home she’s become despondent and is close to giving up. Being in a familiar setting with the right care could make a huge difference.

Would she be able to come and live at yours? Are you/anyone else WFH at the moment? If she can’t come to yours, could you stay at hers for the time being?

The worst case scenario is she comes back, even with care/help etc you really can’t cope and she has to return. You’ll have honoured your promise to her, she’d have had as much time at home as possible, but hopefully it won’t come to this and she’ll be able to pass away peacefully at home.

@Mischance

Very true. It’s a very difficult decision.

I know a lot of us are sounding quite negative @OmLet but it’s because we’ve been there and done it unfortunately. What does your dad actually want to do because he obviously agreed the NH route in the first place and if she goes home to her home it will be him who is there 24/7 , have you considered the impact on him and his health .

Firstly @Mischance I am so sorry about your OH.

OmLet you need to read what Mischance has written. My Dad wanted to bring my Mum home from the cancer hospital. He had to have it explained that it wasn't just a case of lying in her bed at home for the next few days whilst she drifted off to sleep.

It is all the equipment that you need from the bed to the chair, moving and lifting, special sheets etc.

Understandably you are caught up in the emotions of it all and not the practicality of the day to day care needed. You made a promise to her that you couldn't keep, unless of course you are a nurse or a qualified carer. Read Mischance's experience of caring for someone you love in the home.

What an awful situation for you. I don't have any advice really as pp know more than I do but does she have an Attendance Allowance?

I was only told about just before my Df's death. He was terminally ill so would have been fast tracked (for want of a better word). It isn't means tested.

Is your Df able to look after her at all? In between carers I mean.

Mischance a very good post.

OP you haven’t said what support the family intends to provide. I don’t say this in a critical way, but if your mum’s needs are such that the only input you can have is to keep her company and not meet any of her nursing needs, then it will be considerably more efficient for the NHS to keep her in the nursing home. I agree with the point that with home care it’s quite common to go from crisis to crisis, which you may not want if your mum is end of life (which might well be longer than a week but I imagine wouldn’t be months and months).

Sadly your mum’s situation is being replicated up and down the land (and I don’t intend to minimise it by saying that).

So sorry to hear about your mum. If the NHS are funding your mum's care then in theory this can be at home. But the practicalities may be too much. In my experience end of life care at home relies very heavily on family providing 24 hour care. The support you're offered on paper isn't always there. Often the emergency numbers go straight to answerphone or you're told to phone the GP. Also don't underestimate the pressure of you being 'in charge' at home. The responsibility is huge. And it's hard enough watching someone you love die without wondering whether you can cope with an emergency situation.
Definitely ask again about the hospice though, we found them wonderful and a much more relaxed environment. But they only allowed one visitor and limited visiting time. Everything is difficult with covid.

I'm sorry you're going through this, OP. You need a meeting all the MDT members involved and your dad, to see if end of life care at home is an option.
If she is bring nursed in bed, then you may not need overnight care. There is equipment that can be provider to help turn her in bed, for example. From how you are describing things it doesn't sound like transfers out onto a commode etc would be manageable anyway.

If no one has POA for health, then a best interests meeting should be held. If you can demonstrate that your mum was adamant that she did not want to go into a home, and her nursing needs can be managed by DN's, carers, family and most likely the palliative care team, then a plan to take her home should be seriously considered.

It's really hard to give more specific advice without knowing her condition and care / nursing needs.

It's so difficult. My daughter can visit her dad inside now as it's end of life, but that's only been the case for the last week - I think it's meant to be the last seven days of their life. This whole Covid situation is particularly cruel for residents in care homes and their families.

You will need to speak to the continuing healthcare team at your local CCG. Funding is not straightforward at the moment as there is 'Covid funding' which is given without full assessment of who pays to ensure people are discharged quicker but the CHC team should be able to let you know if she is CHC fast track or Covid funding.

Even if CHC agreed to pay for home care funding 24 hour packages of care is hard in some areas right now with high staff sickness due to Covid and carers having to isolate etc.

What are your mum's needs, OP? Is she bedbound, incontinent, have any nursing needs besides medications? Sounds like a hospice was not suitable because they tend to be for symptom management (if a bed is available) or more imminent EOL.
In terms of EOL, a lot of nursing homes implement a daily visitation policy of up to 30 minutes.
Yes, she can be managed at home, even bedbound. The first thing is getting her out of the nursing home--I suggest in ONE email contacting with your local adult social care team, the CCG, GP, and the district nurses and local palliative care team (because once she is out of the home, she'll be referred to them for nursing needs/EOL care). The latter can be really helpful with placing people at home for EOL care.
To be frank, the 'easiest' way to get care at home in place, would be for the hospital do it before discharge (a profiling bed, package of care, referral to DNs, community palliative team could have all been put in place beforehand) as lots of people don't want to die in a hospital or in a nursing home preferring to be home.)

Oh, if your Mum is not on a DOLs (deprivation of liberty order), she can self-discharge anytime. If she is on a DOLs, you need to also contact the local DOLs team for your city.

If she lacks capacity and no POA for welfare then normally (in Scotland) it goes down a guardianship route via the courts and that can take months....
I think you need to contact the home and have an open and honest conversation with your dad. Are you going to take your mum to your house? Or back to her home?

The NHS providing funding for her care doesn't naturally translate to also paying for 24hr care at home. Usually they will fund carers to come in 4 times a day for possibly an hour at a time, they will probably not fund 24hr care at home as it is too expensive.
It would be expected that the family either provide her care in between these calls or pay for a carer themselves.
Also there would need to be all the equipment needed in place such as hospital bed, hoist etc this can be a lengthy process especially at the moment and requires an OT assessment, in my area OT assessments currently have a 8 week waiting list.
They also have to find care providers with the availability to take on the care which is also not always an instant thing.
I know you are desperate to see her and make sure she is home but please be prepared for the reality of what it takes to get her home, instead try pushing for her being at the hospice if she is end of life as they seem to be allowing visitors
More than care homes, I hope you get everything sorted for her.

OmLet: This happened to me in February. One day I was taking care of my home and my dogs and my grandson. I was driving my car. Then I had a bacterial infection in my leg and was rushed to hospital and then transferred to a nursing home because my leg was so bad I couldn't walk.
Covid arrived, no visitors allowed. My daughter, a nurse, had POA, but she could only get info from the nurses and doctors.

She was told I would never be able to go home and they should sell my house, take custody of my grandson, and make financial arrangements. I spent over six months in the nursing home.
My grandson kept calling me, begging me to come home. I finally got a doctor to sign my release.

I had lost 38 pounds and was in a wheelchair. But as soon as I got home and got edible food I got my strength back. I had a therapist come in to help me start using a walker. I stopped taking all the meds and the fog cleared up.
I say all this to tell you -- it may not be as bad as they say. If there is any possible way to get her back to familiar surroundings she may have more time and a better quality of life than they are predicting.
My daughter thought she was doing the right thing, but if it had not been for my grandson I would not be here now.

Agree with everything @Mischance has said. We were self-funding so no experience with getting social services to pay for it. But you will need their involvement - I can’t see how else OTs, physios and equipment would be organised coming out of a home as opposed to a hospital. We had the hospital social worker liaise with the Reabe

You can get self-employed live-in carers for approx £700 per day, there are Facebook groups, but then you don’t have the backup of an agency (even though they are almost useless ime).

We were lucky to eventually get sent a good agency carer and poached him(with the justification that the agency had made so many mistakes the contract was void).

It is possible but you will need deep pockets.

I have a relative with two live in carers, both qualified nurses. They have the means to fund it but unless you have very deep pockets or family willing and able to give up everything for however long it takes (plus potentially paying for some qualified help), it’s not going to happen.

£700 per day for a live in carer?

If you have finance POA, are you able to use your DM's own money to finance her care at home, as you are sure that her wish would be to be there?

Sorry if I have given the wrong information re Social Services vs NHS as the agency to organise this, OP. As family/carer my situation and experience may not be wholly relevant.

My post above should read: SS liaised with our local Reablement team to organise OTs etc. (Reablement seems to be called different things in different areas.) Because dad was so desperate to leave hospital, we as family found a private live-in carer. The SW agreed. not to wait for a team meeting, but to contact each team member individually to get everything set up. This was pre-COVID.

FWIW, I would be trying to do the same as you if at all possible

@HollowTalk

If they are qualified nurses and through an agency - yes. The local rate for a live in companion is £500 per week plus all expenses. East Midlands. That’s not a carer or nurse.

@HollowTalk

£700 per day for a live in carer?

Yes. We were paying the agency £1100+ per week. The carer was getting £450 ish per week. Scandalous. So she became self-employed at £700 per week. It wasn’t a high needs case though. Hoist only used when under the agency.

Oh sorry, @hollowtalk!! £700 per week.

You need to contact the people paying the bill and make a fuss.

It sounds like she has full NHS continuing care funding. So the bill payers will be the CCG. You need to find out a name of who is responsible for reviewing the placement at the CCG and talk to them saying it is not suitable and you wish to discuss an alternative.

It is clear in law that CHC funding can be used to provide care at home but it is not the default option as it is hard to arrange and likely more expensive however people can and do get this.

It would be best if you know what your mum's needs are first though. Is she mobile? Does she need hoisting or turning? Is she continent? Does she need feeding? Is her behaviour challenging? If she qualifies for CHC it suggests a high level of need and that live in care would be required and maybe double up care at times. If she wanders at night you need a waking night carer which is very expensive. Is there space for a live in carer and all the equipment. It will be a non starter as an idea if not.

If your mum lacks capacity there will have been a best interests meeting before discharge where it was determined that it was in her best interests to go to the care home. By law (mental capacity act) her wishes and feelings need to be taken into account and her family (likely your dad) must be consulted. He must have agreed to it. This will be formally documented on some piece of paper somewhere.

Your dad will probably be mum's RPR (representative) under MCA as she is being deprived of her liberty in the care home technically because she would not be allowed to leave. She should have a DOLS authorisation in place under MCA. He can say that he wishes to challenge whether it is in her best interests to stay there (or I think you can take over as RPR if he agrees to that). I reckon that might put a rocket up them as no-one wants a legal challenge.

If you had H&W LPA you would have the final say but as you don't you merely have a right to be consulted not to make the final decision. I expect your dad was consulted and agreed but he can change his mind.

So it's hard and complicated but it can be done

Your mum is entitled to advocacy support to help with this. Age UK are the organisation I know of but I believe there are others.

The council usually fund care if the person needing it meets the criteria.
They will only find a certain amount of hours, depending on their assessment.
If your mother needs 24 hour care, they will not fund this.

What you need to do is first speak to the care home to ask them to give you as much detail as possible to her care needs. Is she needing actual nursing care as in nurses or are carers adequate for her needs? If she needs actual nurses, there is certain things community nurses can doz this would be set up with the home/doctor making a referral to community nursing. They are able to carry out a great deal, but they are on time scales.

If carers is adequate the maximum the council usually will fund is 4 visits a day. These aren't long visits though.

You could fund a private carer, but it is costly. If you have the funds to do this, then the carer would need a detailed assessment.

Failing that, what my family did for a dying relative was we had a carer package that visited 3x daily, a community nurse visited once daily, and the rest of us family had a rota so that one of us stayed every night. Me and my mum were trained by a specialist nurse how to administer medication through a PIC line, I took on showering, nail care, skin care etc so that the carers didn't have to factor it in to their Time.

We were able to adapt the living room into a bedroom with a hospital bed, hoist, commode etc

So it is doable, but depends on the level of care your mother needs, and if these needs can be met at home, and if you have the support around you.

If I can help with any questions just ask.
For reference; I was a senior carer for 10 years in a home, gave cared for two relatives with end of life care so I do have a little understanding and knowledge.