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 don't know the answer but I'm sorry

I think you will find it very difficult and very expensive to remove her. If she needs manual handling, you are looking at 2 members of staff for 3 shifts so therefore you will need 6 full time workers-just for weekdays then another 6 to cover weekend shifts.
Am so sorry-we had this with my great aunt who similarly had an incident and went down hill swiftly. If it helps, the lack of capacity will mean that she will be unaware of where she is. It also sounds like it is the best place for her to get the care she needs-it’s about her and her safety and well-being really-that helped me reconcile things.

Who is funding the nursing home ? Unless there is a safe guarding issue I can’t see why you cannot have her home but funding depends on income and I doubt the NHS would fund 24hr care at home as they would say she could be in a home . IME the most you will get is 4 visits per day and if you have to pay even a portion it’s very expensive . We had to self fund my mums home care and even with a reputable agency the care was hit and miss , as was them turning up ! Unless you and your family are in a position to actually nurse her yourself it may not be workable depending on her needs and committing to being a 24/7 carer is a big decision

Gosh. It sounds like this will be hard. The NHS is paying all her fees at the moment. She met the criteria to allow this despite being financially stable... so perhaps they will fund some own home care and we pay the rest? The nursing home have called her care ‘end of life care’ and I still can’t understand why she isn’t eligible for a hospice where we would be able to visit.

If we were able to visit we may agree the nursing home is the best place for her, but we haven’t seen her for weeks and can’t bear her being alone any more. She was always the biggest presence in the room and adores company. I feel like we’ve abandoned her.

It’s a horrible situation to end up in. Bad enough when visiting was freely allowed.

I would hope that common sense would prevail and once your mum is officially deemed end of life, you should be able to visit wearing full ppe and possible taking covid tests. They may only allow one person to visit.
24 hours nursing at home can be done, but would be very very costly. You need space and specialist bed etc Previous to covid, everything would have to be in place and a social services assessment made before your mum might have been released. That sadly took a long time to do, time you may now not have IF things are still done that way. (I have left that profession).
I would talk to the home manager about your concerns and wishes and ask them to be as honest as possible.
Do you have poa for health and welfare and finances? If not, and it’s too late to get now, sadly it may have helped strengthen your position if you could have got everything else needed in place to return your mum home.
Cost would have to funded by yourself as the nhs /care devices have provided suitable care for her.
Has it been done - yes. Is it rare to succeed - yes extremely.

I hope I haven’t been to harsh or upset you. I hope you can achieve something better for you and your mum.

Thanks barge. I don’t feel like this is suitable care though because we can’t see her. That has to be taken into account? We have financial POA only. But my father is still around as next of kin. Does this count for anything?

It can be done, but depends where in the country you are, how much money, and how much time you have to spare.

In some places it's possible to apply for direct payments, where some of the money the NHS/social services pay for care can be paid directly to a carer to source their own private care package. It doesn't come remotely close to covering 24 hour private care though.

If she could come and live with you for example, then it might be possible to top up the care you can give with a SS funded package, but again you're looking at no more than 5 calls a day.

It's highly unlikely that it would be considered safe for her to return home with less than 24 hour supervision if she is currently deemed to need a residential place. Are you able to provide this?

If she lacks capacity, then all decisions have to be made in her best interests. You do get a say in this, but not necessarily the over arching say.

Don't suppose you have power of attorney for health and welfare do you? That would change things

TBH I am starting to doubt my dad’s capacity now! The reason I don’t have a full handle on her care is because my dad was dealing with the nursing home etc and I wasn’t asking the right questions. I’m not sure he understood what was happening and I didn’t realise until it was too late.

justchecking may I ask, how would POA for welfare change the situation?

Is this about you and your feelings though? It doesn’t sound like it’s about her and her needs, but rather that you feel bad-which is understandable. I would suggest talking to the manager of the home about her being end of life care and that as such you need to be able to see her. Moving her at this point would be incredibly stressful and might negatively impact her health.

MrsE she never wanted to be in a home, and now she is alone in a place she didn’t want to be. She hates being alone. She needs to see her family. She needs to die surrounded by love. Not PPE and unfamiliar health professional. It’s so sad.

I'm sorry this sounds awful. But it seems that your dm is in the best place to be cared for, and isn't aware of her surroundings. You'd feel better seeing her, but this is about what's best for her not you. If she can't get her care needs seen to in her or your home she's going to be very distressed.

Can the staff arrange FaceTime or zoom so you can see her?

With POA for welfare, once the donor (your mum) loses capacity to make their own welfare decisions, you get to step in and make their decisions for them, as if you were that person.

Therefore if you think mum needs to be at home, you can make that choice and it would have to be accepted by the medical professionals as if your mum still had capacity and was making that choice herself. In reality, if it was felt to be hugely unsafe, they would apply to court to displace you, but it would have to be highly unsafe for them to do this.

As it stands, since your mum lacks capacity, all decisions are made by a multi disciplinary team, which should include family members, in her best interests. If it's felt she cannot safely be at home and needs full time care the team make that decision and would override your wishes. The idea is that they should still take your mums wishes into account, so if she wanted to be at home they should have explored all options to make this happen. Sadly, it's cost prohibitive in most cases when 24 hour care is needed

Sadly no care home or nursing home is going to allow you to freely visit. In theory, once she is on end of life care, at least one designated person should be allowed to visit wearing full ppe. This is down to your local health director to decide and arise locks homes. It will vary - some will allow visiting for the last week of life or they may decide to only allow you to visit in the last day(s).
This is life under covid-!9 and not the fault of the home.
Your dad being next of Kin - honestly from your update it really sounds as if your mums health has deteriorated too far. Your mums health needs trumps all I’m afraid.
Dying is not ‘pleasant or peaceful’ it is messy, and drawn out. It is distressing for everyone. No one can give finite timelines.
I can’t comment on why hospice hasn’t been offered - it might be that there simply isn’t a space or she is not a suitable candidate.
You really do need to speak to the home manager and ask what they will allow in terms of visiting your mum now she is on end of life care. Now isn’t the time to be arguing, it’s about accepting and dealing with it as best you can.

If she needs manual handling, you are looking at 2 members of staff for 3 shifts so therefore you will need 6 full time workers-just for weekdays then another 6 to cover weekend shifts.

This simply isn’t true. If she needs a full hoist to move her, this along with a hospital bed etc is loaned by NHS/council equipment stores. You need two people to operate it, one of which could be you after brief instruction (I was shown in hospital). Then you need either one live in carer (they do eg 4 or 6 weeks on and are replaced by cover for their break if you use an agency.) or a visiting carer to attend to help you four times per day.

I’ve done exactly the above for my dad to get him out of hospital (pre COVID).

If she has more complex nursing needs this may not help of course.

Care agencies are a nightmare - DM me if you want more info.

Advise care homes. - sorry for the typo.

@OmLet

Thanks barge. I don’t feel like this is suitable care though because we can’t see her. That has to be taken into account? We have financial POA only. But my father is still around as next of kin. Does this count for anything?

Afaik next of kin doesn’t really count. I was in a very similar position for my grandmother. She didn’t have capacity to make decisions, was put in a home by her local hospital in an emergency situation and I was told it had been done. I just had financial POA but nothing else.

We wanted to move her to a nursing home nearer us and her nursing home kicked up a fuss. Said we couldn’t decide that. Not helped by the fact gran was just crying and refusing to go anywhere and saying she wanted to go home. A social worker was allocated and came to meet us all and was quite clear that if she felt it wasn’t in Gran’s best interests to move nursing home she wouldn’t allow it.

I’d talk to the nursing home for advice. And contact social services.

I’m sorry you’re in this situation as well.

Similar to my MiL a couple of years back and she ended up in a nursing home costing about £4k a month which she (aka us) were expected to pay. Home care of an hour 3 times a day would have been about the same cost. There was no NHS funding available and social services wouldn't cover anything as she had more than £22k in savings.

Fortunately she recovered but we fully expect she will need to return to this sort of arrangement at some point in the future. But at least now we are prepared for it.

Sorry to hear about about your mom and I hope you can resolve it. Potentially if you can bring her home she will have you to be there but fyi any carers will be wearing PPE so potentially working something out about visiting may actually be easier.

Now isn’t the time to be arguing, it’s about accepting and dealing with it as best you can

I honestly couldn’t disagree more. I need to get my mum out of that home where she is alone, scared and has no family around her. I have to fight for her because I know it is what she would want and because I would want my family to do the same for me. If we could visit and be with her everyday it would be a different story, but we can’t and it’s not

If the NHS is funding her care that means that they have agreed she meets the criteria for Continuing Care Funding and that applies WHETHER SHE IS AT HOME OR IN A NURSING/RESIDENTIAL HOME. Sorry for the shouty capitals, but this is very important indeed - so often people are given misinformation.

It is possible to bring in care at home; but it really is not easy at all. I have recently been through all this with my OH, who died in February.

First of all you need to have all the right equipment in place so need to contact your local Occupational Therapy Team, and also the District Nursing Team. They can order the things you need; we had: hospital bed with sides and an electric air-flow mattress; waterproof sheets, Kylies (slip sheets that draw moisture away); standing aid; walking aid; commode; rails in shower; slide sheets; catheter equipment; electric air-flow cushion; riser chair - and much more. Do not please have her home without all this in place. Her care will suffer and you will likely do your back in.

Carers - you will probably, as someone above has pointed out, need two people for dealing with transfers (bed to commode; chair to toilet; etc.). This was where my OH's care came unstuck, as the funding has a ceiling and getting in extra care for transfers was prohibitively expensive. There are agencies offering live-in care and the cost starts at about £800 per week and then the sky's the limit. We found that carers just during the day (a long day) was more expensive than live-in in the end. But........getting the right carer is hell - do not believe the agency's bland advertising bumf about matching carer to patient. IN the end we just had to take whoever was available and willing to to do it. The carers stay for a few weeks and then go on a break; and every time this happens you have to go through the same tedious process of trying to find one of the agency's carers who might be willing to plug the break.

Some of the carers were hopeless: sometimes due to personality (mopey miserable; volatile and garrulous - we had them all). And most do not have English as a first language. Also they often had some strange dietary requirements. They are entitled to 2 - 3 hours time off per day - which they needed - but you could bet your life that my OH would need the commode, or wet everywhere as soon as they walked out of the door.

It is a minefield and only to be undertaken with eyes fully open. I have lived this for nearly a year and it was so very very difficult.

Please do feel to pm me if I can offer any advice, which I would be happy to do.

I am so sorry you are in this difficult situation.

In the end we decided that a nursing home was the only answer, so that he could have peace: efficient care, all the right equipment in place etc. Freedom from lurching from one crisis to another. We were lucky that a new and absolutely state-of-the-art new nursing home had just opened nearby. What we would have done without it I do not know - I looked at some hell-holes where under no circumstances would I have allowed him to go.

Sorry to sound so negative. It can be done, but at great cost - both human and financial. And of course we were dealing with pre-covid. When nursing became the best option, one of us was able to be with him for several hours every day - he did not go a single day without a long visit. I really can understand how hard it must be for you not to be able to visit.

You have all my sympathy in this dreadful situation.

End of life usually means you only have a week of life left. Do you really want to waste this time fighting rather agreeing to some visiting at the home? It’s really really unlikely you are going to get her assessed, home nursing set up and transport arranged in such a short space of time.
It is utterly crap I know - we’ve been through this ourselves only this month. So I do understand but, it’s about what is best for your mum now, not what she or you might have wanted.

By the way - if she is getting funded by the health authority, social services cannot be involved financially - it is either/or.

"End-of-life care" has a fluid definition. They did not put my OH in that category until he was unconscious.