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?

To give you a starting point for thinking of cost, a friend's mum has dementia and has a full time live-in carer who has been with her for 7 weeks now. She officially has 2 hrs off each afternoon, but prefers 4 hours every other afternoon, which is covered by another carer from the same agency. (One of the mum's family visits each weekend, so the carer gets time off then, but that is unofficial).
The carer gets her up, cajoles/ encourages and helps her to wash and dress, cooks all meals and talks to her then puts her to bed.
The mum is very difficult to encourage to do something she doesn't want to do, rarely speaks and needs to be helped to do everything, but has no other medical needs.
The cost is £1700 per week.

Although it is possible I do agree with posters above that it is very very hard.

EOL is very hard to predict for non cancer deaths and this situation could go on for months.

I thought I wanted to care for my mum at home but she had other ideas and in the end she died in a hospice. There were definite upsides is own surroundings, unlimited family visits, food she liked and love. We could manage with qds care package and a night sitter plus family support for a few weeks at a point where mum was bedbound and required all care including turning but it was physically and emotionally exhausting. Right at the end where she was agitated, in pain and very distressed boy was I glad she was in a professional place. She needed help to be right on hand not an answer phone message. I believe hospice at home is available in some places for this but wasn't in our area.

So think very hard and get advice and more info about needs and prognosis before you do commit to this. It might not be easy to get another place if this fails.

I think you need to have an honest chat with your mums home / social worker about what her needs are. Is she fully hoisted? Air mattress? Swallowing difficulties? Is she aware of her surroundings? Pressure sores? Is she able to sit out at all? In what kind of chair? What exactly is her life expectancy? Are her needs expected to change and if so how quickly?
Then you have to ask yourself how you can realistically meet these needs as a family? Have you the space, time, skills necessary? She may need turning every 2 hours for example? Equipment can be provided but only if there is the space for it. In terms of carers 4 calls a day is normally your maximum, for 15-30 minutes. How are you going to manage inbetween calls and overnight? Yes you can pay for 24 hour care, but you are talking thousands a week.
If your mum no longer has capacity decisions have to be done in her best interests. You need to think carefully about what her best interests are, not just from an emotional point of view but also medically.
In the meantime there is lots you can do for your mum despite not physically being able to see her. Send in her favourite perfume. Record some of her favourite music? Send in a photo album of happy memories. Would she enjoy audio books? Are the home able to arrange FaceTime or anything?

I absolutely agree as well with trying to take other approaches to support her.

Have you filled in a This Is Me or similar. This is a doc the AD soc developed so families can tell the care home about the persons history and preferences. You could
also just write a letter covering people who are important to her, likes and dislikes, hobbies and interests, job, upbringing

Do write letters and send pics often and the carers can read them and show them to her. It gives them a way to interact positively.

Ask them about FaceTime etc it does work for some people. At least you could see her even if she doesn't interact. Phone and book a time in with the home.

Ask if you can send favourite food and toiletries. Make sure she has pictures in her room and some familiar things from home. CDs of music she likes.

Make sure the care home staff know who she is and how much she is loved and cared for. Although people think care homes are terrible places in my experience the staff usually do grow to love and care for residents and are upset when they die or are ill. It's not like family of course but it's not all mechanical and miserable in a decent home.

My dad had fast-tracked CHC funding when he was classed as terminal. He lived for four months after that. What "should" happen and what actually does happen can be miles apart. It can be a postcode lottery.

CHC funds paid for 2 carers to attend my dad four times a day, roughly twenty minutes at a time. The carers were lovely, very kind and compassionate.
Some of the other professionals involved...

Idk if it will be possible to get your mum out. You’ve had a lot of information of how difficult it is to care for someone at home. I just wanted to give my experience of care homes.

Staff in my experience really, do care about their patients and can be very loving. There are various activities for everyone willing and / or able to participate. There is a tv in the living room area. Depending on the size of the home, there could be a few of these, possibly also part of an open plan living / dining room. Everyone is taken to the dining room to eat if at all possible and therefore people are not constantly alone. Residents tend to spend the day there if they wish.

Until you have an outcome, I would be finding out if your mum is able to sit in a chair - there may be big ones on wheels in the home to push her around in - or ascertain if she needs a specially adapted wheelchair if she doesn’t already have one. I just want to reassure you that your mum is not going to be alone and my experience is that when the residents are too incapacitated to move, staff go and sit with them and talk to them when able.

I think FaceTiming your mum is a very good idea. Perhaps the staff in the home can give you some information on her routine or send you some photos of your mum.

You want to move heaven and earth for your mum. And maybe it is possible, maybe it isn’t.
IMHO if your Mum can transfer ( bed to chair) with one person then it is a lot more feasible.
Not to say it’s impossible if she needs two and a hoist but that level of care is just so much more difficult to cover.
But I think if she only needs one to transfer then follow your heart and see what can be done.
Best of luck!

Can i just add one thing re funding, I was speaking to discharge co ordinator at work the about NH funding, she said that it's now usually covid funding so patients (unless they have immediate funds) are all discharged into a NH not always their choice (unless self funding) they are then assessed within a couple of weeks to decide their ability to pay. This is because we have to discharge rapidly, this process previously took weeks.

I would imagine the MDT discussed your mum's care needs with your dad and felt the could not safely be achieved at home. It may be that your dad will need to pay towards care depending on assessment unless they meet the threshold for CHC funding. What does your dad say? Were you unable to communicate with the MDT at all during mum's admission?

You have had some good advice I agree start with the NH manager but if your mum does not have capacity this will complicate things. The NHS won't fund an infinite amount. Re EOL as others have said unless your DM needs symptom control or is actively dying she won't qualify for a hospice. However you would get community palliative support. I am so sorry you are in this situation I hate discharging my patients to NH at the moment because at least in hospital the can have visitors. This is a good time to remind people to consider appointing POA and having advanced directives etc. it really saves a lot of heart ache for families.

You’ve been deluged with advice, OP, but just a word about hospices, as you mentioned them. I was told yesterday by the consultant in charge of a relative’s EOL care that there are so few hospice places (at least where we are) that they are reserved for particularly medically complex cases.

That was an unreasonable ask of your DM, never to be put into a home. Surely she didn't expect you to be her carer indefinitely as she aged?

Most people in care homes never wanted to be there, but there comes a point where what they need overrides what they want. And yes, as modern medicine keeps us all alive longer and longer then there are hundreds of thousands up and down the country in the same situation. Hospice beds are very rarely available in such situations.

After District Nursing for almost 15 years I would think long and hard about this. Time after time we had families insist on bringing a poorly relative home with unrealistic expectations of the care available, the realities of dying and how they would cope, resulting in crisis again and again.

@OmLet, have you spoken with the staff at the home directly? Or has your DF done all the communication?

My DM has been in a Nursing Home for coming up 5years. She never wanted to need care.
However, the nurses and carers are warm and very caring and we are very happy with the home.

They send us pictures and post up pics on Fb to show families the activities they are doing, etc. It is also possible to Skype/FaceTime.

Is any of this offered by your DMs Nursing Home? It might help you to decide whether a move home is imperative?

Thank you all so much for the advice. I have a lot to think about.

From a logistical point of view, we have space at my parents house, we possibly have the personal funds, but my dad isn’t in a position to offer significant care to my mum. Originally, my dad thought that a nursing home was the best option for mum but the reality of not being able to see her has caught up with us and is too much to handle. We just want her home.

Sending you all my love and best wishes

We are carers here at home with my 90 year old dad

It is hard but we are doing our best

I hope you can do this

I do it with my sister and I

Sending you all the best ❤️❤️❤️❤️❤️❤️❤️

OP I fear you are letting your heart overrule your head.

She has also lost capacity and I’m not sure of what she is aware of.

It seems you have little idea what your mum needs NOW. Your mum would need an adult social care assesment before she could be discharged from the nursing home and honestly? I think its unlikely sending her home would be in her best interest.

You have POA in finance but not welfare, that means though your opinion will be listened too, you are not the overwhelming voice in this conversation. Just to remind you, think about what your mother needs NOW not what she was like before her medical incident.

Also think about your father, if your mother was home he would have to provide a caring role. Is your dad really up for that?

I mean this gently but is your mum being at home the best thing for her? She lacks capacity so every decision will be made in her best interests, not yours or your dads. It very easy (and completely understandable) to let your heart rule your head in these situations. Sometimes you need to step back a little and be objective.

If your mum is fully funded in the home with CHC then it is rare, but possible to be able to request this care to be replicated at home.

The nursing home may be the best place to support her needs but my heart goes out to you having to deal with this situation and not getting to visit

Complicated and time consuming and possibly expensive. But you'll
need two carers in 4 times a day as a minimum. You may need the involvement of an OT, occupational therapist who'll assess what is needed in the home setting. The care company may be able to sort this. Whatever the OT says, do it. They're important people in the chain.

I'm gobsmacked that a 'medical incident' can result in her being moved to a care home then needing EOL care in such a short time. As an older person all my elderly relatives have died but doctors were always very reluctant to give an estimate of death, none did.
If she is near EOL I would imagine she is sedentary in bed. And if near EOL nursing costs will be for a short time. A live in nurse will be needed.
But if she has lost capacity moving her could stress and upset her more than being in the care home.
Perhaps your GP could see her if you can't -otherwise speak to care home manager.

"If your mum is fully funded in the home with CHC then it is rare, but possible to be able to request this care to be replicated at home."

Not so - if someone is accepted for health services funding in a nursing home, they are accepted full stop - it matters not where that care takes place. That is the law.

Health authorities often do not tell people this; but it is a fact. Believe me; I have in the last year taken a great deal of legal advice about this.

The one positive in the OP's situation is that this funding has been agreed - it is not place dependent and if she feels bringing her mother home is the right thing (and feasible) to do then the funding will follow her.

I do understand how difficult it is in the present crisis, as no nursing home care, however loving and efficient, can take the place of having one's loved ones around. We were in this situation with my OH from last September before the epidemic broke, so one of us we was able to be with him every day for several hours, so he had familiar loved-ones around him. I cannot imagine how hard it must be if you are unable to do that.

OP - if you have any problems with the health authority over transferring the funding to care at home, this organisation can give you free advice over the phone: Beacon 0345 548 0300, www.beaconchc.co.uk/

That is a horrendous story, @GeorgiaGirl52. Thank goodness for your grandson’s persistence. I am so glad that you are home now.

OP When my grandmother went into a nursing home she was very sad and wanted to come home. She was incontinent with no control of her bladder at all and refused to use the pads and pants which I provided denying there was a problem. She lived with my dad. The whole place smelled of wee, and her bed and carpet were soaked in it.
She went into the home for respite care when Dad went on holiday and she was assessed by medical staff while she was there. There were other health problems too, and It was decided that she should stay for a while at least.
My dad was heartbroken, but he could not cope with looking after her.
I wanted to have her at my house. It was an impossible ask as her needs were beyond my abilities.
When she died I was heartbroken and still feel guilt. This woman was like a mother to me and I adored her.
When we visited she was quiet and sad, and refused to have anything to do with the other residents saying they were not like her and stayed in her room. I spoke to a member of staff who told me she was chatty and watched TV and read the newspaper. She also told me my grandmother was doubly incontinent by now and my dad had not told me out of respect for her.

I really feel for you. If you think you can do this, and it is feasible then go for it, but you must be aware of her condition and be honest with yourself as regards being able to cope. i hope you can resolve this

Look up
Continuous care and get in contact with your local adult social services

@Mischance

"If your mum is fully funded in the home with CHC then it is rare, but possible to be able to request this care to be replicated at home."

Not so - if someone is accepted for health services funding in a nursing home, they are accepted full stop - it matters not where that care takes place. That is the law.

Health authorities often do not tell people this; but it is a fact. Believe me; I have in the last year taken a great deal of legal advice about this.

The one positive in the OP's situation is that this funding has been agreed - it is not place dependent and if she feels bringing her mother home is the right thing (and feasible) to do then the funding will follow her.

I do understand how difficult it is in the present crisis, as no nursing home care, however loving and efficient, can take the place of having one's loved ones around. We were in this situation with my OH from last September before the epidemic broke, so one of us we was able to be with him every day for several hours, so he had familiar loved-ones around him. I cannot imagine how hard it must be if you are unable to do that.

Sorry my wording was wrong. I meant it is rare that people actually are offered to have their care provided at home. They are told oh you must go in a home, given CHC, but in my experience not told that they could remain at home with the same provision.

It is really sneaky and unfair. I've seen it happen and challenged it.

Sneaky indeed - and entirely pointless. The health authority is likely to pay the same amount whether the person is at home or in a NH.

The whole system is iniquitous and relies on ignorance by the patient and family in order to balance the books. When my OH was due for discharge I was presented with a SSD financial form to complete - in law this should not happen until a full assessment has been done to establish whose financial responsibility the patient is: health or SSD.

In general, people do not know that health authority funding is even an option; they just get led down the road blind. It makes me furious.