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?

Thanks for all the advice. Sadly it is too late for my mum. She will probably die in the next couple of days. I saw her on Saturday very briefly. I want to be with her today as she dies. I have been told I am not allowed.

Is this legal? How do I get in to be with her? This is heartbreaking. She’ll die alone.

I’m very sorry @OmLet and I hope you find a way to be with your mum 💐

End of life usually means you only have a week of life left

This isn't true. It can go on for quite some time. I know from experience.

I'm so sorry OP. I was with my mum a lot when she was dying in a care home but ultimately when she actually died we weren't there because it can't be predicted really not the exact time anyway.
Often patients die when their loved ones have left.
It's heart breaking for you I know.

I was going to echo what Mischance has said having secured CHC funding for a relative but am so sorry to read your update. Will they not move her to a hospice?

By law your Mum has a right to be in her own home. They can not force her into a home if she doesn't want to be there. However, not sure how easy it is if she is already in a home.

It will be Continuing Health Care who will be paying for her current care needs and it is notoriously difficult to get them to fund anything.

Speak to Beacon, who are funded by the NHS, www.beaconchc.co.uk/ who can offer free advice with regards to the funding and they may be able to help you with this situation.

Apologies if I am not allowed to put company names but we used a company called Elder Care Consultants. www.eldercareconsultants.co.uk. You had to pay for these services but our consultant was amazing and helped us get what my Mum had a right to.

Also, does she have a social worker? She may have been assigned someone from Adult Social Care. You could contact them and seek their help.

Do you have Lasting Power of Attorney? Does your Mum have the mental capacity to sign an LPA because this also will help you?

I wish you all well it is a horrible situation. You will need to fight for help, but don't be afraid to get tough with people. She has rights to her treatment and sometimes this is forgotten over budgets.

Often patients die when their loved ones have left. Yes, this I've heard about so many times. My own mother waited until my dad had stepped out to have a word with the nurse.

But that doesn't mean to say you shouldn't try to be with her. I do hope you manage it.

The government guidelines seem to allow visiting at the end of life, even in a high risk area. Perhaps send this to the care home and ask why they are denying you access:

www.gov.uk/government/publications/visiting-care-homes-during-coronavirus/update-on-policies-for-visiting-arrangements-in-care-homes

I am attaching the most relevant bits as screenshots.

I’m so sorry, @OmLet

Thanks sparkling. I have pointed this out to them but they say they take direction from somewhere else. I can’t quite get to the bottom of it. I will send this to them though

@OmLet I would get on to your local MP or their secretary that’s usually quite effective in getting things moving quickly .

floral my MP is decidedly crap. She has been no help at all. This all feels very very wrong. I feel very helpless. I don’t want to give up and let her die alone but who can help me?

We had end of life care for my Auntie and it was fully delivered at home. It was not easy and took a while to get her medication and everything correct. Prior to her being discharged from hospital we had to take delivery of a hospital bed, hoist and other equipment needed (this took time).

They provided carers four times a day to move, wash and change her, they were in and out in minutes the rest of the care was the families responsibility.

The district nurse also came out but this was mainly to adjust/monitor medication.

So hard for you - I really do feel for you. Nursing and residential homes are between a rock and a hard place. They have to protect their residents and staff, because infections like this can sweep through a home and kill many, and if staff have to go off sick or self-isolate they can find themselves with insufficient staff to run legally. I am sure you know all this. And none of it makes this situation any better for you.

Of course you want to be with her in this final stage of her life - no wonder you feel helpless. We are indeed all helpless on the face of this epidemic; and it is so sad that it has come at this time for your mother.

Has a doctor confirmed that the expectation is that she will die in the next couple of days? Is she conscious and aware and able to make decisions? If the end of her life is truly so close, then the home should use the rules outlined by an other poster above. But I understand their reluctance - they are probably part of a group of care homes, whose rules are set for all the homes - so the director on the ground is likely to be bound by these.

I truly do not know what you can do. Bringing her home for those few days is likely to be hugely disruptive and distressing for her, so her best interest might be served by staying put. But I do understand why you need to visit if she would be aware of your presence.

Such sad times for you - I am sending you a hug.

I was in the end not there when my OH died - he had been unconscious for several days, so in a way it did not matter - but it felt hard.

I'm so sorry. I don't think I've had any advice to offer along your journey but I've followed along. I hope you get to see her.

OP, have you spoken to the care home manager?

I suggest you contact your Mum's GP ASAP to intervene. I would also contact the CQC and raise this with them. You are allowed daily visitation at EOL unless they are having a covid-outbreak but even then it gets very vague (and no real reason you can't go in if you are willing to sign a waiver and wear PPE.)
I'm sorry about your mum.

Thanks again all. Just to let you know, my dad was finally able to visit this afternoon. And we will both visit tomorrow. My brothers are not allowed to visit but we have accepted that. I’m not sure she knew my dad was there today but it’s something we have to do even if it’s just for us at this point. Thanks for the support x

@OmLet at least that is something , I hope your mum has a peaceful end 💐

Oh I’m so glad your dad got to see her. It must be so important for him to have been able to do this. Sending you strength for tomorrow .

@OmLet

Thanks again all. Just to let you know, my dad was finally able to visit this afternoon. And we will both visit tomorrow. My brothers are not allowed to visit but we have accepted that. I’m not sure she knew my dad was there today but it’s something we have to do even if it’s just for us at this point. Thanks for the support x

I thought I’d tell you about my experience of being with my grandmother when she died. She had been in a home for 7 years, had dementia and was not aware of who we were when we visited. She eventually deteriorated to the point where she was on an end of life care plan. We were told she may live for a couple of days. Myself, my sister and my mum all stayed with her for the 2 days before she passed. She was totally unaware of our - or indeed anyone’s presence for that time. In fact, she was unconscious for the last 24 hours. I honestly don’t think us being there made a jot of difference to her, it was more for our benefit. It sounds like your lovely mum is at that point now. So whilst I totally get your desire to be with her, it will make no difference to her. You’re not letting her down. When you visit tomorrow, take the time to say your goodbyes - we did this, we spoke about the times that meant the most to us, and told her how much she meant to us. Her passing was very peaceful. I hope your mum passes equally as peacefully. My thoughts are with you x

OmLet I am so sorry
I have very recently been where you are but my mum died in a hospice. Visiting was limited until her final days but not as badly as in a care home I think.
For the last 12hrs she was deeply unconscious and if she did know we were there she gave no sign
We read to her and talked to her anyway.
My dad and I were with her but my siblings had just left and I don't think they felt deprived not to be there at the very end as they felt they had said their goodbyes.
I think what's most important is that you feel you have some closure and can let go.
I wish you peace.

If your mum can manage the transfer to her home you can get her home.
Ask the NH if she has continuing care if not she needs one done and possibly a fast track form.
Talk to your local hospice they probably provide care at home. Many provide a hospice at home service which can put carers and equipment in place quickly often the next day. And Even before the continuing care forms have been submitted.
Most likely she would get 3-4 visits a day and family will either have to provide card overnight - you might be able to get a MariCurie nurse if your struggling though. Other option is to pay privately for night time care.

All of it is dependent on what your hospice services provide. Give them a call and see if they can help.

It’s ridiculous she can’t have visitors in her final days and hours.

I’m so glad that you and your dad have a visit planned for today, @OmLet. For your mum to be at this stage of life is such a difficult time even without these added complications.

I'm not sure, have have you asked for a hospital bed at home?

Just wanted to come on and say, I’m so sorry for what you and your family have been through. I hope your mum is ok or at peace💕 this is absolutely unacceptable! Nobody should be treated this way and it’s basically holding somebody against their will and their family’s will, to die alone haven not seen their family in weeks. It’s absolutely shocking and I hope at some point, you find somebody to hold responsible and to answer for all that your family have been put through!💕 COVID or no COVID, it’s not fucking acceptable!