Elderly mum, massive stroke, hospital pushing for discharge- HELP!

[Shodan]

My DM went into hospital 5 weeks ago after a series of falls. While in hospital she suffered a massive stroke. Now the hospital are saying she can be discharged and asking if anyone has power of attorney. They have also said they're not sure if she needs continuing healthcare.

Mum is paralysed down one side. She can't speak. She has a catheter. She has, as of last week, been able to eat very small amounts of food, but has to be fed, she can't feed herself. Before lockdown she was being assessed for Parkinson's, and has a list of other medical conditions.

We don't know if she has appointed a power of attorney. It certainly isn't any of us, but we can't even find her will at the moment, let alone any other official documents pertaining to this kind of thing (she has hoarded paperwork going back 40 years!!)

I don't even know where to start. Are we supposed to find a nursing home? How do we get a proper assessment for continuing healthcare? Will it be difficult to get her into a nursing home right now, with the covid situation? How do we go about selling the house, if that's needed?

We've barely spoken to any doctors, as we have to wait for them to call us. We can visit 3 times a week, by phoning the day before. The phone line is only open for 1 hour, and if you can't get through, you're stuffed.

Can anyone point me to any organisations we can speak to? After a long and fruitless wait on the phone to Age Uk, I have emailed them so will wait for a response from them. I know about Stroke.org.uk, but is there anyone else?

I feel totally lost, and the situation isn't helped by one of my brothers being obstructive about things -he refuses to face the possibility that Mum is unlikely to fully recover.

Any advice would be gratefully received.

You’ll know, LemonPeonies. What’s the name of the assessment that must take place before discharge?

Do you mean the DST? Or CHC checklist? In our county people discharged from hospital are NHS funded for 6 weeks or so with a DST in the home/social care assessment like previous poster said. Sone homes (like us) are doing brief viewings too.

Hello! I am a social worker for older people.
The hospital will have their own social work team. Ask them to assess her prior to discharge - tell the ward you are waiting for this assessment. Sometimes the ward will do CHC checklist (to see if eligible for full assessment) before discharge but they might wait until she is discharged, wherever that is to. Social care will be able to help and advise you but please do message me if you need any advice at all. Take care, it’s such a stressful time so make sure to have some support for you too. X

Hi, OP.
I'm very sorry for the situation you find yourself in.
Mine is a bit different, but might help you see a way forward.
My DM is 78 and had a serious fall in early July (broken femur around previous hip replacement and four pelvic fractures now found). She spent a week in hospital, than three weeks in a community care facility, funded by the NHS. (They don't like the word rehabilitation!)
She's now at home, with carers going in three times a day, still funded for her. This will last for at least six weeks.
I know your mum's need are different, but I wanted to reassure you that there should and ought to be care available for your mum without it being your responsibility, at least for a while.
I know how worried you must be. Please try not to, but you will need to be strong and refuse to take any responsibility for finding care for her at the moment, so that you force those who should to find the care your DM needs.
It's horrible, because you feel like you're demonstrating that you don't care, but actually you are fighting for the care your DM is entitled to and deserves.
Good luck.

@LemonPeonies I think that's the meeting they want to schedule for Wednesday. Unfortunately because of COVID restrictions they would only allow 1 family member to be there, so we've asked for a virtual meeting instead (some awkward family dynamics going on at the moment)

I've had an email back from AGEUk, which, added to what you've all said, has given me enough information to go on, for now anyway.

Apologies, I didn't read through the thread yesterday as I had a baby attatched to the boob all night good luck with the meeting, make sure to get your point across x

We usually call it a MDT meeting or discharge planning meeting.

Whatever you do, don’t t let them send her home before you have made arrangements. Make sure she doesn’t have house keys, in case they try anyway (it has certainly been known!) and if the hospital pushes, tell them firmly that there won’t be anyone there to receive her.

Don't let them browbeat you into thinking that this is your responsibility. It isn't. They want to free the bed up.

If they think they can discharge her because you give any indication that you will be responsible, they will. I had this situation with my uncle and I had to put my foot down extremely firmly.

Yes @sycamorecottage, I remember similar with my Dad- he used to tell them very firmly that there he had no-one to look after him at home. Mum, on the other hand used to tell them that I and my sister would be taking care of her. That left us in a very difficult situation.

However, this time Mum can't tell them anything as the only speech she has is to repeat occasional words that you say to her. I have warned my siblings about not saying they'll be caring for mum, so that's a start.

@GETTINGLIKEMYMOTHER I sincerely hope they wouldn't try and send her home- she is paralysed and can't feed herself/toilet herself etc but fortunately we do have the house keys, in case they tried!

My mother was assessed for CHC when she was in hospital, on the Liverpool pathway. This was 11 years ago and it was basically a battle between the LA and the NHS as to who should pay for her care. The LA told us that if the NHS refused, we should appeal the decision. It was a v high bar to get CHC. Dementia didn't count. You were only awarded it if the patient needed a registered nurse to treat something like a tracheotomy, not for the basic care on its own, even if the patient was bedridden. I seem to remember that stroke patients were a grey area.

NHS said No. We appealed. The decision was reversed and I heard that she would be granted free continuing NHS care, two days after she died, still in hospital. The grounds for overturning the original decision were that she needed a nurse to determine if she had changed her mind about refusing to eat or drink. She was 94 at the time and had been admitted to hospital because her domiciliary care agency alerted us and her GP when she started hitting out at anyone attempting to put a cup or a spoon in her mouth.

It was all v upsetting. Fortunately, my db and I were on the same page. It sounds as if it would be a good idea if a doctor could speak directly to your brother.

Much sympathy to you, Op.

Thanks, @Thymeout.

I've had a look at the checklist for CHC, but obviously as a layperson I can't say what, if any of Mum's symptoms/issues, would qualify.

I do know that she is on minimal solid foods, and the dietician is monitoring her to check for sufficient calorie intake. If she isn't taking in enough calories, she'll have to go back on the PEG, which I would assume would be something a registered nurse would have to do.

But who knows. I only know that all the authorities will most likely try to offload her care, and we will have to fight it.

Stormy times ahead for sure.

Is it worth me contacting her doctor, does anyone know? There was also a letter from a neurologist that she was supposed to have a phone appointment with- should I contact them?

Just wondering if they might be able to add weight to the CHC assessment.

Not a lot to add, but I believe that CHC assessments are now done in care homes, not in hospitals. I was looking after my Aunt after a severe stroke in the winter, and was told that it had changed last year.

As your mum has savings, she will be assessed to see what she has to pay, but then the home will do the CHC assessment, and she may well be entitled to extra funding by the sound of it.

Sorry to hear that you are going through this. It is a minefield and there is so much for you to learn, at a time when you probably just want to be spending time with your mum.

Once her savings start to head towards £23k you need to ask for adult social services to assess her for a funded place. A care home will cost c£800 per week, so her savings will go down quickly. However if she is given a diagnosis with less that c12 months to live, she can go onto a fast track, where money is released to support her irrespective of savings. The doctor fills out a form - a D15 or something like that?

Best of luck.

PS I found that it helps if you can get to know the Discharge Co-ordinator on the ward. Their aim may be to move patients on, but they also have to sign off the risk assessment for someone to be released. I you can get their email address, they can be a really useful person to befriend/work with, IME.

If your Mum does have Parkinson’s and needs to be in a nursing home because of that , then it is paid for by the LA. She would have to pay for her own care in some circumstances, but not in others.
What a nightmare for you, I have been in a similar situation, but not during the pandemic, it was difficult and stressful enough without the added awfulness of not being able to go into the hospital and talk to people, so I am very sorry you are dealing with this now.
If they are going to discharge her, then given all her problems they should discharge her to a rehabilitation unit, where her to do various things will be assessed so that her needs can be met, either with carers at home, or by going to a nursing or care home.
You need to know they plan to do with her if there is no care/nursing home bed available yet (if she needs one ).

@Shodan

Is it worth me contacting her doctor, does anyone know? There was also a letter from a neurologist that she was supposed to have a phone appointment with- should I contact them?

Just wondering if they might be able to add weight to the CHC assessment.

It's absolutely worth a try, especially the neuro. Though as someone with a progressive neurological condition my gp knows me and my struggle with my condition much better than my neurologist does so definitely worth contacting both.

Ok, thanks @TheCanyon.

Sorry to keep on with the questions but- do hospitals have a patient's full medical history? Mum's is long and convoluted (quadruple heart bypass, suspected Parkinson's , only has one kidney, amongst other things). She's something of a regular at her doctor's surgery.

Assuming she hasn't moved areas then yes they will do @Shodan

Ok good, @TheCanyon

Thanks again everyone, for your help. I really appreciate it.

About eating and drinking.

Does she already have a PEG inserted (stomach tube)? Anyone can be trained to use one, family or carers, it doesn't have to be a nurse. Or does she have an NG tube in her nose at the moment?

I'm struck by what you said about her never wanting to be in this situation. The consultant will be making decisions in her best interests. Do make sure you communicate her past views on what good quality of life looked like. Would she want artificial feeding, or would she rather just have whatever she can manage by mouth or East she prefers by mouth even if she coughs, even it gives her chest infections which could shorten her life? What is her realistic length of life left - ask the consultant to talk about the evidence on that?

@PermanentTemporary She had an NG tube for 4 weeks, then a PEG for a couple of days I think, but has been eating small amounts of soft foods (teaspoonsful, things like yoghurt/mashed food) for about a week or so now.

Sister and I have told the doctors about this being Mum's worst nightmare, and they did ask us as a family to consider giving them permission to not treat any further major infections but give pain management only, and she has a DNAR on her file, but they haven't said anything more since Mum started eating a bit. They haven't given us any indication of life expectancy either.

I couldn't say for certain about Mum's preferences about feeding, as we never discussed it directly- all I can go on is what she did say, many times- that she feared this exact situation more than anything.

One of the biggest difficulties of course is actually being able to speak to a doctor- our visiting times are severely limited, their hours don't always coincide, and naturally they're rushed off their feet as it is, so we haven't been able to speak to them much,

Of course.

I would write to them. Just by post, or ring and ask for the stroke consultant's secretary and get an email address that way.

Write exactly what you've said here. Anything you can remember about things your mum said about this situation. Ask them to consider just giving her things she likes to drink (not if really uncomfortable though) and no further antibiotics or intrusive observations.

I work in this field every day - do message me if you'd like but you probably have enough to think about!

I should say as well that my dad had a stroke last year and died after 5 weeks and I fought for him not to be (in my view) overtreated. It was an extremely hard thing to do and I doubted myself a lot but I have no regrets now.