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.

[Shodan]

Sorry should probably have said - Mum is 85.

[snitzelvoncrumb]

I can't answer your questions, but don't allow them to discharge her until its sorted. Ask to speak to someone about what she will need then wait until its been sorted first. All the best x

[gassylady]

Sorry to hear about your mum, the lack of visits must be hard for you all. If you mum lives alone then it does not sound as if it would be safe to discharge her at the moment. At the very least an assessment of the home should be made by occupational therapist. Think you need to stand firm as a group and say that you are unable to care for her yourselves.

There is a specific board called elderly parents - I think in other stuff section- There are some very knowledgeable posters there maybe ask HQ to move this or start another thread.

[Lillygolightly]

You need to get in touch with Adult Social Care Team in yours/your mums area. They will assess what your mum needs, as she may need to go into a care home or she may be able to go home but with carers coming in at different times of day.

Your mum needs to be assessed, I am surprised that the hospital hasn’t pointed you in this direction.

[ivykaty44]

contact your mums county council social services
ask the hospital what they are going to do and what equipment they will get sorted for your mums return home

sorry about your mums health, its a difficult time made more so by covid19

[gelert5619]

Patient Advice and Liaison (PALS) at the hospital are there to help. Explain to them what you've written here. Please stand firm as the pressure to discharge patients, even frail ones is strong. I you good luck and success.

[Elbels]

Ask to speak to the social care team in the hospital, plus has she had an assessment by at occupational therapist and physio to look at her home environment?

Are they expecting her to go home or to a nursing home? If she's going home what equipment do they think she needs? If to a nursing home the social care team should be able to give you a list, even if she's self funding. Continuing care funding asx should ideally be done in hospital for ease (at least that was the case 8 years ago)

Contact your local carers organisation, they might be able to help you through this process in knowing what support is available.

[growinggreyer]

You need to make contact with the hospital social worker and express the view that your Mum perhaps needs to be discharged to a nursing home for 'convalescence'. They will (should) assist the family to get an acceptable care package put in place. It might be possible for her to come home with carers several times a day but she should qualify for some respite care while you set this up. Sorry that this is happening, it is a horrible time to have to go through this. We visited so many nursing homes and some were totally unsuitable for our relative in terms of the daily routine and the ethos of the place. Maybe you could find personal recommendations from friends/neighbours?

[RootBeerFloat43]

I think it's probably a lack of communication but it is not on you to sort discharge, the hospital will be leading on it. The occupational therapist and the discharge liaison co-ordinator mainly. For an 85 year old that cannot speak, swallow properly and is incontinent, there will definitely be procedures in place to ensure she get the correct support. At my hospital, we have a family meeting with all involved (nurse, doctor, all therapists, discharge co-ordinator) to discuss dischage destination before anything happens. They are trying to find out who or if anyone has power of attorney because that person will be the key decision maker. Someone has probably told you they are considering discharge but there will be specific steps to take you through this.

[Allnightlong2016]

Ask the hospital for discharge planning meeting to establish what support needs your Mum has. If she needs nursing care which from your description sounds quite possible then she will probably need a care home placement. It’s not difficult to go into care homes at the moment. Depending on her finances and whether your mum is entitled to CHC funding, this may determine the choice of home. I would recommend that you check the CQC website for inspection reports for any home you are considering. Your mum may still improve further as it is a relatively short time from her stroke and a rehab placement may also be an option. It’s worth asking and may help your brother.

[Shodan]

Thank you all.

We've been told by an occupational therapist that someone from care liaison will be contacting us, although which one of us is unclear at the moment. Different hospital staff have contacted different family members for different things. (That's when they've got the right patient- on a couple of occasions they've told us things pertaining to other patients!)

From what we were told by one doctor, Mum going home is out of the question, because her needs are such that she requires 24 hour attention. Whether that's changed or not I have no idea. But when I spoke to the doctor who seemed to know the most, the chance of proper recovery is minimal- the implication was that her ( the doctor) opinion was that mum will have months left, not years. But no-one can say for sure, of course.

I'll work my way through the suggestions you've all made, for which I'm very grateful.
I feel so desperately sad for mum- this situation is what she dreaded the most.

[TorysSuckRevokeArticle50]

Age concern has a lot of really good resources and support available to help you to wade through the process.


www.ageuk.org.uk/information-advice/care/arranging-care/

[DidoAtTheLido]

First of all she should be supported by an NHS funded ‘enablement’ package for 6 weeks. Do not agree to her being discharged without this. After (During) that there will an assessment for Continuing Care from the council’s Adult Services.

Do not say you are available to do any regular care at all. Fight for the biggest package you can get. There should be help from physios and OT, carers 4 times a day, continence assessment and support.

Good luck!

[newidentiy]

Hi, we are in a similar position. It is horrible, made even worse by we can't visit at all and doctors are useless at communicating.

i was told by Social workers that even when the doctors say she is medically able to go home as they have done all that they can do medically it will not happen just like that.

At that point social services and OT step in and do an assessment of her home and needs, etc so essentially overrule the doctors saying "hometime".

We had the exact fears that you did until we spoke to SS. Hope this reassures you to some extent. My thoughts are with you, this really is a dreadful situation to be in.

[guinnessguzzler]

If you have a local carers centre or similar it would be worth getting in touch with them too. They may well be able to help you navigate the system.

[jessycake]

From experience you have to be very firm with them , and even then It doesn't always run smooth . Like everything they flip you back to one department to another and don't always answer calls . Get together and demand action or they may send her home with an inadequate care package despite it being inopropriate .She will probably be found a place in a nursing home , but it may not be the one you want at first , and out of your area, it may be a shared room unless you pay for a top up, your mum isn't allowed to . If she has a place to sell you the local council will pay for a period and your mum will pay it back when the place is sold. Its a hearbreaking time x

[Shodan]

Thanks again everyone.

My sister and I visited today and had a meeting with the ward sister.

They want to set up a meeting with the discharge liaison team, which will be happening on Wednesday. There is no question that she'll be going home apparently- she needs medical care and also she isn't mentally capable of any decisions.

So now we have to apply for deputyship, which can take months, according to a solicitor my sister spoke to.

It is such a shitty time, emotionally draining for us and it's hard to keep track of everything that's going on, so I am extremely grateful for all your help- it gives me a checklist of what I need to do.

[DinosApple]

I'm so sorry you're going through this OP. Very similar happened with MIL. Massive stroke, paralysed down her right side, aphasia. No massive recovery sadly. She was in hospital for 3 months due to not being able to discharge because they had noro on the ward. And no power of attorney.

Me and BIL attended a meeting with a SW and a hospital rep. There was no way she could go home - although they did measure to get a bed in her living room with the idea that carers would come in twice a day. I think I had to point out that her being home alone would be insanity. It all came to who was funding what. The NHS funded part and SS funded part. And she had to go into a nursing home (as opposed to a care home).

Both BIL and DH were keen for her to go home or come to live with us. I think it was the shock of the situation. It would not have been possible, and it would not have been liveable for either household to cope long term. She had the stroke aged 84 and only died this year at 90. We were told she may not survive the day let alone 6 years more. More than that, she enjoyed those 6 years in the care home and loved the staff. She never regained her speech or movement, but enjoyed joking with the carers in her own way.

Because she didn't own her home fully (lived with BIL shared ownership) she didn't have to pay for care. That took years to sort, they said they'd put a charge against the house to be repaid if BIL ever sold, but actually - as he'd paid for it outright - and could thankfully prove it - they dropped that.

BIL tried to sort power of attorney, but gave up. There was some complicated thing where it would have to go to court and MIL might be a ward of court for a bit - I forget now, and would cost in solicitor fees. But we didn't bother in the end, and it wasn't necessary. It would have made things a lot easier though.

Anyway, me and BIL visited local nursing homes. We had a choice of two with funded NHS beds and picked the home that felt best.

If you are doing the looking and can have her in a home near to you, that will make life easier. Visit it (if you are allowed!) and see the staff in action. Visiting regularly is so much easier if it's close by.

it's really tough OP.

[stairway]

When doctors say she is medically able to go home, what they mean is she is medically fit and no longer needs hospital treatment. After 5 weeks there is nothing else the hospital can do for her. It doesn’t mean that she can be discharged home though without support in place.

[DidoAtTheLido]

So sorry you are going through this. This was me a year ago.

Sorry, meant to say there is a difference between being medically signed off by doctors and being able to go home, because of support.

Is there any suggestion that they would send her to a convalescent or stroke rehab home after hospital?

Hopefully during the delay AgeUK will be able to get back to you.

There will be all sorts to consider;
Can she stay in her own home with carers coming in? Any adaptations needed?
Has she got savings? (More than ££23k, I think) If so she may need to find her own care after the first 6 weeks so called ‘enablement’
Would the LA provide 24 hour live in care?
Would she need to sell the house to pay for care?
Since Deputyship will take a while, how will the care be funded in the meantime? (Don’t worry, there are arrangements for this).

If she stays at home there are other things to look out for:
Council Tax reduction if she has no mental capacity.
In due course, get a Blue Badge to make it easier to take her places.



Tough time.

[Thymeout]

So sorry you are in this position, Op. I had similar with my dm, so understand the emotional and practical difficulties.

Others have provided useful information. All I can add is a reminder to everyone to PLEASE get a power of attorney into place, long before it's necessary. In our family, we now do it as a matter of course at retirement age. Much easier, with no negative undertones, and it will save you so much time and money if/when it is actually needed.

[Shodan]

She does have savings (to our total surprise!) and owns her home outright, so could pay for her care if necessary.

I know she'd prefer to be in her own home, but she would need carers coming in many times a day I think. I have no idea how that would be paid for, but it's something to think about and do some research on.

The ward sister today talked a lot about the CHC, so I don't know if that's what they think is going to happen, or not. Hopefully things will be clearer after Wednesday.

[LouiseNW]

I’m so sorry, I can’t remember the name of it, but your mum has a statutory right to a social care package assessment before she is discharged.

[LouiseNW]

I think it may be an assessment for NHS Continuous Health Care?
I am sorry, I can’t recall the precise name but your mother can’t legally be sent home until this has been done and her needs identified/appropriate package put in place. Age Concern/PALS will be able to advise.

[LemonPeonies]

I'm a nurse in an elderly and rehab ward. It's our job, along with the DR, physio, OT and social work team etc to communicate with the family. From here we usually all agree together on our best options for discharge. Whether that's home with help, residential home, nursing home etc. Ask to have a meeting about it with the staff, it's unusual for them to leave it all up to you!