Mum had stroke, where do we even start now? She's desperate to go home from Hosp but not well enough

FrankFalcon

Hi all

This is a very sad story about my partners Mum.  The family are heartbroken.  The reason I am writing this thread is to gain ideas of support for what we can do next.  I am not looking for medical advice, diagnosis or advice on how to make the lady better or recover from her ilnesses.  Unfortunately, the lady is so poorly that she will not get better...therefore, we are looking for advice on how other people have coped with similar situations with regard to carers, nursing homes, live at home carers, Devices/machines to help the patient at home, respite homes, live in carers etc etc.  I am sorry if some people think that I shouldn't be writing this here but the family are looking for ideas/solutions on what to do for the best of the family and the patient.  Surely, somebody, somewhere has encountered similar circumstances and may have an idea that we can put to the medics or social services.

So, the story goes...The lady, 85, had a stroke 7 weeks ago.  Since then she has been in hospital.  While she has made a 'good' recovery (from the stroke) it is apparent that with her age, the effects of the stroke, the time spent in a hospital bed (not using her legs), the weight loss etc etc the lady won't be able to use her legs again.  However, she is sat up in bed, eating, drinking & chatting but she is desperate to go home.  She cries every time one of the family leave her bed to go home and asks them not to leave her alone.  The hospital have said there's nothing more they can do for her (with regards to the stroke) because she has 'endured the worst of the stroke' and 'staying in a hospital bed all day forever will do her more harm than good'.  So, the hospital have contacted Social Services and told them Mum is ready to be discharged.  Social services visited the lady 2 weeks ago and agreed with the doctors and told the family "The lady will be discharged when we have found her a suitable respite place".  They haven't said much more than this to us because they told us "We have to have all the meetings with the lady alone so that family members cannot apply any pressure either way by interfering for their own ends".  This we accept. 

So, as it stands today, Mum is still in hospital waiting to go 'Somewhere'.  Somewhere we don't know where or when.  

QUESTION 1: Does anybody have any similar instances of this or any experience? What are we waiting for? How long? Where will Mum go? Who selects? What if the family disagree with Social Services?

So, Mum is very distressed and just wants to go home, therefore, we looked at what we would need to do if we were to take Mum home.  Her upper body is working fine but unfortunately from the waist down she has no strength.  That's not to say she is paralysed...It's just that she's so old and weak that she would certainly fall.  We discussed if there was a way of letting her go home and having carers visit a few times a day.  It must be taken into account that Mum cannot get in and out of bed to use the toilet etc, so this would be required.

QUESTION 2: Does anybody have any instances of where this has happened? how it would work? Does a person live in Mums house all day everyday? Who pays? How much is it?

So, given that Mum is very distressed and just wants to go home and that her upper body strength is fine.  She could cook for herself etc...

QUESTION 3: Does there exist any machinery/devices that would allow Mum to somehow shuffle/move out of bed to an electric chair to get to the toilet? Does there exist a chair where Mum could do her toilet business and the waste is captured under the chair in a commode to be emptied later?  Of course, then she'd need to get to get back to bed later on?

QUESTION 4: Please, does anybody know of any instances such as this where a person is fully aware of their surroundings, mentally fit but with failing legs (ie...needs help to go to the toilet etc?)

I know at this point the easy answer is...Put her in a home...They will sort it all, but we would rather that be the last resort.  Mum knows full well she doesn't have long left (The doctors told her that 6 months ago after beating Cancer, albeit with long lasting chest problems).  Mum knows she is ill but we just want her (if possible) to be at home for her remaining time, rather than the same hospital bed or a nursing home (which puts the fear of God in her).

As I said, I am not asking for medical advice.  She has enough Doctors who have all been brilliant but the reality of this is that Mum's hospital bed is required and she has to leave hospital, which we fully agree with.  She is desperate to go home, even with these disabilities.  We'd be grateful for any ideas of who we could chat to for help, ideas, support, equipment.

Thank you all.  God Bless you all and have a Merry Christmas.

FlorayG

How much can you afford? My mom was similarly distressed with congestive heart failure and unable to walk more than a few steps. Luckily she had substantial savings and pension so i engaged a full time, live in carer for her which worked perfectly, mom was allowed to do everything she was capable of and had help on hand 24 hours a day if she needed it. It was £1,000 a week though - but my mom was NOT going to go in a home, she just refused. It worked really well for her and I understand a decent care home is a similar cost
As for aids, you can get most of them for free and fitted as well, my mom had grab rails and a wheelchair ramp and a walker supplied. She could have had a wheelchair as well I think but we bought one as she was so tiny she needed a child sized one
Best wishes, I know this is lhard on everyone as I went through it. Money helps a lot if you have it

BrilliantButScary

I would advise that you consult the following website:

https://www.ageuk.org.uk/

There are lots of useful guides on there to help with your current situation and going forward. You might also find the link below helpful, in particular the information about the health and social care needs assessment:

https://www.nhs.uk/conditions/social-care-and-support-guide/care-after-a-hospital-stay/

There is also the following organisation:
https://www.stroke.org.uk/stroke

Emmia

I think money is key, there's a whole host of aids, adaptions, and support available IF you can pay for it. 

Would your mum consider living somewhere else (not a Home) that has been adapted to enable this?

Sarahspangles

A way forward will be clearer when she’s spent time in a respite home which can focus on rehabilitation and assessment. They will have the sort of aids you’re talking about and will get a feel for the type and number of hours of carer support that will be needed.

Albermarle

 but she is desperate to go home.  She cries every time one of the family leave her bed to go home and asks them not to leave her alone. 
Pretty much everybody who is in hospital who is not very ill, wants to go home at the earliest opportunity, so just normal.
So, as it stands today, Mum is still in hospital waiting to go 'Somewhere'.  Somewhere we don't know where or when.  
You should be aware the lady's situation is very common, and every hospital has many many elderly patients in similar situations. It is one of the reasons that their are often not enough free beds as it can take weeks to sort out the discharge of some older people, not helped by social services depts being very stretched/underfunded/understaffed.

elsien

Sarahspangles said:

A way forward will be clearer when she’s spent time in a respite home which can focus on rehabilitation and assessment. They will have the sort of aids you’re talking about and will get a feel for the type and number of hours of carer support that will be needed.

I disagree that these short-term places do much in the way of rehabilitation at all. They are short-term beds in ordinary nursing homes, and they’re not going to do any more assessment or rehab than has already been done in hospital
The hospital send people out to care homes, allegedly for assessment if the nursing needs route is being looked at and the person needs a continuing healthcare assessment. But they are not specialist rehab places, they do not focus on rehabilitation and assessment. They’re more like a holding bay while processes happen. Occasionally if you’re lucky with an outside physio coming in once in awhile. 

So I think the OP needs to ask if any nursing needs assessments have yet been carried out.
Because care homes are used to free up hospital beds for people who are medically fit for discharge while the local authority and health argue about who is funding what.  

Most important question is is does she still have capacity around where she lives in the long-term? if not, is there any sort of power-of-attorney in place?
What occupational therapy assessments have been completed in order to know what aids she might need and whether she needs one or two staff to support her to move in and out of bed. Is  her property adapted and wheelchair accessible? Is there room for a hoist if needed - Some people can weight bear enough to transfer between bed and chair using a standing aid, for example others can’t stand and need hoisting and all this impacts on the level of care she will need in the future. 

Is she safe to be left on her own for short periods if she has everything she needs next to her bed and can she still call for help if necessary? What else has her stroke affected other than her mobility?
All these questions you need answers to before you can think about what her care will look like in the future. And it may be that a short term bed is better than hospital while this gets looked into, because hospitals have a higher risk of infection. Then you’re looking at costs and how much money she’s got and whether she can self fund care at home.

My grandmother was able to pay for her own care when she only only needed one carer, but when she started to need double up, it became unaffordable. 

So ask the hospital does she need a nursing needs assessment, has she had one? And will it be done in Hospital or somewhere else?
https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

Flugelhorn

possible solution would be to discharge to a rehab unit (sometimes in a care home) where they may be able to get more of an idea as to what she can and can't do for herself and an idea of the package of care that would be needed at home to manage this. I think though that someone with such significant mobility would find it very hard without live in carer - being able to transfer is the key and most elderly people don't have the upper body strength to do this . I have known of a few people who have the 24/7 home  care package, it is expensive and relies on them being able to find a rota of good people to do the job. 

elsien

Also to add that if she has capacity,  legally there is nothing to stop her leaving hospital and going home. It may be an incredibly unwise decision indeed to do that with inadequate support that ends with her back in hospital, but just putting that out there because sometimes hospitals say to people they can’t go home because it’s not a safe discharge when if someone understands the risks they are taking, it is their decision to make regardless of what anyone else thinks. 

Plus if the mother-in-law wants a family member present with her when she’s talking to professionals she absolutely has the right to insist on that because coercion can go both ways (not always deliberately) and there can be a tendency for older people to believe professionals implicitly. Even where that isn’t merited. 

Albermarle

OP
Regarding NHS continuing healthcare, as per the useful link provided above.
This effectively means the NHS will fund your care outside hospital, because you are deemed to have ongoing significant medical needs. There are quite stringent rules/guidelines in place, not least because the NHS would prefer not to pay for it. The funding is not means tested.
However if you are deemed just to need care, however intensive that might be, you will fall under the responsibility of the social services dept of your local authority ( of course you can still get NHS treatment and see your local GP, go to hospital appointments etc) The care services the LA provide are means tested, and you may well have to pay for your own care.
There is actually a kind of middle option. If you need to go to a nursing home, or go to care home where you need some professional regular medical treatment , the NHS may pay for the extra cost of this, whilst you/the LA pay for the main care/residential costs.

elsien

An OT should have carried out at least basic assessments while in hospital around her mobility - whether she is safe to stand and shuffle or not, for example. Ask that question and ask what mobility aids she will need moving forwards. If she needs a hoist that can only be done safely with two people, for example. 

If going home is going to be a possibility (it is very unusual for anyone to agree to fund a live in carer or 24/7 care so that would have to be self-funded) she will need an OT to assess her home environment and they can advise on the sorts of questions you are asking and what they are able to provide. The social worker can make that referral. 
With regards to carers coming in, if she might have some nursing needs (and having a stroke and not being able to walk does not mean that she does, in our mad unjoined up system) then the CHC assessment would come first and if it is decided that her needs are more social care, she would have a care act assessment to determine what those needs are and how they will be met. Your guide to the Care Act (England) | Carers UK

If she can self fund then the local authority may well just give you a list of providers and tell you to sort it yourself.
She will have a financial assessment to see what she needs to contribute or whether she needs to pay the lot. 
If she can't self fund then her options will be limited but trying to get people home where it is safe to do so is what the local authority should be aiming for with the caveat that they can take resources into account so if she is going to need more than 4 or 5 care calls a day then persuading them to pay for more is going to be very hard and you will then be more into residential or nursing care territory unless family can pick up any of that slack. 

You might also need to look at technology such as lifeline (or your areas equivalent) if that is not already in place in case of emergency. 
And you do have to think about the bigger picture - you say she can cook for herself because of her upper body not being affected, but that would still mean her managing to get herself safety into the kitchen without falling, being able to get things out of the cupboard and fridge without falling, make a hot drink without falling or burning herself and then having enough room in the kitchen for a wheelchair, or a walking frame, or a perching seat, or whatever it is that she needs. The same with washing or showering - does she have an accessible shower with enough room for a shower seat or is she happy to have bed baths instead if it means she can get home? That is where the OT is really important. 
Because there are people either with or without their faculties who manage to carry on living at home even after a stroke and without being able to walk. But at the moment it's "it depends" because you just don't have enough information to go on. 

In answer to your first question (sorry, this is a bit back to front) if the lady has capacity then in theory she chooses where she goes for any short term assessment bed from the available options. In practice though, places are very thin on the ground so it may be where ever there is an available bed. They try to look at three options to give some sort of choice but that is not always possible.  She can decline to go if it's one that is too far from family (for example) but she would need to be strong minded to stick to her guns while they or you find a better option and if she refused to go in the longer term and they were looking to evict her through the courts she is likely to have to pay costs. That would be after many weeks/months, and it would not come to that but if she feels that any bed chosen is too isolated she should appeal the decision while still in hospital.