Worried! Mum to be discharged home after stroke

[EMGEMG]

My mum is 77 and suffered a massive stroke in February. She's due to be discharged home after her referral to residential rehab was rejected 😔

She's unable to stand alone, is doubly incontinent, is fed via a stomach tube, and is now a wheelchair user. Her speech is slowly coming back and sensation is returning to her paralysed side.

There are glimmers of light at the end of a nightmare 4 months. She's a fighter and naturally we hope for ongoing slow improvements with ongoing physio.

Luckily I live nearby. Mum lives with my step dad.

Has anyone done through anything similar in terms of discharge? What advice would you give? Do's and don'ts?

please be kind

I would arrange a meeting with the hospital occupational therapist. From what you have said I would have thought that they would say that your mum needs a care package in place to be able to be discharged home safely. If the OT or physio say this then the hospital can't discharge her until the right care is in place.

Unless you don't work and will be able to spend a lot of time at your mum's house, make it absolutely clear that you will not be able to care for your mum. Don't commit to you caring for her if you can't sustain this for months on end. Arranging care once you have already left the hospital will be more difficult.

How fit and capable is your step dad?

Looking after someone who has mobility issues and is doubly incontinent is extremely physically taxing and risks injury to both your mum and to your step dad due to the awkwardness of cleaning and changing someone who needs help to do so.

My father was discharged home in a similar state after six months in hospital (sepsis leading to endocarditis leading to stroke and other multiple complications). He was also peg fed, incontinent and had to be hoisted in and out of a wheelchair.

With intense physio, huge stubbornness and determination on the part of my father, and a massive amount of support from my mother, plus a rota of carers several times a day, within 12-18 months he was able to walk again with sticks, using a wheelchair for longer distances; he could get in and out of bed by himself, eat solid food and eventually even do household tasks and go on holiday. He lived for another nearly 20 years. However, he was 65 at the start, and I have to say the medical team were astonished that he recovered to that extent. I would presume the older a person is, the harder it is to recover.

I am not sure what advice I can give, except that the more your mother engages with physio and sets herself goals for recovery, the greater chance she will have of making progress. Is there a programme of home physio planned for her? And what care package has been arranged? Can you afford to pay for extra private physiotherapy if there is not enough provided for her?

Do they own their home? If not, ideally a move to an adapted bungalow would be a good move, things like a toilet that washes & dries would give your mum some dignity & independence, does she have a wet room setup so she can be showered safely? If she is using a wheelchair inside the doors need to be wide enough to cope with the width of the wheelchair, there should be ramped access at least in one of the doors to the outside. Does she need to be hoisted in & out of bed to her wheelchair & if she needs changing due to her incontinence? Would a hospital bed be better for her rather than an ordinary one?

An OT should go to assess where she lives, then they should take her home to assess if she can get in the house & around in her wheelchair, including is there enough room for the turning circle of her wheelchair. Then afterwards, they would make the decision if the property is safe for her or if they need to move they would support an application for a social housing property or what alterations are needed in her present home.

As the others have said, you need to know the details of the care package that they are putting together. An OT will need to visit their home and make an assessment of what adaptations will be needed. This MUST happen before she is discharged. And you have to speak up of you don’t think it’s going to be sufficient.

and you and your step father need to be crystal clear about what caring and support you are willing and able to provide. This has to be sustainable.

my mil was also doubly incontinent, unable to stand, and also had severe osteoporosis, Parkinson’s and dementia so the chances of regaining continence and mobility were virtually none. Yet there was still talk of her returning home from hospital, to be cared for by FIL and my SIL! It was only when we forced the social worker to say out loud that yes, if MIL soiled herself between carer visits or overnight, she would indeed have to sit in it until carers came, that FIL really understood the reality of caring for her at home. She went into a nursing home where she is well looked after by trained carers.

Be very very careful about how much you agree to do to support this. It's very very tough caring for someone in this situation. Don't be tempted to 'throw everything at it' to get her home. Think long term about what you can feasibly manage and what other commitments you have in your life.

And be prepared to be very clear with the SW etc what you can do. And repeat. And repeat. And put in writing.

I refused point blank to let them discharge DM home under similar circumstances as her DP was older, frail and unable to manage her physical care. She was finally discharged to a superb nursing home where her PEG and her ongoing stroke issues managed, and her physio and SALT continued (with our help). We learnt the techniques and visited twice a week to make sure she did her exercises.

Under those circumstances she will be entitled to nhs continuing care. Does she have capacity to make her own decisions, is she telling them she wants to go home? They will fully fund home care or residential depending upon need as her primary need for care is medical. If you have them telling you about social services assessment state clearly this is medical continuing care- the difference is that continuing care is not means testing so no fees!

Continuing care is not just about having medical needs,it’s about having unpredictable needs on a daily basis. Don’t assume she will necessarily get it.

Thanks @INeedNewShoes . We've for our first meeting with the social worker and OT this week to kick things off. So we'll get a more detailed idea of what the plan is. Thanks for the advice for not committing to mum's care.

Thanks. I've been told that she won't be eligible despite her needs. However, I'm not one to give up easily so I'm due to talk to Beacon for advice and I'll be in touch with the local Disability Advice Centre.

Appreciate your response. What do you mean about "throwing everything at it"? Currently we're just waiting for to find out about her care package...

You need to be firm about what, if any, help you and stepdad can offer. Was her rehab rejected because they don't think she would benefit from it.
Does she have capacity
Does she want to go home
Is the home suitable, if its a house would she have to move downstairs
She needs a home assessment, a care needs assessment and a financial assessment
If the plan is to go home she needs equipment, hospital bed and pressure mattress, hoist, Commode, wheelchair, adapted cutlery, continence nurses, district nurses if the carers are not trained in feeding tubes for food, drinks and medication.

The maximum care package is usually 4 x 30 or 45 mins a day, sometimes with an overnight visit to relieve pressure areas. Benefits can be attendance and carers allowance.

Why do think she will be entitled to chc? It's easier to nurse a severely disabled person in bed, family will be trained to do the peg feeds. Thats all deemed social care. Likewise any communication or other therapies.

Maybe she doesn't want to be confined to bed and the family don't want to deal with feeding tube

Maybe she doesn’t….but no way will she be eligible for CHC

make sure you attend the discharge planning meeting OP…l.if you have concerns about anything at all, tell them you want it recorded on the notes that you think it’s an unsafe discharge….. why is she not entitled to the free nhs 6 weeks in a rehab unit?

you have to be honest with yourself about what you can manage. Caring for someone who has even four lots of care calls a day is emotionally and physically draining. Will you father be able to look after her overnight. Could you get her to medical appointments. Can you drop everything at a minutes notice to go round to deal with emergencies.

Thanks.
The rehab unit rejected the referral as they said she wouldn't tolerate the intensive physio and SALT taking place each day. She does experience fatigue every few weeks, but I have a feeling it's probably because she's still in hospital and has a catheter. I'd like her to receive physio at home (we'd need to pay for that as it won't be funded when the initial care package ends) and see if we can get her into a funded rehab facility via a referral.

My advice would be to see if you could speak with someone from one of the Stroke charities. There is some information here:

www.stroke.org.uk/stroke/support/caring-for-a-stroke-survivor

Age uk may also be able to talk about what support and any benefits can be claimed

This doesn’t sound like they don’t want her, rather that they cannot meet her needs as they re so severe. That doesn’t mean they will send her home though.
You need to wait until the MDT meeting to see exactly what they are proposing. It may be that she will end up in a nursing home rather than rehab.

Sometimes rehab is rejected if they feel the person doesn't have rehab potential and won't benefit from it, there should be a stroke team who can advise you about the realistic future so she gets the care she needs.

Fatigue is a very real part of life after stroke. I work in a therapy team for stroke survivors and I don't know anyone we work with who doesn't deal with significant fatigue. That can mean in the early days that they don't tolerate long therapy sessions, and when just getting up, washed and fed are major operations it can be a huge barrier to lots of therapy. I agree that a realistic view of the future is important.

We have discussed this already with the MDT - the family wants her to go home. She wants to go home too.

She doesn't want to be in bed all the time - she can use a Sara Stedy with one person helping to transfer on to a wheel chair.