Worried! Mum to be discharged home after stroke

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.

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.

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.

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.

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!

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.

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.

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.

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.

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?

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.