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

By 'throwing everything at it' I meant to take the long view and consider what's sustainable for you long term and what you can physically and practically manage.

I made the mistake of focussing entirely on getting the person home, had absolutely no idea what caring for a bed-bound doubly incontinent adult who wasn't aware of much and needed hoisting involved. And naively thought 4x care visits a day (2 carers each time) would cover everything. I had no idea someone would need to be with him all the time, that that meant even getting shopping and meal prep done (and turning everything into puree) would become a major logistical operation. The same with washing, feeding, moving. Them needing to go the toilet never coincided with a carer visit. It was impossible to do anything else, barely time to eat a meal or make sure I'd got clean clothes myself, let alone do something like exercise or work!

It's the sort of stuff that's doable for a weekend. Manageable for a week or two. Because you've thrown everything at it.

And 3-4 weeks in you're dropping with exhaustion, totally overwhelmed and it's far far harder to get any more support because the person is at home.

Your mum sounds like she is doing really well, all things considering if she can use a Sara stedy with one person. It's also lovely that you want her home. Yes be clear about what you can and cannot help with, occupational therapy may be able to recommend some major adaptions but this takes time (or private funding). People can make gains years after a stroke but they tend to be slow and it's a bumpy road. Take any care you can get, you can always reduce it if needed.

You might want to involve the discharge team and hospital social workers and discuss a nursing home as it sounds as though it would be very difficult to meet her needs at home.

Your mum would need someone with her 24 hours a day with those care needs. If she isn't fully mobile and doubly incontinent then she will be at high risk for bed sores and skin breakdown and will need turning during the night and changing promptly if she soils herself.
I wouldn't be in a rush to discharge her unless you have a good care package in place or you will be on your knees with exhaustion within a few weeks.

My SIL is an OT and she has said that based on my mum's complex condition, we should go for an assessment. So we'll be doing that.

The whole process is very scary and stressful so it's hard to think clearly. My step-dad will have to sell their flat, leaving him with nowhere to live - I'm not sure what the process is for housing older people made homeless to pay for care homes, but I imagine it's going to be awful.

Not sure the sale of the flat can be forced when there’s another adult living in it?

You have no idea how much I needed to read tour supportive words this morning. I'm immersed in the 'how bad can we make this sound' from a benefits and care package perspective that it feels like the end of the world right now. So thank you 😊

Why would your step-dad have to sell the flat? The value of housing can't be taken into consideration for paying for care if the person's partner is living there.

www.ageuk.org.uk/information-advice/care/paying-for-care/paying-for-a-care-home/do-i-have-to-sell-my-home-to-pay-for-care/

In a very similar medical situation (10 yrs ago) we applied for CHC for DM and got it. It certainly helped with nursing home fees.

Partner over 65. So if he’s over 65 and has some stake in the flat he should be OK

Sounds like there are some strong arguments for CHC eg strong skin care needs, mood after stroke, risk of TIA etc

Learn the domains of CHC as you might need to know this going forwards. CHC at home is not that good u less in terminal decline and a care home might be better. I would refuse to move her until a full CHC assessment made.

Ask the ward to carry out a chc assessment, you can also find it online to read to give yourself an idea of what it involves. He shouldn't need to sell the flat, how old is he, are they married, who owns the flat. You can also ask about reablement which is up to 6 weeks funded care if she does need to contribute. There is also funded nursing care and attendance allowance available for self funding residents if she would benefit from time in a carehome. If everyone agrees she can go home then the ot can make arrangements for any equipment which they order and provide and the discharge worker and nurse will co ordinate everything else. It's important that she doesn't go home until everything is in place, that she and sd are happy and she is safe. Does anyone have power of attorney for her.