What support can we expect after my mum's stroke?

[MumOf4totstoteens]

My mum has recently had a stroke. She can’t walk, talk or use her right arm. She’s still in hospital. She’s in an acute stroke ward. Can anyone tell me anything about what to expect next? I know it all depends on the individual how they recover, but what support will we get for her? Obviously I want to help as much as I can, but I have work and my own children. I feel guilty writing this, but I was struggling before she had the stroke and that was with her helping me with childcare 2 nights a week and washing (we pay her) so I’m worried how I’m going to cope without her help, plus trying to be there and support her recovery. I’m self employed so I don’t get paid when I’m off. I’m basically going to loose a full months pay this month and my Nana is poorly too and I help her with getting to appointments and taking her out etc. I’m an only child so no siblings to help. any advice is much appreciated. Thanks

You may have your steel yourself and refuse to take her home without an adequate care package in place, including physiotherapy. It’s very hard when you are willing to care for your loved ones, and they want to get back to their own home asap, but it can be the best thing you can possibly do for her. Push hard for convalescence as she will get regular physio and that’s very important in the early stages after a stroke to rebuild skills.

In some areas it is called a reablement package and may delvered by nhs or Adult Social Care. An OT shoukd do a home assessment before discharge to provide any mobility aids and equipment, but she needs some independence and self care ability to be at home with carer visits otherwise she needs a rehab unit to progress physio etc. Don't allow her to overcommit family and friends to supporting her if she goes home and you may need to be quite forceful in advocating for support.

"I’m worried how I’m going to cope without her help"

Wow. You say "we pay her" so you have a partner presumably?

Maybe you could get her to pay you to return the favour and you help her.

It's delightful to see the other two posters basically saying to dump her. Lovely.

Not at all, but elderly patients have a habit of exaggerating both their capabilities and the level of support family can offer, in their natural desire to get home. It can often result in a readmission. There are times when you need to accept what support is on offer for everyone’s benefit. Reablement/care package is six weeks at most after which self funding is required unless on a low income.

DM will be assessed by OT, physio and possibly SALT. They’ll
do rehab work with her in hospital once they identify what she needs. Once she’s ready for home, if she needs adaptations they should do a home visit to assess those and then put them in place (things like extra handles on door frames, in the bathroom etc.

when she’s ready for home she might need a care package - reablement support as pp mentioned. Also local stroke team - physio, OT etc if she needs it for up to 12 weeks.

be prepared for phone calls and queries that you’re not expecting - always take the call - you never know when/if they’ll call back.

build relationships with all the different people so you can check things with them etc and they’ll help you if they can

when she is discharged be prepared for people just turning up completely unannounced and needing to spend hours talking to you/dm and working things out

also make sure you get discharge meds & be aware that care staff can only give meds in a dosset box so that is crucial otherwise you will spend hours chasing round

if the local pharmacy are not helpful find another one - they will deliver weekly if there is ongoing medications

if you’re not happy with the care/you are not getting helpful updates ask to speak to the ward sister. We were told dm was being prepared for discharge by a jr dr after a few days as an inpatient - utter load of bollocks - asked to speak to the sister/for her to call me - dm was in for 6 wks in the end

the stroke association were a bit helpful but not that much tbh but they did have a nice lady on the helpline when things were tricky also after 6 months you can apply for attendance allowance for her

finally I wish your dm a good recovery but you need to be realistic - my DM’s stroke has been life changing for her but also for me - despite her living at home independently - I run 2 homes it is hard x

when my DM had a stroke it was life changing. Don't underestimate the effects on her, it won't just be physical. Mine was discharged with very little aftercare in place and the OT decided that as she could put a potato in the microwave she was capable of independent living without outside assistance even though she only had use of one arm and couldn't even cut the potato. She never regained speech either and was given 3 appointments for speech therapy and then told to practice by herself.
It was mentally so hard for her and I never really appreciated how low she was and how difficult her life was. It's a regret I will always have. She survived over a decade but it was a miserable life and very lonely.

I sincerely hope your mum gets better care than mine did.

Sometimes in the teeth of blinding reality, they don’t accept that they need help and don’t accept that they can’t go back to how they were before. You have to be realistic about what you can do.

My MIL had a stroke and lost all movement in her left side. Four years on, after lots of physio, she has regained some movement but not as much as she initially hoped. Her left hand can't do anything really, and she can only walk very short distances with a walker. She can't walk at all without a walker. She's mainly in a wheelchair. She and FIL moved into retirement accommodation 6 months after the stroke and that has been an absolute godsend as it's designed for someone like this (no steps etc), especially since FIL died, I don't know how she'd have managed in their old house. In my MIL's case her speech wasn't affected.

Wishing you all the best OP, it's a tough time.

My friend’s dad had a bad stroke a few years ago, and after discharge from hospital spent two months in a stroke rehabilitation unit learning to walk, talk and use his affected arm. He managed to relearn all three to a degree but still had a pronounced gait and speech issues. Perhaps you could ask if she would be eligible for a rehab unit.

I think he was late 60s at the time so potentially still had a long life ahead of him which might have been why he got such intensive rehab. In the end he died in his sleep about a year later which I think was a second stroke.

My mum’s stroke left her unable to walk, talk, and without the use of her right arm. 15 years on she can hobble, talk with very limited vocabulary, and she’s never regained use of her arm.

As per PP she had very little after care, and as she made some good improvements while in the hospital (ie went from no speech to some speech in a couple of weeks) they discharged her. She was given a couple more weeks of physio and speech therapy, but neither of these were long enough to make any real change so she didn’t really improve much more.

If I went through it again (god forbid) I would push back much harder and not just accept what was being offered to us- we took the hospital’s lead but I understand now how crucial it is to have that support early on. Your brain is large and is capable of rebuilding a lot of the connections that get lost via the stroke, but you have to act fast and really focus early on- the longer you leave it the more impossible it becomes.