I’m on here way too much but I really don’t have any where else to turn.
My mum is back in hospital following a failed dsicharge from the stroke unit at Ipswich Hospital over the weekend. The phyios at the hospital are refusing to work with my mum whilst she’s here as the stroke ward have determined that she’s not going to improve due to fatigue. However, this assessment was made during a wave of fatigue and with no further rehab from the stroke ward even when she was more able to do it. They just gave up on her. It’s extraordinary that one ward can stop other physio teams from working with patients.
This is just one of many challenges we’ve had with the stroke ward’s attitude towards my mum. there have been multiple issues which we as a family take serious issue with.
Anyway, we expect the new discharge process to start soon and we’re pushing for discharge to rehab or respite to allow my mum the chance to prepare to go home eventually.
Has anyone successfully fought a decision made by a stroke ward which threatened the progress of a patient? If so, how did you do it?
As a family we have a long list of complaints we’ll be submitting, as the rehab and discharge process has been an utter shambles.
Well, taking Shilajit (you can find it on Amazon) really has some amazing benefits for fatigue. It was recommended by a Functional Neurologist. I have tried it, and it more than worked; start with a very small dose, and start with plenty of research, of course.
Good luck with your mum, and keep fighting for her,
ciao, Roland
Some of us are late starters but we do get going eventually.
I spent an uneventful couple of months in hospital chatting to nurses, visitors, doctors, cleaners, in fact anyone who came close enough for me to attract their attention.
I was a dead loss on the physiotherapy front. Everything refused to work and I was at a loss how to get anything started up. When I got home I was bed bound and pretty much totally helpless, apart from a well developed motor mouth.
I sank into a depression and just lay there.
Then one day four months after my stroke, I suddenly decided enough was enough. I stood up walked to my commode a couple of steps away and pulled on my dressing gown, turned walked back to my bed and sat down. I grinned at my wife.
I have fallen over multiple times ending with bruises on arms, legs, across back, on ribs, all signs of victory and success.
I can walk a little bit better now, two years after the stroke but I have quite a way to go yet.
Don’t get in my way I’m not giving up.
Your mum will get her moment, give her a chance, don’t push, let her know you care, she will get there.
There’s tortoises and hares. And there’s no harm in being a tortoise.
Apart from regular visits to this forum my wife, who is my carer and myself, had to work through all this between the two of us. There wasn’t a lot on offer, but occasionally there was some help for which we were grateful.
Don’t expect too much, be brave and you will began to make a path through all this mess.
Don’t feel bad about using this space. It doesn’t always provide answers but sometimes just writing about what you face can be a release.
You have a long way to go, so don’t be afraid to rest before getting going again.
Stroke isn’t something that you can sort out just like that.
There’s always someone around who will have time for you and an encouraging word to offer.
@EMG72 at this stage I think your best option may be to contact PALS & ask them for help. As @Bobbi has said often you have to find a way without the medical input…not ideal but at times there is little option.
Hopefully she will soon be discharged to somewhere where she’ll get all the help she needs but in the meantime look up some little exercises you could do with her yourselves. It won’t be too late if the physio takes a bit longer to happen. Bobbi is a testament to that.
Thanks, and yes, we’re doing bed and chair exercises and it seems her affected leg is starting to come back to life. We’ve been pumped full of gloomy stats by doctors in the stroke ward about how she’ll probably pass away in the next year due to her major stroke. So I’m incredibly stressed out by it all.
PALS in this hospital haven’t been that helpful sadly. They simply signpost. But I’m writing a complaint about the stroke ward at the moment.
Keep persevering with the exercises it sounds like they’re going well.
It must be extremely frustrating for you when you feel you’re not being listened to. I think a lack of resources in general is impacting the care everyone receives. Not great atvall but even worse when it is our loved ones that lose out.
It’s a shame PALS haven’t been as helpful as you’d like. Hopefully your complaint will get you some answers.
Well, fatigue is probably the most consistent symptom post stroke, so I don’t think any denial of physio because of fatigue makes any sense, nearly every stroke survivor has neurological fatigue, so physio goes ahead regardless. Fatigue is not something that gets rehabilitated, fatigue occurs while rehabilitating, it can be managed with brain blanking and meditation, but the brain gets tired because it is working.
So we need another pathway for her.