Worried about Mum

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Hi all,

Looking for some advice on my mums stroke recovery. She has been out of hospital for 4 months and is having private physio every 2 weeks plus practicising physio at home, but progress has slowed / plateaued a bit. She is still receiving full time care from my sister and I, and whilst she’s doing a bit of walking on the walker, its nowhere near close to moving around independently. She has a wheelchair but the flat is not great for manoeuvring a wheelchair around.

She is becoming more frustrated and sometimes seems completely hopeless about the future - to be honest I don’t blame her as she is waiting on a lot of things and it feels like we are completely at the mercy of the council / NHS / HMRC etc. Waiting months for the council to make adjustments to her flat, still waiting after months for PIP to be awarded and also almost 4 months on we haven’t heard a word from the hospital physio/OT team and her next ‘check-up’ isn’t until December.

I guess I’m looking for some advice about what we can do to make this easier for her / speed up this process - I really hate seeing her lose motivation and hope but I totally get it as it’s almost impossible when you’re waiting on the relevant organisations to pull their finger out and actually do something.

It really feels like we’ve been left out in the wilderness with no help.

Any advice welcome on how to best cope and make this process easier for her, plus also how we are to cope as full time carers.

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@maryjo239 it isn’t unusual for progress to slow after the initial 6 months & that does make it difficult to remain focussed on rehab etc. I used to diarise what i’d been doing & even though you think no progress has been made when you look back at your diary you can see it has.

Have you had a care assessment done for your mum? Might be worth contacting adult social services too. You shouldn’t have to but try making a nuisance of yourself with the relevant places. Perhaps the GP could hasten things gor you. Some surgeries do carer sessions too. Mine does but not sure how wide spread they are.

I’d also contact the stroke association helpline to see if they can offer advice. Also try Headway and Brain & Spine Foundation.

Sending my best wishes.

Ann

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Get yourself a copy of a book called Had a stroke? What now? by Tom Balchin. It’ll help understand what’s happened and what to expect.

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You have been given some advice by @Mrs5K. Remember ‘he who shouts loudest gets heard’ . . . in other words phone the council/NHS/HMRC departments and keep phoning them for progress. Don’t wait for them to contact you. No need to be angry or bolshie with them, just be nice and friendly and courteous and lay it on a bit thick about mother’s plight. But don’t sit on your hands waiting for them to contact you. And don’t let up on the phone calls, give it no longer than 5 working days between calls if nothing is forthcoming.

As to your mother’s progress, I’m afraid you are all just going to have to learn to be a little more patient! Recovery can take years not months and plateaus’ are the norm, and sometimes it’s two steps forward and one step back! They are a bit like the landings on a long flight of stairs, those landings are where your brain needs to take a breather while it processes all that’s it’s recovered or relearnt before it moves on up the next flight of stairs. Keeping a diary helps for some people, it’s good to be able to look a back to remind yourself of just how far you have come.
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There is a lot to be regained in the first 6mths and it’s exhausting. After that it’s more of the neuroplasticity that is the brain’s adaptions/retraining; and that journey can be long one. It’s going to require a lot of rehabilitation physio and practice to get back to walking reasonably normal again. It requires a healthy well balanced diet; a lot of rest, particularly in those first 6mths, and exercise. Even if it’s just chair exercise, standing at the sink to wash up a couple of cups, moving is exercise for the brain to make that connection once again to nerves, muscles and tendons.

Don’t wait on hand and foot for her, that’s the worst thing you could do for her. Allow her every opportunity to do for herself before you step in to help, give her the time and patients do the action. Have her attempting to do the every day chores of a bit of dusting, folding washing, pairing socks, putting shopping away, replacing loo roll, ironing a tea towel, getting the milk out of the fridge, etc. All these activities trigger the brain’s motor muscles.
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So, if your mum wanted to try to take a cup into the kitchen to wash up, she’d be triggering all the naturally learnt motor skills from years of experience, sparking the brain to attempt to carry them out. Recovery will fair far better than carrying out unfamiliar set tasks the therapists ask of her. Don’t get me wrong, they also have a part to play…along side of it but not exclusive of that old already learnt motor muscle skills set.

Most important of all, make her laugh! Make her see the funny side of any fails, and don’t give up. Never give up because, as the saying goes, ‘where there’s life there’s hope’ :wink:

Edit:
Sorry about the lengthy post, I think I got carried away again :blush:

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Hi
I suggest your heart is in the right place but your expectations havnt been set well about stroke timescales or what activity is the most beneficial & motivating

@EmeraldEyes already explaind the really key bits! :slight_smile:

You might also search for “40 things” and read that post. Use the :mag: magnifying glass icon

Also search :mag:"back cast" (including the double quotes) and read the 2nd half of that post or better yet the whole thread

:slight_smile:
Simon

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Thank you so much, this is so helpful! We’ve stepped back a little this weekend and she’s had some longer periods of time alone where she is doing things for herself (washing up, getting food etc) and it’s all gone well - although she says it’s exhausting, which isn’t surprising!

Haha that’s certainly no shortage of laughs in our household - think that’s the one thing we’ve got covered 100%! :smiley:

Thank you again - this was all so helpful xx

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Hi @SimonInEdinburgh ,

Completely agreed about timescales - most things I’ve learnt is through the internet and this forum! I think it doesn’t help that in hospital, a doctor told her verbatim “you’ll be walking normally again in 3 months” - eeeeeek! Which really stuck in her mind. Although she’s now come to terms with the more realistic timescale!

Thank you for your advice!

:slight_smile:

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