long-term post-stroke interest

Hello,

It's over 8 years since my wife had a severe stroke. We are about 70. Physio and SLT stopped long ago, partly because B didn't want to keep trying (foot exercises, trying to copy shapes with her left hand). She is paralysed left side, and bed- and chair-fast. She has very limited speech.

I have a feeling that I'm not trying hard enough to get her interested. Maybe it's just that she does NOT show interest, maybe that's misleading. I just don't know.
She plays 4 in a row, and noughts and crosses, but bores easily. I don't think she can read (because of not retaining what is read long enough to make a sentence) and she doesn't understand audio books etc. She watches a lot of TV, but dozes off easily. We go out for a wheelchair walk every day. What should I try?

Thanks

Hugh

Hi Hugh,
It sounds like you're doing plenty to me!
I'm wondering if interest can be piqued using your wheelchair walk - maybe this isn't logistically possible - but what about tourist information leaflets? Maybe if your wife had a pile of leaflets with lots of pictures but not may words she'd like to look through them and choose somewhere to go. We find that lots of tourist places let carers in for free, so it perhaps matters less if you don't spend long there. We had a particularly lovely day out at a zoo a couple of years ago, we'd not considered going since the kids were small but really enjoyed watching the animals and we were having little 'conversations' about it for ages afterwards.
We splash out on National Trust membership every year as they have lovely gardens and tea shops and parts of many houses are accessible.
These aren't things that you could do every week but maybe one day trip a month with some planning time in between??

Or, what about car boot sales and charity shops? Just pottering round to see if a game/jigsaw/activity would interest your wife, maybe it wouldn't cost much and so if it's not used much wouldn't matter and might be easily replaced.

Has your wife tried crafting, making art or just doodling? I'm wondering if making something herself would keep her more interested than watching or listening to something she's not part of. You might need to be creative with keeping paper still and pots upright but after 8 years I bet you're the king of finding ways around!

We recently went to a 'friendship club' to represent the stroke association at their Sip for Stroke, it was the most wonderful atmosphere, everyone was having a little gossip or just watching the others and we all did arm chair aerobics, which was good fun. I wonder if your wife (or you!) would enjoy a club like that.

We've not been doing life after stroke half as long as you, but one thing that I had to learn was to be open minded to new ideas, to question what other people do with their time and consider trying things - our life before stroke didn't involve sitting still ever so the idea of going to the cinema took some getting used to! It would be lovely if our stroke community could post what we all do, the smallest things can bring such pleasure! For example, on Tuesday we're going to Cambridge Beer Festival to try a few halves and watch the world go by, simple but definitely a highlight of May!

I try to get something on the calendar each week to look forward to - I wonder if your wife could be inspired by filling a calendar - or completing a diary with photos and mementos.

What do you think of those thoughts? Might any show promise?
Cheers
Paula

Thanks, Paula,

Some of these things we do or have done. We are NT members, too. We are hoping to go to a steam rally next weekend, but it depends how she feels that morning.... Jigsaws are something I should try again, we haven't done recently. Although B has use of her left hand, she has given up on drawing or painting, but maybe another try is indicated

We have a week away coming up, in a hotel with full facilities and a linked care team. A week at the seaside might be just the thing.

Anyway, thanks for all these ideas.

Hugh

Hi Hugh,
A change of scenery sounds great, I hope the weather's nice and lots of people watching can be done!
I have heard the advice that if an idea doesn't work, to shelve it and try it again in the future - I'm not sure how many times this can be done before I'd loose all patience but you sound like a very patient man!
Can you influence at all how your wife might feel the morning of the steam rally? Are there triggers that might make her have a good or bad day - I'm wondering about a lovely relaxing day the previous day with a healthy dinner and an early night, might that optimise your chances of getting to the rally?
I hope you get to the rally and you have a lovely holiday - chips on the sea-front, perfect!
xxx

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