Karen- Not a happy bunny

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And why should she be? Her brain has taken a battering and I’ve no reason to expect her to be happy, only…

I hate seeing her so down.

Yesterday she did her exercises in a very lackadaisical manner, and the day before didn’t do any at all. I’m not blaming her because the heat (or the humidity) is rife down here, and she can’t settle and can’t sleep, and so she’s very restless, uncommunicative, and looks sad all the time.

I try not to press the matter, just remind her to use her right hand on the walking frame, demonstrate her exercises to her and count them for her, and try to be supportive, but I do feel rather helpless. When the community team assessed her, I envisaged rather more interaction with her, or at least some guidance re her aphasia, but all I got was ‘I’ll come back a week on Monday to see how you wash’ and that was that, and I think that’s getting her down, this feeling of ‘abandonment’, for want of a better word.

She’s had to give up her driving licence, and I know that’s dealt a huge blow to her self-confidence, even if it is only temporary, but when I try to talk to her, about that, about anything, her answers are succinct and then she clams up. I don’t know what to do.

I’ve got cards with conversation starters on so we can expand the topics we talk about and get her thinking, and I’ve got a stroke recovery activity book for her to work through, but she just doesn’t want to try very much or often, and in turn that discourages me because I feel useless. Her kids haven’t been in touch, her friends haven’t been in touch, and when I feel she could do with interactions other than with me to perk her up a bit, we have no options.

And I just hate seeing her unhappy.

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@2Weevils

While I was in hospital and after, when I got home, everything was done in little fits and starts.

It was very difficult to maintain interest, to keep doing something, once started.
The effort needed to keep going was just too great. Batteries went flat very quickly.

It wasn’t lack of interest. I really wanted to get going again.
Again, I just didn’t have what it took.

Over time strength builds. It’s shocking how weak you become.
Gradually stamina improves one is able to make more effort for longer.

It is said that after stroke, resting is as important, if not more important, than effort or exercise.

I believe our bodies give us signs.
When to start and when to stop.
When to rest and when to exert.

I think it is important to listen and obey these signals.

Recovery is a long process.
Everything has its time.

Dissatisfaction drives us on.
Comfortable happiness keeps us where we are.

Life is a swing between these extremes and will move both her and you along as it does.

Enjoy the happiness but realise that the dissatisfaction has its place and will help move you along.

:heart:

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Karen has to want it, you can’t recover for her. Is there a carer’s support group local to you where you could pick up tips? and get support. It may be tough love but if Karen is on her own she may be more motivated to do things for herself.

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As we can only go by our own experiences, I clammed up a lot when my partner engaged with me, but not because I wanted to, I had to. The brain fog and cognitive fatigue meant I couldn’t be as fluent as I might have liked. Just thinking about what someone said to me or asked me would exhaust my mind to such a point, I would utter monosyllabic responses, and at other times I was so distracted with what was going on in my head, I felt little desire to interact with the outside world.

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It could well be fatigue playing a part in how she is. I couldn’t manage more than a sentence or 2 initially without being wiped out for hours or even days. Add in the heat & that’s a recipe for exhaustion.

I know you want her to recover as quickly as possible but it has to be at a pace she can cope with. And that pace might vary day to day. Stroke may well have affected her mood too. It really is very early days for her so there will be lots of ups & downs.

Most of us didn’t get more than a session a week of physio etc after discharge. Some didn’teven get that. You have to work at it in-between too.

Stroke recovery is a marathon not a sprint and rest is as essential as rehab.

It will come together just be patient and give her time and space. In thr meantime when she isn’t interested or just plain exhausted take some time to look after yourself too.

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Hi, - I have written before about the much unexplored psychological aspects of stroke recovery/ aftermath.
You have used the term abandonment and that is so appropriate. Hospital get yr recovery going and after that - well you have yr pills and instructions so get on with it! If only things were that simple.
Now my stroke(s) were not severe I got off lightly but it was months before I felt anything like. My family were great friends very good but everyone has their own life and at that point u cant get out far or much so your social circle shrinks. You don’t get out cant take part. You have so many questions but few who can talk about it. My stroke association local coordinator was brilliant btw.
So it is by nature very isolating. It’s a lot to get yr head around and that at a time when your brain is in full recovery mode and working day and night at that.
I hope some of that is of interest. My main advice is keep writing here please. You not only help yourself but help so many others. We are a community. Personally I have met many remarkable people and none more so than I have here. Things do improve its just a matter of your own personal journey some take longer than others

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The only local group is miles away from me. One of the perils of living rurally I suppose. I do encourage her to do as much as she can on her own, but some days she just doesn’t want to and whilst I get it, I obviously get concerned that she’s missing out on opportunities to help herself.

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I agree with what’s been said.

But just remember this is all new to you and you also have to adapt to new challenges. And that in itself takes time and alot out of you.

You are doing a great job under a lot of stress. And in time you will see improvements and I guess you already are.

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I suggest you keep a diary. Hopefully in the future you will be able to look back and see how far the two of you have come. imagine how that would feel.

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Thank you. I think I’m one of those people who never feels like what they do is enough, and that’s quite frustrating in itself. And then there are the endless voids where nobody seems to take any action or do anything, or tell you to do anything, and you feel quite helpless and angry at the position you find yourself (and your wife) in.

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Plenty of good thoughts …
… some highlights for me as below.

But we can also learn from the experiences of others - cf re-inventing the wheel.

:pray:

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