Thank you all so much for your advice, support and even just acknowledging our journey and sharing yours is a comfort to me. I didn’t realise
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Opps I pressed a button before I had finished . However As I was saying before I accidentally cut off . All your contributions are of a great comfort to me. I didn’t realise there was a support group for the partners of stroke victims so I will definitely look into the group. I’m coping quite well thank you for asking. My coping strategy tends to be not to think too far ahead . Also to take myself off to a quite place and re charge my batteries .
It’s been quite a journey in different ways especially like Stephen I too was very impatient and I have now had to find patience . Stephen was the driver and the gardener and the DIY man now i do these jobs under sufferance because he has now become the bossy boots giving his orders . I am smiling as I type this because I’ve now started to enjoy the jobs and having my say over what plant goes where and having a bit more input whereas before I was happy to let Stephen make most of he decisions so perhaps we are complimenting each other more than we realise. Also what keeps me going is the fact that all of you have it so much harder than me I may get a tired day but I imagine more than often you all get so many days where you struggle . You all have my greatest admiration and respect. Thank you again.
Love Annabella
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I’m glad you managed to clear the first hurdle. You should both be proud and hopeful.
There will be more, it is never over, but when you look back you will realise you are getting somewhere.
Keep us posted, let us know, both ups and downs, you’ll find encouragement, sympathy and advice here as they are needed .
Keep on keepin’ on
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Hi Annabella, I am pleased to hear that you and Stephen seem to be on the right path and are coming along nicely together. Sadly the road to recovery following a stroke is long and tough and when things get difficult we are all here to offer a shoulder to cry on or to listen whilst you have a rant or a moan. We’ve all done this at some point and it can be very therapeutic.
I would highly recommend joining a stroke support group, if there is one in your area. We joined a weekly group in our area through Different Strokes who are a UK charity providing a unique service for young stroke survivors and their families. We both found the meetings very helpful and informative and we met some lovely people who knew, first hand, what we were going through. Sadly our group closed when Covid hit and has never reopened.
I suffered a hemorrhagic stroke 6 years ago resulting in left sided paralysis and my husband is my carer. If there’s one piece of advice I would give, My husband has been amazing and I am writing this with his permission but he has said recently that he feels he may have held me back in my recovery by being too helpful and should have made me do more. I remember reading a post a long time ago when someone said that their partner wouldn’t help them unless they asked for help. I hate to hear him putting himself down because he has been by my side since my stroke in 2017 and has been amazing. I think the morale of the story is that you need a bit of “Tough Love”, which is something the OTs at the hospital used to say. Although I do think that’s difficult when you are caring for someone you love.
I wish you both well and look forward to hearing from you as Stephen’s recovery continues.
Best wishes Sue
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Thank you I will keep updates , as I forget how far we came before going back . However I can see small improvements . We don’t do the exercises as much as we should . It’s a combination of me sounding like I’m nagging and Stephen getting tired . Added to that neither of us are consistent and disciplined,unfortunately that’s a long standing trait with both of us. We start off with enthusiasm then we get side tracked and fall by the wayside. Annabella
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It is a natural process,regular rests are a part of that. It isn’t ‘skiving off’ it is repair and recuperation time, as important as the exercises.
Pushing too hard will bring him to stop, progress will happen in small steps, be gentle with one another, you’ve got the rest of your lives together.
Time for fun, entertainment, relaxation, will help that healing process.
Stroke is not boot camp but you both make the rules.
Keep on keepin’ on
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Hi there!
My mother also had a hemorrhagic stroke (low platelets).
You said something very interesting: that your husband believes that he may have held you back in your recovery by doing too much for you. Well, in the case of my mother, she demanded that my father did everything for her, even though after 7 months, she walked liked a normal person (better than most people her age who never had strokes). Her hand was a 8/10 at the end of one year, except for some weakness in the fingers a bit. She insisted that my dad dress her, etc, even though she would do it herself once in a while. We couldn’t argue with her. She could have done light cleaning, dishes, taken walks by herself, etc - she flat-out refused most of the time. Nothing we could have done. Her emotional mind only got worse over time. If my dad wasn’t around, my mother would get me to do things, but she was less demanding with me. I also think my mother would have done better if my dad had not been with her so much. But, again, it is what it is. The other thing, too - if my dad stayed away too long, my mother would go insane. She had to know where he was at all times. Just so highly dependent on him (she was like that to a lesser degree before the stroke). They say you take your previous mental state into a stroke. I believe that’s true with my mother.
Your husband simply did what he thought was best. You just don’t always know what to do when you’re caring for someone with stroke, etc. My Dad and I did the best we could do. We try not to feel guilty, or start the “shoulda, woulda, coulda” stuff. We made sacrifice after sacrifice, but, in the end, my mother knew how much we loved her and that we did everything to keep her out of a care home. She knew this. While our efforts in her physical recovery paid off, she never did appreciate her ability to walk so well again, because she was too mentally/emotionally ill. As far as her mind was concerned, there was nothing we could do - really. No medicines or supplements worked. We felt defeated and truly helpless. We resigned to accepting her as she was. She died in a very bad mental state. We grieved and cried for almost 2 years while she was alive, because we knew she was never going back to the old her.
It’s great that you have had such a supportive husband, and that you 've been able to recover over time. I sincerely wish you all the best as you continue in your journey post-stroke.
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Hi. What is the support group for partners called please and how do I find it?
Be nice to talk with others x
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There are many in person face to face support groups listed here
Some are for all stroke warriors- carers partners survivors but they’ll be able to tell you what they cover and they will know what’s in your area. There are specialist carer support and respite groups like where we are in the Lothians there’s one called VOCAL again you’re local stroke group will probably know of them
My wife runs a SA online Zoom cafe every other Thursday and you’ll find details here
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