Just need to share my thoughts

My husband had a left side ischaemic stroke on 1/12/21. He has no mobility issues at all but his speech, writing and cognitive functions were affected. He can read as long as it’s short articles (he was an avid book reader) His cognitive functions are improving really well, but his speech and writing improvements are slow. It’s so frustrating cos he’s normally such a chatter box and loves to tell a good tale.
I’m doing my best to stay positive that things will improve, as were told both in hospital and by community team, but in my darkest moments I sometimes find myself questioning would it be easier to cope and could I be more help to him if it was his mobility that was affected and not his communication. Has anyone else in my situation ever felt this way ?

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Hi @lizstorey94, both physical and cognitive issues are just as frustrating for the SS, and his/her loved ones in different ways.

Regardless of what deficits follow a stroke, the person has suffered a brain injury that takes time to recover, some (so I’ve been told) recover completely but others will have some ongoing issues to deal with and try to overcome/workaround every day.

It’s still very early following the stroke, your husband’s brain is still trying to make new pathways, so there is definitely room and time for improvement to be made.

I had a stroke in Sep 2021 and concentration to read and process is still difficult for me, but it has improved. I need to rest my brain more often (I sit with my eyes closed in a quiet room and concentrate on my breathing, trying to stop my thoughts wandering, to allow the brain to rest and recover). My handwriting is still atrocious, I have to write bigger than usual, if I try to write small say on one line on lined paper, my hand freezes. Still I practice every day and it’s getting better, though as I say very messy, but I do see improvement.

None of the emotions you feel are wrong, you need time to process what has happened, your relationship will have changed, your husband may be different, this wasn’t part of your plan for your life together.

Stay strong, stay positive but don’t forget to take time to care for yourself too.

Best wishes to you both

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Thank you for sharing your experience and for your kind words

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Hi @lizstorey94 , sorry to hear about your husband’s stroke.

I can only echo much of what @Mahoney has said, especially that it is still really early days. The initial 6 months or so are the time that most dramatic recovery happens before it slows down and becomes more subtle.

I had my stroke at the begining of June last year and I’m still making small improvements. I lost the use of my left arm and leg but within a few weeks the physios had me up and walking (with assistance). I also got movement back in my arm and hand after lots of physio and effort.

I am left handed but can just about manage to write a bit now. My main problem with writing was holding the pen/pencil due to having virtually no feeling in my hand since the stroke. I found something called “the writing fish” (a large grip to put around a pen) that really helped me hold the pen.

I am also a keen reader and found it difficult to hold and turn pages with a physical book but my wife got me a kindle which has been fantastic for me (& means I can make the text bigger).

I know from my wife’s experience that stroke also takes a heavy toll on family of survivors but I think you will find this forum very supportive.

I wish you and your husband all the best.
Mark.

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Hello @lizstorey94 , I had a similar stroke to your husband on 21/5/20. I too was a big reader and I’m heading that way again, it took a while but I put that down to my brain having more to cope with than reading whether for pleasure or education. My handwriting has always been appalling and even after 20 months I can’t manage joined up writing but in this keyboard age it isn’t a problem most of the time.
As for your query whether it would be easier if he had mobility issues, you will never know. I am 6 feet 3 and 18 stones, my wife is considerably smaller so she wouldn’t have coped with severe mobility issues. It is what it is , without my wife’s unconditional love and support I wouldn’t have got this far.
I’ve only been a forum member for a few weeks but I wish I had signed up earlier.

Best wishes to you both.
Clem.

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Hi there,
I echo what the others have said. It is very early days in stroke recovery terms. I also had an ischaemic stroke 7 years ago, but the damage was mostly physical. I did (and do still, slightly) suffer with concentration problems, especially when reading. Books take too long and because it takes me so long to physically do anything, I don’t really have the time to sit and read. I found reading newspapers (online, via my local library) improved my concentration levels and I also switched to audiobooks (also from the library) which I can listen to whilst doing other tasks.
Improvements will come, but the best thing you can offer is support and patience.

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Hi liz so sorry to hear about your husbands stroke .I had a stroke in April 2016 I was in hospital for a month spent nine months recovering at home so I know recovery is slow I am back at work repairing lawnmowers and driving again. As for reading I bought a amazon fire tablet to download books and listen to them a good way of taking in a book

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Thank you Alan, your situation is as you say similar to ours. Your partner, like me will be struggling to come to terms with what has happened and be very upset whenever you are struggling with communication. Ive shed buckets of tears of both frustration at our situation and heartbreak for the man I love struggling so much - I just want to fix him ! I am still at the stage of asking ‘why us ?’ but know I have to get past that and put my energies into helping him recover as best he can.
Take care
Liz

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Hi
My husband had a stroke outcome very similar to your husband. After 7 years I have become his translator, I interpret letters and articles so that he can understand them, And deal with all correspondence, making arrangements, appointments etc. I have grieved for the person he was, I am not saying life is easy but I have learned to live with the person he has become. He has just been diagnosed with heart failure and I am coping with chemotherapy for a rare blood cancer. One never know what life will test us with. He has also had to learn to live with the person I have become. We have known each other since we were teenagers and been married for 57 years. We are blessed with two very caring children and two grandchildren. At our ages each day is a blessing. We are together and somehow will continue to make the most of life. I found playing petanque helped my husband with numbers and his speech. Everyone was most helpful and understanding. It is gentle exercise that we can both do. He would have hated to be physically impaired. Best wishes to you both. Marylin

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Hi Liz,

My partner, Richard had a stroke just over a year ago. At the time I was told that it was very serious and he was unlikely to survive.

Nevertheless after 4 months in hospital and rehab he came home last April.

Rich is now a wheelchair user but as sharp as a pin. His walking is improving but he still has significant left side weakness and no use of his left arm.

One of the things I think I’ve learnt over the last year is that stroke affects everyone differently - not just the stroke survivors but the rest of us too.

I would bet, the feelings you describe are just one of the many different possible emotional responses to the situation, and that you do - and would - care for and support your husband brilliantly whatever was thrown at you.

Stay strong.

Gary F
X

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My husband had a thrombotic stroke in November age 60. He walked to the ambulance with only loss of speech but the following morning he lost the use of his right side. After a month he had only a few words and couldn’t stand. In the last month he has learned to stand up easily and walk a few paces with a stick and instructions. He is still improving in a rehab unit. So I have seen both problems and they are different challenges. I dreaded loss of independence and needing carers for him so walking feels massively important. His speech is returning a bit but the frustration for him not being able to express his needs and thoughts is really hard. Particularly when visiting is limited by covid.
I think the most important thing is knowing it will keep getting better for quite a while and to try to take hope from each sign of progress

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Hi Marilyn,

Thanks for this inspirational share. It’s great that you have manged to keep going and rising to meet the challenges you have been present.

Wishing you all the best and taking inspiration from this post.

ManjiB

Great posititivity! I think you are right and it’s great you are seeing improvements. Long may it continue.
All the best to you and you husband.

ManjiB

Great to see this post. From being told it was very serious and unlikely to survive to being discharged and back home must have been quite a journey. It must have taken great courage and strength to keep going and to get where you are today.

You say that stroke affects everyone differently which is something I totally agree with, yet despite this, how is it, or at least that is how it seems to me that the professionals don’t see it as individualistic. The “unlikely to survive” is an example of generalisation - maybe I am being a bit harsh since I don’t know how this was communicated to you.

We had a similar situation and in our case, the aftercare was very poor (because the “assumption” had been made that the survivor was unlikely to survive or recover well enough to lead any sort of meaningful post-stroke life). We have spent nearly 3 years post-stroke, mostly trying to help the stroke survivor to keep going and improving. We are having to do this thru’ DIY physiotherapy etc. since the professional care has been very sparse and given grudgingly

Post-stroke care seems to be like a post-code lottery. The London Borough where we live has no post-stroke rehab whereas a neighbouring London borough has great post-stroke rehab, but for some reason no one seems to think it is worth referring us to the neighbouring borough to get the rehab.

Why would that be?

Again, I take positive vibes from your post and wish you and your partner all the best on your onward journey.

ManjiB

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Hello @ManjiB, it is indeed a postcode lottery. The great issue from my point of view, is that although stroke is individualistic, there is no standardised post-stroke care. Many stroke survivors are not even informed of what type of stroke they’ve had. The Stroke Association are trying to rectify this with a discharge document, but it still means many survivors will be left without appropriate after stroke care. The “will not improve” label irks me, as I don’t think that kind of verdict can be made in the early months of stroke, or indeed after time. And it doesn’t factor in the degree of improvement. Each stroke case costs the NHS a lot of time and money, and there’s an imbalance between prevention funding and aftercare funding because for so many, stroke affects healthy active people. Without appropriate aftercare, each survivor needs to lean on the healthcare system for many subsequent years. There’s a bitter irony in taking away the chance of a better recovery from people who find themselves with the added burden of not having the cognitive, physical or financial means to weather managing their predicament with efficacy.

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Hello @Rups - thanks for your comments.

I find it strange with all the advances in medicine and medical technolgies, Strokes appear to be little understood.

For us, even though we got to the hospital in less than 30 min, the clot buster that was administered did not work and so a lot more damage took place. It was one attempt and that was it. So if the clot buster does not work, it’s almost it. It’s almost an “all or nothing”.

At the time we were in hospital, it was also noticable that the demand for stroke beds was high and so they were always trying to discharge patients - if you were deemed to be medically fit, they wanted your bed. I think that also cost us because they care and support in hospital cannot be replicated outside even though we were told the care in community will be exactly the same as the care in the hospital.

I guess we are lucky to have made it this far which we put down to the will and determination of the stroke sufferer.

Thanks again

I agree, almost as if it’s a conveyor belt with a rush to get ‘em out asap.

I don’t know if it’s to do with covid, (staff and space shortages etc) or if that’s the norm for my neck of the woods with regards to stroke aftercare, but I was discharged with no advice or assistance whatsoever, luckily I’ve made progress, so I’m thankful for that, but it’s been trial and error and a lot of ‘fingers crossed’ that I’m doing the right thing for my recovery.

Hopefully your mum is making great progress too and that determination and strength of character she has will keep her moving forward.

Best wishes

Hi @Mahoney,

Well done for making it on your own - it’s terrible that you were discharged with no advice or assistance.

Our case started pre-Covid, but due to the severity of Mum’s condition and the poor knowledge/desire to care for Stroke survivors, the hospital wasa looking to discharge Mum soon after they knew there was nothing more they could do for her which was by their definition “medically fit”.

As it was pre-Covid (I guess) we were able to stay in hospital with Mum and “refuse” early discharge, but it was tough. They kept saying there is nothing more they can do in the hospital and worse still, they actually said she may pick up infections (pre-Covid) if she stays in hospital too long. To be fair, she did indeed pick up infections whilst in hospital on two occasions and on both occasions it was just before she was due to be discharged.

To cut a long story short, we are still here and trying to survive everything including Covid.

We can only be thankful for what we have been given and for how far we’ve made it. As with everything, there has been good times and better times!

You keep yourself going and please keep sharing your “DIY” stroke survial secrets :smiley:

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Hi, I’ve just joined today and I understand. My husband had a stroke three years ago and is still having serious problems with his speech, reading and writing. It is really early days and it sounds as if he is making good progress. Speech therapy can be done virtually, appointments don’t have to be in person. Tactus Speech Therapy tools can be a big help but I think you need an apple, or android phone or tablet to download but there are free exercises. My husband has explained it to me as like watching a film in a foreign language without the subtitles, just as soon as you think you have understood what people are talking about everything’s moved on (at least that’s what I think he meant). It takes time and you need to give yourself time as well and don’t be too hard on yourself.

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Hi Mozza , stroke 2.5 years ago, I can not now watch TV, without subtitles & sound, conversation I really need to almost study & process slowly, only one person. Just really wanted to welcome you & hubby. My wife helps me so in reverse. :grin: . David.

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