One day at a time

Share your story Caring for someone
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Hi, I’ve just joined the forum today. But I’ve been communicating with the stroke association for the past few days and I’ve had so much support and information especially during the low moments.

My husband had a stroke about 3 weeks ago. We are both in our 40s. It happened during early hours before I went to work. He woke up and realised his grip on his right side was not strong. He woke me up to call 999 and the ambulance service were with us in minutes. They didn’t think it was a stroke but his BP was 220. He was feeling more numb on his right side and new he was having a stroke. I was so scared, I didn’t know what would happen. Things happened very fast as soon as he was in hospital and they said he had a clot. Over the days to follow he did get a lot of support with physio and he was able to get power on the right side. His motor skills, he’s working on. And he’s got a foot drop on one side, he’s wearing orthotics to help with walking. When he’s walking for longer his left side hip gets uncomfortable and then painful. What can he do for this as he is trying to walk daily.

He also gets tired very fast, some days worse than others. But I’ve read about this and it’s normal. I wish there was an answer how long it will he be like this.

We’ve had good and bad days since it happened. A rollercoaster ride to be honest. Initially for me it’s been the shock that how did this happen? I’ve felt so many different emotions but stroke association have been amazing.
My husband doesn’t talk about how he feels as he said his focus is to get better and get to work. Sometimes he just sits and doesn’t say much, I don’t know what he’s thinking. I know we are both
processing this in our own ways- as it’s zero warning and just happens. Life has changed but I’m taking each day, but at times I feel so frustrated as I don’t know what to do and how to manage my emotions. I don’t want us to grow apart going through this. I understand we will have our own ways and comforts to deal with each stage but I don’t want it to push us away from each other. I want to be there for him, he’s my whole world and he’s treated me as his queen for 22 years since we first met. What do I do to be there for him? I’ve suggested the forum for when he’s ready. I also know we have all ways respected each others time and space. But this is all new for both of us and neither of us know the answers.

I forgot to add that he’s mentioned a few times his fingers have felt tingly, it’s on and off. Earlier today he felt numbness on right side of his lip too. Any advice on this too please.

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Hi, sorry to hear of your husband’s stroke at such a young age. Welcome to this forum, we are a merry band of stroke survivors and carers of all different ages and who have suffered many different types of stroke. Hopefully there will be someone on here who can relate to your situation and offer some guidance and advice. I had a stroke 6 years ago, so can’t speak from a Carer’s prospective. Unfortunately most strokes strike out of the blue and are a terrible shock for everyone.

It’s early days for both of you and you will both need time and space to gather your thoughts. My husband is my carer and although we have our moments,
, on the whole I would say my stroke has made us stronger. We have been married for 42 years, my husband returned to work part-time 3 years ago and I can honestly say it’s been good for both of us, giving both of us some space and me some independence.
It sounds as though your husband is focused on his rehabilitation and that will be good for both of you. It’s great to celebrate your achievements together. Try to work together and support each through the tough times and I’m sure you will get through this.

Best wishes to both of you and I look forward to hearing from you when you post your story.

Regards Sue

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Hello and welcome @MrsA

I’ve just finished a post replying to @Josie2 on this link New to the forum and first discharge meeting with hospital team next week - #3 by SimonInEdinburgh

I think maybe you should watch my wife’s video on Instagram that’s linked in that post It might help you and there are words in the welcome post about strokes survivors may appear to be just sitting but internally there’s a lot of repair going on that saps the energy.

Which says an awful lot of what I would rewrite here so I suggest you click on the link and youll doubtless have much in common with @Josie2

I think it’s really hard to say all the things that need to be said. So I’ll content myself with just one. And that is for all the people who are here It’s a constant road of improvement even if you cannot see the path of the moment.

Best wishes on both your journeys
Simon

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PS
Your comment of only today his fingers felt tingly…

Having a stroke is like buying £100 car with no manual.
It rattles clatters and bangs constantly, frequently developed new ones or old ones disappear and there is no way of knowing whether those are significant.
I went to a&e 3 times in the 6 months following my stroke until I learnt how to deal with the anxiety. I still get things that I don’t know how to interpret, I’m nearly three years on.
Things like tingly fingers could be neurological effects, they could be a side effect of the statins, they could be nerve related because the brain signals aren’t moving and coordinating muscles so nerves get put under pressure…

One thing you both will have to get used to is that this is territory with so many causes and effect the medical staff very often don’t know how to answer any of your questions and the fact that there is doubt to any answer that they would give means that they give no answer, they avoid answering so that what they say don’t say can’t be wrong.

This community, as the welcome post says will generally give you several experiences of different people that at least shows you that you’re not alone even if it doesn’t answer the specifics of your experiences

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Get 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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That’s just it, you ARE doing it! You are there, being you, loving him regardless and no doubt physically helping him when he can’t, and that’s all you need to do! So many spouses/partners get scared, give up and run at the very first hurdle either because the can’t cope or refuse to cope. You don’t want to be that person, I can read that in your post. He’s the same man on the inside as he was before the stroke, treat him as such! I’m sure that’s all he wants, all he needs from you, is for you to just be you, to be the ever loving woman you have always been to him. And you are here getting help for yourself as much as him :people_hugging:

It will get easier! But like a broken leg, it takes time. Although it only takes 6/8 for bones to start knitting together and any surgical wounds to heal, you are not out of the woods yet. It still takes a year of that knitting and strengthening bone and muscle before being considered fully recovered. And yet there may always be some weakness there to it depending on your age and physical condition.

Unlike a broken leg, his healing is all inside his head where no one see what’s going on, not even on the scans. But it’s going on all the time, the brain is frantically trying to piece itself back together; and it takes a lot out of him. It’ll take a year and then some depending on the extent of the damage. Be prepared for that. There’s no going back, only onwards and upwards. So celebrate each and every stage of recovery and just be thankful you still have your man :smile:

Some people just don’t talk about feelings, did he before his stroke? I don’t really, except on here in order to help others.
I’ve only been married to my hubby for 24yrs and we have 2 young adult kids. I always say we are still in our honeymoon period as we’ve never had a row :laughing: We’ve had our ups and downs over the years but never with each other. He was my carer when I had my stroke 2½yrs ago, I never talked either…even when I got my voice, some people just don’t feel the need to talk all the time about feelings and emotions others do. But that doesn’t mean we care any less and my hubby knows that because he’s just the same. If something’s bothering us, we say it, resolve it…if we can…and move on. We are all about living life and getting on with it.

But then, our stroke brain also has too much going on with recovery and talking is actually draining for us…even thinking is draining! So it’s not so much that he doesn’t talk it’s just his brain doesn’t need lengthy conversation, it hasn’t got the capacity to cope with all that would entail for it to produce lengthy conversation just yet. But it will come, six months from now will be a different story, just be patient and wait :wink:

In the mean time, you need to concentrating more on YOU, the carer.
Hope some more fellow carers will come on here to help advise you, and there are links for carers in the Welcome post Simon post you should check out.

Take care of yourself first, he’s got all the help he needs :wink:

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I’m touched by how much support and advice I’ve received from everyone’s replies. I’ve learnt new things, which I’ve appreciated and used over the last few days. I felt stronger. Hubby has been walking more, he’s been in the water a few times and swam widths best way he can manage and for however mins he can do. We went out for a meal last night and he said hes feeling more confident and stronger with walking longer distance compared to last week… He’s still desperate to get back to work by September, he wants to see how he can manage work before feeling tired.

Today, he’s been tired and had early night. But he said his hand felt like it was burning, and he felt his leg was cramping. All this is new. I appreciate him telling me as I want to be part of the journey but then my heart breaks, and I can’t stop crying. I have so many thoughts inside me. I’m so scared.

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That’s great progress :slight_smile:

Going out for dinner & swimming!!!
Mobility, dexterity, coping with people lights and noise, confidence/anxiety, fatigue/stamina all demonstrated! Well done !!

You should record in some fashion how he was and how he is so you can chart of the progress over time .

I hope he’s back to work by September.
At this rate that is sounding surprisingly realistic. I’m torn between unreservedly appauling the aspiration to cheer you both on and sounding a note of caution about realism of expectations - to avoid a crash in a few months time. Maybe your feelings are being scared because you don’t have foresight as to what is possible.

Scared should maybe be replaced by prepared? That’s not truly possible because you don’t know what will unfold in the next few months equally that doesn’t mean that you have to be completely unprepared and obviously your contact with the stroke association and on here is helping with that what is also unfortunately necessary is allowing time to play out

Back to work by this September isn’t impossible, especially if he had effective thromboliasis.
There are many on this forum who dreamt of such time scales who found the reality of the first year or so didn’t match.

Can I suggest you hope for the best plan for the worst?

You’re not far along the path yet to really see what unfolds. The first few months will be the recovery of capabilities that were not destroyed by the stroke. The medical profession are brainwashed to tell you that recovery occurs in the first 6 months and then you reach a plateau beyond which you can’t go. It’s sort of half right- recovery of motor function happens in the first few months to reveal what capabilities need to be rebuilt by neuroplasticity. That happens over much longer time scales.

Also there are changes that start from the time of the stroke and take some months to manifest and they will only just be happening. They encompass cognitive, emotional and psychological effects, what may appear to be random aches and pains for example from altered muscle use, from altered gait or upper limb use - all still happening. They may alter the future when compared with the past. Also leg is likely to come back faster than arm. Hand & wrist is likely to be the slowest. Here learned non-use is to be avoided. It’s an insidious enemy.

you have a potentially long road still to go between you. It’s really fantastic to hear of progress focus on it, celebrate it, (share it here if you wish and) enjoy it

Very best wishes on the journey
:slight_smile:
Simon

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Hi, I know your head ust be spinning with all of the information you have been given since your first post but just thought Stroke4 carers might be a website worth looking at. It covers all stroke related topics in a straight forward, easy to understand way.

Best wishes to both of you.
Regards Sue

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Well I hope they were happy tears because they should be! Stop despairing and start thinking positively. There are many stroke survivors out in the world, recovered from stroke and getting on with their lives and work. Most on here are still in their various stages of recovery. There are others recovered well enough to have gone back to work but still pop in here to share experience and provide support.

Your husband has age on his side and it sounds like he is making good and steady progress. Concentrate on the here and now and celebrate his progresses…even when it’s just him telling you something of his current condition…that in itself is a progress…something newly recovered, a cognitive reconnection perhaps…within his brain.

Some of these are the kind of progressions you may never notice have occurred or take for granted, but he will! Not all progress is visible or obvious to others, some of those type of progressions he may never be able to explain/describe purely because they are indescribable, he may never even tell you…I know I’ve never tried to explain them.

By all means cry with joy, they are happy tears, but don’t morn for him as though you’ve already lost the man you love.

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Hi - thank you for sharing, when my wife had her stroke I was with her, phoning 999 within seconds - FIVE HOUR WAIT this is from the same team that tell you speed is important.
Every team on the stroke ward is “understaffed” and even when working “understaffed” they send staff to other sections of hospital.
Quality of physio team good, but “understaffed” so not as often as we would like
Discharge plan was supposed to be last week, 11 days ago, still no sign of her.
Contacted Care Association the night of the stroke, in part to learn more and in part for guidance - after 10 weeks bumped in to local rep “cannot help until discharge”
So signing off this site, get my wife home, and see what we can do for ourselves

By the by we live in west Wales, no shortage of senior people on 100k a year in all the public services, but they contribute ZERO to those that need the service they “serve”

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Hi Mrs a I had my stroke just before last Xmas and my recovery journey has often been 2 steps forward then 3 back. When my husband had a major heart attack nearly9 years ago he too kept his feelings much to himself. He’s not a great one for talking about his problems. He still holds to very old values that aman should be strong and not show any weakness. It took me ages to say he married to have someone to share with and this included his worries and anxieties. I always know when he’s bottling things up. We would all love our recovery to be quick but the brain needs to require and unfortunately this is a slow process. He’s doing really well and as everyone has said he must mark these milestones and keep a record. At the start I felt every time I walked I was wobbling but a friend videos me and I could see I wasn’t. Keep a calendar of “firsts” so he can see his progress. Listen when he wants to talk and keep showing him you are in for the long haul and that you love him. There is no manual to follow as we all go through this journey differently but the people on this forum are excellent sources of wisdom. Enjoy the things you do together and try to be as patient as you can! Not easy at times when we get so frustrated wx ourselves! My mantra every time I have a setback is today is a new day. Onwards and upwards . You will get better . Take care and just love each other regards Suzywong

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Hi @MrsA

How are you? Are you ok?

I am in my 40s and I would love to share more with you.

Kieran

:polar_bear: :polar_bear: