Newbie - wife of stroke victim

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1

Hi everyone,

I'm currently still in a bit of shock, and looking for some reassurance really.

2 weeks ago my husband was in London for work, and stood up after a meeting and couldn't plant his left leg, he felt dizzy and fell against the wall. After resting and drinking some water, felt a bit better. The same thing happened on the train home later that day, along with tingling in his left cheek, and when I picked him up from the train station he told me about it. He then started talking about snow being outside the train station (there was no snow), which got me worried, and subsequently called 111 who sent an ambulance. I immediately thought stroke. They checked blood pressure and did a heart trace. He presented fine at that stage, so they left putting it all down to maybe sciatica and a virus. I still wasn't happy and took him to the GP the next day. Blood pressure still fine, leg still weak and shaky, but GP seemed to be happy with the physical tests, but seemly reluctantly referred him for Doppler scan on his neck arteries to maybe rule out a possible mini stroke, but was positive this wasn't the case. 

Fast forward to Tuesday this week, a week and a half after this, we are seeing a consultant at Addenbrookes. Neck Doppler looked fine, but she wasn't happy with the reflexes in his left leg and sent him for a CT scan, which showed a stroke, apparently a clot not a bleed. Discharge notes show 'A very well demarcated hypodense changes in the right cingulate gyrus. Appearances are not typical of acute infarct, but would be consistent with a two week history' under neuroimaging.

So he's had a stroke. This came a massive shock obviously. He does have risk factors, he's type 2 diabetic, and five years ago to the day almost of having this stroke he had heart surgery to replace his aortic valve as he was born with a bicuspid valve (I'm only just over the shock of this as I was lucky not to lose him then as he had no idea he had this congenital heart condition). He's pretty healthy despite his medical history, plays squash 2-3 times a week, and I ensure he gets scratch cooked healthy meals with lots of veg. So the Stoke has knocked me sideways and shaken me to the core really.

They are certain it was caused by his INR being out of range (he's on the blood thinner warfarin for life following the mechanical valve replacement), and his blood being too thick, hence the clot. They'll obviously have him on a much tighter rein and warfarin range, and I've also ordered a home testing machine for reassurance.

Thankfully, and comparing him to the rest of the patients in the acute stroke unit, he's got away pretty lightly. He can walk fine, but with left leg weakness, communication fine, and seems to be all there personality wise. He has some coordination issues with his left arm and still very tired and spells of dizziness. I'm aware of how relatively unscathed he is considering.

Me though, I'm terrified. Terrified of it happening again. I have no idea what it means going forward. I don't think he'll be able to do the job he does again, nor do I think I want him to, it's highly technical and stressful with long hours. GP has signed him off initially for 6 weeks on Friday, so I need to speak to his boss/HR to explain the gravity of the situation. 
 

Our life has changed in an instant, we were looking to move to NZ where I am from ironically to remove stress factors and slow down. We were hoping to have another child, we have a five year old. It's all off the table now.

I don't know what I'm trying to say, and appreciate this is all a bit of a brain dump/essay above, but I'm scared, worried, tired (haven't slept really since the diagnosis earlier this week). I googled (dumb I know) life expectancy after stroke which has terrified me even more, and basically feel like I'm going to end up a young widow.

Anyone have any advise on how to come to terms with this? I feel bad because I know things could be a lot lot worse, so maybe I need a bit of a virtual slap to say calm down! 

 

 

2

So sorry to hear of hubby being bitten by a stroke. And welcome to this forum.

What an awful few weeks. Most strokes are clots fewer are bleeds. I am a clot.

The key for us clots is whether or not there is an infarct, which in my terms is a bit of dead brain. It sounds as though there is a bit of dead brain and hopefully just a tiny bit.

Around the infarct we are likely to have a damaged part. That damaged part can repair fully, but the infarct can not. Any dead bits, the brain can not repair so it "works around" which in medic speak is neuroplasticity.

TIAs or mini strokes are different. No permanent damage.

What I would want to know is the final diagnosis. Not all the ifs and buts, what is the final diagnosis. His discharge letter should state this. Diagnosis. Then plus notes.

Every stroke is different and lets hope he is the very best end of the scale.

It is crucial to rest, sleep and drink lots of water. Once he reaches about a month then the risks of further disaster are minimized. So lets all pray for the month or so to pass.

At that stage then all the hours before stroke become less significant. It will then be an improvement session for months.

He will be advised about prevention. 

Most of us on here were pretty fit before stroke. Thats part of why we are survivors. He has survived so far. So he has been chosen to live. The mortality rates are probably weighted by the poor souls who hardly wake up, please look at what he has recovered, not at what could have happened.

Many of us have heavy duty disabilities. The cognitive stuff is worse than the mobility stuff. But we get improvement. Slow, very slow, but things do improve.

The stroke association do excellent leaflets so get the set of them all and read them. They are online and probably at your GP surgery and also in the hospital stroke unit. Or ask the SA to send you the "stroke information pack".

 Most of us had a fear of a second stroke. And a fear of the location of the stroke. The brain does not like a stroke, so it triggers deep reactions to get away from another one. I would ask you to avoid displaying your own fears so that he can progress through the recovery path, including losing his fear. I slept with the light on (stroke was overnight, in my own bed) and after six weeks I didnt need the light.

When dealing with HR I suggest you ask them to have someone with stroke expertise available. Maybe though, you need things to settle to confirm the extent of the damage to his brain.

As for yourself. You need to look after yourself. He needs you and he needs you fit and well. If you are in deep shock and continuing to malfunction then have counselling. It can well be a godsend.

No virtual slaps. If you cant be allowed some panic right now, then when can you ?

And accept his stroke was less bad than some. Key on to this to give yourself hope. The fact that he is less ill than some doesnt really help a lot. 

Lots of us are here for you.

I have no medical training. I just pass on what I have observed of my situation and what others tell me.

Colin

 

3

Welcome to our forum. You are now among friends. Colin has given you excellent advice, as always and I can only echo this. As your husband was fit and on a good diet, he is is in a position to make a pretty good recovery. He sounds as if he is doing well after what is, in effect, a very short period. Stroke, however, is serious and, sensibly, you realise he cannot carry on working at such an intense level. His employer may not fully appreciate how serious a stroke is, so do seek out all the information Colin suggests, so that you can emphasise what a stroke is and how it has affected your husband.

Clearly, you both had big plans for the future and these need to be reassessed. Stroke has both an emotional as well as physical effect. You will need to be both gentle with each other but also realistic. A stroke means we are not the people we were, but it doesn't stop us living. You just have to find a different way of being the person you are now. He will, of course, have ups and downs and there will be frustration and regret over what he cannot do any longer. Quite early on, I accepted my stroke and that helped me get to grips with it. Mine was caused by a bleed and it took away my left side. I found it hard to recover physical, but, four years on, I can walk reasonably and have sufficient use of my left arm and hand to remain independent. A bleed stroke is usually worse than a clot. I am also diabetic. My only bugbear is post stroke fatigue, which hits many of us. I now need an hour's nap at noon every day, but I am now 76 so age is also a factor.

Finally, fear of another stroke is common. It eases over time. At the moment you are both in shock, but don't be too hard on yourself. He is still with you, whereas many do not survive. I wish you both all the best.

4

Thank you so much for your reply Colin & John above too. 
 

I've managed to get us all out of the house this afternoon to some good friends who have cooked us a roast.

I feel a little bit lighter, he's coped well with a few hours out, but tired so came home to rest. I've realised quite quickly about the fatigue that you both mention, so I'm not really allowing him to do much just now. 

Occupational Therapy starts tomorrow, so he's been lucky they've set it up so quickly. It's cognitive therapy (physical later in the week), so I hope to gain some advice on how to deal with HR at his company.

I think you are right about some counselling Colin and I think I'll reach out this week as a friend has suggested a good therapist. This stroke is just the latest thing after a good few years of stressful events and I need to keep my anxiety in check in order to be a good support to my husband.

I hope you are both right about him being fit and healthy enough to get through this. 

Thanks for taking the time to reply and help ease some of my stresses. 

 

5

Can I now add in some meat on the bones.

Post stroke tiredness is the medical term. This doesnt begin to describe the issue. So us stroke survivors coined the phrase Stoke Fatigue or SF for short. A lot is happening in the medical world to help ME sufferers especially those who have the ME/CFS version. I think CFS is very similar to our SF. 

I am currently grinding through the NHS world to see if I can get any help with SF. I will post on here from time to time.

I try to rest before the fatigue kicks in.

Please note that your support will be helpful, but you cant mend your husband, he has to do this himself. And at his own pace, which will seem like dead slow. You cant rush your brain, it just makes things worse.

He is approaching a month post stroke. Please get him to take things easy for now. He is so near to the stage when you can safely say he has survived. Then the hard work of recovery can grind on its way. I have read thousands of posts and the common thread is that we were fit before hand. 

Now what about you.

You need to turn your attention inward and think very hard about what you can cope with. You can only do so much. And once you realize that you have to pace yourself then in fact the slower pace will help him a lot.

You need time away from him. After one day I realized my wife was careering towards a break down so I told her to get away from me for at least one hour every day. In reality that was sending home from the hospital an hour earlier than she intended and telling her to get a taxi to save a lot of time on the journey. Once I was home I insisted she went out evey day, she loves shopping so it was the shops every day, with a visit to friends for coffee as the alternative.

Stroke groups have sessions for carers. After a while you might consider this.

In the meantime I wonder if you both need to slow down for a few weeks.

I havent forgotten that you have a young child and I know how difficult things might be. Take all help offered !

Colin

6

Hi Colin,

Thanks so much, all of this makes perfect sense.

I've done even more reading last night after my husband went to bed, and some of the posts on here, and you are right, fatigue features heavily, and you see people mention it over and over.

He's had an assessment this morning at home, I think the OT team seem to be gleaning as much info as possible to ensure they offer him the right type of therapy to assist him with recovery. That helped me to understand a little more about the stages he'll need to go through.

He was really tired this afternoon after what would have been a bit tiring I expect answering the questions they had. So I had him lie down upstairs and take a nap in peace before our son got home from school.

I did manage to get out during this time and have a chat and a coffee with friends, so that helped me unload a bit without him or our son being around.

Ive been in contact with his work and asked them to liaise directly with me rather than him so as to allow him to not think about anything and rest.

Apart from a warfarin test and some more OT later in the week, he doesn't need to do anything else, so I'll insist he rests as much as possible, making the most of school hours. It'll be three weeks on Thursday since the stroke, so I'm hoping and praying we get past it the first hurdle without further incident. 

Oh his official diagnosis on his discharge letter is; A subacute Right ACA infarct, in the context of subtherapeutic INR

Mel 

7

Hi

My very active 55yr old partner had a stroke completely out of the blue 18months ago. One minute I asked him to nip to the shops next minute he's on the floor with his head in the bin. He'd had a stroke. He's doing good but yes life does change but you will adapt. This is the first time for me on a site like this because I was always very much get on and deal with it, but sometimes you can't alone. Get as much you time as you can and don't feel guilty about it, I went out alone for the first time today. Fatigue is the hardest bit to deal with but you learn ways around it. If you get angry go outside shout, scream, kick the wall don't ever hold it in because it will fester. 

8

Stroke is a rocky road and during the first months there are often lots of issues. Your hubby seems to have sailed past many of these issues better than any previous SS that I have come across. So thats really the best news ever for him and his family. His infarct is not a common one and perhaps its lodged where it does less damage than it might otherwise do. I do hope that is the case.

SF may become apparent later. As all the other stuff slowly clears, the SF might still be waiting. My SF is bad and I have to wonder whether I could have done things differently in the first two years. Probably not, but I do wonder. I made a basic error in as much as I didnt bother with my mobility whilst I concentrated on all the cognitive issues. Not a sensible move, hindsight is wonderful. 

To put his situation in context, no way could I go for an evening out with friends. And I have been working on my recovery for over 4 years. Apparently i had a small stroke but I dont really know what that means.

No two strokes are the same. Thats a mathematical impossibility.

I would like to emphasise that its your husband who will make the recovery and, as fantastic as you are, you can not make the recovery for him. Your support is very important, but its down to hubby.

best wishes and please say hello to your hubby from me

Colin

 

 

9

Thanks Colin, that's interesting what you say about his not being a common one, maybe that's why so far (touch wood) he's getting on better than expected considering. 
 

Disturbingly he was actually working from home the week before last, as at that point he'd been seen by only paramedics on the day it actually happened the week before that and the GP the following day, when he was humming and ha'ing about whether to actually refer him to neurovascular to rule out a mini stroke! Only to find out early last week it's clear as day a stroke on the brain scan he had. In hindsight I should of listened to my gut and not medical professionals and pushed to get him seen sooner, as I know all the red flags of a stroke as there's been a few on the female side in my family. 

I'm pretty horrified that he was working now, but as you say hindsight is a wonderful thing.

He's got a close eye from me now to basically do not a lot but sleep and not much else. 

In the grand scheme of things and what could have been, he's been very lucky so far. I'm much calmer having armed myself with a bit more information.

You look like you offer an amazing amount of support based on your own recovery on this forum from reading through some of the posts. Thank you for taking the time to extend that to me too, despite still recovering yourself. 

10

Your post so resonates with how I'm feeling right now, my fit and healthy husband had a stroke December last year, which has left him with right side paralysis, currently he is in Rehab. The shock of having your whole life turned upside down is immense, the future you had planned under question, truly heartbreaking, we are not alone I believe there are lost of others out there experiencing what we are.

For me seeing my darling husband struggling to move is heartbreaking, however we are starting to have happy times, just doing simple things like watching the Birds feeding.

I am also trying not to think long term as it sends me into panic, I hope in some way I have given you a measure of comfort,  as your post has to me 

 

11

Hi - just to agree with you 100% about the support that can be gained from this site.  Just like you, I found myself suddenly having to cope with a husband who'd suffered a stroke, (August 2017), and we didn't have a clue about what to expect etc.  It was such a relief to find this site and to have the opportunity to hear first-hand about the effects, and to realise that everything he was going through was "normal" for stroke.  

Keep reading and communicating with the wonderful people on this site, it will help you to manage your husband's recovery, and someone will always be here to listen and help.

Stay strong, and hold on to hope! xx

12

Hi Laura, lots of us know exactly the experience you are going through.  It will get better, and as you are already discovering, there are happy times enjoying the simple pleasures of life.  Stay strong and take things slowly, your husband's brain will be re-wiring and that takes time and lots of rest.  Keep checking in with this site, you will find lots of help and support ? xx

13

Hi 

my son aged 32 had a stroke last August. Also right side paralysis. He spent 10 weeks in hospital and with a lot of effort managed to walk out. Since then he has worked hard on his rehab and we see small progress,but progress non the less. 

Celebrate the small steps of progress,when I am feeling low I take a minute to look at all the video diaries we took of him learning to walk again and it makes me realise what he has already achieved. 

For the first 4 months I can honestly say it felt like grief. Grief for what my son had potentially lost,it was at times overwhelming. Then,and I can’t put my finger on it my feelings changed I think into acceptance. 

Things will get better for you,you will shed many tears of sorrow and laughter during his rehab. Try to celebrate every achievement. Mine today was that my son just about managed to get his shoe on by himself ???

J

14

I didnt know a thing about stroke, just that FAST was relevant, and even that I got completely wrong as the advert means any one of the signs then dial 999 whereas I thought it meant every one of the signs.

Yet I knew I had had a stroke. Even though I had no idea what the symptoms might be. I just told my wife to diall 999 right now and tell them I have had a stroke. How did I know ? No idea. I live in a rural village about 7 miles form a hospital. The para medics were at our door in two minutes, the ambulance in five. Straight into a dedicated stroke resus room, a nurse was introduced to me and I was told she would not leave my side until I was in a ward. Which is exactly what happened. Medical staff were outside in the very cold December morning, meeting the ambulance. Later the ward sister came to take me to the ward, relieving the dear little nurse who had been there for 2 or 3 hours.

I am not trying to boast, I am trying to emphasise just how different strokes can be. The actual stroking was whilst I slept. I only knew anything was wrong when I couldnt get out of bed.

In your case, I dont know what you could have done differently. Contrary to popular belief, banging a drum and demanding action from the NHS doesnt work. Both you and me would not have been in the stroke resus ward within 4 hours of stroking, so the plastiblast couldnt have been made.

The support after stroke is a disgrace. We need a dedicated place to attend for rehab and follow up. We need far too much time for any GP to be able to help. Since I was bitten in December 2015 things have improved, there is some follow up etc. In December 2015 things were ten times better than say 2010.

When I could manage to write a post, then the forerunner of this forum was the place to be. People came floating in to my life with advice that simply wasnt coming from the professionals. In particular there were two people who were about 9 months ahead of me and they guided and pampered me. They were angels. So I want to return that favour to others. The current site is not good enough. Far too difficult to use when your brain is not firing on all cylinders.

Also, I was at deaths door, literally I was dieing in the resus ward. Surrounded by doctors and nurses and I was no longer in my body, I was just wondering if I would feel those paddles! But as I travelled away, I was suddenly back. So I do think I have been given a life when so many do not survive. There must be a reason for this and I am still looking for it! Perhaps its my place to help otherstroke survivors.

Best wishes

Colin