Husbands recovery seems to be going backwards

Hi, I’m new to this forum and any help would be massively appreciated. I apologise in advance for the very long post.

When my husband first had his stroke in March 2024 he had a very much glass half full mindset and made really good progress. He was happy to be a survivor.
Initially he couldn’t walk but was back up on his legs with the aid of a stick within 5 weeks, he had a NG tube but is now able to eat normally again. We even managed to have a holiday abroad which was a real bonus.

Lately his recovery seems to have declined in the fact that he complains constantly about pain in the bones in his feet and knees and is blaming the statins for this - I have told him to speak to his Dr about this - has anyone else had similar issues?

Over the past few weeks he is now more about what he can’t do than what he can and has become very snappy and irritable - me being the main target - again can anyone else relate to this?

His moods seem to have declined ever since he has started a phased return to work, (prior to this he was happy plodding about at home) his employers have been amazing and have made every reasonable adjustment possible. He didn’t like going to work before his stroke and wanted to retire (but he did attend and being honest did over and above his role and contracted hours), I think he blames his stroke on thee stress brought) He has said he doesn’t know why he should have to go now he’s had a stroke but sadly that attitude doesn’t pay our bills, he will find any excuse not to go (i.e. if he has had a G/P appointment first thing he think’s it’s ok to take the rest of that day off) I have tried to explain to him that if they are good enough to allow him paid time to go to the appointment he should then fulfil the rest of his hours that day as they are not going to tolerate him ‘blobbing’ without reason on a regular basis forever.
We are not entitled to any means tested benefits and he has an expensive hobby restoring old scooters. My wage alone wouldn’t sustain our lifestyle or even cover all our essential outgoings/mortgage etc.

He has never complained of excess fatigue but on joining a fatigue group in the last few weeks (at the recommendation of his rehabilitation nurse as he’s returning to work) all of a sudden has started identifying he is feeling fatigued, it’s as if another member of the group has mentioned something that he now decided he’s got which he didn’t have before.

He doesn’t seem to be able to tolerate noise, i.e when the Grandchildren visit he has much less patience with them which is sad as they idolise him. I ensure that they are in the playroom with me so he doesn’t really interact with them but when he does it’s half hearted and he complains about the mess.

I do absolutely everything for him to make his life easier, from arranging and reminding him of all his appointments, I do the majority of the housework, all the shopping etc so he has very little to do on a daily basis.

He makes no effort to show any affection at all towards me, not even a cuddle and I am feeling very lonely and more like his carer/general dogsbody than his wife. He tells me he loves me when I’ve done something for him and tells me he doesn’t know what he’d do without me but never on an ad-lib basis. He’s never been the most tactile of people but now it’s non existent.
When I try and broach the subject he flies off the handle and it ends up being my fault - like everything else does.

However when we are in company he is a totally different animal, laughing and joking until after our visitors have left or we come back home and he then reverts very quickly back to his ‘usual’ ways. I think this is why my closest people find it hard to believe when I confide in them about what daily life is really like.

I have my own health issues, (i.e. I’m almost blind in one eye) but they seem to be totally ignored or disregarded because I haven’t had a stroke so it’s not important. I have recently been through a 45 day consultation process for redundancy which I’m sure you will understand was really scary, I barely slept but he didn’t really engage with how I may be feeling. My shoulders were literally locked with the stress and despite dropping hints a little massage would be helpful he didn’t take me up on it but expects me to cut his ingrowing toenails to order.
Fortunately I’m one of the lucky ones so that pressure thankfully has been taken off me and I still have a job - one less thing to worry about.

I’m starting to become bitter and feel like I’m starting to ‘check-out’ and am just on auto-pilot which is the last thing I wanted to do, hence the main reason for my post. I will always continue to look after him and do my best but am really struggling, mourning for our old life and some fun every now and again.

I don’t want to make this about me and totally understand he has been through a life changing event, work can be tiring but yet spending hours on a hobby isn’t?
Can anyone please reassure me this is temporary and things will get better as if they get any worse I really don’t know if I can cope. I hate to admit it but I’m drinking more than I should to numb myself, I know it’s not helping as it’s a depressant in itself and am conscious that I need to find other sources of support, hence joining this forum.

Sorry if it seems like a rant or pity party I just need to try and some answers or solutions.

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Don’t worry about having a little rant on here. I think we all need that occasionally and we are happy to listen. A stroke affects family and friends as much as the actual stroke patient. There is always a grieving process after a stroke for the life you have lost.
I can’t tell you that your husband will get back everything he lost as every stroke and recovery are different. It is easiest to take out anger and frustration on those closest to us.

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Gosh @TraceyS you’ve got the full set! :frowning:

Many things to say: We can’t say if it will get better because we don’t know the circumstances but other people have been where you are - the magnifying glass above will help you search the posts and when you find someone with a similar story you can look there contributions via their activity on their profile or put @name in the search box

Before we go much further I guess I ought to say welcome to the community.
its as Janet said; the community is knowledgeable and generous. You’re very welcome to have a rant here and that’s important.
Since you’re taking the brunt of so much you need to look after yourself and never feel guilty for taking ALL the support you can get - are you connected to the local support groups?

You can Find some of them at

Https://www.stroke.org.uk/stroke/support/groups/map-local

And

Https://differentstrokes.co.uk/all-groups/

Also see

And SA helpline 0303 3033 100
or
Stroke Helpline | Stroke Association

Pretty much everything else you mentioned has been mentioned by others before. Maybe some of it is in the welcome post

That’s probably enough sign posts for now but there is more here and more that it sounds like you need.

Keep posting and we will keep replying.

Caio
Simon
SIG

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Hi @TraceyS & welcome to the community. Sorry to hearvof your struggles. You are not alone in those struggles - others have pisted similar things on here which you can find, as simon mentions, using the magnifying glass.

I wonder if some of the problem with your husbands moid is because he has returned to work. I waa off 18 months following my stroke & I found returning to work very difficult. I had many adjustments in place too - my employer is great in that respect but it still made me feel inadequate & seemed like a regular reminder of all the things I could no longer do. This affected my mood & was also very fatiguing.

The noise issue is also something i struggle with. I have purchaes loop earplugs to help in situations where the noise would otherwise be unbearable. Maybe worth a try for your husband?

And don’t ever feel like you are making this about you. You are really important & you need to look after yourself too. Simon has provided some links to carers info. Give it a look.

Perhaps try letting your husband do more for himself too. There is sometimes a temptation to help when he is able to do it…however long it takes him.

There are no guarantees but things often do improve so please don’t give up hope.

Best wishes

Ann

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Hi @TraceyS

Welcome to the community, I’m sorry to hear about your husbands stroke and the difficulties you’re facing at the moment.

As has been mentioned you’re just as important - a stroke affects the whole family, not just the stroke survivor so make sure you look after yourself too. There’s already been some great links posted which I hope you’ll find helpful.

If you need anything whilst you’re using the Online Community please don’t hesitate to tag me using my username and the @ symbol.

Anna

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Hello Tracey,

I have no answers, nor solutions, alas. I wouldn’t take statins if you pointed a gun at my head. I’m sure he’s right about the pains they cause. His stroke was 6 months ago ; hardly enough time to settle. How old is he? and how severe was it on the Stroke scale NIH? What disabilities was he left with ?

Here’s a thought you might not agree with ; but I think it would make him understand a few things. Show him your post !! You’ve told us about your feelings, great step by the way, now it’s time to show him !!

Fatigue? Alas, one has to understand we are powered by mitochondria ; they are heavily dysfunctional and confused after a stroke. There’s a lot to understand here. I could write a 200 page essay on the subject, but I’ll just suggest trying some shilajit instead.

Very strong reasons why noise is now a problem for him. It’s due to his stroke, but will likely improve with time. Was his stroke left or right brain hemisphere? From this we can tell if organizing his day is a plus, a minus, or time to time to phase this help out (yet). As a couple, it may be time to readjust the work load balance. Can he hoover up? Do the washing? DIY?

Good luck, and do let us know how things are progressing. There’s every reason to hope for steady improvements in the long run. For now, take care and rejoice; things could be worse, but you are both alive and TOGETHER !. Ciao, Roland

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Thank you for all the information, makes more sense now! He is 64 and had left side ischemic stroke
Thankyou, Tracey

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I won’t mention the six month period after stroke and plateau that follows in this post but you can search for it. I’ve had a dreadful day, so will express that relationships that began without a debilitating morbidity tend to function between two dependable people, each using their strengths to balance the other’s weaknesses, so to speak. Subjective strengths and weakness, of course. After stroke, in my experience, I couldn’t be dependable in the same way that I was prior to being struck. Did I resent my partner for her seemingly good health? Sometimes, deep down, yes. I didn’t have that sort of relationship with strangers or close friends, so they lifted me out of my responsibility paradigm and, I guess, distracted me. Back in my relationship, I also had created a bubble around myself, a bubble of fear, anguish, mortality, &c. I floated around in this bubble and my partner could rarely enter it, and when she did, she couldn’t empathise, and that’s natural, non-damaged brains really have trouble empathising with what damaged brains are experiencing. How could they? Divorce rates are higher among stroke survivors. I separated from my partner, eventually, three years after stroke, and had a year’s break. We are now back together and it feels a little better. At that point, the point of having a break, I needed time on my own. Time to stew in my own world, to sort out the broken bits of my brain, and get a little solitary peace and quiet. If you both care for each other, you can work out what is best for you both. Good luck.

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Thankyou for sharing your experience,I guess who knows what improvement totally looks like.My wife has been a saviour.
Hope thing improves for you ,my spelling seems to have suffered miss letters out
Take care Chiz

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Hello Tracey, I am most sorry to learn of both your husband’s stroke and post stroke struggles. I’m making these observations because after my TIAs I too struggled with coming to terms with my new differently abled self. It hugely affected my confidence and subsequent lack of desire to socialise with anyone except my wife and daughter. I was also periodically extremely snappy, change resistant and inflexible - it was as if I were punishing the ones I had selected to minister to my needs. It was not dissimilar to the reaction of a wounded animal, creeping off into a dark corner to lick its wounds and not letting any of the pack witness its weakness.
To her eternal credit my wife arranged for me to see a therapist who introduced me to the light at the end of the tunnel as well as meditation.
We are all different and we all react differently to various measures, but for me this put me on the road back to self esteem and the acceptance of the new status quo.
I really wish well and hope that things improve for both of you.

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Great post
Thnx for sharing :slight_smile:

Caio Simon
SIG

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Hi Tracey
Sorry to hear things are not going so well!
I think everyone hears what you are saying, its such hard work trying to keep all those plates spinning!
From my own experience with my husdand ( who in oct 24 had a left side ischemic stroke at 64 which left him without speech and without any movement on his right side) that at the start of the year i just couldn’t believe how our lives had imploded.
I couldnt see much of a future and i am generally a glass half full gal!
However, my husband has kept pushing himself and things are starting to come good.
He was put on fluxetine last December which we started to slowly come off 2 months ago. That was like changing a gear as he is starting to make some good sounds now. His mobility has improved and he can get around the house downstairs using a small quad stick. This has given him the chance to do certain tasks and makes him feel involved.
I hope this gives you the strength to keep going.
It is such a hard job being a carer and a worker and carrying all the responsibilities alone. Nobody knows what the future holds but i can only send you wishes of support and strength.
Keep strong!

Jan

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Hi Tracey

Out of interest, what was your husband like before stroke? I.e did he do jobs around the house, cook meals etc?

Sorry, i put my husband stroke down as 2024 - should have said 2023 !

Thats what my life is like these days :upside_down_face:

Regards

Jan

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