Finding it hard to adjust to small changes in husband 9 months after stroke

My husband had a stroke in January this year, and it was 36 hours before he got to a hospital, he should have and he didn't; I know we are incredibly lucky.  He has been off work since, and is starting again soon.  My challenge is he is just not the same than before, and I am pretty much the only one who would notice, as his wife.  I don't know how to describe it other than he was so caring before and thoughtful before and now he is 'functional'.  We just had a discussion about how upset I was about something and, in the past, he would have sought to reassure me and been kind.  Now he is 'ok thank you for telling me, I've taken that on board, is there anything else?'.   Even as I type this I feel pathetic and over emotional but I have been married for 25 years and he's just different and I am struggling to handle it.   Would so appreciate to connect with anyone else who might be going through this too.

1 Like

Hi Ginny as a SS I can see how I've changed where as I was very patient and a worrier ,now I'm like I don't worry as much I find some things people moan about trival and I'm a lot harder than I used to be not saying your husband is right but maybe it wasn't enough for his brain to think about too much ...we are different and are trying to deal with our new us which is very hard,for me it's like looking in on another person's life as I know it's not me how I used to be ,we greive for our old lives ,what I'm trying to say it's probaly not how your husband used to be but it doesn't mean he cares any less it's just the new him and he's probaly struggling with emotions like we all do ...pippy x

Ginny, welcome to the forum. Your husband is in the very early stage of recovery and his emotions will be all over the place. After my stroke five years ago, I found it hard to process information or to understand that my stroke had affected my partner. I was angry or just pushed information to one side. As I improved, I realised that I had to encourage my partner to take a bit of time off from caring duties. My partner also joined a carers group for a while because it was an opportunity to talk over any changes.

I am sure your husband will improve in time and that his mood will improve as his health improves. Stroke is a brain injury and, unlike a cold, it needs a lot of time to recover. In time he will become more like his old self. At the moment he probably is very wrapped up in the new situation he finds himself in. I wish you all the best.

2 Likes

Hi Ginny, 

Welcome to the  forum.  As a Stroke  Survivor, I found your post very interesting. I'm 4years post stroke (age 57 when it happened), which paralysed  my left side, my husband of 40 years is my full time  carer.  It is so tough for all concerned, I was very healthy  and independent when my stroke  happened.  It was a massive  shock to  both of us, and if I'm  being honest, at times we both still struggle  to accept  the situation  we find our selves in now.

I feel  so  guilty that it wrecked  our lives, although  I know it wasn't  my fault. I've gone from being a very calm and easy going person,  to being  frightened  of my own shadow.  Stroke  is a wicked disease  that changes everyone  involved.  All parties  involved are affected  but in a different  way and we all find  our own way to cope with things. I just try to be considerate and encourage  my husband to "escape " from me as often  as possible.

It's  early days for your husband, so I'm  sure things will settle  down as time goes on and he adapts to his new situation. 

Regards Sue

 

 

 

It's not intentional, I had damage in the part of the brain that regulates emotions. I have a blunted emotional response because of it, but having said that, I work harder at understanding other people's issues but, sadly, can't express it like I used to be able to. I am feeling what they are going through, I am thinking about what they are going through, perhaps even more so then before the stroke, but my reaction is just blunted. I can't help it, the response I need just doesn't register at the time. The brain also takes a while to disentangle information after stroke, so even though I hear what someone is saying and I understand in a split second what is being said, my brain lags at computing what has been told to me. On top of this, my mind is constantly dealing with a lot of noise, so it is hard to just isolate something and focus on that one thing without an enormous amount of mind management going on. Things start to become clearer in time and, in my case, as the clutter becomes less noisy, I have more clarity and focus. It's like driving a car, you can hear what the passenger is saying, but you have to keep your eyes on the road ahead. 

1 Like

Hi Ginny, the good replies so far have given you insights into how their injury has affected them and their relationships with other people. Stroke messes with your brain, and many of us struggle with our emotions. It does improve over time.  It may be that your husband has developed this way of dealing with the trauma he’s been through and this is his way of coping with his emotions. I struggled, and understand why the best stroke units have the three therapy areas: Physio, Occupational, and Psychological available to patients. I have spent a lot of time working on my psychological problems after my stroke. I can see how you are struggling to handle the change, he changed overnight and you didn’t (or not so much). You recognise the problem and you’re not pathetic or over emotional, just trying to make sense of it and adapt. It’s hard for the carer and they need help and support to. I found talking to a therapist about the trauma after my stroke and the ongoing anxiety helpful. Although it may not seem like it, 9 months is quite a short period of time for recovery. Having recently watched some of the programmes on 9/11 and the horrific experiences people endured, trauma is long lasting and recognising it is there is a first step.

Stroke changes us. We become new people.

the year I had a stroke, the stroke association published facts and figures. It suggested that 60% of SS split from their partners.

I am now six years on and I know what a different person I have become. I am an FCA, but took on the work of waiting on tables. That's a big big change.

colin

 

 

I agree Colin, seems hard for others to understand this change do you find?, no matter how muchI say I've had a Stroke people are expecting me to behave 'as I used to be'. I just can't. Becoming more reclusive but I don't mind my own company so it's not too bad ?

Hi Ginny, I'm so sorry you're going through what is a huge change for both of you. I'm not a medical expert .. but the brain can apparently adapt, build 'new neural pathways' (Neuroplasticity?) ... so, given time things may improve or just present differently. Maybe your Husband may show he cares in other ways, more practical ways, or just something that surprises you out of the blue? Even if things don't 'improve' he's still the same person you fell in love with, easy for me to say yes ... but maybe there's a way you can still connect ... listening to music, painting/drawing emotions etc. I really send you both lots of positive wishes and light x

Dear ZX

yes I agree with you.

others see us looking well and won't entertain the idea we are brain damaged. Permanently.

we look well because the medication is inclined to tan us.

I am an FCA but no way can I do accountancy any more. I. Make tea and wait on tables. And doing that took me months to master. 
 

our personality is also changed. We need to make new friends. Easier said than done.

keep smiling

be positive

colin

Yes, it's so frustrating I find, that even when you ask people pls can you talk a bit slower and DEFINITELY don't finish my sentences ? ... nope, off they go as if you'd not asked them/they don't believe you! Or it's the opposite, people talk to me really loudly and super slowly, which is just as annoying ? I suppose it'll take time for others to get a balance.

I imagine that was a huge shock, Colin, not being able to carry on in Accountancy, but great that you got back out there in Society. Don't think I'll be achieving that.

I've ready gone off (most) people ?, which sounds harsh, but it's funny how ill health shows you how friends/acquaintances really are, and 'out there' I'm wary too of making new friends. Where I live, there's zero support in most areas. Still in early stages of Strokes, so apologies for being a bit negative. Will try to keep smiling, you too ?? Anne

Hi Ginny. I have never used a forum chat like this before so hope this reaches you. My husband had a stroke in April. Although he was affected on a physical level. He has communication issues and like you in very limited in his emotional capacities. We were a very close cuddly couple pre stroke but now he just isn't able to reach me on that level. We hold hands and he does try but it feels like he is only doing these things for my sake rather than because he needs that emotional connection too. You don't sound pathetic to me. Loss of emotional connection after years of marriage (we have been together 21 years, married for 7) is devastating. 

Dear Anne

i am very pleased to retire from business. I have a very decent pension. I have always helped people with their tax returns etc and it was dropping those that was the difficult bit. Exactly what you say, they don't take any notice and try to insist I continue to help them.

I wanted to do something useful, so I started making tea and waiting on tables. This is satisfying work and means I contribute a little to society. It also trains my brain.

I am sure that,in time, you will find what you can do, employed or voluntary. Things do ease, your brain does start to work, even if it takes four or five years. Hopefully you will get improvement within two years.

I must admit that I have no stroke friends, despite efforts to make contacts. 
I have this crazy notion that we should all move to a dedicated town and live together. 
 

this pandemic has caused a lot of extra problems. I had a stroke long before the virus and things were much better then. Lots of options for groups to set up and meet, so don't give up on society, there will be improvements coming along.

if Emma Rodders can win in the USA then anything can happen

keep positive

smile endlessly

colin

Yes, that was incredible re Emma's win ... such good news amongst all that's been happening. Very inspiring, especially for her age group ?

I can see how your current work trains your brain, I get that. Good for coordination too, I imagine. It must be interesting to hear snippets of peoples' conversations.

I've played Tennis and Squash long time ago ... loved Squash. Ive lots of chronic health conditions, so we'll see what happens. Maybe a Book? Have had a full on life so, maybe it's time for that?! 
used to Surf ?‍♀️...if ever I make it back on the Waves, I'll be more than happy ?

Thankyou for your positivity Colin, you keep smiling too


 

 

thank you all very much for your replies, they have helped so much and I am using your ideas and thoughts to adjust my responses and this is a better week x 

Thank you for your reply, I do find it helpful to hear another's experience.  I have had a tough day today where he seems to be completely unaware of any emotional needs I have - to the point where I have asked him to do something for me, and he's not seen the point so said no....it got the point where I just withdrew.  He depressingly seems fine with that.  I feel like I can't confront him, because it simply isn't his fault (although in my meaner moments I think he is doing it on purpose) and will only make things harder for him.  I have to find a way to make peace with this.

Thanks for taking the time to write this, it really does resonate with what I observe in my husband.  Can I ask how you know you were affected in the emotional regulation area?  Can they be that specific?

I'm so sorry to hear of how things have changed for you.  I think we were misled by how he presents as physically fine and not so much that it really is a brain injury....it's not a broken limb.  And yes, we must all find our ways to cope, and allow for those days when we can't be a better person I suppose. x 

So sorry to hear of your problems. Sometimes people forget it is not only the stroke survivor that needs support, but also the person who is caring for them. They seem to be the forgotton ones. I have heard there is a website for stoke survivor carers.......which is more in tune with people who are looking after their loved ones. I don't know what it is called, but maybe someone on this site or even the Stroke Organisation will be able to find out and let you know. I am sure this would be of benefit to you.

I wish I could offer some help and comfort to you, it must be so difficult, please try and find some help for yourself, as without you, your Husband would struggle.

Take care, am thinking of you.

Jane.

Sort of, in a general way, I had a stroke in the cerebellum which is responsible for emotional learning, responses, and processing, so motor functions associated with emotions. But, I had quite dispersed damage as it was multifocal. What the damaged parts have affected, they can't be entirely precise about. 

If you can see your husband's MRI, it will show what part of the brain has been damaged, and that will also reveal what functions that part of the brain is responsible for, however, it's more complex than that because the brain communicates with each part, working together, and every brain is unique to the individual, so even if the cerebellum is intact, it may still be having trouble communicating with the part of your husband's brain that has been affected, and vice versa. 

His brain will continue to rewire itself over time, we are essentially rebuilding pathways, and per contra to how many of us feel, it can be an advantageous opportunity to improve upon what we had established brain-wise before the stroke.