Help... How do I deal with this

It is hard to write this, but even harder not to write it. I have been inspired by many of your stories, some sad, some uplifting. I, too, have had moments of joy, but I have also had moments of despair. Two years ago, I had two strokes as a result of Covid. Like everyone who has had strokes, the journey has had its ups; the chance to meet the grandson who was not born before my strokes, the time I’ve been able to enjoy with friends, the time spent swimming and walking through the country. But there have also been despair – not prompted by any physical loss, but by the impact that damage to my brain has had on close relationships. Relations with my closest family can be so strained as to leave both sides raw and shattered. My wife and I can barely have a day together without a bitter argument that makes both of us despair. I am sure it is me. The strokes have caused brain damage. (Astonishingly, according to doctors, far less than I should have had, but there nevertheless.) My brain damage means I can sometimes misjudge a conversation, stress can make me so upset as to plunge me into a dark place, my memory is damaged. I have, perhaps, caused much of these problems myself. I have wanted – and asked – to be treated ‘normally’. But I am not the same. For me, this is not a contradiction, but for others it seems to be. I – and members of the family – have tried therapy, psychological help, but I feel it focuses on what I have lost and how to get round that. Others in my family may disagree, but I feel not enough time has been spent helping other people understand the impact of stroke on behaviour and relationships, without trying to “fix things” or “build understanding”. I may be wrong, I don’t know, but nothing has so far fixed the strained communication and the decline in empathy. The reason for writing this is to find out whether others feel or have experienced this, and what have they done to fix it? There must be others who have gone through this, and feel they have learned how to handle it, even if they haven’t overcome it. Thanks for reading and I hope sharing can help others, and help me find ways of helping relationships recover and grow. It must be possible to create understanding, not an understanding that makes someone affected by strokes a “victim” , but an understanding that makes me feel whole and valued,even though I am changed…

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Thank you for your very honest post. I can empathise. When I came home after my stroke my partner said we had nothing to look forward to. Initially, my mood was angry and combative, but then I realised that stroke affects loved ones as well as the survivor. I taught myself not to snap back or to play the ‘poor me’ card. I also made up my mind to move from ‘I cant’to ‘With help I can’.

Now, after 6 years we can have short breaks and days out. If something is too much for me I rest. Much as I would like to be the old me, I’m not. I still get tetchy in supermarkets because I can’t keep up with my partner and feel frustrated by that. However, I discipline myself to stand still and wait to be found rather wander round stressed.

I am also honest about my limitations and tell other how I feel without blowing a fuse. We survivors are rarely fully understood, but I suspect stroke frightens other people and they have little knowledge or experience of it. Not sure if this helps you but it’s my response.

I to can empathise with you. Two years post stroke and I feel my Husband really dislikes me!!! He has never been the best person in the world to be sympathetic and helpful (that’s just his way) so of course now it feels really worse. Unfortunately, like many of us stroke survivors, people are under the impression that once the stroke is over, we should all be fine, they have not realisation of what we go through and are going through. I know this might not help you, but it is just to say that you are not alone in this. There are many stroke survivors who have tremendous support, but there are also a lot of us that don’t. I get through it the best I can, and it can be done, just try to accept it, as that is the way it is. Not fair I know, and I do sometimes get envious of people who have caring family and supporters. But I look at it this way, " I have survived" and that is my bonus. I can put up with the rest. Hope this helps a little bit.
Take care and best wishes,
Jane.

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John, Jane
I cannot express how lucky I am to have had such responses. Both different, but both caring, insightful and speaking from the heart. You have both given me things to think about, ways to be, and the drive to keep going. Thank you. Thank you for sharing, for your advice and your support. I hope that in some way, I have helped others. But now I’m struggling to hang in and keep going. Both of you, hang in there - and take credit for understanding and helping someone else…Thanks

Hi @pmylrea it can be a distressing part of the aftermath of stroke, depending on what part of the brain was damaged, changes to behaviour can occur, unfortunately SS’s loved one’s can think you’ve changed or are now a different person and it’s difficult for them to reconcile with this.

There’s a Stroke Association article on this.

Wishing you all the best, take care

Shwmae @pmylrea, yea, yea and yea.

Yes, I have been through this shattering experience, and what I have learned from this is that I was so concerned with the physical effects of the stroke I had, I had neglected the potential psychological effects, I too have misjudged conversations, and have had outbursts which have resulted my tail firmly planted between my legs. Fact is, I now know I am capable of disinhibition and inappropriate social behaviour. Wow, can you imagine the psychological shock that confronted me then? I went from mild-mannered Clark Kent to Super-Twerp in a smattering of brain injury.

Initially, I bickered with everybody because I found the lack of empathy stupefying. I have strained relationships now with my in-laws. My own family are okay but they know me a little better, I suspect. I have no impulse control, so if something is about to leave my mouth, my brain hasn’t diplomatically worked out if the response is apt to the situation. I have become more misanthropic because of this, but purposefully so. Cutting myself away from triggers, and focussing on myself.

Having a stroke makes one tend to be selfish. That’s a survival mechanism that is embedded within our statutory evolutionary right. Especially, if it concerns the very thing that makes us who we are, the brain. Undamaged brains think in a linear fashion, damaged brains are non-linear. Where they may go is where they may go because, medically, the information loops are being re-routed. It’s just scientific fact. We can’t escape that.

Some sort of grounding needs to occur with every deviation from what other “minds” expect. As I have had a stroke, does that make me sane or insane? I can be insane because my brain isn’t operating as par what other people expect, but it is a force majeure. I am not in control of my faculties. True. I can’t. I can’t remember what I can’t remember, I can’t. Tabla rasa. This is inconceivable to an undamaged brain.

We hear it time and time again, every stroke is different. Some people suffer no cognitive disruption in the sense of their mood, temper, feelings, impulses, whatever. But, some of us do, quite significantly, or there are stroke survivors who don’t equate their cognitive feeling and emotion changes to what is happening in their lives. Many feel that they are more eccentric after stroke, this is eccentricity but it is a cognitive shift in dealing with the outside world. Because the outside world has its own ethos, and suddenly we’re not subscribed to that as we were pre-stroke. Honestly @pmylrea, the first step is being aware, which you are, the next steps are assessing that awareness, and making sense of it. Yes, a bit of mindfulness and CBT will help but, ultimately, it’s a work in progress for some of us.

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Morning @pmylrea. Thank you for sharing these thoughts. It really helps knowing that I am not alone. My relationships with others have definitely changed. I find myself getting disappointed and ultimately angry when I am struggling and having to go through the process of acceptance that I have to get others to do the same. They hope and therefore believe that somehow I will get better/ back to prestroke and I then have to battle that too. I have lost touch with some people as they just don’t know how to react, and I can’t blame them. They message and ask how I’m doing, I reply truthfully and frankly as I don’t want them to be shocked and upset if they do meet me ( I’ve experienced both already) and I never get a reply/hear from them again. It is difficult for them. Coupled with that the off switch for my emotions which was always firmly off when I was in company, doesn’t exist anymore. I had a hospital appointment this week and at one point I said to the bewildered optician- I just want to attend a hospital appointment without crying as I sat there sobbing.
I wish I had a solution but it’s just something I have to work through everyday. Keeping busy, finding purpose, seeking out things that give me pleasure. Thank you again for your post, Julia

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Julia H, Rups, Mahoney - Thank you is not enough to express the comfort of feeling understood. To not be alone is a relief. The honesty of your responses makes your advice all the more powerful and uplifting. There’s so much for me to reflect on and draw on in these replies. There are so many things I feel like writing on the walls. “Damaged brains are non-linear”. How true, how true. Thank you for responding. Thank you for your empathy. Good luck, be strong and keep sharing. What I feel is like the last line of a Samuel Beckett novel: “I can’t go on. I must g on. I’ll go on.” I will go on thinking of everything you have said

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Hi @pmylrea , good post and very relatable. Relationships & understanding from “normal” people is a difficult one for both parties. We may have changed but they need to understand that this change is also causing us stress as we don’t want to be different. I don’t have an answer to the conundrum other than to say that for me things improved with time and now 12 months post stroke my family and me are in a very good place. Sure there are times when they forget I can’t do what I used to but generally it is much better.
I hope things improve for you.
Would it be worth you showing some of the replies from us to your family so they can see it’s not just you that has this to deal with?
Good luck and chin up!

Thanks Ingo66. Again, hugely helpful. And I was wondering about showing my wife some of these. If people don’t mind, I will take a selection and show her. I feel more hopeful after reading these - so thankyou. I will keep going!

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I’m sure that would be a good idea. I sometimes do it when my wife asks why I’m so engrossed in my phone. I explain to her how I find it thereputic to read and respond to people on here. I’ve shown her a few of the threads and I think it is a good way for her to see others have similar predicaments.

Hi Been there and after 18months definitely getting better now just down to a bit off bickering which I’m working hard on. When fresh out of hospital told by OT’s and given pamphlets to reinforce it, to expect emotional and angry outbursts and bit of swearing always did a bit of latter but very rarely former. All three came and thankfully went , found early on I had to wander off and have a good rant outdoors, swearing, go to another room. Occasionally emotions take me by surprise even now. One of the Lucky ones, partner gives wonderful support and realising the impact it has had on her,try to stay constantly aware of my extra failings being stroked has brought about. Great believer in Awareness of all things the key to life. Pds

Google ‘A letter from your brain’ and show your wife that as well. It is a very good explanation of how it feels to have a brain injury.
Janet

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@Janetb I’ve just googled a letter from your brain. It sums it up well. Made me a little emotional but very worth reading it.

Stroke certainly affected my personality and my wife has been extremely forebear Ing and accepted I judge mood and conversation different ly than before it is the joy of stroke, bit by bit I am becoming me again after 15 months conversation s are more focused and less techy do the brain rewiring is happening but so slowly. Good luck and keep the faith that you are who you were it is just a horrible long slogg to get back.

Yes, i feel the same after my 4 strokes. i was a fitness instructor and Martial arts instructor So i hate the thought along with a constant reminder that i have had these strokes and yes I do feel like a ‘‘victim’’ Regularly some days are worse than others. I have now reached the conclusion that i dont really care what happens to me any more. as i do feel like a bitter and twisted old man!
I dont remember anything from childhood to our wedding day, our daughter being born , her growing up ,last month, some days i dont even remember yesterday!. I know I have built 4 houses since my first stroke, and yet it now take me over 3 hours to assemble a flat pack coffee table!!! I ve had counselling and various therapies, but they cant help me get my memory’s back or to accept i ve been cheated or as they put it “dealt a bad card in life!” I have a long suffering excellent wife who has stood next to me all the way thru this “crap journey of life” and wiped many of my tears away even now i cry about my life i cant remember.
Due to the government ( I was never entitled to any benefits!) I am now working harder than ever before as I cant afford to retire despite planning to retire at 40, I should have paid our mortgage off instead of saving it for a rainy day! I have just found out I have a further 20- 25 years to retirement. I struggle to work now with my brain not thinking logically or remembering anythings along with my various bodily weaknesses. sorry buddy. I know this isnt the answer you was looking for, but its how i have been feeling for almost 20 years now and nobody can help me !.
Neil

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Hamesle83 and mrfrederickson… Thankyou. Each reply is a gift, and cuts my worries and confusion by your sharing. Hamesle73, I am sorry about your future 25 years of work. I was amazingly fortunate to be so close to retirement that the strokes made no difference to that. I do miss work, though, and I was never planning to retire in the classic sense, so I have had to give up all my plans. In fact, I started to a bit of the stuff I had planned (advising, some freelance) and I had a fit, so was told to stop. So, I sympathise Unlike both of you, my family relationships - particularly with my wife - have become strained. It’s not because they are impatient or unsympathetic. It’s just dealing with the change, and with me after the change. Of course, I feel I haven’t changed that much. It’s hard to see yourself from outside when it’s your own brain that’s damaged. But it is me, it is you, just at a different stage of life - at least that’s what I tell myself. “Keep the faith” - I think I will have a wristband or maybe my first tattoo with that on it. And there are people who can help. Just sharing helps - I have a group I talk to via Zoom every week. All had strokes and we met in a rehabilitation class. It’s not all gloom. We laugh, we joke, there is much mickey taking - as well as the occasional talk about what we’re feeling and where we are medically. So, hang in there. You’re definitely not alone.

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Dear Lord, please release this dear man from the burden of despair that he has been carrying. Let him know he is not alone, that you care for him and love him and long for him to know you and trust you.
Thank you for being the one who listens and whose every heartbeat beats for those who don’t yet know you. Bring this man your peace and let him know your love. Amen
Since having a stroke, my husband Frank has been taking anti depressants and his mood has changed for the better, maybe you can talk to your GP about getting an antidepressant . because my husband and i used to fight like cat and dog but when he had the antidepressant it changed, I just hope this helps Stacey Timms wife of Stroke Survivor Francis Timms

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Thanks so much for your very honest, heartfelt post!

There is no doubt that many people find that their personality has changed post-stroke. Many, in fact, don’t even like the person they have now become. This raises the issue of learning to love the new you, warts and all, an important step for the individual. It also, though, recognises that friends and relatives need to learn to love the new you too! None of us were perfect before the stroke, so adjustments and accommodations were necessary in relationships then too. Adjusting to the new person is quite a shift, and therefore needs patience, understanding and time. I found, for example, that I became extremely self-focused after the stroke in an effort to get back to a degree of fitness. I failed, at that time, to recognise the impact that this was all having on the ‘carer’ in the household. I am pleased to say that the grace we find in our shared faith has been a tremendous help in this.

Very best wishes in your recovery, healing and reconciliation processes.

Stacey_Timms and Stewart1. Again, thankyou for the time you have spent replying and yoour kind words. They do help. Stacey, I have just come off antidepressants. I was on them, came off, went back on and have now come off them. I felt drowsy, muffled and my brain was less active. Did it help? In some ways. It certainly helped. But there comes a time… It is interesting that the specialist who treated me (and saved my life) is doing a trial of the impact of sports activity versus anti-depressants. I swim in cold water every day and find it helps. And Stewart, yours are wise wrds that I shall try to follow. Hue thanks to both of you. It does wonders not to feel alone…

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