Husband had a TIA Sroke in April of 2024 - As his wife I am struggling and fee so guilty

Hello,

This si my first time here and every posting in a forum. My husband had a stroke in April of 2024. If you saw him you would never know. It affected his memory, finding words and most definitely his personality. We celebrate our 30th wedding anniversary this year. I hate feeling the way that I feel but most of the time I feel like I am married to a stranger and living with a roommate. There is no emotional connection anymore. He seems happiest to me when he is alone, scrolling on his Ipad, watching a tv show and maybe having a few beers on the weekend. I have tried so hard to encourage him to take an interest in anything that can help him and his recovery on a daily basis. We have two daughters in their 20’s. One of them sees a lot of what has happened with his personality the other one does not. Up until a few months ago I was handling it all pretty well. Now I seems to struggle more and really miss who we were before. He does not seem to miss or maybe he does not really know what is missing from before. How do other spouses deal? I hate feeling this way and again I feel like an awful person as I sit here typing these words. Any advice is appreciated. Thank you.

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Might be worth you joining in the Different Strokes Charity Zoom meeting for carers. There’s actually one tomorrow (27 Aug) at 2.30pm

Find out more, and how to join, here: https://differentstrokes.co.uk/virtual-meetings-for-carers/

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Hi @khkimbelry sorry to hear of your husband’s stroke and the struggles you are facing. Welcome to our community and I hope you will find this a useful place to be. Firstly I think you would benefit from speaking to other carers and the link @pamelai1 has given you is definitely a good start. There are lots of carers on here, who I’m sure will be along shortly to offer some words of wisdom and advice.

I am on here as a stroke survivor so I can’t imagine how you are feeling but my husband is my full-time carer, whilst working part-time. I’m sure he would say that I’ve changed in some ways. Be kind and be patient with each other and I’m sure you will find your way in this minefield that is stroke recovery.

Please don’t feel guilty, this so tough on everyone around you. I know my husband and our 3 grown up children were a great support for each other following my stroke 8 years ago.

Is there a stroke survivors support group local to you ? We attended a weekly support group in the early days of my recovery. Some people came alone as stroke survivors and some with their partners or carers and we both found it very helpful and informative.

We find that it helps both of us to both take a bit of time out regularly. My husband tries to get out and meet up with friends for a game of golf or a pint and a catch-up and I meet up with friends for a meal out or a coffee and it’s beneficial for both of us and we also do lots together even if it’s only a trip to the supermarket and a coffee, which also serves as good exercise for me.

Hang on in there and I’m sure with your love and support your husband will settle down and things will slowly improve.

Regards Sue

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Hello and welcome to the forum. I am a stroke survivor, and I do recognise much of what you have written. I felt many changes when I had my stroke almost two years ago. Some of the changes you become aware of, but many happen over time. Thinking simply the brain has had rather a bashing and it does take a little time to readjust. None of us can say that things will go back to normal, in fact they might not ever be back to the man you married 30 years ago. Other colleagues have shared with you how they begin to work through all the things that creep up on us.
All I can say is that I noticed many things and was also reminded of others by my hubby. In the beginning I was very fearful about ‘what I had lost’, but now I have worked through and have found different coping mechanisms. Life is a bit more bearable and every day brings a little more determination to make the best of what I have now.
I too feel guilty when I rant and rage at things that aren’t right for me. But this is frustration on my part, and I do make sure my husband knows that. It’s not him I’m raging at, but this darned stroke that has intruded into our happy life.
I do hope that you can heed Pamela’s and MrsK suggestions at ensuring that you have a break to offload some of your anxieties and perhaps take time out with your friends. Could you find a carers group locally? But maybe your medical centre can offer something like that? Please do use the site as much as you can, we are all here to listen and support. Very best wishes. Norma

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Thank you so much for taking the time to respond. It’s encouraging to hear the perspective from a stroke survivor. I wish I had found this site a while back and I will definitely be leaning on it.

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Norma - thank you so much for your encouragement. It means a lot that you took time out to respond back to me. I think I have held a lot of things in instead of sharing it with him because of the guilt I feel. I feel like I will make him sad, or it will set him back. I frustrated right now because I am trying to do things and encourage him to find ways to help himself, but he does not seem to be motivated. It’s almost like he just wants to be and expects me to just adjust and change. Of course I have made some changes including a lot of patience, but I am still who i have always been. Not sure this makes sense. Just worried that has time goes on if he is not wanting to try to get better or works on things that we are going to have a rough time. Again, thanks for listening!

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Hello @khkimbelry - Welcome to the community where I hope you will be able to get some help to understand what is happening and what you can do about it.

I might not be the best person to help here as I am not a spouse, but I am a carer and I have some understanding of the roller coaster of emotions we go through.

With regards to guilt, you should not at all feel guilty This is nothing something you created nor are you responsible for how it is panning out. You have nothing to feel guilty about, rather you should feel pride for standing by your man. What you are doing is not at all easy and speaking for myself, I can categorically state that being a carer is the hardest thing I have ever had to do.

I would like to suggest a few things for you to try to see if you can understand where exactly your husband is in terms of his recovery from the TIA stroke which was over a year ago.

  1. Sit down with your daughters and see if you can agree as to where your husband is at

  2. Sit down and talk to your husband to see if you can figure out if he remembers you and your daughters or anything about himself.

You say he happy scrolling on his iPad, watching TV and drinking beer - is this his old self or is this a new side to him?

  1. Is he able to look after himself or does he rely on others?

  2. How does he engage with others? Does he respond to his daughters, his friends, the doctors etc?

  3. Does your husband know what has happened to him and if so does he accept it and wants to improve or does he “feel sorry for himself” not wanting to do anything?

  4. What help/advice are you getting as a carer?

If you are the main carer and are struggling on your own, you should try to get some respite and give yourself a break. You must not struggle on your own and you must look after yourself as what you do as a carer should not have a detrimental effect on you. There is always help available.

Do not hold back your emotions and do not feel guilt.

Sometimes if my Mum decides to be “silly” I let her know it is not acceptable and I should not be taken for granted. These things happen in non-stroke environments and we deal with them ad it is no different

I will say to Mum, do you want to be helped or not? If she decides she wants to be silly, I make it clear, I will not stand around wasting my time, but if she wants to be helped I will help her. Because her brain is affected by the stroke, it takes a few moments extra to register, but she gets it and will accept she needs to change her behaviour e.g. be patient and wait until she can get help etc.

Are you able to talk Frankly with your husband?

I will finish by saying for us, it is the family unit that pulls us through and keeps us sane. You and daughters perhaps should sit down and see if you can agree on what your husband and their father needs in terms of help and then how it can be provided.

Feeling guilty or struggling on will not solve the issue - it needs to be addressed head on.

For us, it has been “easy” as Mum has made it clear from the start (and before she had the stroke) how she wanted to live the rest of her life. Since the stroke, she has been heavily hampered but her determination to do the best she can and accept the help she gets and her gratitude is what has kept her and us sane in this extremely mad, mad, mad world we live in.

Wishing you all the best.

Namaste|
:pray:

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Hello @khkimbelry,

I don’t know where to begin, but I do know it’s the couple who are going through it NOT only the stroke survivor. That being said, my wife is all about the emotions but me I’ve been learning to speak again, learning to walk again, learning how to smile again…..I’m not cut off from emotions but it needs to take a back seat for a while, while I’m focused on breathing, my personality is changed or just slow, etc.

None of us is wrong, but what my wife feels is THAT important, I stopped and listened to her and then changed my perspective not my angle. Whereas, my view is that my personality has change, while my wife says it’s not. Change the angle, it is irrelevant. Looking for a job (my view). Exercising the leg (wife’s view). Change the angle, it is irrelevant. Not petty grudges when the real emotion stands tall.

My point overall is, do I love her? Does she love me? In love with us?

Yes is the answer for us.

Maybe start with that?

M

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@khkimbelry hi & welcome to the community.

Please don’t feel guilty for saying how you feel. Stroke affects everyone not just the person who has had the stroke.

I am a stroke survivor not a carer but I think in the first year or more you are so busy trying to fet your life back that you sometimes forget about the other person. Also, being a carer does change a relationship a bit. I found it difficult to talk to my husband as he isn’t a talker so I wrote him a poem explaining how I felt & how I saw it had affected him. He read that and took it all in.

I also encouraged him to talk to his mates who weren’t impacted by my stroke & he came back full of info that I had already told him but he took it better from them.

I agree that you should try talking to your husband. He may be oblivious to how you feel. This isn’t always easy. Maybe your daughter’s can help there.

I think I have gone off on a tangent so I’ll stop there but please come back and offload if you need to.

Best wishes

Ann

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Just wondering how you are today? I see my esteemed colleagues have all offered different perspectives and strategies. I hope you can find some solace in those. Most of all try not to feel ‘guilty’. Talking is the best therapy and you may have to go over the point several times, but in time you both will see a way through. Remember though that we are here. Best wishes Norma

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Thank you so much for your reply. I at least feel like I am not alone and a little more validated.

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My husband of almost 30 years tends to just ask me “how am I doing” he probably asks this question around 20 times a day. But I am not so sure it really matters what my response is back. When I express my frustrations, he seems to listen but after that conversation things just go back to the same. I am a pretty strong person. I think I am just missing who we were before so much. I do appreciate every word I received back from you guys. No one around me seems to understand and it’s not their fault. Thank you

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That’s so natural to miss how you were previosuly. It’s really tough. I wonder if tye stroke has affected his emotions and concentration / info processing skills. If so, it may take a little while yet for it to improve. My concentration took almost 3 years before it started to improve enough for me to stay focused on much.

Sending you strength.

Ann

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Thank you, Matt., We both love one another and always will. I like your wife miss the emotions, but I just miss him being my guy my rock. I lost my dad two years before my husband’s stroke. In some ways it feels like I have lost both of them if that makes any sense. I think maybe I am just in a rut, and I know myself I will pull out of it. It just feels lonely sometimes and that I am doing all the worrying. That is something I do to myself though. OK I better to get to work. I could probably just keep on typing. Again, thank you for your response it is appreciated!

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Hi Ann

Yes, his stroke affected all of those. April will be two years. We have some Doctors tell us he may still improve while others say he may not it’s so frustrating as I am sure you know. Was there anything specific that helped you. Did you struggle with connection to those around you? I feel like he mostly rather just be left alone but sometimes he wants us round just not talking or making too much noise.

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Despite what the drs say there is still a chance of further improvement. It slows down but doesn’t stop.

I didn’t have trouble connecting with people but I did find conversation exhausting (&still do if it goes on too long). Even just listening to people stimulates the brain & it can’t always cope with that. Also, nosie was a big thing for me. I just couldn’t cope with it. I still struggle so have invested in some loop earplugs to quiten the noise which do help.

Have a look at this leaflet which might help explain some of it.

https://www.stroke.org.uk/resources/emotional-changes-after-stroke

Ann

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Hi @khkimbelry,

Thank you for opening up and sharing what you’ve been going through. It sounds like a lot has change since your husband’s stroke, and that kind of shift can be overwhelming. You’re clearly doing your best to navigate a really difficult situation, and it’s good to see you’ve had some excellent support from others here already.

You might also find our Here for You service helpful. Its a service where we match you with a trained volunteer who has had similar experiences to you and understands what you’re going through. They will give you a weekly call just to chat, listen, and offer support. It’s completely free, and you can sign up here: Weekly Volunteer Calls | Stroke Association

If you’d rather talk to someone sooner, our Stroke Support Helpline is always here too, call us on 0303 3033 100 or email at helpline@stroke.org.uk.

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@khkimbelry Your husband feels safe when it is only the two of you. I understand because I feel the same when it is only me \and my wife who I have been with for 20 years. I also feel same when I am with my daughters or my 5 grandchildren. But no longer feel same in crowds or with people I do not know. In fact when we go out I cannot wait to go back. I wish you well for the future. Have you tried talking to your GP about how you miss the closeness and the way you both used to be. I wouldn’t recommend it but some people do have a good GP. Your husband is fortunate you are by his side. :smiling_face_with_three_hearts: :smiling_face_with_three_hearts: :smiling_face_with_three_hearts:

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Hi @khkimbelry welcome to the forum. Time and patience are truly a great healer, particularly after a stroke. Recovery takes years and then some and there’s still plenty of time for all this to switch back on, for the man you love to return to some semblance of normal. Mine has, ok, I’m still a bit of a work in progress, but I’m now out and about doing things both with my hubby and family and on my own, independently. Your hubby will get there too, his brain is in charge now and can’t be pushed, I know this 'cos I’ve tried :sweat_smile: He may even want to really do certain things but his is holding him back. Be patient because he still can only do things in small bites, still get fatigued

That’s the result of his stroke, the brain damage affecting his emotional control centres, they’re switched off basically. All my emotions, aside from laughter, were set to neutral after my stroke 4½ years ago, couldn’t feel a thing for anything emotionally. And like your husband, mine too was diagnosed as a TIA, but I beg to differ.

Anyway, I had no feelings either way, emotionally numb, Apathetic. To such an extent that I had to fake them just for the sake of propriety, so I was at least aware of this apathy. But it was still hard work for the brain to fake emotions, so naturally, it was impossible to keep that up full time. No excitement, no anticipation, no looking forward to things, no urge for anything, no interest, no sadness, no worry, no fright, absolutely nothing. But I could laugh! I could laugh at the silliest of things and sometimes at inappropriate times too, I laughed at myself often.

I felt I was detached from myself, for want of a better way to describe it. But I was aware!
And it’s very hard to explain it, particularly so for me as I also couldn’t speak, and still have mild aphasia. But cognitive impairment and short term memory lose also played a big part in the overall effect of this detachment I felt of myself. So my life for the first year or two was very much that of a robot, full of very set routines in those early years! And yes, I would have been just fine with just sitting alone and doing nothing in particular. And I did often do just that in order to give my brain a rest.

But, as I said, I was aware this, and in a way it helped a lot two fold. A) Because I could set tasks such as my physio exercise regime and just go at it without feelings such as despondency/can’t be bother. B) Having my emotions switched off meant my stress levels were switched off, so nothing could alarm or stress me out, I didn’t get over emotional about anything. This was a great condition to be in for the healing and recovery of my brain :grinning_face_with_smiling_eyes:
I don’t know if I managed to relay any of this to my family, but my daughter is very into psychology, so between us all, they managed to figure a lot things out :slightly_smiling_face: And will always be eternally grateful to for their love, patience and tolerance and seeing me through the worst of it.

And I dare say, he doesn’t actually miss anything, if he’s anything like I was. But that is a good thing for him in his recovery. There are many on here who went the other way, so don’t knock it, it could just as easily have been a lot worse :wink:

Blood pressure medications can also calm emotions down, they help keep you on an even keel. But they can also have a negative effect libido.

I was about 18mths after the stroke that cognition switched back on for, that was quite sudden, like the flip of a light switch. The apathy, emotions, along with memory, started improving after that, but they have been more gradual. But they are a lot more switched on now, that they are really not noticeable to anyone but me . . . much like my aphasia :grin:

So hang in there, there is still a lot of hope, anything can improve any day now, or next month or 6 months from now. I know I’m still improving!

Lorraine

PS: If your hubby’s emotions are switched off, it might actually help him to read this post if he’s unaware of this part of current condition. It certainly won’t set him back in any way, but it might just help him spring forward, just knowing he’s not alone in this condition and that there is light at the end of tunnel.


Emotions feeling “switched off” after a stroke can manifest as apathy, a lack of interest or feeling, or as emotional lability, where emotions become unpredictable, overwhelming, or appear in inappropriate situations. These changes are due to brain damage affecting emotional control centers and can significantly impact a person’s well-being, but many emotional and behavioral changes tend to improve over time.

Understanding the Changes

  • Apathy:

This involves a significant decrease in motivation, interest, and emotional drive. People with apathy might feel numb or indifferent to things they once cared about.

This condition causes sudden, uncontrollable episodes of crying or laughing that are often inappropriate for the situation. While appearing emotional, the feelings expressed may not reflect the person’s true internal state.

  • Emotional Lability (Emotionalism):

A stroke can impair the ability to control emotions, leading to rapid mood swings or an inability to regulate emotional responses.

Why It Happens

  • A stroke can damage the specific parts of the brain responsible for regulating emotions and behaviors.
  • These changes can also be linked to other common effects of stroke, such as fatigue, depression, or other cognitive changes.

What You Can Do

  • Talk to your GP:

Seek professional help for persistent or distressing emotional changes.

  • Manage your activities:

Try to maintain a routine, stay active with low-impact exercises like walking or swimming, and ensure you have proper nutrition.

  • Stay connected:

Engage in social situations and activities that you enjoy to combat feelings of withdrawal and depression.

  • Seek support:

Connect with other stroke survivors and join support groups to share experiences and find reassurance.

  • Consider therapy:

Talking with a therapist or counsellor can help you develop coping strategies for managing your emotions.


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Since my husband’s stroke 10 months ago his personality, memory, speech, hearing have all been affected. That’s in addition to now having a useless right arm and leg!

He gets very depressed as he is very limited in what he can do and I therefore spend nearly all my time with him encouraging him to exercise and try things …. Not always successfully. If I do pop out to the supermarket I dash round and get home asap. I tell him if I’m going upstairs, in the garage or garden otherwise he gets anxious.

I therefore understand how you feel and how you feel guilty. i feel guilty that I can still walk and drive etc and I am so sad that he can’t and I can’t make him better.

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