Mother's 2 year-journey after brain bleed stroke

Dear All,

I am joining this forum as way to feel connected to my mother who recently died from complications related to her stroke.

I want to share her story, as a way to help others understand the complexities and difficulties of post-stroke life. Three years ago, I would have never imagined that my father and I would end up becoming full-time carers for my mother (very healthy all of her life).

Here we go:

My mother had a spontaneous brain bleed stroke 2 years ago, caused by low platelets (very rare kind of stroke). It was a 15-17 on the stroke severity scale. They told it was a moderate-severe stroke (3.5/5, or something like that).

My mother was paralyzed on her right side, had pretty severe aphasia and cried pretty much non-stop. She was an emotional wreck. She knew everyone and seemed to have her memory intact for the most part, despite being barely able to talk but a few words here and there. We were all devastated to see her in this condition.

She finally went to a rehab hospital for 5 or 6 weeks with little progress, other than her speech really started to come back strong. Her memory was excellent, but her emotional state was no better. We then took her home and she continued to have physiotherapy for 2-3 months. My Dad and I worked with her zealously in the meantime. Finally, about 5-6 months after her stroke, she was able to walk almost like a normal person. Her hand still had some weakness, but she was able to write decently and pick up things quite well (balance and reflexes were perfect). But her emotional state was just awful. She obsessed on temperature for hours; she was an insomniac at night; she was becoming more and more apathetic; she bickered with my father over nothing for hours; she made accusations that Dad was going to leave her and put her in a nursing home (jealously delusions).

Fast forward to the beginning of the second year: My mother is now 90% recovered physically from the stroke. She walks and goes up steps like a normal person, without even needing to hold onto the railing. Her affected arm is super strong, and she can do most things with it. There remains just a little bit of weakness in her fingers. Another fascinating point: she has no tingling sensations in her leg at all - only a little bit in her fingers of the affected of the hand. I tried to have her walk as fast as possible between the kitchen and living room in our big house, and she did marvelously (faster than most 71 year-olds).

However, that is where the party stops. Although my mother was doing so well physically, her mental and emotional state were declining. She became more and more non-caring about everything. She only wanted to eat, people-watch and look at her smartphone a bit (becoming less and less). At night, she’d sleep 1 hour, if lucky., and pace and pace all throughout the house.

Cognitively, she was rather sharp, as she could play Solitaire, but only for 10 minutes or so because her attention span was very, very bad. She would do her best to put on a face for strangers and extended family, where she’d be around 70% her old self. But let me tell you - it took a lot of energy out of her to try to be her best self in front of others.

As time went on, she got worse and worse emotionally. She started to become very, very irrational: she didn’t want to wash her hair like she would normally want to, and she refused to take her contact lenses out at night and soak them. We didn’t know what to do with her. They told us she had no vascular dementia, or dementia of any sort. We couldn’t take her anywhere, other than people-watch at an ice-cream shop (she stayed in car). That was the only thing that calmed her down. She gave off the most terrible nervous energy. She was wired 24/7, almost. No medicines helped her - they just made her worse. She’d adjust the thermostat about 30 times a night, and sometimes go to the bathroom at least 20 times a night for “something to do”, while dragging my poor father with her.

My Dad and I rarely slept at night. It was awful. We were at the end of the road with her. She was regressing day by day, week by week. She clearly gave up on life, and told us she just wanted to die. She said she was old now, and there was nothing more for her to do. I did everything to help her, but her mental state was too far gone. Not only that - she was stubborn beyond anything imaginable. We were told that she may have had post-traumatic stress disorder. They thought some of her issues were not so much from brain damage, but from her traumatic reaction to the stroke. They say you go into a stroke with your current mental state, so, often times, a person’s negative traits before a stroke are amplified X 10. Who knows? But that did seem the case with my dear mother.

Towards the end of the second year, my father and I didn’t know how we were going to continue caring for her 24/7. Sadly, she ended up having 2 massive seizures, leaving her with even more mental issues. The seizures led to an infection, which then led to sepsis, from which she died a few days later. They were not sure if the seizures were induced from the scar tissue from her brain bleed two years earlier. We never got any answers. They said that seizure from strokes usually happen straight after a stroke, or less than 1 year after. Again, who knows?

Well, it’s been a few months since her death, and we really don’t know why she declined so badly emotionally and mentally after her stroke. We were told that her impressive physical recovery was probably because her stroke was not massive; it was moderate-severe. At any rate, it surely affected her mind in ways unimaginable. She suffered in her mind like no other. I just don’t know what more we could have done. I just could not get her to do anything anymore, other than walk. She had the ability to cook and clean a little, etc. but she flat-out refused. She didn’t even want to talk on the phone anymore to her grandchildren or her siblings. No television, either. She just sat and stared with a blank look, or fussed to the point of madness over temperature, going to the bathroom. So very sad.

She became a different person these past years. We had to accept the new her, and we did. We only wanted her to sleep better and be a bit happier, but we couldn’t even do that. Her attention span would not allow her to stay focused long enough. They did tell us, too, that her older age was against her. Once you’re in your 70s, stroke recovery becomes even more challenging, as if it’s not challenging enough.

I wish all of you the best in your recoveries, but do know that some people never can recover their bodies or minds after a stroke. Be most grateful for any gains you make. And as you all know too well - there’s way more to a stroke than recovering physically, too, as was the case with my mother.

If I can help anyone on here with encouragement, tips, etc, please let me know.

I am very sad about what the stroke did to my mother. It took everything from her. It took her dignity and life. May she rest in peace.

God bless you all!


@Matthew1798 welcome & thank you for sharing your mums story. Of course yours & your dads story too.

I think stroke can often affect people’s mental health far more than anyone realises. I think you saw that first hand with your mum. I hear many people say that although they look fine on the outside on the inside is a whole different matter.

It sounds like your mum had 2 very loving people caring for her doing their absolute best despite how difficult it must have been for you too. Stroke doesn’t just affected the stroke survivor it impacts their loved ones too.

Sending my very best wishes to you & your dad.

Ann x


Thank you, Ann.

I am grateful for your response.

Yes, my Dad and I went to the ends of the earth to help my mother. It hurts to know how much we did for her, but to no avail We loved her more than life itself. We are very happy that we kept her out of a nursing home.

You are right: stroke victims may regain their physical abilities very well, but, inside, they can be a very different person, and no one knows to what extent, except the 24/7 caregivers, and even they might not know the whole story. My father and I knew she became a different person and was hurting deeply in her mind, but we could not help her. We tried everything. I cry every day thinking I could have done more, but I don’t know what we could have done differently for her. She was a mess. She just paced and paced all the time. God love her! I don’t know how she lived the way she was living. for two years. She was really losing her mind in the second year, almost like a dementia patient, even though they swore it was just the stroke + PTSD. The stroke took her modesty and dignity from her, and it took her life, too. Very unfair, but that’s life.

We never got very much info about her mental effects of stroke - it was all about physical recovery + speech.

She died right when my father and I were wondering how we were going to continue caring for her 24/7 since her mental state even worsened after the seizures. They said there was no brain damage seen in the scans, but I know that seizures can worsen a stroke patient’s mental state.

At any rate, it’s all over, and has been for several months. Her older age was always against her, too. They told us that over and over again. I don’t know if my mother’s weak mental state before the stroke worsened her mental state after the stroke. Who knows? Everything’s just a guessing game.

Please take care, and thank you again for reaching out.


Wow, you did your mother proud as your dad did his wife proud too. You both must care for her deeply to make the remainder of her life as good as it could be. She was truly loved and she knew it because it showed in everything you both did for her and the sacrifice you both must have made. She may very well have been aware of what she was doing or not doing but would have had no control of it. The brain seems to take over and do what it thinks in necessary regardless of the person wishes, I’ve had a taste of that. Just sitting and staring off despite the fact I actually want to be up doing something. All in that past now thankfully and I refuse to dwell on the future of that.

Finally she is at peace and now it’s time for you both to take a breather while you reassess your futures. Maybe take a holiday, time grieve, time to take stock and some time to just be.

Thank you for sharing your mother’s story, God bless you both!


@Matthew1798 it sounds to me like you & your dad did everything you could & more for your mum. Try not to beat yourselves up. You really couldn’t have done any more. Maybe you xan take a little comfort from her now being at peace. She must have been finding it all so difficult too.

Take good care of yourselves.



We are going to start traveling in the next month or two. We have all this freedom now - like two birds out of a cage, but we have the burden of severe grief, so…

Yes, we are grieving her every minute of every day. But, honestly, we’ve been grieving ever since she had the stroke because she was never the same person again. We really did get used to her not being the same anymore. We accepted it after two years; we only wanted her to be a bit happier and bit more independent, and sleep at least 2 or 3 hours a night. Sadly, none of those things came to pass.

It is what it is. We would never want her back in the condition she was in. It was torture for her.

I will be remaining on this forum as it makes me feel closer to my mother. All stroke patients have a special place in my heart.


Sorry for your loss

You’ve had a long and obviously painful journey. I’m sure your mum would have liked to think of your dad & you enjoying travels together

Maybe as the pain of recent challenges and loss gives way to the warmth of nostalgic recollection maybe you’ll think of ways to use the experience you’ve gained?



I am sorry for your loss. Reading your story only reinforces how grateful i am to be in the position i am in now 8 months after my stroke. You and dad did your mum proud. I hope that you are able to enjoy travelling together


Thank you all for your kind messages. I am grateful.

Strokes are very complex, as you all well know.

My mother couldn’t put the pieces of the puzzles back together in her mind. The worst part of her mind was her apathy (not caring), the giving up, etc.


Oh so sad,bless your have been so brave,kind,caring, couldn’t have done anymore. What a shame for you’s frustrating not to get a straightforward anwer to the why’s and what ifs but it sounds as tho your mum was looked into and it’s just one of those things that will never be found least you know you did what you could…i think you maybe right in saying that any negative thoughts or mental issues are exacerbated by a stroke,i have had to try not to get too down about my stroke but some days i just cry for no reason and dont wash,dress,do anything but the next day or two i make myself do it otherwise I’ll be on a slippery slope going downhill.i was 52 though so alot younger maybe age didnt help as well.
I can’t help you other than to offer my condolences and wish a brighter future for you and dad and you have to make the most of everyday now and know you did your best for mum and she wouldn’t want you to be sad i’m sure.all my best wishes and a hug to you both.Bernadette x


Thank you for your heartfelt reply. Very grateful.

Yes, I think being in your 70’s makes things even more difficult for stroke patients.

After 2 years, you accept the idea that the old person is never coming back. We accepted her as she was, only that we wanted her to sleep better, be a bit more independent, and enjoy a few more things. Well, we never got that. She had the ability to do quite a few things (cook, light cleaning, games, take nice walks, etc.) - she just refused, even though she recovered physically almost perfectly over time. Just the way it was. We knew that things were very much deteriorating when she didn’t want to bathe anymore and take her contact lenses out at night to soak. She started to get really irrational about some things. Oh well…

I just need to talk about it. When we were in the throes of taking care of her, we never had a chance to really process our feelings. You never understand things when you’re in the moment. It’s only in hindsight that we see things more clearly, I believe.

Best of luck to you in your stroke recovery, Bernadette. You can do it!

Thank you all so much for listening.


I found your story so honest and such a tribute to your love and humanity. I just felt so sad reading it your mother was trapped in her mind which had become uncontrollable and there was nothing she could do. As a fellow stroke recoverer, or trying to, my worst problems are mental and these are the most difficult to explain to ones carers. The carers also bear the brunt of the frustration as there is nobody else to vent to. I am also old and whilst my problems seem nothing like as sad as your Mum’s were, she has escaped now and died knowing how much she was loved. I would unhesitatingly push an exit button were one available as everything is so exhausting and hope has long been extinguished by the reality that things are unlikely to get better even if I manage to improve in some areas. Knowing this is perhaps an inappropriate comment on this forum I make it because we need to think about this issue. Whilst physical health is vital, mental health is what we are as people and decision making shouldn’t be
removed just because we con’t function physically.
I am in my second year of recovery now and frankly exhausted with the roller coaster I am riding. Had a lovely day out yesterday and am looking forward to the family visiting next week, lots of silver linings ahead but this morning my leg, which usually works, I got my walking back quite quickly, hurts all along the calf muscle. What new indignity is this…the one step forward and two back pattern again. And YES do keep a journal as things are so much better than they were and that is a comfort. My best wishes to everyone travelling this unexpected and unwanted path and remember you are not alone. AnaV


Thank you for your lovely message.

I didn’t want to tell my story at first as I didn’t want to sound discouraging to the people on here trying so, so hard every day to get better from their strokes. But, something in me says that we do have to share the realities of post-stroke life, even though they can be painful to hear. Every one is different – so please remember that.

While stroke patients share many things in common, each person has a unique set of problems, feelings, struggles, etc.

I’m not really sure what happened to my mother. I suppose it was a mix of brain damage and PTSD. I just don’t know. It is just very bizarre how well she recovered physically after about 7 or 8 months. I mean - she walked like normal person; in fact better than a lot of people her own age who never had a stroke. Her hand was all back, too, except for a little weakness in her fingers and hand. She could talk like she always talked; her memory was fantastic; she could play Solitaire; she wrote almost perfectly; could read, spell and punctuate perfectly… It all doesn’t make sense. The stroke just happened to affect her emotions in a very profound way: the OCD, preserveration, pacing, poor attention span, insomnia, severe apathy, fears my father would divorce her and put her in a care home (so painful), and irrational thinking in her final 7 months or so, etc. Just unreal.

At any rate, it is what it is. I just hope other stroke patients never have happen what happened to her. A lot of people still don’t understand that stroke recovery goes way beyond memory recovery and regaining your ability to walk, talk, and use your affected hand.

I am sincerely wishing you the best. While you think you’ve reached the maximum in your recovery, there is always hope that things may get a better somehow for you.

Take good care.


Hi. Just read your text about you and your poor Mom’s stroke. So awfully sad. I lost my Mom following a stroke. That was awful but I didn’t have two years of hell before she passed. Having now had a stroke myself, I pray to God that he takes me quickly too if I ever become so poorly. Fortunately, for the moment, I’m doing ok a year post stroke.

You and your father did an amazing job for your Mom. Hope you can remember the good times.

Bless you.



Thank you for your sympathy.

I just don’t know what happened, Cynthia, with my mother. I don’t know how she got so mentally ill after the stroke. We think it was a combination of brain damage, PTSD, and natural anxious personality going into it all. Who knows? She recovered so well physically for a 71 year-old. Her emotional mind, though, was gone (her memory and speech were excellent, though). She didn’t know “how to be” anymore. And her apathy was beyond belief. It wasn’t her fault. I can analyze it over and over again, but I have no real answers. All I know is, is that she had a brain bleed stroke (moderate-severe), and she was never the same again (she just got worse and worse over time).

Yes, your mother didn’t linger for 2 years, but, it is good that she didn’t suffer for a long time like many stroke patients do. My mother had no pain, or tingling, or anything after 5 or 6 months - she just was terribly mentally ill.

I am glad to know that you are doing okay, which is way better than doing badly, right? Don’t give up and stay strong for me! I know how hard it is to live life after a stroke. It takes courage and strength like nothing else.

Best of luck to you!

Bless you, too



Hi Anav.

Just read your message. I was sorry to learn about your struggles and totally agree that mental health is a big issue following a stroke.

I believe my mental issues and stress were part of reason for my stroke in the first place. I since have had counselling with relation to my stroke.

I think the counselling did help but also paid privately for hypnotherapy and found that more beneficial.

I hope you accept any help offered. It’s good to talk, write and even find hobbies. There’s definitely hope when you manage to enjoy seeing family and look forward to forthcoming events.

Be kind and patient with yourself.

Best wishes