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!