How do people who have had serious strokes relate to the world?

I think it depends on what parts of the brain are affected. I do think people tend to adjust to their new reality. As the new reality sets in and the person realizes this is the rest ofntheir life, usually depression accompanies the loss. It’s a loss, a grieving process.

Most likely the older an individual is the better they handle it for several reasons. One reason is there is scietific research showing as we age our brains focus more on good than bad. Young people get hit hard psychologically by emotional and physical set backs. For me personally, I definitely am much much happier in my late 30’s amd 40’s even though I have had disappointments including physical limitations and discomfort. I am better able to appreciate the good things I have and simple things like the love I feel from my family, beautiful scenery, music.

I will say my biggest fear would to be in pain and not be able to communicate it somehow. But, I would assume your mom was still able to write and show people if something was bothering her. Even still, I would guess she was less able to participate in conversations, it must have been frutsrating. I had a friend whose father suffered a stroke that affected his speech. Hos dad and mothered had stayed with me for two months at one time, I was very close to them. When he had his stroke his therapy was to regain only hist first language and I no longer could communicate with him, and his language was still not completely regained so his family also had some trouble. He was a smart, loving man, and he became quiet and withdrawn to some extent. I feel he felt stifled and frustrated. But, they still travelled, spent lots of time with family, he still had some enjoyment I believe.

I think it is impossible to answer that question as each stroke is different and affects people in different ways. Sometimes only language is affected and though the person’s mind works as it did before they are unable to express themselves. Oliver Sachs wrote popular accounts of the experiences of stroke victims but he tended to write about the more unusual cases.

I would also like to know this right now. My mother had a brain aneurysm rupture this past March. She was lucky (I hope) to survive. I say I hope because I have no idea what’s going on in her head right now. She’s been having trouble speaking and has only said one word the past two weeks. She’s living in a nursing home right now for rehabilitation and spends half her day sleeping and the other half in a wheelchair. She’s not the person I knew a few months ago. She’s alert when she’s awake and we can tell she knows who her family is, but that’s all we’ve got right now. I wonder what’s going on in that head of hers but I have no idea.

@peridot I’m so sorry you went through this. My mom’s situation is almost exactly the same. There are days we are hopeful and days when it seems like my mom wants to give up. :(

@JLeslie I wish she could’ve/would’ve been able to write or communicate discomfort. Her big toe (on the still-feeling side) had been torn open at the horrible SNF she had to stay at for several months, and nobody cleaned or dressed it. She never indicated a problem there, and in fact fought me when I insisted that it be taken care of (this is why I did it).

I agree, @flutherother—there’s really no way to answer it precisely. I’m hoping others’ experiences might shed a little light.

@jonsblond—big, BIG hug to you! That is a lot to contend with, and the “what-if“s can drive you mad. I hope you get something from this thread as well.

@peridot Oh, I see why you are probably very upset. My grandmother had some very bad bed sores at one point, and I think she was in pain in general and didn’t point them out specifically. She was able to communicate, she was still talking, but her memory was slipping. The end was very difficult for her. I did not live hear her so I only saw her a couple days at a time, but some relatives have communicated to me how bad it was, her condition, which I didn’t even realize when I was there, and I am quite upset her last years and death were so difficult. I feel like if she had complained or spoken up more she might have been able to have it easier. I don’t know if it all a physical limitation or also psychological also. It sounds like you cared for her very much, not only emotionally, but took care of her physical well being.

I know how troubling and anxiety producing it is when it seems the health care workers are not doing there job. My sister is a nurse and there were times she would visit my grandma in the hospital, specifically after she fractured her hip, and they were not properly tending to a bed sore that was starting up (this is years before she died) and she was developing pneumonia and they had not prescribed antibiotics for her. My sister had to make sure everything happened. That is ridiculous! We were lucky to have a family member who had done that exact type of medical work.

I was in a bad accident and they never cleaned all the road rash all over my body in the ER; they missed stitching a deep cut on my elbow; they dismissed my trouble breathing as anxiety, but it was actually a small tear in my lung; all sorts of things. My husband couldn’t understand how I laid there patiently in pain for hours, I won’t bore you with the entire story. When I was inpatient my husband brought the deep cut up to the nurse’s attention on the floor, and the aides also a couple of times because it was oozing constantly and they just slapped a gauze on it and tape. I couldn’t see it really, I was not able to twist well enough in my state. He was upset about it for a couple of days, bringing it up over and over, and I was not as worried, I was so uncomfortable in general, it was just part of my pain. After I was discharged, the next day when it was still open and oozing, so now it is three, or maybe it is four days after the accident, we went to urgent care on our 8 hour drive home. The doctor there said it should have been stitched in the ER. She prescribed me an antibiotic to be on the safe side and put simple steristrips across it, and gave me some strips to take home with mel Within 24 hours my body began to mend the cut. Total incompetence at the hospital regarding that by many different medical professionals attending to me. My point is, don’t beat yourself up if you are.

I hope someone on the Q can maybe tell you their own experience to give you more information about how they were affected.

I have also thought about this a lot, since my mother suffered an aneurysm and it was such a hard battle to get her back to even walking, talking and so on. Looking back, as she lived ten years after it, I think it would have been better if she had passed on. Since there was so much brain damage. It was really tough on everyone, I suspect less tough on my mother. I sense that ones reality changes immediately as we only have the capacity to know that what we have, if that makes sense?. I see it as being a little drunk, or very drunk and the loss of certain functions, thoughts during this process. I am not sure if that makes sense?

The brain is a funny thing and can recover a lot (sometimes not so much) @jonsblond The first year is the most important in terms of recovery. Hang in there and I am sorry to hear you are going through such a tough time.

A coworker had a stroke and it really messed up his verbal communication ability. He couldn’t find the words that he wanted. He would get frustrated. He was physically okay but his speech was always affected. I’m dealing with this a bit as I just had another concussion, my third. I’ll be talking along and I’ll draw a complete blank on what the word I want next. Don’t mess with head injuries. Mine was mild compared to a stroke but it is scary.

My son had a very severe stroke 7 years ago, when he was 43. The doctors told his companion that he wouldn’t live past the week, but he started recovering right away. He was told he would never walk, but he was walking within a few weeks. He was paralyzed on his left side, but after a couple of years, he started recovering some movement. He has been able to talk since the first few days, but very slurred for awhile.

He had several years of physical therapy. He has lost a great deal of memories, which will never be recovered, but his motor skills get better and better every day. He now lives on his own, walks with a cane, and talks with a slight lisp. He does volunteer work at a broadcast station, and has started his own talent scout business.

There is a book (and a movie) called The Diving Bell and the Butterfly and it’s a true autobiography written by a man who had a severe stroke and could only communicate (and write the entire book) by blinking one eye. It’s fascinating.

Thank you all for your stories (and the book/movie reference, @keobooks ). People are so brave in the face of such adversity—and the body and mind still have mysteries our current abilities can’t comprehend.

To add to the potential reading list [especially for @jonsblond ], here’s another one: My Stroke of Insight. That helped me a bit when I read it, but as has been mentioned, it’s just one person’s very subjective experience.