Hi to all the amazing survivors! I would love to share my dad’s story as I’m looking for some hope.
He had a massive aneurysm rupture (subarachnoid hemorrhage) and stroke on Christmas Eve 22. The doctors tried to clip it for over 4 hours. They were telling us that his condition is very critical. After two weeks in a coma he finally woke up. But the moment he opened his eyes we knew: he suffered a lot of damage. Mostly his right side is affected. It has been over 7 months now and everytime I compare recovery stories I get really sad and hopeless. Because in those 7 months his severe aphasia hasn’t gotten much better. He can’t communicate and we’re not sure how much he understands of what we are saying. He’s still in a wheelchair but luckily starts to be able to stand with help. He can’t use his right hand - it’s still very stiff. Though right after occupational therapy he can open his hand.
It absolutely breaks my heart to see my dad like this. He’s been super active and lived a healthy lifestyle before it happened. He was an artist, a writer, and loved his bike. Now sometimes I don’t even know if he’s “there”. It seems like I’m talking through him. We all try to be very patient and encouraging with him, but there are days where I feel like I’m about to loose hope. I guess that’s what I’m looking for… hope.
Welcome Toninio! Thank you for sharing your Dad’s and your story. As someone who ruptured, I know how difficult it can be for our loved ones. Mine were told for 21 days that they didn’t know if I would make it or not. The stress family feels is a lot more than what the person who ruptured feels I imagine. I see a lot of hope in your story. Your Dad survived, he’s able to speak, he’s able to open his hand, he has people who love and care about him.
I believe your Dad is still there by what you describe and he is struggling with his words. He may be like me and has had all the language areas damaged. The language areas in our brain are called Broca’s, Wernicke’s and the angular gurus. He may not know his words are incorrect, he may not understand what people are saying, I certainly didn’t know for a long time, a few years. In my experience, the hardest part for me was when someone tried to give me the correct word. My brain often times would just stop trying, if it was the word I was looking for, I’d get excited and that effected my speech. If it was not the exact word I was looking for, I’d shut down, frustrated. I went to Speech Therapy three times to try to correct my speech issues. One of the things that helped a lot was music. I could remember words to a lot of my favorite songs and they helped me to relearn words and communicate a bit better. One of my ST’s taught me to use my hand as a conductor to keep the rhythm correct, eventually I learned I could just tap my finger on my thigh or tap my foot. You can learn about language areas here Speech & Language | Memory and Aging Center I’m almost ten years out from my rupture and I still have trouble with innuendos and people who give me too much information, too fast. Another thing that helps a lot to this day is if people slow down and speak in simple sentences. It’s not talking down to someone, just don’t use complex sentences. We were talking to our project manager last night about a tractor shed, it was a disaster and I couldn’t keep up with him. I said “wait, wait, wait”. BH knew immediately from experience that when I repeat words in threes I’m overloaded and took over the conversation. But for me, everything went downhill and a five minute conversation left me exhausted, confused and frustrated. We have learned it takes time for people to learn to communicate with me even to this day it seems. The good news is I am so much better than I was right after I ruptured.
Please don’t think of healing from a rupture in days, weeks, or months even. It can take years for our neurotransmitters to recreate pathways. Be patient and kind not just to your Dad but to yourself as well.
Has your Dad been released to go home or is he still in rehab?
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Thank you so much Moltroub for your reply and insights. That’s very helpful and gives me some
Hope. We did realize too that when we sing old songs to him and hold his left hand during that for the rhythm, he sometimes sings a few words too and knows the lyrics! We definitely should work with that more. Thank you!
He was in a rehab center for 3 months after rupture. Now he is in a nursing home unfortunately. We don’t have anyone to take care of him 24/7 (and don’t live nearby). But he does get ST, PT and OT several times a week. Right now we’re in the process of getting another round of rehab for him. We puzzle with him, play old children’s games (like sorry and memory), and sing songs. That seams to help a little.
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Read this Art for Stress Reduction from a Non-Artist. I found it really interesting and hopeful as well. Art and Music Therapy seems to be two things we often forget and don’t seek out. This as well Music that inspires us There’s more here on music helping than art, both are very important, just do a search on music and scroll through them. I recall one of my Psych professors always had us listen to a specific classical composer before taking a test of his. I listened to him on my way to school which was a fair drive back then. It was amazing how much it helped the left hemisphere. He was using us as subjects and initially we took a test without listening, a few weeks later he started having us listen to the composer, who I don’t recall, everyone’s grades improved.
Maybe when he can hold a crayon, he can color with you. Remember every little thing helps and is a good thing. I recall decades ago working in a nursing home to put myself through college, there was a lovely woman who had an ischemic stroke. She couldn’t use her right arm at all. It was in a position that looked like she was wearing a sling. She also didn’t speak, though her eyes and body language communicated a boat load. She wore a watch, we of course, had to wind it every morning. With patience, time and encouragement, she learned to say “wind it”. Those two words brought tears to everyone. Her favorite thing to do was sit outside and hold her boyfriend’s hand. He was a wonderful man and he started helping her to regain her words. There were no ST’s, OT’s or PT’s in the facility so the RN’s and CNA’s did what they could
If you and your family members or any friends can visit at different times and different shifts, it can increase the quality of care he receives from the staff. Seems the more staff knows that family is involved, the more attention a patient can receive. Don’t forget to hug him, it increases our feel good reactions. There’s a plethora of articles on the internet on the importance of touch. Here’s but one https://greatergood.berkeley.edu/article/item/four_ways_hugs_are_good_for_your_health#
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I wonder if you can try an assistive device that goes from text to speech. Can he use an iPad at all?
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I’m so sorry y’all are struggling. My dad had his ruptured Annie and was kept alive for a year or so. Never regained any useage of anything. Prayers for your Dads improvement
@Moltroub Thank you so much for the resources about art and music. Right after he woke up from his coma my dad actually started drawing in his room again by himself. The staff of the rehab center was very impressed. But two months later he had another stroke and since then he hasn’t touched a pan anymore and is not interested in drawing or painting at all. Music really seems to be the thing that helps the most. His wonderful Speech therapist works with him incorporating music. They will sing the words together and it seems to help.
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Thank you Eleanor for this tip! My dad actually gets a speech Computer this week to help him communicate. We are very curious how that will go.
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Im so sorry @Cgranny about your dad. I’m sure that was a very difficult time for you and your family.
I’m glad it’s helping! I found it much easier to sing than to speak. Back then I was speaking without affect, so my speech sounded like a robot with a stutter and aphasia😂. Singing my words helped all three!
My wife ruptured in April of 22. She still has difficulties with many things. It is so hard to understand how with some of life’s task’s my wife does just like before. Other simple things she can not do. I know how difficult it is to watch. It makes me cry sometimes She is definitely better. I see subtle improvement all the time. There is hope.
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