We’re approaching one year since my dads aneurysm rupture. It’s been the most challenging year for all of us. My dad was in a coma for two weeks and is now severely disabled. He still has severe aphasia, can’t walk or live by himself. I have to remind myself how far we’ve come. In the last six months I feel like his understanding improved a lot. On good days, he can play chess or other games. Not as well as he used to, but he’s getting there. He slowly starts to stand up by himself and moving his right leg (he’s right side paralyzed). He also is able to read simple words now. Unfortunately, we see almost no improvement in speech. When he talks, you can’t understand anything. Just „yes“, „no“ and „okay“. This grief is with me everyday and I still hope for more recovery. Is there anyone out there who experienced something similar and had a “good” outcome? My dad was the most intelligent and creative person I know. It’s heartbreaking to see his new “normal”.
Oh my gosh, my speech and comprehension of others was horrible for several years after I ruptured. I just didn’t get it unless they used short, simple sentences. In the hospital, my BF brought me in a mystery book. It was a simple book without a lot of innuendos which I still don’t understand. I would ask anyone who went by my bed what a word meant. One of my very kind and wonderful RN’s suggested I not ask visitors for other patients. Although I couldn’t understand why not, I heeded her words. Top that with a stutter and I was difficult to understand. The absolute worse thing for me was when others gave me a word they thought I was searching for as it would put my brain to a grinding halt.
Both of my speech areas, Brock’s and Wernicke’s were hit hard by my rupture and my doctors didn’t know if I’d be able to speak. I used a lot of incorrect words and couldn’t understand why others didn’t understand me. All the RNs assigned to me were great and gave me time, rarely gave me a word I was searching for unless I asked. The Residents, the CCU staff and the Medical Student were the same. There was one doctor who said he was over the unit that wasn’t so kind and I told him he wasn’t allowed in my room ever again. LOL.
My saving grace was Speech Therapy. It was by no means easy and the first go around I would be exhausted after 30 minutes. Ms. Stacey, my ST, extended my weeks and shortened my sessions. I went five days a week and would often sleep a few hours afterwards. She sent homework home every day that I had to do with BH, my parents or friends as the occasion called for. I had to practice all the time. With a lot of very hard work and following her directions, my speech s l o w l y improved.
After my third coiling attempt, it set my speech back and we don’t know why. So back to Ms. Stacey I went. I cannot tell you how much it upset me and Ms. Stacey saw that. Although I was a point under what her testing said I need to be to receive ST, she spoke with her boss and I was able to get back into it. She then referred me to Wake Forest Voice as she wanted me to get my diagnosis for the FAS I developed from my second procedure.
Ms. Amy was my ST at WFV and she had a music background. She taught me many things over my sessions with her. Because we lived an hour drive away, I went three times a week and BH was included in all those sessions. We discovered I could do better if I sang my words instead of trying to say them. She taught BH how to help me and of course there was homework I had to do daily. I still have times when I have to consciously practice what both taught me. In fact I did it yesterday when I went in to purchase a couple of lamp shades.
BH has had to tell me words I’ve used may not have been the best choice as I am became very blunt with my speech. Though not an untruth, it’s the way I put it that could hurt the feelings of the person I was speaking with. I didn’t understand why I couldn’t say what I said back then but I’ve improved a bit.
Over these ten years since I ruptured, BH goes to all my initial appointments with specialists to ensure they understand me. If I’m having a very bad time of it, BH takes me to whatever specialist I am going to, to this day. BH will also have to sometimes explain what someone has sent me in a text because I can take it the wrong way.
We are still in the process of having work done at our new home. We had to get permission from the contractor to not use his project manager and for me to just speak with the guy who’s actually doing the work. The PM confuses me a lot, he speaks too fast most times and what he says one time will be opposite of what he says the next time and to top it off he will say he didn’t say what he said the first time. Because my memory used to be excellent and is not now, it upsets me and I have to get verification from others. When I get upset or have any strong feelings I lose my words.
I think it’s amazing your Dad can play chess! I couldn’t remember how to play Mancala, a game we used to play several times a week. We used to get together with friends once or twice a month to play cards and I still have a difficult time remembering how to play. If the light is to bright or I am having a bad day, we’ve learned I can’t play at all. I think there’s a correlation between speech and cognitive ability, but don’t know.
As Merl often tells our members recovering from a rupture or even brain surgery in general is not a few months like a broken bone. We have to learn to think in terms of years. Some are lucky and can think in terms of months, a rupture throws a wrench into it. Be patient with him and yourself. See if he can get into speech or physical therapy. If he can commit himself, he will do better. If he can have a family member go with him and learn the techniques so he can be helped at home, he will do better.
I also grieve for and about the person my wife once was. I often wonder if she feels like she is suffering. She is a year and 8 months from her SAH. On a day to day basis i don’t always see progress… Upon reflection i see it. It also does not seem to always go forward more like two steps forward one back.
Yes there is hope for more progress. My wife has aphasia also but it is much better. Some days she choses not to talk, not one word, other days she can be chatty. Cognitively some things are still difficult and don’t seem to be improving. Her confusion is still improving ever so slowly. I hope for continued progress for you father .
Thank you @Moltroub for your reply! And thank you for these great insights. Aphasia seems to be so complex and I’m glad things improved for you! My Dad is getting Speech therapy 2x a week and physical therapy 3x a week so we’re really happy about that.
I really appreciate your reply @Spousecaregiver. I’m glad your wife is making progress as well! It’s such a painful and fascinating journey at the same time. Is there something that helped your wife with Aphasia besides speech therapy? My dad got this language computer but he never really uses it without help unfortunately.
That’s great news! Encourage him to do his homework with both. My ST gave me picture matching with words, short sentences I had to try to memorize, suggested different word apps that her children were into, though I don’t recall which ones but they were crossword puzzles and word match. BH said I only had to do them once a day, but I did them twice a day.
I recall one day in ST, I had to make a call to either my disability insurance company or some other important company. I hadn’t been returning their calls because quite frankly my speech wasn’t very good at all. BH snitched on me lol. It was probably the most difficult call I’ve ever made. I was sweating like a race horse after the race. What should have taken me three minutes was about fifteen minutes but Ms. Stacey was there and gave me support. She made BH leave the little room. She also told the person on the other end to use short sentences and wait for me to answer, something people don’t like or know to do.
I had been a frequent flyer to the Outpatient facility for PT and all the women at the front desk knew me. Ms. Stacey happened to be making copies for another patient and she heard the one woman giving me words and interrupting me. You should have heard Ms, Stacey explain to the woman that the kindness she was trying to provide wasn’t kind at all and was doing more harm than good. We had one of my exercises right there in the waiting room with that woman, with many patients waiting for their various appointments.
One time, when I was waiting for my PT appointment, Ms. Stacey had me move from the wall I always sat at to in front of the television where she was sitting just “to chat”. It was very difficult because of the noise from the tv, the noise from people checking in and out and folks talking.
Besides being motivated to communicate with others, I was afraid of being “fired”. The facility would “fire” patients that didn’t do their homework as they perceived those patients as not wanting to get better and were wasting their time. Make sure he does his homework!