I have been caring for my father for about 2 years. He had his rupture in September of 2020. He was in the icu for about 6 months and in rehab for about another 4. The rehabilitation facility got him well enough to come home. Since then we have continued to struggle with getting him back into daily living activities. He struggles with aphasia and often say things that do not make sense, he mimics behvaiors (pretends to smoke a cigarette, pretends to eat or drink), gets very irritated quickly, and cannot remember much of anything greater than 5 minutes. We do have a program similar to Tactus that we have been using to help with some memory and cognitive issues. My question is, post aneurysm and initial therapy, what has worked for you all? Did you seek outside occupational therapists? Are there certain programs or therapies you have used yourself that help? Should we be speaking with a neurologist/psychologist/PMR? We just are at a loss for what the most successful therapies would be for my dad at this point. As caregivers, we are becoming very fatigued and really just want to help him get back to some form of his old life.
Caregiving can be exhausting. Make sure you give yourself some time off! We actually paid a young woman to come in and stay with my Mom so we could get a few hours to ourselves a couple of times a week. She was really good with Mom so a win win situation. Hopefully you’ve already looked over everything the BA people have on their website found here https://www.bafound.org/. You might be able to get some more help or ideas from the American Stroke Association American Stroke Association or from the Brain Injury Association https://www.biausa.org/
Whilst the latter two deal with mostly ischemic strokes and TBI’s you can still get a lot of great information from them. They both recognize a rupture under their umbrellas. Don’t forget the Joe Niekro Foundation https://www.joeniekrofoundation.com/ or the newer Lisa Foundation https://lisafoundation.org/. I’m sure there are many more I don’t know about.
Your father’s neurologist, we usually get one after a rupture, should be able to make referrals to what he needs. Have you talked to him?
Unfortunately, irritation can be a common thing for those of us who’ve ruptured. It’s hard for us to understand why people keep trying to correct our words or behaviors because we don’t see what we are doing is wrong. Sometimes, we may know that what we are doing isn’t quite right but our brain doesn’t know how to do it anymore, so an immense amount of patience is required from not only the caregivers but the person as well. I’d say the first five years were taxing. I had zero affect (emotion) for the first five years. I didn’t understand why some friends and family were upset that I didn’t cry when my Dad died, nor my Mom. I was confused with their responses and BH had to explain in the kindest way possible.
When my emotions started coming back, it was strange to look back at my reactions without emotions. The first to come back was frustration, then laughter and then they all came back!
Speech therapy really helped me with my stutter, aphasia and memory issues. Ms. Stacey, my ST taught me how to make a phone call and set up appointments, she taught me to put everything in my smart phone’s calendar so I wouldn’t forget appointments. I still have to look at it each morning. I set two reminders that come up. She also helped both of us develop a routine much like someone with ADHD.
Yes. Being caregiver is very exhausting and overwhelmed especially sometimes don’t know to how to or help.
I was in post aneurysm surgery which it hit my brainstem. 4 years past. Prayer helps.
Never gives up and keep ceasing
Sometimes I wanted to do this, but my brain told the other things, my doctor described it as new employee in my brain. The previous one was dead (hit by aneurysm)
I am appreciated with all my current doctors, they worked so hard and communicate each other
But we have to remember the worst things to move forward
In other word. When I was frustrated and saw nothing good, my doc told me which one my condition is better? before or now
I said before surgery, after surgery or present
Then I will recognize that God is good and heals me