How do I interest loved ones to learn?

[Brenda Castro]

Hi Colette,

I’m sorry that you don’t have anyone in your family that is interested in learning about “aphasia”. Is this something you are experiencing for yourself? My heart goes out to you.

My brother has aphasia due to bleeding in his brain that was caused by his blood pressure going up to 288/145. His high blood pressure started about 7 years ago. I’m not sure the exact reason but he has been addicted to meth for many years. Seven years ago he was hospitalized and had congenital heart failure. Since then he has had problems with high blood pressure, however he tried different holistic ways to control it but none of that has worked for him. He told me about a year and a half ago, he will need to start taking meds for high blood pressure. Long story short, he wasn’t taking them consistently plus there is more to this but I want to get to my point.

We found a very understanding PCP who listens and is working with us to wing my brother off of gabapentin and levETIRAcetam. These two medications per my research, increases aphasia or doesn’t help it. Because of my brother’s major brain bleed the dr’s said, they were subscribed to him so he wouldn’t have a seizure. For one, my brother has never had a seizure in his life and he isn’t bipolar or schizophrenic which these drugs are used for. When I asked the dr while my brother was in ICU “if my brother had a seizure after surgery” he said, “no”. And my brother hasn’t had one and it’s been 2 and half months since his surgery.

My brother is a very strong guy. People under estimate his strength because of his size, and when he first got out of surgery and placed in ICU, when he awoke to a place he didn’t recognize plus the effects of the brain surgery, he was very combative, it took more than 3 people to strap him down. And I think from the very beginning the Dr.s missed diagnosed him just because of his aggressiveness. My brother was fighting for his life, he is a fighter, he doesn’t know where he is at, he doesn’t understand what happened to him, he has a feeding tube in his nose, he’s hooked up to iv’s. So his first response is to fight. So they give him these drugs to keep him calm and sedated. He’s in ICU for 3 days before I get there. When he see’s me, he is so happy, he starts whispering “help me”. He’s legs and arms are strapped down. I explained to the nurses why my brother was combative and asked them to please un-strap him. I told them, “I’ll be by his side and won’t leave him so they would t have to worry about him.” They did that and my brother was stretching out his legs and crawled to his side and slept. When I would leave him at night they would tie down his arms only. I was there for 9 days and he improved drastically but it was because I was there and I had the time to observe him and identify what he needed. Had I not been there I rally think he would have died because the hospital was short handed of both nurses and doctors. My brother had new nurses every two days and a new doctor every 8 days. There is no way they could truly assess him. And I feel because of my brothers aggressive behavior they put him on this medication to keep him sedated. I must say, people with brain surgery may experience seizures and doctors want to prevent this but because of the shortage of dr’a and nurses, in my opinion they missed diagnosed my brother. I wanted to give you this background so you can understand what me and my brothers caregiver I are doing for my brother.

The PCP, agreed to take away one gabapentin table during the day and that has made a big difference with my brothers cognitive thinking. He’s communicating better but he does have some form of aphasia that I think will improve once he starts OT and ST. He’s asking questions about what happened to him, he reads a little, he’s learning how to use the remote to the tv. His mind is there, he just needs to learn words again and how things connect together, for example he doesn’t know the difference between a fork or spoon, he’ll pick up a fork to eat cream of wheat. The caregiver showed him a book filled with pictures of food to ask him,” what he would like from the store?” And he will point to the picture or circle it, there are some things he does remember and he’ll say them but when he can’tremember, he’ll say, “never mind.” I’m so thankful to God for watching over him and meeting his needs. I’m so blessed to with his caregiver, she takes such good care of him.

I stay in contact with my brothers caregiver and she’s writing down every improvement my brother makes and also noting how my brothers mood and thinking changes when he takes his medications, so the next dr visit we can share that with her in hopes she will reduce or take him off some of his medications.

Well, Colette, I hope I didn’t make it too long. I pray that God would make your family sensitive to your need for their support. And meanwhile, I pray that you will find the support you need, in Jesus name I pray amen! God bless you and May He meet all your needs.

In Christ love,

Brenda

PS I’m sometimes busy so it may take days before I look at the post’s on this forum so don’t lose heart, I will get back with you and the others on this forum.