So Wow! This is not at all what I thought was coming and I had no idea what was going on in my hubby’s head. Praying that God will keep me present and protect me from all of the ways I am beating myself up for not doing a better job getting him help sooner.
I felt so overwhelmed that I did not know what help was needed or who to even reach out to right after the accident. For the first several weeks, that was ok as Thad was unable to stay awake more than 4-5 hours a day and sleep was challenging with flash backs and dreams. I made sure he ate, stayed hydrated, kept it dark, and just held him when emotions became overwhelming and prayed because our lives depended on it. As he started staying awake longer, I stayed focused on activities the doctor said to do keeping the safeguards in place. For physical safety, I followed the doctors orders of not letting him be alone – ever.
What I missed in the scenario became obvious when Thad was hospitalized the week before Thanksgiving. During one of his many assessments, I heard his heart including the fears and the emotional roller coaster of the flashbacks and panic. All of his emotions are strong and often overwhelming. He will laugh uncontrollably for apparently no reason. He can be just sitting on the couch and start crying. He often cries in his sleep as well. All emotions can get intense quickly – laughter, agitation, gratitude, frustration – and he doesn’t know and can’t control it yet.
He gets overstimulated very easily. Too much of anything creates anxiety. His brain gets tired trying to process large spaces, lots of sound, lots of people, lots of stuff. This is most public spaces – including grocery stores – especially with Christmas sounds, lights and decor now up. He is typically ok in quiet conversations for a couple hours. Attempting a meal out, we generally need to be done in an hour and then he is ready for a nap.
This also makes most any interaction challenging. With one or two other people at a time, in person, at home, with soft light, he seems able to carry on conversations and stay present. He has done 3 people a couple of times but tires more easily. He can carry on conversations and sound mostly normal. His humor is still very much intact. He has some stuttering/hesitation and will forget words or maybe use the wrong word. If he gets emotional or excited, he has trouble getting any words out.
I heard what he does and doesn’t know. I had no idea he couldn’t even name the days of the week, months of the year, ABC’s or even count to 10. When asked the month and year, he consistently says October 2015 as that is the last fully intact memory he has. He has a few random event memories since then, but has strong emotional responses and then confusion because he doesn’t know why. He also has challenges with short term recall.
He really can’t see much right now – mostly because he sees so many items – instead of one ball, he sees like 7 and he can’t focus his eyes enough yet to read books, though with very large print he is getting better at letter recognition. He is not able to view screens – if he gets a phone call, I screen it and then he can talk on speaker as the phone can’t be up to his ear. When he gets a text, I read it to him and then type his response. He can’t tell the difference between keys on my key ring. This is all kinds of fun with the light and sound sensitivity. He is mostly ok with indirect natural light and low wattage incandescent lights behind him when it gets dark. He wears his sunglasses or a complete blackout mask whenever we need to leave home. He has constant ringing in his ears and so we can do instrumental music for short periods of time only.
His vestibular system isn’t working with his other senses. His eyes and ears are needing to learn to work together again. He is dizzy and really doesn’t know where he is in space and can’t process the movement of others around him. To go anywhere, he uses a walker and sometimes needs help with doors and figuring out doorways. This makes riding in a car all kinds of fun as movements can feel exaggerated. Our current max “distance” is about 30-40 minutes at a time and then he needs a break. I am finally grateful we live in the city – so close to doctors and therapists.
I didn’t know what he couldn’t remember – his memory has us living late 80’s to early 90’s. So much of the past 15-18 years is spotty to non existent. I showed him a picture of us with really close friends and he has no idea who they are. He recognizes some people but doesn’t know names or relationships. He knows me though we had to process through the relationship of wife.
He also shared the guilt he feels watching and listening to me trying to figure things out – with his work, with the police, with car and medical insurance …. Oh how I wanted to protect him from all of that until he was more ready to deal with it.
We are in the process of building Thad’s mental stamina and endurance to enter a day patient neuro rehab program. He is doing outpatient rehab weekly and at home “exercises” daily. His current focus is on vestibular therapy with some PT. We hope to be able to incorporate some cognitive therapy next week.
This is our current reality – We may feel like he/me/we is going crazy – we have to remind ourselves this is part of life with a brain injury and God’s got it!
2 Corinthians 12:9
And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me.
