Caregiver-Loved One

This is a Finding Words story!

The following is Rick’s more detailed story, written by his wife Stephanie:

It was Sunday of Thanksgiving Weekend, and I was raking leaves with my son, Jason, when I starting having a massive headache…. like no headache I ever had before.   My wife called 911 and I went to the local hospital.  There they took a CT scan and could see I had bled in my brain.  They sent me to Jefferson Neuroscience Hospital by ambulance.   While waiting for the ambulance, I had another brain bleed and they sedated me.   At Jefferson they had to relieve the pressure on my brain and they put a drain in my head.   The next day they operated on me.   I had major brain surgery and they did a craniotomy and took off part of my skull.   They clipped two brain aneurysms and took out one clot from my brain.   The bleeding in my brain was bad— left side, right in the communicating artery.   The surgeon told my wife I might not ever talk again or ever understand what people say.  I spent 7 weeks in Jefferson.   For three weeks, I was slowing getting better, and then they said the fluid was not draining properly from my brain, and I had to get a shunt put in my brain.  More surgery.   After that I would not wake up much.     They figured if they put the bone back in my head, then I would start to wake up.   More surgery.   But fluid accumulated in my brain and that was life-threatening.  Back to surgery.  They took the bone out again.  After that I was unresponsive.   They put a trache in my throat and a feeding tube in my stomach.  I stayed in Jefferson for 4 more weeks.  After that they said there was nothing else they could do.  I had to leave.   Luckily my wife was able to get me into the Moss Rehab Responsiveness Program.   It was for comatose people.   They said I was “minimally responsive” in a vegetative state.  For two months every day the therapists at Moss worked with me even though I was like a rag doll.  They were very supportive for my family.   Many friends and family visited me.   Luckily my wife was able to take the rest of the school year off to be with me every day and advocate for me. Finally, after 2 more months, they tried to put the bone back in my head again.   This time it worked.   Shortly after that, my insurance gave out, and I had to leave Moss.   I was too sick to go home, so my wife had to find a nursing home for me.   She says this was the hardest thing she ever had to do.  She did not know if I would ever get better or ever be able to come home.   She got me into Innova Rehabilitation, a short distance from our house.  In order to do this, she had to get me on Medicaid, a financial and paperwork nightmare.  I stayed there for a year and a half.  Slowly, very slowly, I started to move…. first my left side.  Then finally my right side a little bit.   I was very spastic.  I had surgery to put in a Baclofen pump, which controlled my spasticity.   My trache came out, but I had a few episodes of aspiration and had more hospital stays.   It took me over a year to learn to swallow again.  All that time I had my feeding tube and eventually pureed food.   I couldn’t speak at all for a long time.  When I finally found my voice, everything I said was gibberish…like a foreign language.    I had a lot of urinary tract infections, and they put in a catheter directly into my bladder.   As I slowly began moving more and more and becoming more aware, my wife realized I was getting better and would eventually be able to come home…. but she had to modify our house first.   She put in a lift for a wheelchair and a roll-in bathroom and a bedroom on the first floor.  I could not stand or walk and was confined to a wheelchair.  I finally came home a year and a half after I first left my house.  That summer therapists came to my house.   Then I found NeuroPlus Rehab.  My wife was able to sign me up for Access Link to get me transportation to NeuroPlus because my wife had to go back to work as a teacher in September of that year.   I received Speech, Cognitive, OT, and PT therapies.  I continued to get better.  Slowly I advanced in my skills and moved forward.  The therapists helped me get a motorized wheelchair, which improved my quality of life.  I went back for many more surgeries….they operated on my elbow to relieve pressure on my right  ulnar nerve which was trapped, causing my right hand to clench in a fist.   They operated on both my hamstrings to release the tightness, which prevented me from straightening my legs.  After that I was able to stand up and learn to walk again.  I had surgery on my ankle to straighten my Achillies Tendon so I could flatten my foot.  I had lost range of motion in all these areas.  For several years I suffered from seizures, which were very scary.   I was hospitalized several times because of these, but we have been able to find the correct medication to control them.

Through all the help from all my therapists, along with my wife, and loving family and friends, I was able to get back my life.   It has been 8 ½ years since my ruptured aneurysm. Today I am still limited in what I can do, but I can still do a lot.  I have most of my long-term memories.    The damage in my brain has left me with Aphasia, which makes it hard to remember the names of people and things, but I can still manage to get my message across most of the time.  My speech is much improved.  I can say many things very clearly, and I approximate many other things I am trying to say.    I am still smart.  I am still a really good problem solver….something I always excelled at.  Through all I have not lost my sense of humor.   My friends and family have always been there for me.   My wife says I really am a “walking miracle.”