The Bureaucratic Bridge-or how we got Terry from here to There. October 2006.
Where was I? I think I left off with our turn in the psych ward at St Peter’s Hospital. Somewhere around there I hit the point of desperation, and blessedly due to a chain of prayers and circumstances we found Dr Joe Moisan, my personal angel.
Terry’s sister Penny had Dr Joe as a visiting faculty lecturer in a college psych class. She gave me his phone number and begged me to call him, she thought he could help us. He agreed to see Sherry and me the same morning I called. We drove the hour to Grapeview out on the Hood Canal to his home on the water. We were there so long his wife had to make us tuna sandwiches for lunch.
Dr Joe cut through more malarkey in one more morning than I cut through in two months. Amazing. Joe called and had an appointment with Social Security set up, even though Terry didn’t qualify because fire fighters here are self-insured, just one more hoop to jump through.
He made a phone call to Bakersfield, California to the Centre for Neuroskills because he thought the facility might be the perfect place to help Terry. That turned out to be a life changing call. We got an appointment set up in the Seattle area with a neuropsychologist to assess Terry’s level of cognizance and exactly where his injury was causing problems.
I dreaded the drive to Seattle with a crazy guy who might jump out of the car any minute, but I would have walked and carried him to get the help we needed. I wrote out a check for the down payment on Dr Joe’s service and thanked God for good insurance and a great ombudsman.
He guided me through the next few weeks and made the drive to meet Terry one evening. Doctor Joe gave me excellent advice on techniques to deflect some of the head-on battles I was running into with Terry. The care and information we give caregivers is abysmal, no wonder they burn out and fall apart, me included. Just knowing about how to handle things with deflection or distraction was wonderful and made life so much better.
In the middle of hoping we could get Terry into a facility dedicated only to brain trauma rehab, I still had hoops to jump through every day with mountains of disability paperwork to fill out. Duplicate statements had to be gathered from a raft of doctors, policemen, caregivers and our medical insurance providers. I quickly filled an entire drawer in my filing cabinet with paperwork .I still have it. It amazed me how many times I had to send the same stuff to the same bureaucrats.
I have to say our medical insurance people were wonderful; we have two companies because Terry is a retired fire fighter. Both providers gave us an ombudsman which helped a lot and it’s something I recommend anyone dealing with a huge medical issue. Insist on your own person who is a point of contact.
The Social Security disability interview was hilarious. The lovely young lady doing the interviewing insisted Dr Joe and I sit in the back row while she spoke to Terry and asked him simple questions. He got his name right, but not his birth date. Then she started on the hard stuff, like his mother’s name and where she was born. We were off to the races and I had to fight to keep my mouth shut. Doctor Joe laid a restraining hand on my arm and signaled to let them flounder away. Terry was great; he made it up as he went along. I learned along my way through the brain trauma swamp this is called confabulation. The brain takes snippets of information that may be correct and just pastes up anything it can find to make whole cloth. It was fun to watch as she just got more and more lost before she finally put her pencil down and sputtered to a bewildered stop.
We got a form letter from Social Security two weeks later saying he didn’t qualify for Social Security Disability because he was a self-insured fire fighter, which I promptly sent along to the disability people, checking off the just one more exercise-in-stupidity-box.
Sherry and I took Terry to Seattle on a damp fall day to see the neuro doc, carefully making sure Terry couldn’t get the door to the car open from inside. Thank you for childproof locks, Dodge Company. It took hours and he flubbed almost everything. The doctor was able to pinpoint where the injury was and what was going on which was more light shed than we had had to that point.
Before we knew it, the Centre for Neuroskills had sent a caseworker all the way from Bakersfield to visit us at home. The poor guy arrived on a soaking wet pouring-down-rain day from sunny California. He looked like a drowned cat but he knew his stuff and he told Dr Joe and me he thought Terry would be a good candidate for CNS. Except. Except that Terry’s birthday made him a week too old for the Centre. Thankfully, they bent the rules and accepted him as an inpatient for as long as it would take, they thought about a year. For the first time I could see a light at the end of the tunnel that wasn’t the headlight of an oncoming train. There was help on the way and I felt like crying but didn’t have time.
I have to say, TBI care is seriously expensive help. If I had been the one who killed a deer with my head I would be stashed somewhere local, degrading into an inconvenient brick around the family’s neck. Once again, being a fire fighter is a wonderful thing. In return for running into burning buildings and pulling people in pieces out of cars after accidents, the fire department takes care of their own, and does it well. I’ll say it again, I am eternally grateful.