Three months after the accident, we had no idea how long David would stay at the facility, but we felt that it was important that family visit him often so he didn’t feel abandoned. We brought little things to jar his memory, played board games, took CDs for him to listen to, and encouraged walks outside in the sunshine.
We looked beyond the previous setbacks and stayed involved in every aspect of David’s life away from us by monitoring medications and demanding answers to our questions. Because of the near-mishap (hydrocephalus), his wife wanted him moved. The reality of this – was there was no other place equipped to handle traumatic brain injury any closer.
Although barely visible, David was making progress. He moved from a high-back chair with wheels to a wheelchair, where he was strapped in with a seatbelt attached to an alarm. The staff explained that it was just in case he tried to stand up and his legs wouldn’t support him.
In the 10 page monthly CLIENT ASSESSMENT REPORT; specific goals for each therapy were broken down using a 7-point ordinal scale with a summary of each at the end along with a doctor’s assessment. And each month, just like clockwork, his insurance company had to be convinced to keep paying for his rehabilitation. Our expectations far out-weighted what the facility was doing. Their colorful brochure showed a multitude of treatments, a woodshop, a swimming pool, and horses out grazing in a pasture. They were fun-looking activities, activities that didn’t match what we saw and experienced.
The facility provided David with 24/7 care with therapies scheduled 3 hours a day. He liked most of them and often laughed with the therapists when teased about his ball cap (which he never removed except at bedtime). Since his injury was on the left side of his head, the right side of his body felt the deficit and his right hand was ace-bandaged onto a rotating device for exercise. But when it came to physical therapy (PT), he absolutely abhorred a contraption known as the ‘stander’. He yelled obscenities (although no one knew what he was saying at the time) and often howled to make them stop. His legs continued to contract and he lost weight at an alarming rate.
During this time, my husband and I flew back and forth from our home up north. The possibility of what to do if the insurance company stopped paying for rehabilitation loomed large. He was not ready to come home…who would care for him? He was wheelchair bound, incontinent, unable to talk, and had a feeding tube. The reality is that caregivers of TBI survivors carry a tremendous responsibility. They have to let go of the past, fight for the present, and plan for the future…all at the same time.
As I continued to document David’s journey, I discovered that it also provided a sense of peace when I wrote things down. The difficult decisions we made for David mirror the difficulties Ellen faced in The Ancient Whisper. In a way, when I wrote, it helped to work out and dissipate some of the anger that we felt when we eliminated David’s inventory, (equate this to Ellen’s possessions being sold without her permission) because we needed money to pay his creditors…a sad task for any parent.