The realization that our son’s rehabilitation from his traumatic brain injury was going to be a marathon, made it clear that I would need my own vehicle in Florida. And on May 1, loaded down with what was left of our son’s life (that he left in our basement) my husband and I set out for Florida.
Looking back at this time, it was the beginning of our migration south. It is interesting how ones’ life can change so quickly when tragedy strikes. We found the best way to deal with the unknowns associated with brain injury recovery was to be flexible and do whatever it took. At least with my own vehicle in Florida, it meant that I didn’t have to fight with David’s manual transmission truck. It was odd to be driving it anyway – it was a constant reminder that he wasn’t here. Then I questioned whether he would ever drive it again. Or worse, could he even drive at all.
We were now in a somewhat stable routine, working on regaining David’s basic physical capabilities, like walking and eating – things we take for granted. David’s step-down unit (one-on-one) caregiver followed him around with a folder; they made sure he was fed either by mouth or via G-tube, and took him to his therapies. David preferred to go right; that meant he was going for a walk or getting his meds. If he went left, it meant they were taking him to the people who hurt him (physical exercises). This is where he asserted himself by resisting treatment and hanging onto the bar leading into the building. However, it also meant that he was fighting to regain his purpose so he could get out of there.
When David first went to the facility, his wife took his clothes home to launder herself, and then gradually allowed the facility laundry to take over. She put his name on every piece of clothing to ensure they would come back to him from the laundry, then gradually, we noticed that he had fewer and fewer clothes.
We began finding David in the common room when we arrived. He would recognize us and get agitated when we didn’t move toward his room. Then it occurred to us that every time he saw us – he thought we were taking him home (or wanted us to). Again, this was encouraging, but heart wrenching because we knew he was not (nor us) yet ready to take this step. My sister and I still had the ‘visit plan’ in place and I showed him his calendar with the date circled (June 5 – his birthday). But it only meant a visit, he would have to complete the ‘bowel & bladder program’, be able to transfer himself into and out of his wheelchair (because I could not pick him up), and be able to pass the swallow tests.
But then, David had always been impatient and this trait was most likely amplified by his injury. At one point, he picked up his wife’s shoes, motioned to the baby’s stroller, and whispered ‘get going’. When we tried to explain that he was not ready to leave, he whispered ‘tomorrow?’ and his Dad told him ‘soon’. He didn’t have to know what we had to do to make this happen. He was only interested in when it would happen. The ‘pep talks’ I gave him over the phone were the same ones I said in person; if he wanted to come home, he had to do certain things – he had to fight his way through the fog to do it!
David’s Dad continued to commute between home and Florida while we worked to shut down his company. We realized that hanging onto the equipment in the hope that David would recover and use it to reopen his recording studio was only a pipedream. We struggled with our emotions and slowly accepted the fact that there was a new David – we as least still had part of him anyway and we were determined to help him regain as much of himself as was possible.
Reports from the facility (called the client plan/update) used functional assessment scales from another rehabilitation institute within the United States that would arrive a month after we needed the information. To have it on a timelier basis, we initiated a weekly report to be assembled by David’s case manager. We could then monitor his weight and other vital statistics in our quest to understand where he was and to help us determine what he would need when he was no longer part of the post-acute campus.
It was early May and David had been in the rehab facility for almost 6 months. I didn’t like going alone to the facility and usually a family member would come along, but on one occasion, a good friend came with me. We got into a discussion and I missed the turnoff. On the open back roads of what we nicknamed ‘middle earth’, swarms of tiny bugs spattered the windshield and were on most of the other vehicles on the roads and in the facility parking lot. We didn’t know what to make of them. All anyone could tell us was that although the bugs were messy, they were harmless.
When we arrived late that afternoon, the speech therapist informed us that David ate breakfast and everything on his lunch plate. This was great news and we naturally assumed the tube-feedings would stop; however, the swallow tests were not yet completed so we had to wait. This was typical, one-step forward and a half step back… at least there was more momentum moving forward than backward. P/T continued to serial-cast his legs, and allowed him to use the assisted tall-walker. Another encouraging sign was when his comical side showed up when he picked his feet up off the floor as the assistant pulled the walker – she noticed and told him to put his feet down and we had to chuckle at that! We had to keep reminding ourselves that if we were going to win this marathon, we had to persevere and go the distance.
The new date for David’s home visit (to the house he bought before he had his accident) changed to June 10 because the facility would not agree to this until they conducted a home evaluation. Again, we were completely frustrated with their inconsistency. This is when David asked where Dave was…and I explained that he had to go back home. He asked when he could leave and smacked the table when I told him ‘not today’ and then told him that the date changed. His caregiver knew the drill and distracted him so we could leave.
This was always the hardest part for me – knowing we had to leave him there to fend for himself made me cry every time I left him. At this point, I was angry that David was so frustrated. Then part of me hated the long drive to and from the facility, and part of me was grateful that David had come so far. I felt that he was trapped in a body that didn’t want to do things – also trapped in his mind because his mouth couldn’t say the things his brain told him to say. I knew it was going to be a long, long road to recovery, but now there seemed to be a light at the end of the tunnel.
On our way home, the tiny bugs flew at us from every direction and by the time we got to my friend’s home, I had used up all of the windshield fluid. It took a roll of paper towels and a lot of elbow grease to take them off…we learned later that it had been a rare occurrence – some blamed the University of Florida for unleashing an experiment gone awry – a completely false accusation – yet there they were.
The medical statements, invoices, and Explanation of Medical Benefit forms were piling up. It was hard to understand them so I made calls for clarification. It became increasingly difficult to deal with the bureaucratic red tape – they could not find the authorization letters that I sent them repeatedly – HEPPA laws changed…and my frustration level was elevated!
Finally, the facility conducted a home evaluation and approved a one-day visit. The facility van would bring David home but one of us would have to take him back. Even though it would be a week after David’s birthday, we could have a little party for him. Then my sister and I wondered if we jumped the gun…would David see it as a tease and get upset when we took him back?
Bringing David home for a visit was an important step to determine both his and our ability to care for him and the facility kept asking how we were coming with our discharge plan. Funny how they wanted to know what those plans were when they weren’t moving very fast on his bowel & bladder program and the case of the missing clothes became a joke when we found him in someone’s shorts that were three sizes too big!
On May 25, the facility transported David to the hospital that did his original surgery. He met with the Neurosurgeon to do a follow-up check on his ‘bone flap’ and the depression that seemed to be getting worse. The Neurosurgeon suggested that David remain for surgery the next day. This would be the third time David had his skull opened…how much could a person take? During this time, I called his wife to explain what the doctor had said but the call went straight to her voice mail.
It was emotional when nurses recognized David’s name and stopped by to say hello, and then asked about his baby and wife. We met so many caring people during the months he was hospitalized after his accident that I wanted to come back so he can thank them.
After nearly three hours in surgery, the Neurosurgeon told me that everything went well and someone took me to see David in recovery. I touched his hand and he smiled at me, and I knew he was okay – then he squeezed my arm. Still, there was no word from his wife.
David returned to the rehab facility, and we went back to our routine with the added nightly phone call. It was a stroke of genius (or dumb luck) that day in April when my sister called David’s building and spoke to him on the phone and we realized his speech was better when he had a phone in his hand. We also understood how important this connection was for him to be able to speak to his family while he was so far away from us. It also made me feel good to hear his voice even though it was only a whisper. Unfortunately, his wife never tried to call him and it’s probably why he can’t say her name today.
Because we were at the facility several times a week, we saw first-hand what all the therapy sessions were doing with and for David. In the back of our minds, we wondered why we did not see any doctor in the building where P/T, O/T, and Speech Therapy took place. We also had concerns over the obvious lack of weight gain and the delay with the G-tube removal and discontinued feedings.
As we all worked to ‘get David home’, I realize now that his wife was not capable of taking care of a person with this type of injury although she made a good attempt early on to project the ‘good wife’ image. It was obvious that any future home rehabilitation would probably not include her, so we set about to plan accordingly. David’s wife was becoming an obstacle… we will use this as an opportunity!
“An obstacle is often a stepping stone.” – Prescott
Please visit my website: www.maappleby.com to see the progress of the books that I have written as a way to cope with our family tragedy.