Keeping busy was the best therapy to avoid worry so I threw myself into organizing data files, medical invoices, and monitoring the sale of studio equipment we were selling on e-bay. We had worked so hard over the years to keep David’s company, Scorpio Productions, Inc., going and it distressed me to think about shutting it down – so I pushed it to the back of my mind and focused on what we needed to do for David.
I visited the e-bay store and spoke with the manager to see what was left of the miles of cables, and wires, mounds of connectors, and other items that were put up for sale. Not much to show for Scorpio’s 10 years in business, but we had to do it to recover as much as possible and reduce our losses.
David’s dad and I are not medical people so we had to trust that his caregivers knew what they were doing, but on more than one occasion, my sister and I felt children staffed the facility and they were there merely to watch the patients, not just rehabilitate them. During one of our mid-week visits, as we were taking our usual stroll on the veranda after lunch, I happened to look out at the parking lot to see my husband. He traveled from Ohio for a weekend visit just to surprise us.
David had not seen him since he left in January, but he recognized him right away. After a cheerful welcome (and many hugs), the staff asked us to sit on the mound of mats because they had a surprise for us. We watched as David took the sides away from his wheelchair and then he was helped to stand up. He gripped the handles on what looked like a tall walker with wheels and Uncle John was there to evaluate. Then he walked back and forth in front of us and we were truly amazed because he did this with both legs cast to the thighs. I guess that memo finally got to the right person after all and it definitely showed us the importance of rehabilitation.
It was a long day so we said our goodbyes but mindful not to let David see where we were going because he would most certainly try to follow us in his wheelchair, so his caregiver distracted him. It was times such as these that I got a lump in my throat and my eyes teared up…what must he think when he saw familiar faces and couldn’t articulate the words to express his feelings? Was he aware that he was in a facility to help him? Did he miss us when we were not here? When he pointed to the door, did he want to go out and go home or did he think he would be here forever and never go home?
The following week, one of David’s cousins gave him a lollipop, just to see what he would do with it. This wouldn’t be a big thing normally except that David licked it. He could not do that last week and he had tears in his eyes when they told him they had to leave. But the biggest surprise was what happened when his cousin handed him a pad of paper and a pen and he printed, ‘David Go Naples’, which is what convinced all of us that he wanted to go home and we decided to seek ways to get him out of there and home just as quickly as possible. Sadly, David’s wife didn’t believe he wrote it nor did she appear to be motivated to get him out of the facility.
At the end of March, I had to head back to Ohio to continue with the shutdown of David’s company and get my own life back on track. This is when my sister and I started our plan AA; and where I started to feel the tug that maybe I should be in Florida, not Ohio. By all accounts, it was critical that family members be with David…but mostly I knew that I should be there.
In April, my sister called to say that she had called David’s building to ask how he was doing and his caregiver handed him the phone and he mostly breathed into the receiver. Later that day, I called the facility and asked to be connected to him, and the next thing I knew, I heard him breathing into the receiver too. I asked his wife to start calling him, but she said she didn’t have time. After that first call, I started calling almost daily saying, ‘Hello David, Mom here’, then we made a point to call him every night…we just wanted him to know he was not alone and we were thinking of him.
After receiving our monthly client assessment, my sister and I were more determined than ever to put Plan AA in place. This was the ‘how to get David home’ project. This plan involved how we would get his house ready for a visit. Our aim was to do this by his birthday in June. Although P/T continued to serial-cast his legs and they purchased two leg braces, (there is no mention of using them), his weight dropped to a staggering 89 pounds and there was the concern of him choking on food and drink! He was still being fed via feeding tube and no mention of the ‘bowel and bladder program’.
By the end of April, David quietly said ‘hello’ and ‘how are you?’ when we called. More people started to call him and I felt the pull to go south again, but I also felt bad about leaving my husband. We’ll get through this; he kept saying…the hard part is behind us, but was it? Maybe it was just beginning.
At the beginning of May, David’s cousin noticed that his skull had started to depress where the ‘bone flap’ had been put back. By May 4, my husband and I arrived at the facility loaded with what remained of David’s possessions from home and a renewed sense of hope that all would be okay now that we were here. But when I saw David’s head, I was very disturbed to see it. Although the CT scan looked okay, the neurosurgeon wanted to know if he had fallen or been hit with something to cause the depression. I didn’t want to think about what that might mean…but we were more disturbed by his behavior.
We realized how full of anger and frustration he must have felt when people came to see him but no one took him home. So we gave him a calendar and this was the start of his ‘countdown to home’. Two days later, the facility wanted to know what our ‘discharge plan’ was…will David go home to his wife and has she applied for Medicaid? It’s anyone’s guess right now…so my sister and I went to work on other plans…Plan B, then Plan C. After we explained what we expected from them, we waited for them to do a home inspection.
They would not release David to us (even for a visit) until Endoscopic swallow studies took place along with dysphagia (swallowing) trials. A disconnect between what they sent his wife and what we received from David’s case managers was a constant irritant. Then the facility initiated a three meal a day plan but they refused to discontinue the midnight feeding. But then, things began to look up when David’s weight started to increase to 107 pounds.
When the facility did its home evaluation, they told us that the hospital bed would not fit in the same room as the office desk/hutch. We had worked very hard to fit it into that room – now it would have to come out! And as the deadline neared to bring David home for his birthday, we modify our plans repeatedly, adding or taking away items that changed. But our goal never wavered, the one that would bring David home permanently.
Dear friends continued to send inspirational quotes and others sayings…“The Journey of a thousand miles begins with one step.” – Lao Tzu
This was definitely going to be an epic journey.