TBI Rehabilitation – Stage 1: Don’t believe everything you hear.

After enduring months on the emotional roller coaster called life, our persistence began to pay off as David showed small, but positive signs of progress. He was upgraded as recovery took place, from acute-care to what is called Stage 1 Rehabilitation. This is when the patent has a daily routine of exercise and activities designed to rehabilitate the areas of every-day life called occupational therapy (O/T), speech, and cognition (Speech Pathology), and physical therapy (P/T).

In March, I returned to Florida to keep an eye on the liquidation of items at the E-bay store while David’s dad stayed in Ohio to work. We wrestled with legal issues associated with the shutdown of David’s company, all the while continuing our family’s oversight of his recovery.

Family visited the facility at least twice a week like clockwork, and either my sister or I called David’s case managers during or after our visits when they were not available. When David moved from area to area within the facility, new case managers were assigned. Each time that happened we had to reestablish a relationship with that person and make him/her aware of our expectations.

Shortly after the move from acute-care to post-care, the doctors at the facility prescribed drugs to keep him calmer but it just made him drowsy. We initially saw the benefit of this, but later began to wonder if it was done to eliminate the cost of a one-on-one or to cooperate during rehab sessions. Again, we had to trust these strangers. Disturbing issues started to crop up on the Client Assessment Report. Depression was mentioned and David’s weight continued to decline – which made me extremely worried and stressed.

David became highly agitated when taken to P/T and did not want to cooperate during other sessions. We totally got that! He didn’t want to be there, but his inability to speak (termed Aphasia) hindered most communication. We now know that the P/T exercises were extremely painful to him and he was swearing at them but no one could understand what he was saying.

It became a comedy routine as we tried to think up new ways to get him to his therapies. The ramp leading to one building had a guardrail that we tried to bypass because he would hang on to if he could reach it as it was at the right height to grab from the sitting position of his wheelchair. Or he would motion that he wanted us to go left…and we would go right and the comical process of hand motions would go on until one of us could convince him that everything was okay.

As wearisome as this was, the fact he was fighting back was wonderful. His grip was amazing, showing us his upper body strength in reaching beyond his chair. But it also revealed that he had an understanding and awareness that was not present before…and we saw the possibilities emerge. This behavior persisted and we had to be creative in how we got him into and out of the buildings, and eventually we had to hide our cars so he wouldn’t try to make a “run” for it in his wheel chair. We saw this as all part of the recovery process and as difficult as it was to witness; we were committed to seeing it through.

it's okay to be silly

David had a funny side to things and as a child; he went out of his way to be ‘the clown’. When he was in a humorous mood one day, he took a set of nose/glasses with a mustache attached and put them on, then gave us thumbs up. We let him know it was okay to be silly and it was reassuring to know that he still had that.

It was during this time, that we began to see what we later termed the’ checking out phase’ of David’s wife. The more we became involved, the more she seemed to back away. We believed we had the same goal, which was to get David walking and out of the facility but it turned out she was not on board with some of our goals. Our concerns were compounded by the lack of information that we received, then later learned was being sent to her and not always passed on to us. Although a common occurrence with spouses of TBI victims, we did not realize this as a red flag that would eventually end David’s marriage.

Then a demand came from the facility to submit names and times of who would visit by Thursday of each week…and it became obvious they no longer wanted us to interfere. We were determined, however, to continue our oversight, no matter what the facility thought. Their dysfunction between staff and doctors would not deter us from our mission – which was to see that David received as much therapy as possible so he could continue to improve and move forward.

Since recovery from a TBI (Traumatic Brain Injury) is a marathon of sorts, we decided early on that we were in it for the long haul and felt that as a family, it was important to stay involved with every aspect of the rehabilitation process. My sister tried to establish a time-line for when David might be on a bowel and bladder program that the facility agreed to start with the first Client Report. We had many ‘plans of action’ and had to revise them when it didn’t work out but we kept at it until we found a solution. That’s what families do…they stick with it and don’t give up!

Every so often, we would broadcast e-mails to family and friends while David’s dad provided update’s to his coworkers, to let them know his progress. Their support with cards and e-mails kept coming and we truly appreciated and felt blessed by this constant communication. Once again, the need to stay in touch with family and friends and avoid isolating yourself, seek support groups if you are having trouble coping with issues.

As the characters in The Ancient Whisper readjusted to a different life after a tragic accident suddenly propelled them into another state, we were adjusting to living in another climate. We struggled with unpaid bills and everyday issues, and dealt with the insurance company, invoices from the facility, hospitals for previous stays, ambulances, CT scans…the bills were starting to mount. But somehow, we were seeing progress.

A dear friend gave me a plaque that reads: “Never…Never…Never Give Up!” by Winston Churchill…and we never will!