TBI Rehabilitation – Stage 2: The impossible goal of walking and regaining your ‘sense of self’.

   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 david walking March 07the 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.

 

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!

 

 

 

You never fully understand TBI (Traumatic Brain Injury) unless you live it.

No matter how much you read, you don’t get the whole picture unless you witness TBI firsthand. As we began our education into how the individual is affected, we also learned that it is a life-long learning process. TBI affected our whole family immediately after David’s accident. Since no two traumatic brain injuries are the same, we had to learn patience with not only him, his caregivers and doctors, but with ourselves.

Initially, The Brain and Spinal Cord Injury Association of Florida supplied us with information about various agencies and websites, but along with everything else going on it was confusing and overwhelming so we put it aside. We were still dealing with shutting down and monitoring his company closure. We often talked about ‘while David was sleeping’ we were busy changing his life as he knew it.

In the first book of The Whisper Mystery Series, my character Ellen was told that she had to leave the life she knew to live a new one; that her family would have to do that if they were going to survive. In reflecting back on this time, we were likely going through the grieving process and the emotional roller coaster that followed was hard to deal with. In essence, we lost our son the day of his accident…but a new person was taking his place and we were determined to love him no matter what. And we were just beginning to think about what that meant.

It was February 1, (almost 5 months after his accident) when I spoke to David’s case manager from our home in the north. They were conducting ‘pudding trials’. David had not eaten by mouth for months and the facility was unsure if he could swallow without choking, so they slowly introduced soft foods.

Several days later, David’s wife called in a panic because the facility wanted him moved. The 100 days of skilled nursing was over, his medical insurance will cease payments, and we need to find another place for him. This information was not consistent with their Monthly Client Assessment Reports. What they didn’t tell us was there were ‘cabins’ located on the facility grounds that were used for ‘step down’ patients. They didn’t have room for David…but we convinced them (via his insurance company) to keep him in the acute-care section until one opened up for him…and miraculously – one did the next day!

By the end of February, my husband agreed that I should return to Florida to keep an eye on things. My sister and I wanted to be present for David’s appointment with his neurosurgeon, anxious to know there was progress. We wondered what the rehab facility was talking about, because the CT scans showed a marked difference from December to now!excercse room

In the exercise room, David’s hand was no longer ace-bandaged onto the handle and he looked more content, followed directions, and smiled when he recognized us; but the progress was agonizingly slow! I felt an overwhelming sense of pride because David was fighting to come back so he didn’t remain a prisoner of his injuries.

The facility gave us the cold shoulder and we chalked it up to the medical insurance company, our requests, and questions, but when we located his case manager, he said David waved at him yesterday…and gained a pound.

I equate David’s being held captive in the facility and in his wheelchair (and perhaps his mind) to what my character Ellen felt like (in book one: The Ancient Whisper) when things were so out-of-control for her. In David’s case, we saw the spark in his eyes, his determination to move forward. We also witnessed his frustration with physical therapy and we wondered why they were not working more with his legs.

We didn’t want to think ahead to the ‘what ifs’, nor did we (is this denial) want to believe David would not recover, so we mustered on, one day at a time.

Rehabilitation; the start of a long journey for the TBI (Traumatic Brain Injury) Survivor and Family

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 pphoto 4hysical 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.

Recovery from a TBI (Traumatic Brain Injury) – there is no quick fix!

As parents, when our children scrape a knee here, an arm there, we bandage it with care, dry their tears, and make chicken soup. Unfortunately, David’s injury was not that easy to fix. When he first arrived at the acute-care facility (within the rehabilitation center) in early November, we thought it was the light at the end of the tunnel. We were anxious to see David recover quickly, we celebrated the smallest indication of improvement. At first, he did, but by Thanksgiving we weren’t so sure what was happening to him and were a little more than disappointed.

The monthly CLIENT ASSESSMENT REPORT provided by the facility did not indicate there was anything wrong and they went ahead with plans to return him to the hospital in early December. He would have a second craniotomy to repair his ‘bone flap’ (the portion of his skull that was removed during his original surgery that allowed his brain to swell). Over the next few weeks, we noticed that David began to digress back to a vegetative state. No matter how much we read and talked to him, or aggressively exercised his contracting legs and strapped him into leg braces, he was fading…

By the end of December, it was evident something was seriously wrong as his face drooped oddly and he was mostly unresponsive. My sister and brother-in-law stepped in to review his charts and noticed discrepancies on his CT scans. They quickly contaAcute-Carected David’s Neurosurgeon team to alert them as to his condition. Because of this intervention, David headed back to the hospital to have a VP shunt put into his head. Afterward, we learned that if this fluid (hydrocephalus) continued to build up around his brain, we could have permanently lost him.

David’s case managers changed every few months. We also felt them pull back, especially when we wanted to question things and we would often station ourselves in the hall outside their office. Once they appeared, they would say he had plateaued. We did not agree with their assessment! They were also in a continuous fight with his insurance company to justify his continued treatment there. In reality, if they didn’t see a certain level of progress, David would have to move elsewhere; did we have a place in mind? We simply couldn’t understand this mentality as we were clearly seeing progress. David’s insurance company assigned a case manager as well. We spoke often and she continuously reassured me that they would never kick him out.

Although the accident took his ability to speak and remember things, (due to amnesia and aphasia), David began to recognize us, often smiling and waving as we came to visit. It was during these times that we felt our effort was well worth it.

In the first book of the Whisper Mystery Trilogy, Ellen and her family had to rebuild their lives after tragedy struck. Because Ellen is a strong character, she met her challenges headlong. That’s how we saw things as a family. But it wasn’t just our challenge; it was David’s ultimate challenge. He would have to fight very hard to come back to us. This is also when we started to realize that our David would never be the same.

Decisions or Challenges TBI Families/Caregivers Must Make Early-on.

Our first decision was that David was NOT going to stay in bed the rest of his life and we refused to accept the doctor’s prognosis that he would never walk again or participate in life. Our first challenge was to find a facility that would be able to provide the 24/7 care he needed after being released from the hospital. He was not accepted just anywhere, and it was difficult based upon where and who would pay for his care. The closest Acute-Care facility to accept his medical insurance was located nearly 2 hours away. Although it was a long drive, it was within our acceptable parameters.

photo 2

The day David was transferred to the Acute-Care facility (November 9th), we were there to help him with the difficult transition. While I readied my camera…for a split second, David smiled at me and we knew he was ‘in there’, although the lights were dim, we also knew we would walk this journey with him.

During the following nine months, I was able to stay with my sister, who lives in South Florida. In-between caring for David’s 2-year old daughter, there were weekly visits to see him. On off days I called vendors from his company, contacted banks and credit card companies, to let them know about his accident and resolving any debt. Some understood while others were downright rude. I still can’t fathom why they couldn’t grasp the gravity of the situation. I often broke down while talking with them.

David had an inventory left over from his recording studio that was not sold prior to his moving and his dad organized and catalogued the equipment. He then advertised and sold all that he could and the remaining items were taken to the local e-Bay store where they were sold for pennies on the dollar.

Family is everything! Family is a critical element in our ability to care for David. Without them, I don’t believe we could have gotten where we are today. My sister and brother-in-law opened their hearts and home and willingly played a major role in our family drama. Because of their medical backgrounds, they were able to help us oversee David’s medical needs, checking CT scans, and monitoring medications.

My sister dove right in by keeping David as limber as possible, knowing that if his limbs didn’t stay pliable, they would contract. She often brought in cookies and brownies for the staff as a way to show our appreciation, bribing them so to speak so that they hopefully would keep a watchful eye on David.

In The Whisper Mystery Trilogy, the main character named Ellen is able to exceed through the strong efforts of her family. I learned firsthand just how powerful this combination is….you just have to let people help.

The Accident, and How it Was a Game Changer

It’s amazing how quickly a single event can totally change one’s life. One moment you are helping your son move into his new house, and the next you are camped out in a small hospital waiting room that you commandeered to stay close to the ICU (intensive care unit).

Thinking back, I remember the feeling of despair when we first arrived at the hospital. They sent us to a private room and someone spoke to us. I can’t recall what they said; I was in such a numb state, but I do remember the Neurosurgeon saying that the first 72 hours are critical, they will determine if David lives or dies. So we camped out down the hall and waited.

As the days slowly passed, I can’t tell you the number of times I stood at the 4th floor window looking out over the palm trees swaying in the South Florida breeze, pausing to pray and hoping that by some miracle things would go back to normal. We were inundated with such terms as TBI and traumatic brain injury, something called a VP shunt, the Rancho Scale of Coma, medications with names I can’t pronounce, and reality slowly began to sink in. None of us thought about what might transpire down the road. We had a short-term goal and it was for David to live.

As we moved beyond those foggy days, the feeling things were never going to be the same continued to grow. Although we never really discussed it, we knew we had a challenge ahead of us. I always thought that David would snap out of his coma, laugh at the contraptions on his legs, and ask what the heck happened to him, but he didn’t.

After a couple weeks in the ICU, David spent several more weeks in a step-down unit. During this time we saw sparks of life when his hand moved, a fleeting glance or stare that let us know he was still there, trapped in a body that he was unable to control. At this juncture, the resident doctor made his prognosis that David would never walk again; in fact he felt that what we saw, was what we will see in the future. He even refused to accept him into their rehabilitation facility. He was just too unresponsive.

David was now facing the hardest journey of his life. It was then that we decided to take this journey together as a family. We will take each day, each challenge, and each decision…one at a time. In a blink of an eye, our game of life changed….we moved from a planned and comfortable retirement, to active caregivers, business liquidators, and bankruptcy agents, all while learning what TBI means.

This experience has provided me with a great deal of insight about what a person/family goes through when confronted with a tragedy that literally changes their life. In the first book in The Whisper Mystery Trilogy, titled The Ancient Whisper, I equate this time to the dream-state that my character experiences. As the story unfolds, she has to make some compromises and decisions while faced with unsurmountable odds. Just like this character, we began our journey with many questions. Where do we go from here? As the process evolved, we searched to find the answers.

Introduction

David's journey begins after 2-week ICU
David’s journey begins after 2-week Intensive Care Unit

Hello, I am M. A. Appleby and I am just starting out to blog about my family’s journey after my son suffered a traumatic brain injury. A journal I kept the first year of his recovery became the basis for a series of books I am writting called The Whisper Mystery Trilogy.

In my furture blogs, I will relate how David is recovering and how we, as caregivers, deal with everyday issues. As he recovers, writing became cathardic for me by allowing me to regain my ‘sense of self’.

What we found…is that you are not alone in your journey. You may want to visit my website to see how we are doing and what’s up with my books. www.maappleby.com