10 Keys to Recovery: For the Brain Injury Survivor and Their Caregiver:

KEY TO RECOVERY NO. 5: Do Everything in Moderation/Regain Mobility.

Just before we brought David home from the rehabilitation center, he weighed an alarming 89 pounds. They had not removed the G-tube from his stomach as we had asked them to do, so he was able to eat normal food without supplemental feedings.

In my quest to fatten him up, I encouraged him to eat, and eat he did. My brother-in-law had warned me that he might gain weight and to be cautious, but I did not heed his warning. In a matter of months, David had gained a staggering 40 pounds and he needed clothes to accommodate this condition.

David was never big on exercise before his accident, so it was no surprise when he didn’t like the exercise programs my sister came up with. We got around this by inventing things to do around his normal therapy sessions. A wonderful woman gifted us a kayak paddle that was used to stretch his arms over his head, as there was right side deficits. He folded clothes, took my sister’s dog for a walk, washed dishes by hand, and for lack of things to do, even made him take things out of one cupboard to put them into another.

Headaches were an issue at first and they followed a pattern. Trying to analyze just when these headaches would show up, we determined that if David exerted himself too much, he’d have a headache. But he does like to be busy so we devised ways to make him move and that’s where moderation comes in.

I didn’t sign David up at the Y – or a gym, because too much exertion could lead to other things; frustration, over stimulation, or the onset of a headache. We slowly got David off the sofa and out into the world. It takes time and patience, but now he bowls on a league, rides a therapeutic horse at Naples Equestrian Challenge, attends our monthly support group and social events for Miracles Among Us, does volunteer work, and socializes with the Friends for the Developmentally Disabled. I’d say he’s come a long way on his road to recovery, however, his Aphasia doesn’t allow for conversation. He has a job two afternoons a week and he is saving for a new watch.

Traumatic Brain Injury Rehabilitation – Stage 6: Start of New Journey of Recovery ~ Coming Home

By the end of July, it became excruciatingly obvious that David wanted to leave the facility – my greatest fear was that he might ‘go over the edge’, become agitated or aggressive and they would not let him go before we could get him out of there and home with us. The use of the calendar helped him cope with the last remaining days – and we would ask him to count off the days but he wanted to leave now…

At our rented house, I had purchased the medical items the facility approved upon David’s dismissal and everything was properly put into place. We had assembled a wheelchair, walker, bed rail, shower bench, a sturdy handhold for the bathtub along with a handheld spray unit, and the wheelchair ramp was in place at the garage door. All that was missing (besides my husband) was the furniture and household items that were making its way down to Florida from Ohio via moving van.

Ironically, on what would have been David’s 10th wedding anniversary (August 1), my sister and I drove to the facility for the last time – because David was coming home permanently.

Although we talked to David the night before and told him we were coming today, we don’t exactly know where he will be once we get there. It didn’t matter – after today,  we will hopefully never have to return to either the hospital or the rehab facility. On the long drive up, my sister and I talked about what might happen and how we will deal with things once David is under our care. A major concern was how much rehabilitation he will need (or cooperate to participate in) after he is evaluated for therapy tomorrow. His insurance will only pay for so many, so we’ll have to be resourceful.

And we talked about being a caregiver. “What you don’t know,” she said, “David will teach you.” How hard can it be? I raised him once and I can do it again. As it turned out, she was exactly spot on! I took my role as caregiver seriously but I tried not to treat David as if he was an invalid. I just thought of him as recovering from an accident – knowing he needed time to heal and time to learn again – how much time no one knew.

I told David that he was going home when he saw us with his suitcases. My sister and I decided to go to his building to pack up his clothes before trying to locate him. His case manager had obviously ignored our pickup requests. But didn’t want to stick around to argue – we simply dumped the large garbage bag full of clothes into the suitcase and took them to her car.

We found David in the lunchroom with a group of clients and caregivers. His back was to us and as I tapped him on the shoulder, he turned his head. His surprised look and the grin that followed meant he understood that ‘TODAY WAS THE DAY.’ He didn’t need to see us with his suitcases…he knew he was going home. Many of his caregivers were there with him that morning and they each hugged him. They wished him luck, told him to work on his legs, and be careful – no more accidents. It was a tearful goodbye.

On our way out of the main building, David’s case manager rudely instructed us to go to the medical building to collect his medications, and then said to leave the wheelchair in the lobby, and then she walked away without saying a word. At the medical building, a nurse handed us a plastic bag full of bottles and a stack of prescriptions. My sister just shook her head.

We went back to the lobby while my sister went to get David’s new wheelchair. No one came out to help us or came to retrieve the facility’s wheelchair ~ everyone had disappeared! But we didn’t care because the first phase of David’s journey was ending and a new phase was starting.

As we said goodbye to the Spanish moss August 1, 2007 coming home daystrung Live Oaks and the fields of orange groves, it was nearly 1:00 pm. We decided that we were hungry so we stopped at a restaurant we had passed a bazillion times coming or going to the facility. David was genuinely happy to be with us, often reached for my hand to give it a squeeze, and quietly said, ‘thank you’.

The drive back was quiet but my sister and I could tell that David really enjoyed the ride. Once we reached at our rented house, my sister retrieved the suitcases as I wheeled David inside. He was excited to be there, making sounds and saying that he loves this or loves that as I took him from room to room. Then I wheeled him into his room to show him all of his belongings; items and objects he has not seen in almost a year were also there with him.

We were so glad this day had finally come! My sister made dinner and invited family over – conspicuously absent was David’s wife and baby as she had declined to come. We were tired from our busy day so when our company left, my sister and brother-in-law prepared the sleeper sofa – because they wanted to be close if either of us needed them. The next morning, my sister went through the prescriptions and responded with the need to either remove or lower some of the doses, but we’ll need to consult a Neurologist…she knew just the person that she trusted that would work with us.

For several days, David woke up totally wet from head to toe. The adult diaper wasn’t working – so I knew the bowel and bladder program was not as successful as the facility lead me to believe or I had to come up with a plan to limit liquids after dinner…and it’s high-time the G-tube was removed. Now I have two appointments to make – after the insurance company preapproved them.

Therapy sessions were trying, especially physical therapy. David got anxious and he either had mini-seizures, or faked it so he didn’t have to work so hard. He often touched his head, which they assumed was a headache and allowed him to rest. But when he was home, this sort of nonsense didn’t happen.

I began to understand David’s way of communicating and we often had animated conversations about things. One of the more amusing ‘conversations’  centered on the 19” TV that sat on a 4’ fold out table that I purchased to use as a desk. Sometimes a picture is worth a thousand words, so after a few days of this, I handed him a pad of paper and a pencil and asked him to draw what he could not say in words. A few hours later, I had found exactly what he drew and ordered it – we just had to wait on a larger TV. This was an incentive – a better bribe than the candy used to get him into the car for therapy!

We hooked up the webcam and every night David had a chat with his dad, who remained in Ohio. He would join us every 6 – 8 weeks, which gave me time to concentrate on ‘raising David again’.

David was amazing. I David putting new phones together 8-02-07purchased a set of portable phones with a base phone and didn’t know how to put them together. I left the box with him and walked into the kitchen to make lunch – and he had them not only together – but hooked up and working!

And we talked – or mostly David listened and I talked about everything and every three or four days I introduced a new thing – as insignificant as combing his hair to tying his shoelaces – from cleaning his shaver to helping with the dishes. I found things for him to do while sitting in his wheelchair; and ever so slowly, he started to do things on his own. By August 11, the daily tracking sheet I kept stated that he got up on his own, took himself to the toilet, and was dry all night!

I am a caregiver -Triumph at last!

Traumatic Brain Injury Rehabilitation – Stage 5: The Discharge Process Is Finalized.

At the beginning of July, reality began to sink in, as we approached our goal of getting David out of the facility. We had to be organized with our ‘Discharge Plan’ in order to bring David home permanently. It was also abundantly clear that David wanted to get out of the facility, and expressed it in the best way he could every time we saw or talked with him. But my greatest fear was that he might ‘go over the edge’ before we could get him home.

David’s dad was not ready to retire and move to Florida with me, so he rented a small apartment while we hunted for a rental home in Florida.

The calendar seemed to help David with the time he had left at the facility once we established a ‘date of departure’. He could cross off the days and see progress being made. This helped (along with powerful anti-psychotic drugs, an anti-depressant, and a ‘spasticity’ drug) to keep David calm as he was less agitated during his therapies and I grew more confident that he would be okay in my care.

When we could not communicate with David because the phone was busy, when he was in therapy sessions, or when the phone went missing – it was eerily disturbing to me and I could only imagine how he felt when we knew he expected that call every night. One day, I got the urge to call the main switchboard to ask if someone could take a message to David. Then I composed one to Occupational Therapy – to call me during his sessions so he knew we were thinking of him. My husband thought we should get him a cell phone – but we already knew how things went missing so we nixed it and put it on a back burner to revisit down the road.

While preparing to take care of David in Florida, we worked feverishly to resolve the financial issues created by his accident. After consulting with a lawyer, it made sense to file both personal and business bankruptcy. Her advice was to let his house go into foreclosure. Purchased during the height of the market and caught by the housing bubble, they were victims of the predatory loan scandal, maxing out both their mortgage and home equity loans…a poor choice at the time even though my husband tried unsuccessfully to deter their decision to purchase the home, they went ahead anyway.

Working through the liquidation of the business assets and bankruptcy filing was both a rewarding and depressing challenge for me. It was surprising that many of his creditors understood the circumstances and were willing to right off the debt. It renewed my hope in people helping others, while others held fast and even threated legal action. What the vendors didn’t forgive would need to go into this filing. After all, we were coming to terms with the reality that David would not return to work any time soon, if ever. Fortunately, his wife was able to keep her car by continuing to make payments so she could work, but every bill went into this as well.

I took charge of coordinating and documenting everything coming into or out of the special fund we set up to take care of the medical bills that now flowed into our new house. During this time, David’s wife continued to become more distant and at one point was more interested in transferring him to other facilities within the country as far away as Massachusetts or Chicago. Although we never discussed it, I believe she thought we would not be able to take care of him at home and was probably less than thrilled with the prospect of helping me.

But I saw hope. There was a twinkle in David’s eye and the old David lurked just under the surface. I empathized with the frustration of being held captive by the casts that made movement almost impossible and the daily dose of mind numbing drugs. I could not wait to get him home because I knew it was only a matter of time before his legs would get stronger and he would walk again.

Just before David’s “release”, my husband left a disturbing message on my cell phone one night. He said that when he talked with David, he was upset, and he wanted to come home – he told his dad – “Get me outta here.” And he assured him that we were doing everything within our power to do that…but he had to be patient just a little longer.

On July 25, my sister, brother-in-law, and I went to Ohio for a fundraiser, given by our family and friends. Going back to Ohio to participate in it was emotional and I will forever be grateful for those who contributed and made us feel so loved. We are blessed to have great friends – they organized the raffle at a local winery just to help David, with all proceeds going to his fund. It was a wonderful event and the out-pouring of concern and love was truly overwhelming. In fact, the winner refused to accept their ‘prize’! This made it possible to continue David’s rehabilitation beyond the 20 days his insurance would pay. When we talked with David that night, we told him – only 7 more days to go!

My sister and brother-in-law flew home and I stayed to pack up my house. I had three days to get this done! Although it was good to be home, it was for the last time. We divided the furniture, some would come down to Florida, some would go to the new apartment, and the rest went to the Salvation Army.

We knew going in that my husband would stay in Ohio for the next two years until he retired. We would sell our northern house, and eventually look at the possibility of purchasing a house in Florida sometime down the road. We had imposed upon my sister and brother-in-law far too long. By mid-July, we settled on a house to rent that had three bedrooms that was half-way between my sister’s and the hospital. This was large enough for me to handle and could accommodate David’s wife and baby – although they would have to share a bedroom.

When we discussed this living arrangement with his wife, she informed us that she wanted to stay in the house they had purchased, at least as long as she could, then move to a condominium closer to her work. This is when we realized she planned to move on with her own life and move out of David’s.

My husband and I mourned the loss of the son we knew but started to embrace our ‘new David’. We also felt a profound sense of loss for our daughter-in-law. Even though her leaving angered me and it will be a long time before I forgive and forget what she did, it still left a ‘void’. The saddest part was watching the clear pattern that took shape as she checked herself out of David’s life to move on with own.

We continued to resolve medical insurance issues as new ones popped up. We had to deal with home health care, getting our home ‘wheelchair ready’, ramps built, sessions in physical, occupational, and speech therapy in place prior to discharge. We needed preauthorization by David’s medical insurance case manager in order to proceed with their ‘discharge’ process.

During this time, an inspirational saying came across my desk. “Happiness is when you think what you say, and what you do are in harmony.” Mahatma Gandhi

The family continued to call David each evening and to our delight, he began to talk more and more, and although most times it was just a whisper, he often asked when we were coming and what time we would be there. He still thought that every time he saw us we were bringing him home – and we imagined that his anger stemmed from the fact he was still there. We tried to reassure him that we were putting things in place and we were getting close to our new date of departure – August 1. Because of his loss of short-term memory – he asked repeatedly.

There was so much red tape it made me want to scream! But we struggled through the final paperwork for David’s release from both the facility and the medical insurance company. The biggest irritation was the fact that the G-tube (which was no longer used) had not been removed. This was another example of how the system was not conducive to addressing issues. They continued to assure me that it would be removed and I became frustrated by the facilities’ double-talk.

As the days ticked by, we told David how many days were left before we would come to get him. We already knew that it would be a challenge but we also thought of it as an adventure. As depressing as that seemed, we began to look forward to rising David again. “We’ll do it right this time…,” my husband said.

Back in Florida on July 31, I called to tell David he had one more day to go!

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!