10 Keys to Recovery: For the Brain Injury Survivor and Their Caregiver: KEY TO RECOVERY NO. 4: Retrain Your Brain.

Through the years, we have learned about neuroplasticity, and how it plays a role in the recovery of a brain injury survivor. This is the term that refers to changes in neural pathways, which could be due are due to changes in one’s environment, behavior, as well as changes resulting from bodily injury. Actually, anyone can benefit from this…especially as we age.

Mind Games:  There are many things available to stimulate and retrain your brain. We used several suggestions that Dr. Jill Bolte Taylor, a neuroanatomist who lived through her own stroke used to help herself come back. (My Stroke of Insight: A Brain Scientist’s Personal Journey.) Some of the activities she used to regain her memories, were adapted for our son when he didn’t seem motivated.

In general, puzzles, brain teasers, and matching games are a great way to stimulate your brain. Watching uplifting programs, listening to CDs with healing messages are also ways to promote healing and creativity. David does the daily search-a-word puzzle in the newspaper, and seems to enjoy his adult coloring books, often uses his tablet to do free puzzles, memory, and matching games.

We originally communicated with David by writing short notes to him. He had a laminated color-coded placard that told him what medication he was supposed to take each day. Then we wrote notes and taped them to his bathroom mirror as to how to do his grooming, etc., and then added notes to cupboards in the kitchen, when certain TV programs were on what channel, added notes to the dashboard of the car, and even ones for the refrigerator and freezer doors!

 Music Therapy:  David was an accomplished guitar player before his accident. He sold his ‘riffs’ to musicians who came into his recording studio to lay down tracks for their original albums. Because music had been such a large part of his life pre-accident, I went in search of someone who could work with him. Eventually, we found a teacher who had enormous patience…who knew David could read music and worked to help him regain (or retain) that part of his brain in order not to lose that music side of himself. It helped restore his confidence, although he has since given up his ‘lessons’, he does practice once in a while.

Eventually, we found a teacher who had enormous patience…who knew David could read music and worked to help him regain (or retain) that part of his brain in order not to lose that music side of himself. It helped restore his confidence, although he has since given up his ‘lessons’, he does practice once in a while.

10 Keys to Recovery: KEY TO RECOVERY NO. 3: Consider a lower medication dosage/ monitored by a Physician/Neurologist.

This will be a short blog, but is about a big subject. It is a very tricky issue concerning what we (my sister and I) thought was holding David back from participating in his therapies. These therapies were what he needed to get his life back, however, when we brought him home permanently from the rehabilitation center, the doctor there had prescribed a large dose of a medication to keep him calm.

David often seemed to be in a fog and it threw up a red flag as far as what we needed to do for him. Please do not misunderstand me, I am not saying that you should stop taking your medication, what I am saying is that all medications have side effects and you should be aware of them. In David’s case, we all felt that if we started to lower one type of medication, in all probability, he would remain more alert. If he was more alert, he would participate more fully in his therapies–at least that was the goal.

When we visited David’s new neurologist, my sister broached the subject for reducing one of his medications and together, then we devised a plan to incrementally reduce several medications over almost a year’s span, or in the case of one of the medications, reduce it altogether.

David’s neurologist agreed that he was mostly asleep because of the amount of medications he was on. We (my sister and I) explained that David seemed ‘out of it’ most of the time and we wanted him to participate in his therapies. He would simply fade away by closing his eyes or hold his head…so it was important that we intervene on his behalf.

I can’t stress this enough…the right dosage and the right medication is key to anyone’s health …too much of a good thing is not a good thing at all, so again, this MUST be monitored by a physician or neurologist.

If you want to reduce your medication dose, you cannot just stop taking it, especially if it’s a controlled substance! If your doctor agrees, he/she can help put you on the path of reduction. As we were told, a person can be placed on a medication one day, but you cannot stop taking it cold turkey…it has to be done over time and done slowly.

Not only did David ‘wake up’ from his stupor, but he began to participate more in his rehabilitation and therapies. This stupor reminded me of what we, as a family, had to cope with when David was first injured, and probably why I wrote this into the very first chapter of The Ancient Whisper.

10 Keys to Recovery: For the Brain Injury Survivor and Their Caregiver: KEY TO RECOVERY NO. 2: Practice dental hygiene and Good Nutrition:

This may sound strange to be talking about this, but it was a real issue for us. David couldn’t open his mouth wide enough to brush his back teeth. Although he had seen a dentist during his time at the rehabilitation center, and I took him to one after we moved to Naples, it took a 3rd dentist to track the source of his pain.

We learned the hard way, that the extreme pain we thought he was experiencing, because of his accident, was due to abscessed wisdom teeth. This naturally lead us to make healthy food choices.

The other part of this key is to become knowable about good nutritional practices. Do you remember the food pyramid? It has changed through the years, but your best bet is to ‘eat the rainbow’. By that, I mean…choose fruits and vegetables that are colorful and make them the largest portion of what you eat. Go online and search different ways you can achieve this.

One of the ‘filters’ missing from David’s brain is the ability to know when he is full. I plate our food and put it on a smaller dish to avoid overeating. But this is almost impossible to control when we are at a restaurant. If given a choice, he would reach for a can of soda instead of water and this worries me. Someday, I won’t be here, so I am teaching David to make better choices, however there are times that impulse takes over and common sense goes out the window, such as it did a few months ago. We were at an event and I turned around to see him holding a snickers candy bar. I must have made a face and he slipped it into his pocket. His dad later told me that it was actually an ice cream bar – luckily for him, the package didn’t leak down his pant leg…

If you live with a person with brain injury, they may think the word you use means something completely different. An example of that would be when we are grocery shopping. I’ll give David a list and ask him to find the items. David’s grocery list:   apples, head of lettuce, protein bars, mouthwash. I don’t just let him lose in the store because he gets frustrated because apples can translate to tomatoes because they’re… both red and round.

A head of lettuce could become a head of broccoli and vice versa, the protein bars can be anything in the munchy isle while mouthwash is simply David standing in front of the wall of toothpaste and mouthwash and all things dental with a quizzical look on his face.  Actually, I find myself doing the same thing.

And even though it’s not on the list, David manages to get 2 cartons of ice cream into the cart when I turn my back. If you live with a person with brain injury, you might find the toilet paper on the work bench in the garage, the eggs in the freezer – no wait, I think that was me…you might find the shampoo in the closet and the mayonnaise under the bathroom sink. These are true stories, really.

Sometimes I ask for a butter knife and he’ll hand me the butter dish…You see, he’s getting closer.

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

As our family worked through issues, it became apparent that some of us were experiencing denial. By that, I mean, we were still hoping that our old David would miraculously show up, and when that didn’t happen, we began our slow recovery as we worked through our grieve. We have been told that what we were experiencing was a normal response to a life-changing event. By working through problems in a systematic way, we managed a difficult situation.

Key to Recovery No. 1, part 2: Handle denial and then move on.

Part two is understanding what Denial means and what/how you and your survivor are able to handle it. It’s there, just under the surface, but it’s there, nonetheless. Denial is a small word that can trigger a big emotion, an episode, or an all-out war, if it isn’t kept in check. It can become your worst enemy as it can decrease your mental efficiency by way of a tradeoff. That tradeoff is when you or a family member – or even the brain injury survivor – refuses to accept the truth of the situation.

In the article Emotional Stages of Recovery, (written by Dr. Glen Johnson, a Clinical Neuropsychologist, it lists denial as the second phase in recovery after confusion and agitation. People who suffer head injuries say ‘there is nothing wrong with me’ and the medical system unknowingly supports denial when they say ‘go home, relax for two weeks, and everything will be better’.

The brain injured person may say – ‘I can drive’, and this can stir up huge arguments…as it has at our house. Within two weeks of bringing David home, he tried to tell me that he wanted to do something, but I just didn’t get it. So one day, after he made hand gestures while we were both in my car, I asked him to show me the next day.

To my surprise, the next day, he motioned that he wanted to go out into the garage. He wheeled himself around the car and tried to get in, so I just let him. Then it dawned on me that he wanted to drive – so I let him do that because he had a valid driver’s license at the time.

He very carefully backed out of the driveway and drove the car around the cul-de-sac, and back into the garage. He grinned, and we all thought that was the end of it, but years later, and in words we all understood, he wanted not only to drive again, but he wanted to buy a car.

This has been something David has fixated on, and he doesn’t seem to understand that he may not be able to drive again because of his brain injury. He never made it onto the highway all those years ago, and none of us believe he can navigate where we live now. He then gets angry – at himself when he realizes his life has changed.

We took David to see his doctor for an evaluation, and he politely and gently told him that…‘he is not cleared to drive.’ We thought that if he heard it from someone else, it will help him realize that the changes he has experienced has limited his abilities.

Not everyone is cognoscent of what is involved with brain injury, and we often sweep things under the rug when we don’t understand what it means, but when you conquer this, you will be able to move on. We all thought David had moved on, but he has not moved on from wanting to drive and own a car. We all hope that one day he will.

 

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

As usual, life events get in the way of the best laid plans and that is what happened to me and my blog. It seems that no matter how much I want to share our journey; it will not happen unless I just do it! So, starting now, I am making a commitment to everyone that I will discipline myself and blog on a more consistent basis.

In previous blogs, we covered a lot of ground, but it was mostly related to the period of time just after David’s accident. Now I am changing my focus to how we have been coping during our almost decade of working with David and watching him slowly regain his new personality.

Then I want to share our 10 Keys to Recovery – something we practice on a daily basis. This is what works for us as a family and helps us address difficult issues as we continue to learn about brain injury.

KEY TO RECOVERY NO. 1 – part one: Grieve for the sense of loss of who you were.

As a family, we didn’t know that as we were going through the ‘stages of grief’, that David also had to come to terms with his own ‘sense of loss’ of who he was. It was through trial and error, and we now know that David’s journey of recovery will not fully begin, until he forgives himself, because somehow he feels that he’s responsible for his accident.

He asked me recently why he stood up in the moving vehicle. My answer to him was that it was simply an accident…when you forgive yourself, you can move on.

David also exhibits anger, but the anger is not directed toward me, but toward himself. Why do people with brain injury do this? Is it so that they don’t have to feel pain? Is it a smokescreen? We have been told that being angry is okay, as it sometimes temporarily protects us from having to recognize and deal with our painful real feelings.

Life is a journey, when it throws you off balance, give yourself time to grief, then straighten yourself up, and get on with life. It is not the end of the world…for some, it is the beginning.

David: play his guitar, helping around the house, continues to this day, to overcome the aphasia part of his injury. On occasion do we have to redirect his attention that comes with the ‘Swiss cheese’ affect, that has robbed him of some of his memories and his ability to recall things.

As David slowly remembers his former life, he goes back to grief about it. It’s unnerving to talk him through whatever is bothering him. It does not help to question why he is sad or try to reason with him. So the best thing we can do is tell him that we love and support him, then walk away so he can work through it.

We are all slowly regaining our ‘sense of self’, which allowed us to focus on other aspects of life.

Traumatic Brain Injury – what happens now?

Many months have passed since writing the last installment of our journey through Traumatic Brain Injury. It would be tedious to regurgitate what we have been doing since discussing my role as a caregiver – instead, I’m going to change from that to what we are doing now in order to move forward. These discussions will also be much shorter – as life intervenes – there is less time to dwell on it.

We visit the 10 Keys to Recovery (which were listed in the last blog) nearly every day, touching upon at least one of the items – whether it’s learning to retrain our brains to having patience with someone as they work through a difficult situation.

David still has not fully grieved for the person he once was because there are times when he suddenly ‘recalls’ something only to be sad…at which time he withdraws and slips into his bedroom for a little nap. When he wakes up, he is calmer and more settled.

If you live with someone with a brain injury, your life has also changed. My advice is to learn what you can to help the other person that you care for, but never lose sight of the fact that you too, need time to ‘care for yourself’.

I am now working on a series of lectures to accompany the books I wrote to help promote Brain Injury Awareness. I did not know that my journey of recovery mirrored my son’s. With the last book written in the trilogy (A Whisper Mystery Trilogy) I finally have closure. My only hope is that David will find peace because he still questions why he had his accident in the first place. Only time will tell…

Traumatic Brain Injury ~ My Role as the Caregiver.

The general description of a caregiver is someone who is responsible for the care of a mentally or physically disabled person, or whose health has been impaired by sickness, old age, or an injury.

Caregivers often have different conceptions as to what this role means. They might manage medications and talk with doctors and nurses on someone’s behalf. They also help with daily activities, take care of household chores, prepare meals, or help with financial matters.

(Do not confuse care giving with power of attorney or guardianship and will be discussed in future blogs.)

Accepting a role as a caregiver means you and your family need to be flexible, very flexible. The first month David was home with me, we learned how to rely upon each other and this gave me a new perspective on life. We also learned that life-changing events do not consider your convenience.

David’s dad had two years to go until he retired. We were in uncharted waters both mentally and financially and we needed every bit of income coming in, so he stayed in Ohio to work while I began my journey as David’s caregiver. And every night around 7 pm, we could count on either a phone call or video chat from him. David often checked the clock anticipating these calls. It’s something we do to this day if one of us is out of town.

The first months were the most challenging as far as how I coped with getting the foldable wheelchair in and out of the second door on my truck, and navigating through life with a person in a wheelchair.

By mid-August, I no longer had the energy to write in the journal and instead made a form called a daily sheet to keep in a binder near the telephone. This was a way to capture what was happening in our lives, what worked, what didn’t. It was also a way to track medications, foods, and activities that I shared with my sister and David’s doctors.

On September 2, my daily sheet stated that David walked around the house today because I hid his wheelchair again. Then he asked me to ‘help’ him as he was experiencing one of his headaches.

Headaches and/or stabbing pain are unfortunate side effects of TBIs. In order to stop the ‘buzzing’ in his ears (which I understood David through gesticulations and his way of getting his point across…I attempted to reduce the over-the-counter medication his doctor said to use, cutting it back to one capsule instead of two. I reasoned that it might have been responsible for his bloodshot eyes, a disturbing development that was difficult for me to observe.

David had rehabilitation therapies three times a week and the other days I sitting outside on the lanai 8-07invented ways to get him out of the house and moving. Of course, that meant schlepping his wheelchair in and out of my truck. On one trip to the grocery store, I pulled up to the front entrance and asked him to go in and sit down on an electric cart while I parked the car because I knew he could walk a short distance. From that day until he no longer used it, David could walk into any store and figure out how to use their carts within minutes.

There were times people would shout at David when greeting him. I remember saying that there was nothing wrong with his ears. Other times, people would try to talk to David and when he didn’t respond, I would say that his brain was on delay, like the windshield wipers on a car…traumatic brain injury accident, you see.

Finding information was not an issue, as we were inundated with it after David had his accident. Perhaps I just wasn’t ready to read it or it was overwhelming, or I didn’t know what I needed to know…but whatever the case, it sat in a cardboard box near my desk. Occasionally, I’d reach in to read something; my intention was not to discard anything because eventually there was often a ‘nugget’ that could help in some way.

One of these ‘nuggets’ came in the form of seven little pamphlets titled, The Road to Rehabilitation. Starting with Part 1: Pathways to Comfort: Dealing with Pain & Brain Injury that dealt with several issues we were struggling with, mostly the pain on the left side of David’s skull. This was about the time when my sister and I, along with his Neurologist’s directions, began our ‘medication reduction campaign’. (Note here that this is only one month after we brought him home permanently.)

As it was explained to me, your doctor can prescribe medication, but if they are certain muscle relaxants and antipsychotic drugs, they must be reduced incrementally…or as in David’s case – he became Dr. Jekyll and Mr. Hyde. Don’t do this without a doctor’s instructions. It took a step-down of dosage every 6 – 8 weeks; it is not an overnight process. I am convinced that if the person has the correct dosage, that person can live a full life – but if the dosage is off – you will have a completely different person to contend with!

My daily log sheets go on until the end of June 2008. They are tedious even for me to read so this is where I stopped including them in my writing but more importantly, David had so many significant achievements that happened so frequently, it was difficult to document everything.

I’m going to change the focus of my blogs slightly from a chronological journal of David’s progress to sharing the information I discovered as his caregiver. This is prefaced by the fact that everyone who suffers a traumatic brain injury may be at different stages in his/her recovery and so most certainly the ‘care giving process’ will be different for each individual. No two injuries or recoveries are alike, period.

The role of the caregiver is an important one in the life of any injured person but it takes on a completely new meaning for those who have suffered a TBI. This TBI survivor learns to depend on their caregivers many times over for everything and it is our job to teach (or reteach) them how to move forward with their ‘new life’. They most certainly are not the person they once were, and it is important for the caregiver to ‘let the old person go’ in order to embrace the ‘new person’ they are now. This was/is probably the hardest thing I had to do and I continue to wrestle with it daily.

I found strength in my faith and the information, as they are powerful tools as you learn what to do for your loved one; you also begin to feel more empowered and peaceful. It is a learning curve, to say the least; there is no magic pill – no analytical formula that will work for everyone. You just have to try things and tweak them until you find what works. Sometimes, the cure is worse than the ailment, and you will find yourself frustrated right along with them, but for the most part, just keep plugging away because eventually there is a ‘light at the end of the tunnel’, you just can’t see it yet.

I feel extremely lucky that David mostly understands what I try to teach him and if this is not your case, it is not my intention to flaunt our success, rather I hope that my writing helps in some way to either steer you to the right information, or onto a path where you can succeed.

In a note I wrote to myself on January 8, 2008, David started to recall things. He tried to tell me he wanted to go but could not tell me where, so we got out his photo albums that were started after his accident as a way to help him remember things. He pointed to his house (that went into foreclosure) and truck (that I sold). I told him that they were gone and he became almost inconsolable and I cried along with him. As I reflect back upon this time, this is probably where the stages of grieve started…

The next day David was sad but not as bad as the day before so we went through the albums again. I put his favorite movie in the DVD and he watched 50 First Dates. When the movie was over, we both sat and cried – but it was another opportunity to talk about sadness and the changes in his life, what happened to him and this allowed him time to grieve for what he had lost.

Reading further into those notes, it says that I told him that he was given a ‘new life’ and it will just take time to adjust to it. He asked, how long…my answer was that no one could say…I could see in his eyes how frustrated and sad he was, but this gave me hope that we were moving forward.

The following keys may help you on your journey of recovery – they certainly helped us. David would give these two thumbs up – his way of saying ‘it’s all good’!

Keys to recovery for the survivor of (Traumatic) Brain Injury and their Caregivers:    

  1. Grieve for the sense of loss of who you were
  2. Handle denial and then move on
  3. Consider a lower dosage of medication/monitored by Physician/Neurologist
  4. Learn to re-train your brain
  5. Do everything in moderation
  6. Have patience with yourself and others
  7. Use humor wherever possible
  8. Care for the caregiver, thanks are always appreciated
  9. Embrace the ‘new you’ and accept the ‘new normal’
  10. Don’t forget to smile

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!

Traumatic Brain Injury Rehabilitation – Stage 4: The Facility Discharge Process and our Goal Plan to bring David home.

During the month of June, we started the process to have things in place so David could celebrate his birthday at home. Unfortunately, most of my time and energy was spent responding to the medical insurance company questions concerning his progress and they were starting to deny payments.

On June 5, my sister and I packed up the car with our usual cooler and then added birthday cards, a banner, candy bars, and pudding cups. Even though I was grateful the traffic was light that day, I still dreaded the long drive. The good news was that the facility was finally working on the ‘bowel and bladder program’, a critical step toward getting David out of there. When we arrived, David was taken to the restroom located within his room so that his caregiver could document and track his progress. When she finished, she handed me his folder and said we would be his caregivers that day…all we had to do was follow the schedule. If he needed the restroom, we could bring him back and someone would help us.

My sister and I took David to the exercise room, careful to skirt the perimeter of the building to avoid the metal railing so he couldn’t hang on to it. As an intern settled him in for a workout, we had the opportunity to discuss his upcoming visit on June 10 with his case manager (we felt we were often invisible to David’s case manager) who this time didn’t avoid us, a refreshing change and a positive sign. This lack of direct communication was an irritant in an already volatile situation that made me want to run in there, grab David, and put him in our car and drive him the hell out of there! And in comparison, the problem stemmed from the fact that the facility could transport David to his home, but not back to the facility. We didn’t see it as a big deal but an opportunity to stay overnight and do additional observations.

As for the ‘swallow study’, another critical step towards David’s release, his caregiver said if they put ice in the glass, he would drink his supplemental meal which was given him if he didn’t consume enough food during the day. This was interesting because David was never a big eater and we could see for ourselves that he was eating. Later when we brought him in for Speech Therapy, they informed us that he didn’t always eat everything on his plate during his regular three meals a day, thus the supplemental.

After physical therapy was over, we took David to the dining room where we were able to join him for lunch as family or visiting friends were always welcome to eat with the ‘clients’. Food service was not the typical cafeteria style, but rather a server pushing a cart with plates who passed them out to those who were seated; drinks were on another cart circulating around the perimeter. When a plateful (even I couldn’t consume in one sitting) was placed in front of David…he didn’t eat from his own plate, he picked all the chicken off mine and left his alone. (I was thinking to myself that he had already consumed food during the swallow tests…and really…who could eat those huge portions!)

My sister and I shared a glance and at this point, we figured David wasn’t hungry and he could be somewhat depressed – or it could be the side effects of his new medication. Then a picture started to solidify and I wondered what he might be thinking. Lunch came to a halt when David put down his fork and refused to eat anything else. But we encouraged him to drink as his cheeks bulged with food I knew he squirreled away like a chipmunk. He actually still does this on occasion and he doesn’t like it if we ask him to slow down.

 

There was another session at one o’clock and I dreaded what would come next so we allowed David to return to his room for a brief rest. During this time, we were pleasantly surprised when he paid attention as we spoke to him about his upcoming home visit. What we hoped to gain was to jar his memory, then we worried we would crush his spirit when we had to take him back.

 

We were astonished at his participation and accomplishment during Speech. He seemed genuinely happy and cooperative and it was a good time to sneak out as a party was planned for other people who had birthdays this week.

We continued to call David around 7:00 p.m. each evening but it was becoming more difficult for us to reach him as there was a single line to his area for guest use and I guess others realized they could also call and talk to people!

coming home for a visitWe made sure things were in place for his home visit by purchasing a used wheelchair, having a ramp made, and doing the things that would make the house ‘wheelchair’ accessible. When June 10 finally arrived, my sister made David’s favorite foods while his wife made him a birthday cake. When the all too familiar white van drove past the house, I ran out to flag it down, and then took a picture as David was lowered to the ground in his wheelchair…astounded at his legs, as they looked so thin and frail. But he seemed undaunted and waved when he saw us waiting for him. After he transferred to our wheelchair, the old one was loaded into the van and we said goodbye to the driver.

After lunch, David’s wife put his birthday cake in front of him while someone lit the candles. As we sang happy birthday, he reached for the flame and my sister gently guided his hand away. It dawned on me that David might have lost more of his memories than first thought and things he learned as a child growing up. And because his injury affected his ability to speak and understand words – he could not tell us. I began to wonder how much he would need to relearn. Putting that thought to the back of my mind, I concentrated on enjoying the time with David, away from ’the facility’. We didn’t go directly to the facility after the party but rather drove around to give David a chance to recall things, going to both his cousin’s and then my sister’s house. At a stop light, he pointed in the direction of where he had installed the home theater nearly 2 years earlier…and we were amazed because the sign for that street had blown away during the hurricane and had not been replaced yet.

As a distraction, we talked on about what we needed David to do before he came home permanently and pointed to cattle ranches, newly built communities, and orange groves on our way back to the facility. Once David was settled, we knew he would be angry if we left abruptly so we told him we would be back the next day and he seemed to understand. We stayed overnight at a local hotel and came back to observe and discuss our options, now that we had some. The home visit made us painfully aware of what we needed to do. Our new plan of discharge was to have things in place by August 1, and at this point, we were unsure if his wife would take care of him.

 

On June 13, the facility called to say David was acting very badly; he got so angry that he broke both sides of his wheelchair. My sister felt it wasn’t a bad thing because we were finally getting an appropriate reaction from him. The odd thing was that they didn’t know what to do except stop his therapy. I suggested that when he does this again, they should call me so I could talk to him. And that seemed to work…

The monthly Client Service Plan/Update Report arrived and it contained the usual information about what each discipline (therapy) expected, what they projected for that goal, and the current state of things. Physical Therapy continued to serial-cast his legs each Tuesday, and then cut them down on Thursday, to be put back together with blue compression wrap until it was time to recast his legs. The good news was that David was gaining weight and participating more although there was again no mention of using his expensive leg braces or reducing his G-tube feedings! This seemed ludicrous to us, as we knew they woke him up at midnight for a feeding even though we had repeatedly asked them to remove it. And why would he be eating 3 meals a day…when they supplemented with feedings??? Were they deliberately ignoring our requests so he had to remain there?

Then the ‘treatment’ team suggested more day visits should occur before an overnight visit was approved and recommended that we take things slow so a transition period can be created for him. My sister and I laughed at this. The last few months David’s case manager was practically in our face wanting to know our ‘discharge’ plan and we wondered if anyone talked with each other because we had sent it numerous times!

Mid-June, David’s dad had a trade show in Orlando and several weeks of vacation coming so he came to Florida early to observe David’s latest bizarre behavior in therapy, which was spitting on the table. When we asked to speak to the Director of Physical Medicine & Rehabilitation (because we thought there might be another way to do rehabilitation other than what we were seeing), all we got were blank stares. We didn’t know it but we had struck a nerve. …regardless we weren’t ready to bring him home just yet.

On June 29, David was moved to another building located on the grounds but well away from the exercise building apparently put there as an outgoing client. Then we addressed our latest and greatest plan: ‘THE GOAL PLAN FOR DAVID’ that consisted of our list of objectives from the facility and each discipline and what items we needed the discharge doctor to order for use at home. Then we had a list that David’s family was working on in order for him to be released from the facility.

I couldn’t wait for all this to end…to finally have David home so we could figure out what he needed and get it done for him. We just knew he would do better in the home environment where we could address issues daily – not the one or two times we saw him weekly. Questions swirled around me: what were we in for and… could I handle this by myself? What if his wife walked away while my husband was working up north, what would I do then?