Creativity in Caregiving

On August 18, 2012, Thomas ("TC") Maslin was robbed and brutally assaulted while walking home in his Washington, DC neighborhood. His attack left him in a coma, fighting a severe traumatic brain injury that has required multiple surgeries. In the nearly nine months following his injury, TC, his wife, Abby, and son, Jack, have worked tirelessly as a team to help recover TC's severely impaired language and physical abilities. Using her expertise as a teacher and former therapist, Abby shares some of the wisdom that has helped guide her husband's recovery and put their family on a path to healing.

Lost. Powerless. Confused. These are just a few of the feelings I experienced in the days and weeks following my husband’s brain injury. As caregivers, we are driven by a deep desire to nurture and protect our loved ones. We want to set them forward on a successful path to recovery, but we are often burdened by hundreds of other tasks that quickly overwhelm us.

When my husband, Thomas (known to friends and family as “TC”), suffered a severe traumatic brain injury last August after being brutally assaulted, I knew his recovery would be arduous. Beyond his physical ailments (which included significant weakness of his right limbs), TC was struggling with a severe speech disability called aphasia. He couldn’t remember simple words, formulate sounds correctly, or even recall the names of friends and family. Although we were fortunate to have a strong team of doctors and therapists, I knew we would have to supplement TC’s professional care with intense work at home.

Like most people whose lives are suddenly changed by brain injury, I knew very little about TBI and the complex wiring of the brain. Prior to this life-changing event, I had been a 4th grade teacher, and before that, a creative arts therapist, specializing in using movement to address the needs of nonverbal children with autism. As I learned more about brain injury, I began to ponder how we could create a therapeutic lifestyle at home. I racked my brain for ideas from my teaching experience. I asked for advice from colleagues in the education and therapy fields. And as I dug deeper in my brainstorming, an underlying theme began to emerge: creativity was fundamental. Living with TBI meant we would have to design our new life both creatively and resourcefully. The following principles proved essential in moving forward and thriving in this new situation.

1. Utilize Your Resources

In the weeks immediately following TC’s injury, I was flooded with offers of help from our large network of family and friends. As much as possible, people wanted to step in and make our lives easier. Unfortunately, I didn’t always know how to direct these kind offers. I appreciated the casserole dinners delivered to our doorstep, but I wondered if there was a more beneficial way to utilize the help being offered.

I began to notice that each of our friends had a unique skill set to offer to the situation. As it turns out, our dear friend Vanessa is a master in public relations and networking. In the days following TC’s attack, she tasked herself with organizing meal donations, childcare, and dog walking. When I needed a contact at the hospital, a diaper delivery, or even an exterminator, I didn’t have to waste time making these connections myself. I simply called Vanessa and she made whatever I needed happen from her very impressive phone tree. Allowing two or three friends to take over these day-to-day tasks freed up my time so I could devote myself entirely to TC’s recovery.

While we leaned hard on our friends in the healthcare and education fields, our friends in other industries proved equally essential in the days following TC’s injury. When I noticed TC was unable to recall people’s names, I called upon my friend Kristen, a printer and impressive graphic designer. Kristen lifted Facebook photos of our closest friends and family and created a flipbook that TC could use when he wanted to indicate whom he was talking about. This little book became a staple of our conversations. A nurse at the rehab hospital was so impressed she even suggested Kristen start marketing them for other patients with TBI!

If you have a solid network of friends and family, then you likely have access to a range of skills. Most people are aching for the opportunity to help their loved one, but may not be sure how best to intervene. Do yourself a favor and don’t be shy about asking for a much needed favor. Like me, you may be surprised to discover the wealth of talent and resource in your network of supporters.

2. Maximize Your Time

Time is the most rare and valuable gift to a busy caregiver. While we know the brain can continue to heal years after a brain injury, it’s hard not to feel like you’re fighting an invisible clock after being told that the first six months or year are the most critical period of recovery. TC and I are ardent believers in the long-term neuroplasticity of the brain and its ability to recover lost functions. However, we also felt it was important that his first year post-injury be marked by an incredible amount of hard work and progress.

Making time for therapy at home was one of the most difficult challenges we encountered. We were spending hours in the car driving from doctor appointments to therapy appointments, running errands, and picking up our son. With so many goals to work on, we couldn’t afford to let this time be wasted. Each moment in the car needed to be filled with therapeutic activities. To work on TC’s speech, we began by renting audiobooks from the public library. We searched for audiobooks that were accompanied by the original text so that TC would have both auditory and visual access to the language.

To maximize time even further, I would encourage TC to chew gum while he listened and read. The muscles on the right side of his face remained weakened by the brain injury and he was doing little to work on his poor articulation of sounds. Chewing gum on the right side of his mouth was a quick and simple solution to help strengthen his facial muscles.

Occupational therapy goals were also easy to address in the car. TC was determined to regain the use of his right hand, so we stocked the car with some of his therapy equipment. He could practice clenching his fist and extending his fingers as I drove. Sometimes we would put on music for our two-year-old son Jack and have an impromptu dance party. Singing away to songs like “Hands, Shoulders, Knees, and Toes,” TC would show Jack how to do the moves and get the additional bonus of an arm workout.

Singing became an important activity for our family. Research suggests that music, and singing in particular, is an effective way of treating patients with aphasia. This is in part because lyrics are often easier to remember than other words. For Jack, TC, and me, singing was an opportunity to be silly but still work hard. At the beginning, TC struggled just to make sounds like “la.” In the car, I would put together sequences of sounds and have TC and Jack try to replicate them. It was great practice for Jack’s developing language and it didn’t force TC to be singled out.

Although we still feel pressed for time in our daily lives, we have discovered that thinking creatively can help us find hidden pockets of opportunity. You don’t need a whole hour or even thirty minutes to work on therapy. Five minutes here and there can be meaningful to recovery if they are used wisely. Think strategically about your daily schedule and try to identify those golden moments in which you can maximize recovery.

3. Become an Expert

If I thought I knew TC well before his injury, I am now a full-fledged expert on my husband. The hours I’ve clocked at the hospital, sitting in therapy sessions, and consulting with doctors have given me a fairly comprehensive understanding of TC’s challenges and medical concerns. Equipped with all this information, I have felt more comfortable stepping into the role of advocate and questioning what other care might be available.

In the early days, I would load my Amazon shopping cart to its virtual brim with dozens of brain injury texts that included memoirs, recent scientific research, and even medical textbooks. I wanted to educate myself thoroughly about traumatic brain injury, and especially about aphasia, TC’s most debilitating disability. Immersing myself in this literature empowered me in ways I didn’t expect. Reading through the stories and experiences of other families prepared me for the challenges ahead and helped me to set reasonable expectations for TC’s progress.

When time didn’t permit me to read a book myself, friends and family would step in and check it out for me. My cousins did an excellent job of providing me with synopses of recommended texts. Whenever possible, I put myself in touch with other families who have gone through TBI. I attended several lectures on brain injury and have had the privilege of chatting with Lee Woodruff, whose husband Bob sustained a TBI while reporting in Iraq, and Mark Kelly, husband of former Congresswoman Gabby Giffords.

Making contact with other caregivers gave me ideas for new techniques to try to in TC’s therapy and inspired me to research alternative therapy programs. I used to assume that any and all therapy options would be magically dropped in my lap, but it quickly became apparent that I would have to take the lead on researching these options myself. Through an Internet search, I came to learn of a few intensive speech therapy programs for individuals with aphasia. We decided on a wonderful program in Halifax, Nova Scotia where TC has made great progress.

There are so many methods by which caregivers can arm themselves with information. You could start a brain injury book club with friends and family, ask friends to investigate alternative treatments, or simply subscribe to Facebook updates from well-known brain injury organizations such as Brainline.org. Becoming an expert doesn’t have to be time intensive or complicated. Lean on your friends and family to help equip you with the information you need.

4. Set Goals Together

Admittedly, there have been moments in TC’s recovery in which my own enthusiasm for therapy ideas and activities has far exceeded his. During these moments I am reminded how important it is to take a team approach. At the end of the day, it is up to the person with TBI to decide how much time and energy will be devoted to recovery. Caregivers can assist in this process by helping their loved ones set reasonable goals together. Finding out exactly what TC wanted to accomplish was the first step in planning a rich recovery.

When I discovered that his long-term dream was to return to work, we sat down and engaged in a thorough discussion about what specific skills he would need to recover in order to make that happen. As we deconstructed his job task by task, I gleaned insight into the little milestones that would take him there. We created a giant chart for our home titled “Be an Energy Analyst.” Starting with the most basic skills, we began working from the bottom-up, gradually increasing the level of complexity and difficulty.

Because TC had the power to select his own goal, he also had a vested interest in the work ahead. We became partners in recovery. I used my knowledge as a teacher to supplement the work he was doing with his speech therapist. We drilled flashcards, created homework, and monitored his progress through weekly assessments. Once a week he worked with a family friend, a retired special education teacher, to incorporate sign language into his communication repertoire.

None of this would have been possible without the foundation of our strong partnership. As much as I was tempted to direct our work, I had to let TC guide the process. It was his goal, his dream, and his recovery. I could offer the ideas and suggestions, but ultimately, it was up to TC to decide how far he would take it.

5. Involve the Family

As many caregivers will attest, recovering from brain injury is a family affair. At the heart of TC’s recovery has been our two-year-old son Jack. Jack is not only a motivating force in TC’s hard work; he is an essential partner in the process. It has been fascinating to witness TC’s progress side-by-side with the development of our toddler. Many of the language activities that are appropriate for Jack are also helpful to TC.

After a nearly three-month hospitalization, it’s been a joy to watch TC and Jack reestablish their relationship through bonding activities with intrinsic therapeutic value. Singing the alphabet, reading simple board books, and counting together are just a few of the ways TC has been able to squeeze in therapy while spending time with Jack. These activities have allowed TC to reclaim his role as a father and have provided the two of them with much needed quality time. As Jack grows older and his language grows increasingly more sophisticated, reading together will continue to be an activity that challenges them both. In interacting with a parent with a brain injury, Jack is learning valuable lessons about patience and understanding. He is beginning to notice how people differ from one another in their abilities and I hope this experience will help him to be a more thoughtful and compassionate child.

There are so many readily available family activities that offer great therapeutic value. Turning off the TV for a few months has introduced our family to the world of puzzles, board games, and cards. These activities offer a variety of cognitive challenges to people with TBI and promote positive interaction between family members. 

As we have learned, the road to recovery is long, but it doesn’t have to be painful. Thinking creatively about our problems has helped us to redesign our lives in a way that allows us to have fun, strengthen our relationships, and work toward our goals. Everyone who is thrust into the world of brain injury is equipped with their own set of unique skills and experiences. Applying a little creativity to the situation can help bring those talents to light and enhance your loved one’s recovery.