Caregiver Spotlight: Jen

November is National Family Caregiver Month, and we’re celebrating the caregivers in our community. Jen provides care for her brother, Jeff, and shares her reflections with us below.

On finding balance…

Finding a balance between caring for myself and for Jeff is tricky and is something that I am constantly working on. It requires good time management and a commitment to setting time aside for myself. When caring for someone who has a traumatic brain injury, it is so important to build a large and diverse support system. Jeff is fortunate to have multiple caregivers - besides myself, my parents and the rest of our family are extremely active in his care. However, it is vital to have additional support so that Jeff always has the support he needs, while ensuring that his primary caregivers do not get burnt out. Jeff is involved in many support groups (BABIS: Boston Acquired Brain Injury Support Group, Interrupted Lives at Boston University Support Group, Community Rehab Care Support Group, Spaulding Rehabilitation Peer Support Group where he speaks to current rehab patients about his recovery!), is extremely active on TBI subreddits and various TBI Facebook groups, participates in LoveYourBrain yoga, and does neurofeedback therapy. These groups and activities give him various outlets to connect with other TBI survivors and talk through his emotions and challenges with a mix of survivors and healthcare professionals. Having multiple support outlets guarantees that Jeff has constant support, while allowing me to find that balance between his care and my own.

on learning through caregiving…

Growing up, I was very close to my brother, but with school, work, and living in different cities, we lost that closeness that we used to have as kids. I always knew that Jeff was passionate about many things and that we both were adventurous and spontaneous, but I didn't get the opportunity to know the adult Jeff very well until right before his accident. We went on a family vacation to Iceland and went arctic surfing together and bonded over our shared interests in food and trying new things. The timing of his accident was especially devastating because I felt like we were just starting to get to know each other in this next phase of life. When he was in a coma for two weeks following his accident, I was so scared of losing him and never getting that chance to bond. However, when he woke up and began recovering, I learned so much about not only his interests, but also his resilience and passion for life that is absolutely contagious. His personality became even more animated and pronounced than it was before his accident. He has taught me so much about the importance of friends and family, living a healthy lifestyle, music production, cooking, and long distance running. His outlook on his accident and his response to such an unfortunate and traumatic event is incredibly inspiring and has taught me to always give back to the communities that have been important in your development and growth. Additionally, he has taught me to never take life for granted, to be thankful for every moment, and to live every day to its fullest because you never know what crazy curveballs life will throw at you.

on what it means to ‘loveyourbrain’…

I didn't know much about LoveYourBrain or traumatic brain injuries until Jeff's accident. LoveYourBrain made me realize that there are millions of people who went through similar experiences and connected us to them in beautifully healing ways. LoveYourBrain exposed us to the many stories of traumatic brain injury survivors and gave us a community to process the pain and roadblocks of everyday life post-TBI. LYB gives survivors and caregivers new friendships, new lessons, and sometimes even new exercises or yoga moves to do at home. 

on finding opportunities within caregiving…

Participating in LoveYourBrain yoga and other TBI support groups gave me the opportunity to tell the caregiver side of Jeff's recovery. Aside from that, the opportunity to run marathons with Jeff was also presented to me through this new dynamic as his caregiver. Jeff was hit by a car while training for the 2018 NYC Marathon, and the second he walked for the first time after his accident (albeit with the support from a physical therapy harness), he instantly decided to sign up for the 2019 NYC Marathon to finish what he started. At the time, it was unclear whether or not Jeff would ever be able to run again. So, he asked me to sign up as one of his support runners to ensure that he finished the marathon. I hesitantly agreed, as I had run a half marathon before and vowed to never run that far again. We ended up running the 2019 NYC Marathon in November and the 2020 Boston Marathon together in September.

Two marathons in under a year and we plan to complete the "Marathon Majors" (six of the biggest and most renowned marathons): NYC, Boston, Tokyo, London, Chicago, and Berlin over the next couple of years. Through being his support runner, I have found a new passion that I can share with him. Another opportunity that has been presented to me is the ability to use my technical skills to give back to the TBI community with Jeff. As a Software Engineer, I hope to one day develop (alongside Jeff) a mobile application for TBI survivors and caregivers to use post-injury, as I now see there are so many people put into this "new normal" with little direction.

Did you know?

Caregivers are welcomed in all of our programs, including our Community Retreats, Yoga program, and Mindset Online. We even have a Caregiver Retreat specific designed to help nurture our caregivers’ capacity to care. Often it gets overlooked that the family and friends of the person who experiences the injury also need time to focus on their healing. Our approach is to support the caregivers in our community to find balance between caring for themselves and those around them. Click the program links above to learn more.