S2: Episode 3 - Impacts of Brain Injury on Family Members
s2: Episode 3 - Impacts of brain injury on family members
In this episode of The Sharing Experiences With Concussions/TBI podcast, Caron Gan, a Registered Psychotherapist and Marriage and Family Therapist, welcomes Anne Sanger, Stacey Campbell, and Madeline Roitman to talk about what life is like for families whose loved one has suffered from a traumatic brain injury (TBI).
Listen in as they share stories and experiences of caring for their spouse, brother, and child who are recovering from brain injuries. They highlight their initial thoughts and feelings after the injuries, the most significant impacts the injury has had on them and their families, how existing healthcare systems can better prepare families for life after brain injury, and how roles, responsibilities, and communication dynamics have since changed.
How to Listen
Episode Timeline/Highlights:
[05:40] Introducing our participants and the topic of today’s episode.
[09:31] What were your first thoughts and feelings following your loved one’s brain injury?
Madeline: I was in grade 12 at the time and I was aware of what had happened, but my mom went to the hospital and I just went back to school. Other kids were asking me what had happened and if he was okay. It just felt crazy that no one had told me what really happened. I felt terrified. Once I visited my brother, he called me Emily, which is my little sister’s name, and he couldn’t smile with half of his mouth. I knew right away that that was a stroke symptom, but it didn’t make any sense for a perfectly healthy teenager to have a stroke. It was hard to get any answers which was really scary. I didn’t think it was going to be a long-term issue (which it was) and for a long time I had a fear that it was going to happen again.
Anne: When my husband was discharged, he was so injured that he wasn’t able to get out of the house. It took a year for him to get any concussion treatment and for us to get any information because it wasn’t a priority. Recovery, medication, and comfort was a priority, not the brain injury. Now, 2 years post-accident, he’s still not receiving the help he needs.
Stacey: I’m so emotional right now because I’ve been going through photos and I’m taken right back to that moment in the ER. When I got to the hospital, I couldn’t see Jake because they were working on him and he needed to go into surgery for multiple hours. Seeing him afterwards and seeing him go through weeks of being in a coma, having more surgeries, and not knowing the extent of his brain injury until he woke up is not something you’d ever want to see or experience.
[19:50] What was the most significant impact to your family following your loved one’s injury?
Madeline: Immediately after, my parents’ full attention was on him. My sister stayed at a friend’s house and I was in the process of applying to universities. It affected my career as a competitive high school athlete, my university tours, and I had to start doing more things on my own and relying on my community for help. In the long run, as it’s been several years, it’s been very challenging for my parents. We’re not the same. My brother has come such a long way, we’re so proud, and he’s graduating engineering school and skiing, but it was very traumatic for him so we need to be sensitive to that. He’s still the priority in the family.
Anne: The most significant impact is extreme sound and light sensitivity. My husband was deaf before the accident and now he is hyper sensitive to sound, which affects every step, chore, and movement you make in the house. My daughter and I are walking around on eggshells every second of the day because we don’t want to bother him because he is very upset.
Stacey: Jake’s brother had just left the province for university, so it greatly impacted his first semester. It significantly impacted everyone in different ways. Our therapists have become our extended family. Jake is also very sensitive to light and sound.
[27:10] What were you least prepared for and how can existing healthcare systems better prepare families for life after brain injury?
Madeline: I was least prepared for the long-term impacts of his brain injury, how it would change, and how it would continue to impact my family. I didn’t know how to handle all the attention I was getting from my community and my school, asking about my brother and the accident. I also wasn’t prepared for how it would feel when classmates would joke around about having a stroke (when they obviously weren’t). I’m not sure how the healthcare system can adapt because they were saying it was such a freak accident that they don’t know how it happened. They had no way of knowing what recovery would look like.
Anne: There were so many service providers involved with Steven’s life and their coordination was incredible. He had no problem taking the help, but it was exhausting thinking about booking appointments because he doesn’t know how he’s going to be feeling at that time. So, I ended up taking over the coordination of appointments and paperwork. But Steven will cancel appointments to hang out with his friends and he doesn’t care. He appreciates all the help and the service providers, but he will do what he wants.
Stacey: I wasn’t prepared for that phone call. I wasn’t prepared for the constant attention from the media about Jake’s collision and them not leaving us alone. The healthcare system was amazing but since it was motor vehicle related, I didn’t know the logistics of that. I didn’t realize how much I would have to work with the insurance agency. I wasn’t prepared for the lack of access to speech pathologists and therapists that specialize in brain injury. We did a family meeting before leaving the hospital to discuss next steps and I found that to be very helpful. I feel like we have the support we need but you also need to be a strong advocate to get answers.
[39:03] Did your loved one’s injury impact your emotional, mental, or physical health? If so, in what ways?
Madeline: I’ve always been a highly anxious person but after my brother’s injury, I definitely became more anxious for a period of time. It has become a new aspect of my anxiety. Sometimes, I’ll have conflict with him that’s a result of his brain injury and that will cause some anxiety that’s hard to work through. I didn’t eat or sleep well for several weeks after the accident, so I lost a bit of weight, but that was short-term.
Anne: It’s hard for me to judge my emotional health impacts as I was living in chaos. Fortunately, I could sleep. Physically, I was thrown in to a physically demanding PSW role. I love to use breath work, yoga, meditation, and massages to relax and manage stress and anxiety.
Stacey: I’ve been much more emotional, especially if you ask how I am. It’s made me realize what’s important in life. Mentally, I’ve become interested in the occupational side of things so it’s given me a yearning to learn something new to help Jake. Physically, it’s made me more aware of caring for myself because if I’m not good, nobody’s good. Though, the biggest area of impact is sleep. I don’t sleep well.
[44:17] How have communication dynamics changed within your family and what did you have to adapt to?
Madeline: My brother is easily overwhelmed and experiences sensory overload at times. Once he started doing things again, it was challenging for us to do things together which changed the dynamics of our communication as a family. He’s also very angry about what happened to him, understandably, so there are certain things you just don’t say around him because it can be difficult for him to be empathetic.
Anne: Part of the issue is misfiring in the brain. My husband is overwhelmed by questions. He’s concentrating so hard on recovering, managing pain, and having some semblance of a life that when I ask him a question, he’s begging me not to. Communication is very limited. His short-term memory loss is also severe, though his long-term memory is fantastic.
Stacey: Communication dynamics have mostly changed between Jake and his brothers. It’s an invisible injury, but he has cognitive and physical challenges. He’s had to relearn everything as a young adult.
[49:53] How did roles and responsibilities change within your family?
Madeline: I’m the oldest sibling, so I was always in more of a caretaker role, but after the injury, I took that upon myself a bit more seriously. We spent more time together as a family which was positive. Our role as a family and our responsibility to each other has strengthened.
Anne: We are massive gardeners who love to spend time together doing what we love and that’s not happening anymore, so that’s an adjustment. My daughter, Stevens stepdaughter, has also become massively involved in caregiving which is great.
Stacey: My role of mom is still there, but I’m also now a constant caregiver, case manager, and advocate. It’s made me appreciate our life and be more grateful for the new and improved Jake.
[54:10] What would you recommend to others to prevent burnout and stress and enhance coping and resilience?
Madeline: I tried to get away (through figure skating) and have something that was separate from that part of my life. To manage my anxiety, mindfulness practices and taking therapy seriously has been very useful. Especially for siblings, find an escape outlet and use the resources you have available to you to practice mindfulness and well-being. I wish someone would’ve told me earlier that it’s a lived experience thing that no one else will understand except for those families that have lived through it. Most may not understand what you’ve been through and that’s okay. It doesn’t mean you can’t have a relationship with them.
Anne: I started doing psychotherapy about a year post-accident because I was getting tired of talking to my family and friends about it. That was really important because I don’t what that to be all that I ever talk about with my family and friends. I wanted to close that door a bit. I also didn’t talk about it at work so I could have that break and enjoy it. Now, if someone wants to talk about it with me and I don’t, I don’t talk about it.
Stacey: Boundaries are very important. Routine, diet, exercise, and having an outlet to do things you enjoy are important. If somebody offers help, don’t say no. I’m also thankful for OBIA and the SCALE Program through The Ontario Caregiver Organization, so look into that!
[1:00:11] Conclusion & Advice - Words of HOPE:
Our resources and therapists have been amazing. If you’re not happy with a service provider, find someone you like because they’re going to be with you for a long time. Practice gratitude and have strong communication and boundaries with your community. We’re stronger and closer because of this. The support groups with OBIA have been crucial. The brain is an amazing organ that needs time and patience. Never give up hope!
Resources Mentioned:
SCALE Program - The Ontario Caregiver Organization: https://ontariocaregiver.ca/scale-program
Connect with us!
Visit The Headsup Concussion Advocacy Network’s website: www.headsupcan.ca
Follow Headsup on Instagram: www.instagram.com/headsupcan
Follow them on Twitter: www.twitter.com/headsupcan_
Visit The Ontario Brain Injury Association’s website: www.obia.ca
Follow Ontario Brain Injury Association on Instagram: www.instagram.com/ontariobia
Follow them on Twitter: www.twitter.com/OntarioBIA
Podcast Facilitator
Caron Gan
Registered Psychotherapist (RP), Private Practice, Adjunct Scientist, Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital
Caron Gan is a Registered Psychotherapist and Registered Marriage and Family Therapist with over 30 years’ experience providing psychotherapeutic intervention to youth, adults, and families living with the effects of acquired brain injury in both public and private sectors. She has a part-time private practice that is dedicated to individuals and families living with the effects of brain injury, PTSD, and neurotrauma.
Caron is a frequent workshop presenter and keynote speaker at local, national, and international brain injury conferences. She has also authored numerous peer-reviewed articles including five book chapters on Family Assessment and Intervention after brain injury. As an Adjunct Scientist through the Bloorview Research Institute, her research focuses on family interventions and family needs after brain injury.
Participants
Anne Sanger
Spouse of someone who sustained a brain injury.
Stacey Campbell
Mother of a child who sustained a brain injury.
Madeline Roitman
Sister to a sibling who sustained a brain injury.
EPisode Sponsor
The Sharing Experiences With Concussions/TBI podcast is made possible by The Headsup Concussion Advocacy Network whose mission is to build collaborative networks and partnerships that work to innovate concussion education, research and awareness. The podcast is also made possible by The Ontario Brain Injury Association whose mission is to enhance the lives of Ontarians living with the effects of acquired brain injury through education, awareness and support. Thank you!