Those struggling with suspected CTE are not the only ones in need of support. Caregivers are often so busy looking after their loved one, that they forget or don't leave time to care for themselves as well. Below you will find coping strategies and advice straight from caregivers who are living with a loved one with suspected CTE. Watch our webinar below for an in-depth discussion on how to support suspected CTE caregivers.
How the Adamles fight CTE together
Kim Adamle from The Mike Adamle Project: Rise Above is the wife of former NFL player and broadcaster Mike Adamle, who is living with probable CTE. How does Kim approach each day to make sure both she and Mike have the support they need? She explains in her own words below:
Caring for someone with suspected Chronic Traumatic Encephalopathy (CTE) can be overwhelming. Sometimes I feel panicked. As a caregiver (Mike and I actually avoid using the term caregiver, because it sounds one-sided; we really think of this as a partnership), you may find yourself with so many responsibilities that you neglect taking good care of yourself. Caregiver burnout is real, and you need to take deliberate steps to avoid it. That starts with building and fostering a support network to take care of your own well-being, and establishing a routine that keeps you physically, mentally, and emotionally strong yourself. It may sound selfish, but it's nearly impossible to be there for someone else if you don't first take care of yourself. Watch the video below to learn more about how Mike and I have set up these support systems, and how important it is to establish honest and open communication as you work together to fight the symptoms of this disease.
Kim and Mike also joined us for a webinar on Supporting Suspected CTE Caregivers. Watch the video below to hear more about how they are partners in their fight against CTE.
CTE and Intimate Partner Violence
Liz Nicholson Sullivan is the wife of former Cleveland Browns offensive lineman Gerry Sullivan. When Gerry was diagnosed with early onset dementia and probable CTE, Liz became an advocate for retired NFL players and their wives and families. She and Gerry have agreed to share details about Gerry’s probable CTE diagnosis, including one of the ugliest sides of the disease not often discussed openly - domestic violence.
Listen to Liz open up about her experience with CTE and hear her message to other wives and families struggling with the effects of CTE including intimate partner violence: you are not alone.
Liz Nicholson Sullivan: “Domestic violence is without a doubt one of the most secretive, yet one of the biggest issues in the community of women dealing with CTE. A lack of impulse control and isolation from other family and friends means the wife is often the one bearing the brunt of violent, aggressive behavior. It doesn’t matter what size you are or how old the man is, it is extremely frightening to have any former football player coming at you. I want as much exposure for this disease as possible, so women and players feel comfortable coming forward. Living with this disease is a very lonely, tragic existence and hopefully it can get better as we all speak up.”
Liz has been open about her experience caring for a loved one with suspected CTE. She joined our webinar and peeled back the curtain on what it's like living with someone struggling with suspected CTE.
If you or someone you know needs help, call the Domestic Violence Hotline at 800.799.7233. If you need help finding a doctor to help treat a loved one's suspected CTE, please submit a request to the CLF HelpLine.
Meditation and Mindfulness for CTE caregivers
Licensed psychologist and Concussion Legacy Foundation Family Advisory Board member Dr. Shannon Albarelli lost her husband Mike Albarelli in 2018. Mike was a high school football player, captain of the lacrosse team at Brown University, and a successful executive before he died at age 38 and was diagnosed with CTE. Mike battled symptoms that Dr. Albarelli suspected were caused by CTE, and she turned to meditation to help her endure her husband's progressively worsening health. She now shares this technique with others who are struggling. Watch her lead a meditation session for those struggling with the long-term effects of brain injury and their loved ones.
Dr. Albarelli also appeared on our webinar for Supporting Suspected CTE Caregivers, where she and other suspected CTE caregivers offered advice and coping strategies. Hear Dr. Albarelli discuss her experience with CTE and how caregivers must prioritize their own self-care: