Caregiving & CTE

04 Feb Caregiving & CTE

I’d be remised if I didn’t provide a disclaimer for this post.  Back in May of 2018, I had a very candid evening conversation with a close college friend & his wife who has become a friend throughout the years. Because life happens, I am just getting a chance to share our conversations and their personal accounts of their daily experiences. I want to publicly apologize to my friends for sitting on this interview/conversation and not sharing this earlier. 

During our time together, they provided so much insight, shared their journeys and dispelled a few myths about caregivers of professional athlete spouses who have symptoms of Chronic Traumatic Encephalopathy but have not been formally diagnosed by clinicians. My friend has been treated for depression and anxiety for years. Medication provides minimal relief and therapy is often difficult to manage with the onslaught of symptoms experienced daily. 

CTE, a form of Traumatic Brain Injury (TBI), usually has a long-lasting impact on an individual’s quality of life that result in impaired thinking, decision making and reasoning, concentration, memory and movement. CTE can be defined as repeated head traumas resulting in brain degeneration. For athletes that experience repeated head injuries such as boxers, football players and soccer players; CTE is a potential diagnosis. While there is not much research on CTE, what is known is that the only possible way to formally diagnose CTE is via autopsy. Current research studies are exploring the complexities of how severe concussions and the repeated head injuries relate to CTE. 

In my conversation with wife and caregiver of a former professional athlete that has played football since childhood, she stated, “prayer is the only way to understand what they go through.” She utilizes prayer and journaling as forms of coping with the stressors of providing care for someone who suffers from severe symptoms daily. She noted praying to remove emotions & while not taking things personally throughout their daily interactions. Though symptoms vary, they have both endorsed the following symptoms they’ve witnessed or experienced: severe aggression, anxiety, suicidal ideations, impulsivity, irritability, worthlessness, depression, forgetfulness, “blackouts,” flashbacks, mood swings & sleep disturbances. During our conversation, she recalled several PTSD type situations when he would have flashbacks if he’d smell fresh cut grass or see the color blue that would trigger an episode. Episodes that only she and their daughters could deescalate. He typically isolate until he feels comfortable to be amongst others after each episode. Wife & caregiver likens his behavior to being militarized “mind control” type programming that each player endures as a member of this elite organization. The episodes trigger a sense of vulnerability that makes it uncomfortable for a man that has been tough and played the toughest, hardest hitting contact sport since the age of 6. 

Football has been his identity, way of life, a brotherhood since early childhood and now he feels left out. He stated, “I’ve been using one road my whole life…tunnel vision” and now being forced to adapt to life after football has been the toughest battle he has ever endured. He is unable to compete on the same stage, he lacks the camaraderie, suffers from the inability to exert the suppressed aggression and lacks support from the organization he “went to war for” each week. He noted feeling left out with no help from the players association. They reported lack of insurance coverage 5 years post retirement. Something that has plagued them has been the denial of medical records that could potentially help in his care with other providers. This has been a difficult reality to accept. Seemingly feeling left out to dry with no support to deal with a severe and chronic disorder that will forever affect his life. My college friend experiences “dark places” during episodes and stated, “when [my wife] can’t reach me, I know God can.” He recalled having multiple concussions in both college and during his professional career. He stated, “they feel like mood swings coming on but there’s nothing I can do, feel like a prisoner in my own body.” He is unable to be alone, always in the company of his wife and daughters. Prayer and writing are his typical coping skills, ways to release overwhelming emotions that impact his daily life. As he reflected on his relationship with his wife, he empathizes with her and feels sadden about how much he has impacted her life causing her to experience depressive symptoms. In an effort to establish an identity outside of football, my friend has started a foundation to help other former athletes post professional career. 

Football has brought great joy and it has cost great pain.