Caring for a loved one with a brain injury can be incredibly challenging, especially in the first few months. When Sean’s partner, Margo, sustained a brain injury seven years ago, he rapidly learned how adapting to the role of a caregiver can be life-altering.

Managing the physical needs of a person with a brain injury, such as personal hygiene, medication management, and mobility issues, can be daunting. Those things aside, caregivers may find themselves overwhelmed by the emotional demands of the role, not to mention having to navigate administrative, legal, and financial concerns on their own.

Ensuring that the caregiver is diligent in their physical and mental health is crucial for sustaining the ability to care for their loved one.  The importance of asking for help from family, friends, or professional services to avoid burnout can’t be overstated.

Along with help from family and homecare aides, Sean attends ARBI’s Caregiver Support Group and Mindfulness for Caregivers Program. “Learning is anchoring,” he says, noting that he immersed himself in finding as much information as he could about brain injury to assist him in his role as a caregiver and advocate for his partner’s recovery. “Stuff is going to happen that you don’t know about at first, but you have to be ready to deal with things. Especially when you have to make a decision when the other person can’t speak for themselves. The administrative side of caretaking isn’t exactly second nature to me. I researched online for ideas I hadn’t learned before”.

These ARBI programs offer caregivers like Sean the opportunity to share experiences, gain new coping skills, and find emotional support in a safe space. Programs like these provide caregivers with a lifeline of information, strategies for self-care, and a community of others who understand the unique challenges.

“The first month was terrifying,” he says, reflecting on the initial weeks as a caregiver. With his spouse in an intensive care unit for 20 days, he had to pivot rapidly from the routine of working full-time at a job outside the home to making the decision to become a caregiver—a 24/7 role in the home that he emphasizes is “not for the weak or the timid.”

“Your week will be based on your person’s health and therapies. And you must accept that there will be change each time there is a crisis. As your life—and your life together—changes, you must make different decisions.”

Sean points out that one of those differences might be in their dynamics as a couple. Understanding and coping with changes in the loved one’s emotions and behaviour, including mood swings, irritability, and personality changes, requires caregivers to manage their own well-being. As Sean says, small things can build up and become big things.

Likewise, brain injuries can affect speech and the ability to understand or express thoughts, contributing to cognitive challenges. The caregiver can help with memory loss, difficulty concentrating, and impaired judgment. Here again, adopting self-care rituals and practices will go a long way to restore patience and empathy.

Finding new rituals to share and enjoy together is part of the “reinvention” of the relationship. Sean explains that he and Margo formerly enjoyed cooking a meal together. Now, he cooks, but sharing a special meal with the couple remains a meaningful ritual.

Along with the physical, emotional, and cognitive challenges, caregivers often have to navigate the financial and legal aspects of caregiving, including dealing with insurance, paying for therapies and medical treatments, and dealing with changes in their employment. “Your employer needs to be forgiving,” says Sean, pointing out that caretaking requires being late to work sometimes or frequent and extended absences. “But if you can hang onto a part-time job, that can be positive [to focus on your own interests to avoid burnout and resentment].”

Sean says that acceptance is also a key. “Trying to hold on [to the past life, roles, and routines] by your fingernails will only cause resentment.”

It’s important to remember that every brain injury is unique, and the recovery process can vary greatly; patience, persistence, and seeking out resources and support can make a significant difference in managing the challenges.

To learn more or register for ARBI’s free Caregiver Support Group and Mindfulness for Caregivers Program, visit: https://www.arbi.ca/programs-services/wellness-services