“Doctors diagnose, nurses heal, and caregivers make sense of it all.” – Brett Lewis
In the initial months of the pandemic, the uncertainty of what felt safe dominated the minds of the world, and particularly, ALS caregivers – was it safe to go to the grocery store, to work, to bring in outside help to care for our loved-one? Without clear answers from health officials, individuals have needed to navigate these issues based on their own needs and comfort with risk-taking. The pressure to keep your loved one safe from the COVID-19 virus has been another responsibility fallen upon caregivers.
To my fellow caregivers: I see you. I feel you. You are the glue.
O.J. and I are sending love and light to all affected by ALS, COVID-19, and in need of support. Here at the Brigance Brigade Foundation, we know that our community is STRONGER TOGETHER.
I have been the primary caregiver of my husband, O.J. Brigance, since we received the news of his ALS diagnosis thirteen years ago. I have first-hand experience of the persistent worry and turbulent changes that this disease can bring to those it touches. During the COVID-19 pandemic, people living with ALS (PALS) and caregivers of those living with ALS (CALS) are yet again figuring out how to adjust to a new normal. This time, however, everyone around us is also experiencing similar feelings of grief, anxiety, isolation, and exhaustion that ALS caregivers so often face. For the first time in my lifetime, there is collective acknowledgement that we are ALL at risk.
When O.J. and I founded the Brigance Brigade Foundation (BBF) in 2008, we centered our mission around the needs of PALS in their daily lives. As with many diseases, many nonprofits focus on finding a cure. While we do commit a percentage of our budget to giving back to research, and are hopeful about the progress made, the reality is that PALS are dealing with real issues now. We have committed most of our programming to providing financial assistance for respite care, equipment not covered by insurance, and accessibility for PALS to live with ease and dignity.
As our organization has grown, while recognizing the urgency to equip, encourage, and empower people living with ALS, we knew we could not forget our community of caregivers. It has become increasingly apparent to us that CALS were an often overlooked population in the ALS community and need their own space, to ensure we can all service our PALS in the best way possible. Several years ago, we started the suite of programs called Chanda’s Caregiver Corner, that draws from my own life experiences. We are focused around building a community that supports each other through the tough realities of ALS (and now COVID-19), laughs together, shares resources, and prioritizes self-care. We truly “walk this walk” together.
Like so many experiencing this collective grief, I feel strongly that self-care is an imperative and non-negotiable. Taking the time to care for yourself is essential to combating any of the negative and draining feelings experienced during tough times. This summer, we began hosting weekly Caregiver Club video meetups, we all shared uncertainty regarding health and finances, feelings of isolation during stay-at-home orders, missing touch, and inability to have a productive or safe routine, for fear we would compromise our PALS.
Self-care does not need to be complicated. I am delighted to share a short list of tactics we used during Chanda’s Caregiver Corner programming to re-focus our energy and prioritize ourselves amidst a chaotic world:
- Take a few moments, before getting out of bed or going to sleep, to list 3 things you are grateful for. You can do this silently to yourself or start a gratitude journal as a reminder of the beauty in your life.
- Write post cards to people you love or miss.
- Enjoy a walk in nature. Stand barefoot on your lawn to feel grounded before you begin your day.
- Search YouTube for free, gentle yoga practice, body weight exercises, or high intensity workout – carve out a small space for yourself to move your body in a way that feels good to you.
- Participate in an online art class. You can also draw, scribble, paint, or color to instill a sense of creativity.
- Download a free meditation app to find stillness in your breath. Our favorite app, Calm, has guided mediations as short as 3 minutes for those new to meditation or those who are strapped for time by daily caregiving duties.
- Join the Brigance Brigade Foundation’s network of caregivers! We are evolving our programs and hope to be here for you on your caregiving journey!
The Brigance Brigade Foundation is a 501c3 nonprofit organization with mission to equip, encourage, and empower people living with ALS. For more information, or to get in touch with our staff, visit brigancebrigade.org