The beautiful story I am sharing with you today — the Wednesday before Thanksgiving — was one of many shared with me shortly after two of our No Barriers Caregivers Retreats that took place earlier this fall at the Adaptive Outdoor Education Center in Carrabassett Valley, Maine. The retreats offered 25 family caregivers 4 days and 3 nights to step outside of their caregiver role to experience the majestic New England foliage, hike, zip-line, practice yoga, stargaze, and engage in meaningful conversations and activities designed to help each participant address trauma and grief, find forgiveness, rediscover self, build community, and heal.
From Amy, Caregiver and Retreat Participant:
“Looking back on the last 11 years of my caregiving journey, it was riddled with so much fear, loss, anxiety, and blame. Being a caregiver to a child with a very rare diagnosis (90 in the world) left me broken, lost, and full of the worst guilt a mom could have. I had to grieve so many of the things I would never experience with him, and I didn’t know how to do that. The fact that he would never say ‘I love you;’ that he could never wrap [his] arms around my neck, get married, or have children, destroyed me. There were so many things I tried to control but I couldn’t. I was angry for all these losses and in turn, blamed myself and lived with so much guilt for years. How was I supposed to navigate this life I did not understand? I had to make all these life-changing decisions on surgeries and therapies as well as making end-of-life plans for my child because I had no idea how long I would have him. This was not in the cards. This was not supposed to happen. I was not equipped for this.
As I have navigated this life, I never knew how difficult it would be or that I would be a full-time caregiver for the rest of his life. My son requires around-the-clock care as he is unable to walk, talk or feed himself. From the time he wakes up to the time he goes to bed, I must lift him, move him, feed him, bathe him, put his clothes on, change him and carry him to wherever he needs to go. School is the time where I have moments to myself but even when he is at school, I never thought I would have to ‘fight’ so hard for his basic needs. If life was not hard enough and now, I must fight for everything that anyone else could just ask for. To put trust in teachers, bus drivers, and other kids to always treat him with kindness and compassion is a full-time job. All this caught up to me over the years and I was literally drowning and had no fight left, and I did not know who I was anymore. I was broken, isolated, and lost.
I applied for a No Barriers retreat and was accepted to go. What did I have to lose? Little did I know that I would meet the most amazing women that are my forever friends. I learned that this life was not meant to be by ourselves, that we need community, and that we need to ask for help as we cannot do this life alone. I learned, we cannot always fix things all the time, as much as we want to, we just can’t. But we can be there for those that need someone even if it is just to listen. I learned that self-care is so important, even if it’s getting out in nature and just breathing. That everyone has wounds, but they do not define you and who you are. That to heal, forgiving myself and others was one of the most powerful things I could do. Not for them, but for me and how freeing and lighter it is. The most important thing I took away from this retreat was no matter your life’s journey, and all things that I have walked through, I am valuable, I am loved, and I am WORTHY!”
The Life of Caregivers Everywhere
In the United States, there are 53 million youth and adult caregivers just like Amy. ⅔ of these folks are women and 61% work outside the home. Nearly 1 in 5 provide unpaid care and they almost never take time off. They are deeply compassionate individuals who unconditionally devote their lives to helping their children, spouses, parents, and grandparents manage visible and invisible mental and physical challenges — everything from lifelong illnesses and disabilities, to traumatic injuries suffered in accidents or war, to the natural difficulties associated with the aging process we all eventually face.
Caregiving is selfless, tireless work, and it can hollow out even the strongest people when they try to go it alone — especially at this time of year. While the holiday season is joyous for many, it can be extremely stressful for those who dedicate their lives to helping their loved ones.
This Thanksgiving
Join me in recognizing the caregivers in our lives and supporting the critical work that our No Barriers Caregivers Program does every day.
Donate to help us continue to host virtual and in-person community events, expeditions, and retreats like those held in Maine this year. Together we can improve and empower the lives of caregivers nationwide.
GIVE TODAY!
Thank you and Happy Thanksgiving.
More Words From Maine
“It’s easy to get lost as a caregiver to a spouse and children. There are times on my caregiving journey that I’ve worked so hard at being a caregiver, I had forgotten who I was as a person. The No Barriers retreat in Maine helped me find a huge portion of myself and continue my journey toward healing myself. Thank you for giving me this opportunity to take a huge step forward in finding my own self.”
– Caira Benson
“I am still waking up smiling each day, as well as sharing with my sphere of influence how this retreat has had a profound impact on me. Being able to live life in the beautiful Maine natural setting with other caregivers for the very first time in my thirty-three years of caregiving gave me the much-needed rest and space to delve deep into my heart and soul. Having time to reflect allowed me to visit what felt like a “wax figure” melting away to see my role as caregiver with fresh eyes and a new perspective. The entire retreat allowed honesty, safety, and sharing with no judgement. I am forever grateful for this experience of a lifetime! My Rope Team and our retreat leaders are embedded in my heart for a lifetime.”
– Zoe Ann Holmes
“I am so grateful for the opportunity to attend the No Barriers retreat in October. It was a life changing experience for me. I met the most amazing people. This has changed my caregiving journey and I am grateful for all the resources and support that I received.”
– Gabriela Headen
“It’s been so hard to find words to describe an experience that has left me completely speechless. Signing up, I had fully prepared myself to represent and dissect the Caregiver I’ve become. What I wasn’t prepared for was the (re)discovery of *myself*. I found myself questioning, “Am I living – or, just Alive?” and with the help of the No Barriers USA Caregiver Team, I left our time together with a sense of self and fuel to add to my fire. As a Veteran (spouse) Caregiver, who also cares for our child with epilepsy, grew up in a caregiving home with a disabled parent and traumas of loss, I had no idea what I was getting myself into —- and, no idea how much my charged DNA required a reset. I’ve dedicated every day since my return to reminding myself of my strength and that I’m a Climber. The impact you all have made on my life is priceless… irreplaceable… and I’ll be forever grateful for this opportunity.”
– Shana “Shay” Fraser
More Ways to Get Involved
Interested in learning more ways to support our No Barriers Caregivers Program? Email Founder/Program Director Heather Zoccali: heather.zoccali@nobarriersusa.org; or Join Our Caregiver Email List at the bottom of this page on the No Barriers website: https://nobarriersusa.org/caregivers/.
