A Life of Caregiving
“When you are taking care of people that other people won’t care for, providing them a home and connection and love, in their heart of hearts they know it. ”
For New York native Tracy, caregiving is deeply entwined with mothering. “It’s hard to separate being a mother and caregiving, for they’ve impacted my whole life.” Tracy’s son was born with a rare heart condition, hypoplastic left heart syndrome. “He had 3 open heart surgeries before the age of 3, is on the autism spectrum and also has severe anxiety disorder, ” she says. As her son grew older, Tracy always hoped that he would be okay despite his underlying condition. But as his health issues persisted, and her marriage disintegrated. Tracy realized that her son would always require her care and support.
In 2019, Tracy’s son suffered a heart attack and stroke, and went on the transplant list. He was scheduled to have his heart transplant in March 2020, just as the COVID-19 restrictions were taking effect. “My son was medically fragile and his heart was precarious. If he’d stayed in rehab after the transplant, there was a risk of contracting COVID-19 and I wouldn’t be allowed to stay with him. He had to come home so that I could care for him,” says Tracy. She advocated with the staff and brought her son home. He was on 6L of oxygen, required tracheostomy care and was unable to walk.
“Without COVID, I might not have had to shoulder this immense responsibility. Nonetheless, I never saw it as a choice; I’d never have sent him to rehab, and they wouldn't have been able to keep me away. I've cared for him through various crises, but the tracheostomy was exceptionally challenging.” Tracy’s daughter and son-in-law provided crucial support during the initial stages, encouragement that helped her persevere during the long days and nights. She kept working, logging on for 12-14 hours to complete 8 hours of work because of the frequent need to check on her son or do tracheostomy care. “Even though my son is not as medically fragile now,” says Tracy, “his condition is still life-threatening, and the ongoing care can be exhausting. Still, I’m immensely grateful that he's here. He’s a 28 year old adult with a disability, compounded by autism and anxiety. He receives support services and can’t hold a job, so he lives with me.”
In addition to navigating her son’s complex medical care, Tracy also took on the responsibility of caregiving for her elderly mother, a task that many in her family felt was too much for her to handle. But Tracy persisted, believing that she could care for both her mother and her son. “The people you care for enlighten you to your strengths,” she says. “You are stronger than you ever thought you were, for them. They empower you.” Still, she acknowledges that she’s had to let go of any expectations of a “normal” life. “It's akin to grieving with a constant psychological weight because you're technically not grieving a loss of life, but rather a loss of the life you expected or had envisioned at a certain point in your own journey. You also feel guilty about harboring that resentment because you love and care for the person so deeply. It's natural to feel angry at times about not having the freedom to do as you please.”
One of the biggest lessons she’s learned along the way is to accept help from others, even if it isn’t perfect. “Don’t try to do everything on your own. Find ways to maintain some semblance of an adult life.” Tracy has an extended support network including her sisters and best friend. Her son is now in a program that allows him to take classes. “It gives me peace of mind knowing that someone can be there for him if I am working.”
At the age of 60, Tracy, a lawyer by training, is pursuing her degree in special education. After her divorce she realized that she had to be financially strong to help provide for her son’s needs. “I had to take to take charge of my life. If I wasn't okay, neither of us would be.” Tracy also put plans in place for her son’s future. “My daughter and son-in-law are committed to caring for my son if anything happens to me. I’m saving as much as possible so that it won’t be a burden for them.”
Through all the ups and downs Tracy has experienced on her caregiving journey, one particularly powerful moment stands out. In July 2019, her son was in the hospital. His situation was dire and he kept drifting in and out of consciousness. It was then he uttered the words she never expected to hear. “He thinks he’s dying,” Tracy recalls, “and has the presence of mind to say, ‘I want you to know that I owe my whole life to you. I’m so grateful that you’re my mother.’ You don’t always get the opportunity for the person you care for to thank you in a way that’s so genuine,” she says. “My son is so atypical that he gets upset for such little things. But he thought this was the end and took the time to tell me, ‘If this is my life I want you to know I had a really good life, and it’s because of you, and I will die happy.’ ”
The loved ones caregivers look after don’t always know how to express themselves, or may have lost the ability to do so, notes Tracy. “But when you are taking care of people that other people won’t care for, providing them a home and connection and love, helping them to be part of something more than themselves, in their heart of hearts they know it. And there is a profound gratefulness for it because you don’t have to do it and they know that too.”
Tracy takes immense joy in her son's accomplishments. “I can be brought to tears when he does something well,” she reflects. “I’m not a practicing religious person. However the fact that in caregiving you are so invested in the love you have for this person, and go through so much for them makes me believe that there is a deeper connection beyond this earth. There is so much more good in the world than bad. Everywhere you turn there is goodness happening.”