like gary, and so many others, my dad’s illness also wasn’t “in the plan,” and it changed everything for my mom, and our family. and whether the caregiving lasts for a short time, like say, with a treatable illness, long-term with a predictable ending, as in gary’s case, or life-long, such as caring for a child with developmental challenges, it makes perfect sense that this role would be difficult and awful and hard, and yet we don’t have words for this aspect of what is arguably one of the hardest jobs in the world. we certainly don’t give caregivers the space they deserve to share these it’s-so-hard-to-be-a-caregiver feelings without judgment.
so we leave them to toil away in silence, grieving the loss of the life they once knew, or once envisioned, as they take each day one at a time.
or not.
years ago, i was visiting a man who was recovering from a bone marrow transplant. he had several complications which meant a long road ahead of rehabilitation and further treatments. as i stood outside the glass doors of his room waving — he was in isolation — his wife quietly told me she would be filing for divorce.
“i didn’t sign up for this,” she said, with tears in her eyes. “and i know i can’t do it.”
it sounded awful and selfish, and say what you want about her lack of commitment to her husband, her integrity or even her inability to simply care for another human being who is struggling, but as cold as her decision may seem, it reminds us that sometimes it’s important to weigh your own needs with the needs of the person you are caring for. and if you can’t find a balance between the two, perhaps it’s better to back away slowly.
most people become caregivers “because they feel a moral imperative to do so,” deborah colgan writes in
today’s caregiver
. this often stems from family relationships and roles, she says, as well as friendships and social expectations. but saying no, not necessarily to all care, but maybe setting boundaries, can “save the caregiver from emotional and physical burnout” —
the signs of which include
, “avoiding the loved one, anger, fatigue, depression, impaired sleep, or that terrible sense that there is ‘no light at the end of the tunnel.’ these feelings are important warnings, she advises, that the caregiver needs a break and some support.
7 minute read
