Caregivers to individuals with cancer also need psychosocial support, and never more so than during this global coronavirus pandemic with some facing even greater uncertainty and anxiety for the future.
That’s according to Monica Bryant, a cancer rights attorney and co-founder of Triage Cancer, a non-profit organization that helps people deal with the legal and practical issues surrounding the disease.
“A certain amount of responsibility is placed upon caregivers, but they are not always given the same support that the patient is offered.
“They are also on a journey. It’s not the same experience as the person who has been diagnosed but they have their own unique set of needs that must also be addressed,” she says.
All of the group’s resources and events, including its monthly webinars and three annual medical conferences, are designed to be accessible for both patients and caregivers.
This is particularly important in Triage Cancer’s area of expertise as the information provided covers aspects of living with cancer that affect the whole family – health insurance, employment rights and access to financial support, for example.
The group’s Speakers’ Bureau, which connects event-hosting organizations with relevant speakers, also has caregiver representatives on its handpicked panel.
Sharing a strong clear message
“We have an expert panel, which runs the gamut of professionals, including nurses, social workers and nutritionists. But we also have a panel of survivors and caregivers who we know have strong, clear messages in their stories, and who are adept at sharing them,” says Monica, adding that the group’s last webinar of 2019 was hosted by social worker Sara Goldberger and was entitled Caring for the Caregiver.
It can, however, be difficult to identify the right language, Monica continues. “There are those who identify with the word ‘caregiver’ while others prefer the word ‘co-survivor’, because they’ve survived the experience as well.
“Above all, we try to be conscious of individuals’ preferences and personal feelings,” she explains. “But sometimes you do just need a word!”
The role of the caregiver can be deeply meaningful and intimate, says Monica. Yet the emotional, practical, and physical demands of the role – particularly during the current challenges we are facing – can be mentally, physically, and emotionally exhausting. Addressing your own needs will help you become a stronger and more capable caregiver.