Sue Robins owns a healthcare communications company and is the mother of a young man with Down syndrome. Robins used to blog about caring for her son and his encounters with the healthcare system. But that all changed the day she received a diagnosis of breast cancer.
Now Robins blogs about her experience as a cancer patient – one who wears a hospital gown and takes a number from a distracted clerk at the clinic counter. She’s a patient who weeps at the smallest kindnesses shown by staff and at the vulnerability she feels as a person whose life has been turned inside out.
I was interested in how Robins’ experience as a patient is shaping her attitudes towards both healthcare and the natural care she provides to her family at home. So I called her and we had a long chat.
Troy Media: What has your cancer treatment taught you about what constitutes good care?
Robins: I was surprised to learn that the elements of good care in the pediatric disability world are identical to those in the adult cancer world. Fundamental notions like respect, dignity, information sharing and partnership are universal, no matter how old you are. And we need to apply child-friendly practices to adult care because when you are ill or injured, you feel like a child again.
Troy Media: Why do you think good care is so difficult to dispense? Are there lessons here for family care?
Robins: I think there’s a notion in the healthcare world that if healthcare professionals feel empathy for their patients, they will burn out. I believe the opposite is true. Allowing yourself to be human with your patients, to let them get to know you, this builds trust and is the beginning of a relationship. Of course, all caregivers (paid or not) need to ensure they stay in touch with their own feelings or they won’t be able to care for others.
Troy Media: How has your cancer diagnosis and treatment changed your caregiver identity?
Robins: Since my cancer diagnosis, I’ve realized that my entire identity was consumed by caregiving. Because I spent all my time ensuring others felt cared for and loved, I had forgotten about caring for and loving myself. I even needed permission from my oncologist to go for a walk! In the hospital setting, I realized that I had no idea how to speak up for myself. I knew how to care for my kids and my husband, but not for myself. I could not hide behind being a mother or caregiver anymore because this was about me.
It was very hard for me to receive care from my family. My daughter, who is 20 and studying nursing, travelled home for my surgery. I felt terribly guilty about disrupting her life and about the worry my cancer caused everyone in my family. But my daughter took charge, helped us read the hospital pamphlets I’d been unable to open and even changed my dressings after my partial mastectomy. The key lesson here was that I needed to learn how to unconditionally love myself and accept that, as Brené Brown says, “I am enough.”
Troy Media: Will your care for your son change as a result of your own healthcare experience?
Robins: I think I didn’t realize the depth of pain that healthcare can inflict, and I hope I will talk to him about those realities and feelings now instead of just bribing him to go to the lab to get his blood drawn.
I think I’m less worried about being liked. My friend Isabel taught me this mantra when I was going in for cancer treatments: “You are the queen!” With that idea, I walked into the clinic knowing I deserved to be treated with kindness and with care. I was less apologetic and more direct.
I will take this newfound confidence into my dealings with my son. And I’ve learned to laugh more with my family and with my friends. Laughter is important, too.
A message from our Editor
An aging Canadian population and smaller families, combined with reduced health and social care budgets, mean the challenges of providing care to seniors will only worsen. Legions of families are buckling under the emotional, physical and fiscal burdens of caregiving. These pressures will be exacerbated by growing numbers of people living with demanding health challenges such as dementia, with fewer and fewer people to take care of them. The natural web of caring that so many of us take for granted is at risk of unravelling. Troy Media’s Family Ties examines the issues facing caregivers and the healthcare system in general and seeks solutions. If you have a story to tell, contact us at [email protected].