By Katherine Arnup, PhD
Before my sister got sick, I had never really thought of myself as a caregiver. Of course, like almost every girl growing up in the 1950s, I had a menagerie of dolls and stuffed animals I took care of, doling out medicine, taking their temperatures, and giving needles with the tools from my red plastic Nurse’s Kit.
As a sickly, asthmatic child, I had more than my share of doctor’s visits, what with weekly allergy shots, and the panoply of childhood illnesses including tonsillitis, red measles, German Measles, chicken pox, mumps, and whooping cough. The experience left me with no desire to become a doctor, nurse, or caregiver.
My mother was an amazing caregiver. I suppose she pretty much had to be in the 1950s, what with big families (my parents had four girls) and her husband away on business for increasing amounts of time. Even as adults, we knew we could always call Mom whenever someone was feeling sick, and she would offer sympathy, advice, and a run to the drug store if needed.
But in 1990, at the age of 71, my mother suffered a devastating brain aneurysm which left her with multiple disabilities, needing 24-hour care until her death. Our caregiving mother was gone. To make up for our loss, my sister Carol and I pledged that we would take care of each other should one of us become ill.
Little did I expect to be called upon to fulfill that promise so soon.
In 1997, the cancer Carol has survived in 1978 returned with an unstoppable force. Along with a team of family and friends, I cared for her during the final six months as her life slipped away.
Here’s what I learned:
I learned about constipation caused by opioids, the difference between melanoma and sarcoma and what that meant for treatment options, about CT Scans, MRI’s, commodes, anti-nausea medications, K-basins, and mouth swabs. I learned where to buy the best home health products, ginger ale, and high-end popsicles. I learned where to order a hospital bed, a commode, a walker.
I learned how to request assistance from the Community Care Access Centre, and about different “levels of care”. I learned that 15 hours a week was the most care you could receive (even if you needed round-the-clock care) and that the care provided was almost no help at all.
I learned how to tell people they couldn’t visit, how to enlist Carol’s special people to sign up for shifts, and how to politely decline all calls for her.
I learned how to call a family meeting and ensure that everyone showed up; how to set an agenda, chair the meeting, and prepare the minutes, thereby establishing routines and commitments. I learned how to stifle my anger in the interests of providing Carol with the best possible care.
I learned that some pain just can’t be stopped. The pain in Carol’s foot, in her spine, in her knee. I learned that a broken heart still keeps beating.
I learned how to order a cremation, how to buy a cemetery plot, how to acquire the drugs necessary for assisted suicide, how to change a medical power of attorney, how to add a codicil to a will.
I learned that everyone has their own version of crazy when they are facing the loss of someone they love. I learned that I would never get over losing my sister. And I learned that her death transformed me in ways I could never have imagined.
I was 47 when my sister died (she was 51). Though often scared that I would not be able to fulfill my promise, my love for her enabled me to face my own fear of cancer, illness – even death itself. In facing those huge fears which had dominated and limited my life, I have been able to bring comfort to hospice patients and their families, to friends and relatives facing their parents’ aging.
If you’d asked me 20 years ago if I would be a hospice volunteer, I would have told you that you were crazy.
I would have told you I was terrified of death and that a hospice would be the last place I’d set foot in, let alone return to week after week for 15 years.
If you’d asked me if I would be the “go to” person for friends and family who were facing the loss of someone they love, I would have said, “you’ve got to be kidding.” I was the person who steered a wide berth around a person whose mother had just died, justifying my actions by the claim that “I don’t know what to say.”
Yet, love enabled me to face my fears of illness and death, to become a caregiver to my sister and my parents, and to learn the lessons I share with others through my writing, public talks, and hospice volunteering.
Katherine Arnup is a writer, speaker, life coach specializing in transitions, a hospice volunteer, and a retired university professor. She blogs at hospicevolunteering.wordpress.com. Her latest book, “I don’t have time for this!” A Compassionate Guide to Caring for Your Parents and Yourself, is available online at Chapters and Amazon and at select independent bookstores.
An earlier version of this article appeared in the online newsletter of the Vanier Institute of the Family.