Katherine Arnup, Ph.D.
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, whooping cough. The experience left me with no desire to become a doctor or a nurse. I would be a teacher and, I asserted at 12, I’d be a mother, though I was certain that I would never marry – a prediction that turned out to be almost entirely accurate.
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. Imagine, my mother had to deal with all four of us getting whooping cough, though not, of course, at the same time! That would have been far too efficient. She nursed my sister Carol when she had scarlet fever, mononucleosis and, as an adult, melanoma.
While I always pictured I would care for my children, caring would be part and parcel of motherhood, along with making play dough, overcoming sleepless nights and singing nursery songs. Caring was more of an action than a role, and certainly not an identity.
I don’t think my mother defined herself as a caregiver. She was to be a companion, wife, mother and homemaker. Not a laundress or seamstress. Not a nurse or nursemaid. Though she became all of those things to a great extent – and less and less my father’s partner.
As adults, we knew we could always call Mom whenever someone was feeling sick, and she would offer sympathy, advice if asked for and a run to the drugstore if needed. She loved being a grandmother, and the connection between us grew much stronger following the birth of my first daughter.
In 1990, at the age of 71, my mother suffered a devastating brain aneurysm that left her with multiple disabilities, needing 24-hour care until her death in 2006. 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, Carol’s cancer 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.
This was long before the Internet and the wide range of information, resources and connections it offers. It felt like we were on our own, relying on books, articles, friends with medical training, but mostly flying by the seat of our pants. Since I was on sabbatical from my job at the university, I had precious time to spend with Carol day after day.
I learned about constipation caused by opioids, the difference between melanoma and sarcoma and what that meant for treatment options, about TKR (total knee replacement), CT scans, MRIs, 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 how to request assistance from the Community Care Access Centre, and about the 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 just a step above a “sitter,” someone you could hire to sit (and hopefully not fall asleep) with Carol during the night. I learned where to order a hospital bed, a commode, a walker.
I learned how to tell most people they couldn’t visit, how to enlist Carol’s special people to sign up for shifts, how to politely decline all calls for Carol.
I learned how to call a family meeting and ensure that everyone showed up. I learned 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 how to focus my anger on getting medical treatment sooner than the established (far off) date.
I learned that getting cancer sucks – and that getting a terminal diagnosis sucks even more. 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. Those fears had dominated and limited my life, but by facing them, I have been able to bring comfort to hospice patients and their families, and 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 week after week for 14 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 someone 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 and life coach specializing in transitions and a retired Carleton University professor. Author of the award-winning book Education for Motherhood, a history of advice for mothers, she has pioneered studies on the diversity and complexity of family life. In her latest book, “I Don’t Have Time for This!” A Compassionate Guide to Caring for Your Parents and Yourself, she tackles the last taboo – death itself.