Erik de Waal in
Daddy’s Boy
In his play, Daddy’s Boy, (performed at the 2018 Edmonton and Winnipeg Fringe Theatre Festivals), Erik de Waal offers a deeply personal, honest, truly loving, and at times, funny perspective on his relationship with his father (Frikkie). The story centers around the impact of Parkinson’s disease on their relationship. The play reflects on the challenges experienced by the person living with Parkinson’s, and his or her caregivers. A universal story, the account examines the commonalities of family, relationships, love, and human dignity from Erik’s personal perspective as a son whose father has Parkinson’s.
I was born during the biggest earthquake ever recorded in South Africa—my mother went into labour and “popped me out” in record time. Dad held me in one arm, Mom in the other, while the whole room shook around him. Apparently he only said, “We will have to watch this one; he looks like trouble.”
What I most remember is the laughter in our house—Dad loved to tell stories and read to me at night, often having to read the same stories over and over. My favourite was about how a monkey tricked a powerful crocodile into believing monkey hearts were so heavy they had to be left in the fever tree during the day.
I would look at Dad and see him as the tallest and bravest father. He was a banker in Johannesburg, South Africa, and then moved our family away from an oppressive city to a remote area when he took over his father’s farm. I loved growing up on the farm but I hated my new school and was bullied for my different accent.
Father was not religious and often fell asleep in church, snoring through the sermon. But he did believe in the sanctity of the earth, and of animals, and of people. “Every creature deserves to be treated with dignity,” he often said.
Little did we know about his impending loss of dignity.
My father was diagnosed with Parkinson’s disease in 2003 at the age of 67. We were hopeful, based on his specialist’s description of the normal course of the disease, that it would be many years (if ever) before the deterioration would render him unable to sustain a reasonable quality of life.
By 2006, we realized that the available Parkinson’s medications were not effective and that his deterioration was accelerating. He was enrolled in a trial for a new type of medication. One year into the trail, his balance has improved, he walks and plays golf again, still badly, but he plays and drives again. His face gained most of his expressions and he laughs again, like he always laughed.
Over the three-year trial, many of his symptoms did not progress and in some areas even improved. However, when the drug trial ended, his deterioration became even more rapid. In the space of four months, he went from being able to drive and play golf, to very limited independence and requiring more and more assistance. His frustration grew and for a man who had been so active all his life, this was a major blow. This had a devastating effect on Dad’s morale and his will to battle the condition. And the drug that worked so well in the trial wouldn’t be available for years, as the approval processes take so long finalize.
Unlike Canada, South Africa does not have a socialized healthcare system. Diagnoses such as Parkinson’s bring financial worries in addition to the stressors of dealing with a progressive degenerative condition. Luckily, my father’s doctor was one of the best in this field. Unfortunately, due to my parents’ financial situation, protocols such as deep brain stimulation (DBS) surgery were not possible.
The family came together, and we collectively decided that we would work to provide my father with the best quality of life possible and find strategies that would help him cope with the new challenges in his day-to-day life. We, as a family, took care of my father and engaged a permanent caregiver with experience of Parkinson’s patients for a couple of hours per day. The caregiver was able to accomplish routine tasks that allowed my mother (who was his primary caregiver) some respite. Our successful caregiver was with my father until his death and became part of the family.
In 2013, my parents are celebrating my uncle’s birthday in a restaurant when Dad suddenly chokes, and they can’t help him. He becomes unconscious. A doctor, who happens to come into the restaurant, in an attempt to remove the blockage, shoves his hand so deep down my father’s throat that his mouth bleeds. On the drive home Dad said, “I saw the white lights; they were beautiful. I wish I could go there now.”
In 2014, my father can’t walk, not even with help. He is permanently strapped into a wheelchair and spoon fed. We liquefy all his food. His annual check-up shows Father is strong and healthy as an ox, his organs functioning like that of a much younger man. Yet he needs care around the clock.
I rent out my apartment and moved back in with my parents to help my mother take care of father. Dad is bedridden and his body almost completely frozen. He has lost all control over bodily functions and can hardly speak—only grunts and huffs.
That Christmas would be our last together, and we are all there—two older brothers, spouses and grandchildren – on a beautiful sunny day in South Africa. Dad is strapped in a wheelchair. He has some wine through a sippy straw. We laugh and eat and drink. His brother and two sisters arrive – more wine and stories and sunshine.
It was on Boxing Day that father refused to eat and so began his hunger strike and journey towards the bright lights. He takes his pills and water but no food. My mother insists that it must be his choice. He bellows with hunger pains but that stops soon too. My mom holding his hand talking to him, offering him food, but he refuses, for 28 days.
On the 29th day I am in the kitchen and so used to hearing the harsh and rapid breathing – suddenly realized that everything was quiet. I walked into the bedroom and mom has her head on his chest, her body shaking dryly. She has no tears left. My father is dead.
Inspiration from Erik de Waal
The best advice I can offer anybody caring for or dealing with somebody with a progressive disease is to respect the person’s dignity. Treat the person the same way you always treated him or her before their condition severely debilitated them.
The original concept of Daddy’s Boy was to pay homage to my father—a highly principled human being who believed in the sanctity and dignity of all creatures. On reflection, I realized that there was a more important story to tell. Daddy’s Boy, while still celebrating my father, allows space for individual audience members to explore and experience their own conception of grief and grieving.
It’s my hope that in a culture that does not offer room for this process, the audience walks away empowered to cherish their memories and take the time they need to fully grieve the loss of a loved one, without discounting their emotions. I’ve had many encounters with audience members who have seen Daddy’s Boy expressing that they found the experience to be cathartic. I take comfort in knowing that although grief is an individual and often lonely experience—it is universal—and that no human being is untouched and there is a certain comfort in knowing that what we feel and experience is shared by all.
For more information on the resources provided by Parkinson Canada, visit Parkinson.ca
Watch for a future story about Tim and Sheryl Hague, partners on a journey of change, learning and perseverance.