My friend and fellow writer, Doreen Pendgracs, recently wrote a blog about being a caregiver. I wanted to comment on it, but what I wrote was my own mini blog. With Doreen’s gentle prodding, I realized that writing about something personal can also be a valuable use of words. So here are my thoughts.
Most of us don’t go into relationships thinking about our possible role as a caregiver, but I knew from the day I met my husband that this would be my lot in life. I was in my 20s; so young and sure I could cure the world. It didn’t happen, and fighting it only wore me down.
We were told the original illness would eventually burn out, but if it has happened, it never really ever goes away. Like a chameleon it transforms and reveals itself in new forms, and I go into my caregiver mode again as we rush to the nearest hospital emergency room.
Our daughter grew up thinking that that all of this was normal for any family. As my husband convalesced in hospital following yet another surgery I would bring her, along with paper and crayons, and she would sit there creating her make-believe worlds with the reality of pain and suffering as her quiet background. When it was time to go I would lift her up and she would carefully navigate through the mass of tubes and IV lines to give Daddy a goodbye kiss until tomorrow. How could anything so unnatural feel so normal? And yet, for us, it always was.
I believe care giving can sometimes be more draining on the person giving the care, because of all the worry we go through. And with the health care system as it is, we have to be strong advocates for those we’re caring for.
I have had to make numerous phone calls to track down the right specialist to take on a new manifestation of the illness that was once easily diagnosed. I have had to yell at interns until someone listened. And I have cried on my own when I couldn’t take anymore, but I couldn’t let anyone else see how overwhelmed I was.
I think care giving is humbling and an important role in life. We do it because we love, and because we care. And because we care we give of ourselves.
My mother, Lya Joy Boles, passed away on Tuesday, February 10, 2009 at age 77. My parents live in Missouri, but were born and raised in Windsor, Ontario (Canada), so that’s where mom was buried, February 13, 2009, near her parents and family.
My mother and father would have been married 56 years November 22, 2009. They met briefly in Windsor but didn’t start dating until they were in London, Ontario (where I live now). Mom was a student at the (then) Victoria School of Nursing. Dad was a medical student at The University of Western Ontario.
After they were married, mom worked as a nurse while dad was completing his residency. Not long after, they learned mom was expecting me. My mom always said I was a “joyful surprise,” which, loosely translated, means unexpected. They wanted kids, it just happened earlier than planned. Mom said she wanted children two years apart and my sister, Anita, (who now lives with her husband and daughters in Alexandria, Virginia) obliged.
My father was a radiologist and a specialist in cancer (treatment and research). His work took us to Detroit, Michigan, where he practiced at Henry Ford Hospital.
My sister and I grew up in a good home my parents had built in Farmington, Michigan. Mom chose to stay at home to raise us (except for a brief stint as a nurse for a paediatric doctor, but she was always getting sick and bringing home illnesses from work, so she eventually left).
Mom was loved by all and had many good friends. Because her mother (my maternal grandmother, Esther Leon) had eight brothers and sisters, who were very close, mom grew up with lots of aunts, uncles and cousins and maintained close relationships with them. As my dad reminded us in his memorial speech about mom, when someone called the house and asked for “Dr. Boles” it was always for her, not him. When friends, family or members of their families were sick they would call mom for advice. She was happy to help out. Her diagnosis was usually bang on and the remedies worked. If nothing else, she was there for support when needed.
Mom had a strong sense of right and wrong though sometimes my sister and I considered it prudish or old fashioned. When we went through a phase where we were constantly telling each other to “shut up,” mom decided to penalize everyone in the family who continued to use that phrase. Every time one of us said “shut up,” including mom and dad, we had to put a nickel in our Tzedaka (charity box, also known as a Pushka) we filled with coins, the contents regularly delivered to our synagogue to be donated to various good-will efforts. After a while it became a game. Sitting at the kitchen table over dinner someone would inevitably say those two words and everyone else would point their fingers at them saying “A nickel for the Pushka!” Many charities benefited from our bad language.
My mom wasn’t a hero and didn’t want to be in the limelight, but sometimes she was. For example, many years ago she took a flight to visit someone (probably me or my sister). When dad went to the airport to pick her up she was surrounded by everyone from the plane who were talking to her and congratulating her. Apparently a passenger had collapsed on the tarmac and the call went out for a doctor. Mom had been teaching CPR (volunteer work) and said she could help. She ran from the plane to the tarmac and started administering CPR until the ambulance arrived. I asked her if she saved the man and she said she hadn’t followed up but doubted it. But that was mom. She did what she could when she could. Her small gestures were always huge.
After my sister and I were settled and had started our own lives, dad had the opportunity to set up a private practice associated with a hospital in Columbia, Missouri, hence their move there.
Despite the geographical distance between us mom’s first priority during a shopping trip was to the childrens’ clothing store for her three granddaughters. Birthdays included dozens of presents from grandma and grandpa. The grandchildren visited grandma and grandpa during the summer for at least a week, generally at different times. Our daughter, Jennifer, has fond memories of chatting and shopping with grandma and hitting golf balls with grandpa. She went there with a half-empty suitcase and came home with one overflowing with an entire back-to-school wardrobe and backpack!
My mother knit like a professional. She made gifts for her friends’ and cousins’ grandchildren when their children were having babies. Many layettes included a beautiful, soft baby blanket knit by my mother’s loving hands. And each granddaughter had blankets and sweaters knit by grandma.
Mom knit our family together with all our diverse and colourful personalities. She was peacemaker and a good decision maker. She and dad built a life together with little money until they had a comfortable income. They raised two daughters, paid for our university education and for mom that was reward enough.
Mom was great at her job as a mother, confidant, grandmother and wife. Her cooking skills were amazing. Our house looked like you stepped into the pages of Better Homes and Gardens.
Mom became sick about two years ago. It began by robbing her of her short-term memory and, later, her mobility. She was admitted to a nursing home for physiotherapy so she could return home with my Dad. She never left the nursing home, other than some visits to their house on weekends with my dad, when she was able, and many admissions to the hospital, generally through emergency, for an array of physical maladies.
This is the woman I knew during the last 18 months of her life. But it is not the woman who she was and who we remember.
I pray that mom is at peace now. There is a huge hole in my heart, but it’s slowly getting smaller. I am sure that my mother is filling that space with her love and caring. That’s who she was. I would never have expected less.