By Paula de Ronde, Burlington, ON, Canada
Author of My Bert Has Alzheimer’s: Caregiving is Living for Two
I have yet to meet a caregiver to a loved one with dementia who says: “When I got the diagnosis I knew everything about the disease.” The more usual response is I was sucker punched, ambushed, taken by surprise, completely out of my depth, bewildered.
I was also uninformed but not for long as my life, career and advocacy interests all seemed to converge with the diagnosis. Writing became my therapy and a major self-care issue as I stumbled through the highs and lows of caring for my beloved husband who was slowly losing his personhood under the onslaught of the dreaded disease.
I recorded as I learnt and needed to share. I wanted to pass on all that I was experiencing to my new community of fellow caregivers, my companions on this unfamiliar road.
I rebelled at the stigma associated with Dementia acknowledging that this was the real ignorance that manifested itself in such negativity. I wanted to scream: “It’s a disease! He’s not crazy!” Instead I wrote, gave tips to combat the ignorance and wrote about the pathology of the disease.
I discovered the true meaning of being bone weary and at the same time found the comfort of family, friends and a support group I dubbed the Lifeliners with whom to laugh. I needed help and as I found it I gave it back by writing.
Laughter is the best medicine and ironically enough Alzheimer’s provided the comedy. If it was a play it would be a magnificent tragi-comedy. Lifeliners had coffee every Wednesday and I still laugh remembering these opening lines:
“Last night I slept with seven dead people.”
“Dinner was my famous pot roast swimming in green sludge.”
“Well, ladies I think I have completely slipped into Alzheimer’s World.”
So I wrote of hallucinations, displaced memories, confusion, confabulation, therapeutic lying, the 7 As of dementia, Red Lines, involuntary separation while all the time preserving dignity, relieving anxiety, loving and caring and living for two in two worlds.
The agony of deciding to place my husband in a Long Term Care facility was a heroic battle between my head and heart. I listened to my head. It was the right thing to do but my heart ached. “Why are you leaving? I want to go with you. I won’t be a bother. I love you.” Wracked with guilt, for nearly three months I sat and cried before driving to my now empty space where I fill the kettle too high for one.
Yet, there was living to do. To cope, I developed my philosophy of ‘living in smalls’ or finding amazing moments of pure joy and intense happiness in the simplest pleasures, a soft touch, a smile, the night sky, a flower. I also had an all encompassing mantra: Love guides me, Empathy empowers me, Patience is my best tool. This is what I pass on to all caregivers and persons living with dementia.
I hope we all enjoy a life full of the wonder of living in smalls and finding it is enough.
Bio:
Paula de Ronde author, caregiver, speaker, advocate is a retired librarian. She has been recognized in her profession receiving the Ontario Library Association’s Distinguished Service Award; as a caregiver –Heroes in the Home Award and is a 2022 Honouree 100ABC Women. (100 Accomplished Black Canadian Women).
Follow Paula through the links below:
Linked-In: paula-deronde-5b657318/
FaceBook: paula.deronde.5
Twitter: @derondepaula
