Dementia caregiver support group teaches about dementia and how to cope
Special to The B.C. Catholic
In 2006 Dad died, leaving Mom a widow at 87. We had thought she was healthy and sound of mind, but an assessment led to the discovery that she had an advanced level of dementia, probably because of a series of mini strokes before Dad died.
I joined a dementia caregiver support group, where I learned much about dementia and how to cope.
By 90 Mom was in a personal care home in Winnipeg, where I became involved in all aspects of care home life.
A year and a half later, in August 2013, I received the call I had dreaded since my mom went into the care home. My sister announced that Mom had not swallowed anything for three days and had been sent to hospital for hydration.
I left the next day by train from Vancouver. My sister texted me the next day that Mom had been placed on “comfort care.” I assumed that to be their term for “palliative care.”
On arriving, I learned from my sister that the hospital had sent Mom back to the care home without any treatment. I was confused, but my main concern was to be with Mom. She was alert, squeezing my hand, but could not speak or swallow.
Her body was in excellent health, other than the effects of the mini strokes, and apparent it was the most recent stroke that had caused the swallowing issue. A nurse leaving for holidays said, “It’s going to be a long journey.”
The next nine days were a life-changing experience for me.
At first, many family members would crowd into Mom’s small room. She was propped up during those visits and seemed genuinely content at the “family reunion.” I was determined to stay by her side day and night to reassure her that she would not be alone at the end.
It was all so surreal. I was on auto-pilot. The presence of my sisters was a great comfort to me. We kept vigil by turning her room into a chapel-like setting, with candles flickering and beautiful holy music playing.
We sang along with the Chaplet of Divine Mercy at 3 p.m. daily. Mom had loved to sing in her church choir. CDs of the rosary were also played and prayed regularly.
Mom’s comfort was maintained by the care home staff with much respect for her and the family. We were provided with sandwiches and coffee/tea daily. Staff provided us with a “kit” containing CDs, an electronic vigil candle, and mouth swabs for moistening Mom’s lips.
Wanting her best comfort, we were very much involved with the routine care. Her “pain” was managed with the minimum medication required, as we were told that too much would hasten her death.
This was very difficult to “watch,” my Mom was slowly starving to death! Some of my five sisters found it especially difficult, but we all had time to say goodbye. Pushing my own anguish aside, I thought, “This final journey is Mom’s, and I am here for her.”
On her last day, mom was showing signs that the end was near, probably within 12 hours. It was the eve of the Feast of the Assumption.
While three of my sisters and I were standing at her bedside praying aloud the litany of the Blessed Virgin Mary, Mom stopped breathing. There were no tears, just complete peace.
Staff attended to us, and one nurse expressed her amazement at how we had handled Mom’s journey, saying, “You have taught us something.”
I have pondered much on the experience, wondering what more I could have done; and what if this, and what if that. It led to me deciding to become involved in hospice as a volunteer, accompanying the dying in their final hours.
Lorraine Campbell is a member of St. Joseph’s Parish in Squamish.
