So this is what it had come to and, as always when we were together, the moment was sweet. The only game my sister, Enid (I call her ‘E’) and I could still play was my putting food into her mouth as she sat up in bed. It was a lucky thing I had come at the supper hour when she was awake and there was something we could do.
- When I was born, Enid Mary was twenty-eight months old and took her responsibilities of loving her living baby doll very seriously. She rocked my cradle, hushed my cries and poked me in the cheek (just a teeny bit) to make me smile. As we grew, E was always there to wipe my nose, dry my tears when I hurt myself falling, and pull up my saggy pants which had been hers.
- This was the first time in seven months I had come to see her at Providence Healthcare. It is a long drive and I only go when I have other compelling things to do in the city of Toronto. She is always there.
- After the visit I phoned my niece, Anne, to tell her we had a good time but I was shocked to see how E’s condition had deteriorated. Anne is very devoted to her mother, visits regularly and maintains close contact with the hospital personnel.
- She said the Alzheimer’s was taking its expected, inexorable course of slow regression to infancy. Just after my last visit Enid had abruptly stopped walking, stopped responding, and continued to stop talking. The next step would be she would forget how to swallow.
- In fact, it was time for us to start thinking about end-of-life arrangements. She was very glad I had called because she wanted me to read the online literature and tell her what I thought. Enid had said, some 18 years ago when the illness was first detected, she didn’t want any unnatural interventions.
- When a patient can no longer swallow, nurses need to know whether the family wants them to start using intravenous feeding, or insert feeding tubes in the throat. If the patient stops breathing, does the family want them to administer CPR? What about rushing them off in an ambulance to another hospital for intensive care?
- As I read the literature I thought about Enid’s eyes and what I could divine from their expression. I think she is fearful and bewildered. She is pleading for someone to understand that she has always been a very good girl and is still striving to do her best. How could she possibly do any better when somebody has been stealthily stealing her brains? Could you?
- None of these questions has a good yes or no answer. You might gain an hour of life for prolonged setbacks and trauma. The literature is most clear and positive when it says the patient must be treated with comfort and dignity and I couldn’t agree more with that.
- Those are the qualities of life E provided for me when I was a newborn and that is exactly the stage towards which she is regressing now. I read, “Capacity to feel frightened or at peace, loved or lonely, and sad or secure remains. The most helpful interventions are those which ease discomfort and provide meaningful connections to family and loved ones.”
- Some few months on, I dread to think, I may find myself living in a poorer world, deprived of Enid. She is my compelling reason now to go to Toronto to stroke her forehead, lay my hand on hers, tell the world in her eyes that I love her and sing her a lullaby.
- I pray she will die naturally in her sleep with comfort and dignity after suffering her prolonged tragic fate so courageously. She will always be my hero.
Margaret Kell Virany is an Ottawa-area author of memoirs based on the raw emotions of love and adventure found in generations of her lively, devout family. Right now she is usually glued to her computer loom, working on a novel about the journey of a 60-year marriage. On June 4th she will be at the Media Club of Ottawa‘s table under the tent at Prose in the Park. Try not to miss this stimulating, free, open-air book event. Impeccable, aristocratic host William tenHolder of Café Wim fame, and MCO president June Coxon who has written about Ernie, the most worthy cat ever, will be at the table with Margaret.