Caregiver's Diary: A Good End

August 6th, 2010

Editor’s Note: We have asked a caregiver to blog anonymously about his journey. In each newsletter we will publish a new installment of his story. It is the story of a man caring for his parents as they grow older.

My mother is a study in contradictions. An avid churchgoer, she has no discernable spiritual or religious convictions. Deeply loved by her friends and children, yet emotionally reserved, she shows affection sparingly. A child of the depression, yet content to spend most of her nights in the backyard under a tree, where she had a bed.

In April, my mother came down from the Maritimes where she and my father live to visit me in Toronto and we had lunch. She was feeling tired and not eating well. In June, my brothers and sisters and I learned she had abdominal cancer. She had had a scan. There was a mass. It had metastasized to her stomach. While nothing had been determined for sure, and the disease had not been staged, I was able to infer from the symptoms that it was at Stage IV of a four stage cancer, and the only treatment possible was “supportive care”.

My mother is old school, and had long made it clear she wanted to make a “good end”, with no fuss and no muss. At 87, she had been ready for it to happen in a couple of years, certainly not longer. She made it clear that there would be no extraordinary measures, no chemo, no surgery and no radiation. She wanted to die at home, not in a hospital “full of tubes”.

I did my grieving and got to work. A Google search yielded the website of the Regional Health Authority in the province they lived in. Under the drop-down menu for “services”, I found “Palliative Care”. Clicking on this yielded an informative page with the address and phone numbers of the Palliative Care Clinic in their small town.

I spoke to a nice lady called Jackie, who, after a quick commiseration, was all business. Age, diagnosis, current health status and name of local doctor (who she knew). She would have the file copied and shipped over to her office.

She explained that her outfit would tend to the medical needs of the client and all medical visits, while the provincial Continuing Care agency would handle housekeeping and cooking, as well as dressing, bathing and feeding when this became necessary. They would also provide a hospital bed at the end. Jackie gave me their number. A visit by the local dedicated Palliative Care physician was arranged for a week later, and I thanked Jackie.

I next called the Continuing Care agency, in the big city, where I got a nice lady called Barb who performed a “telephone intake”. Once more, age, diagnosis, doctor, health conditions, capabilities, living conditions. Barb said she would have someone get back to me. A little later, Allison called from the local Continuing Care agency and said she had opened a file. She wanted to schedule a VON nurse to make an evaluation visit the next day (a national holiday!), but needed my mother’s permission. I called her, but no one was home. Allison and I made an executive decision to schedule the visit anyway, and then she asked if my parents were veterans.