Caregiver's Diary: Seamless Care

August 20th, 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 called me in a panic on Canada Day “You’re doing too much! We’re getting calls and appointments from people we’ve never heard of! You can’t take care of us by phone from Toronto!”. She had recently been diagnosed with cancer, and I had spent the previous day arranging home care for her in the Maritime province she lived in.

I explained that, not only could I, I had, and it was all in place. I listed the resources they had available to them, writing it up and including phone numbers:

Veterans Affairs Rep (to visit next week to coordinate payment) Palliative care physician (visit next week to assess medication) VON nurse (to visit that day to perform intake evaluation) Continuing Care coordinator (to visit in two weeks to say hello) Palliative care volunteers on call in town Her family doctor

This last was problematic. After the initial scan in March, there had been no follow up. It wasn’t until my father insisted on knowing more that my mother’s doctor scheduled the Oncologist appointment, at which my mother learned she had cancer, in May.

My mother’s doctor’s first language is not English, and mother finds her very hard to understand. Somehow, some very critical information was lost for two months, and it may be that unconscious triage was at work (“she’s very old, what does it matter?”). Had he known earlier, my father would have saved considerable sums on travel arrangements made and cancelled.

In addition, mother’s doctor had prescribed her anti-nausea pills, but given the wrong instructions. Instead of taking them half an hour before meals, she was taking them with her meal, which did nothing. It was clear that this was one case where the family doctor was not going to be the champion for excellence in care.

My mother’s younger sister was visiting her at the time, and between them they engaged a nice Maritimer single mother called Kathie Rose to help mother at home. Kathie Rose had worked for a commercial home care agency and had been exploited. She was billed out at $28 an hour and paid $12, for very skilled in-home care and assistance. She was a find and a treasure, and she also took on walking the dog. Mother paid her better than her previous job, and billed Veterans Affairs in return.

So now we had Kathie Rose added to the mix, with her cleaning, cooking, repairing, and general fix-up skills. I called her and asked her to keep in touch with me if she ever needed anything. She answered, quite properly, that she worked for my mother, and would have none of it.

The VON nurse, a large pleasant woman, visited and conducted a very thorough medical assessment, leaving a copy of the file for my mother. It was arranged she would visit once a week for now.