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.
With these resources in place, my brothers and sisters and I made up a schedule of visits, Mother wasn’t really eager to see any of us, she didn’t want the pity, and she was afraid she wasn’t at her best. My wife and I visited first.
Mother had lost weight, 20 pounds, but didn’t look sick, really. She was lying propped up on pillows in a lawn chair when we arrived from the airport, enjoying the beautiful weather. She said she was very tired all the time. I asked her if she was scared. She said no, she just wished it didn’t have to take so long and end so badly. “I wish there was a needle to just finish it off”. I promised her that if she wasn’t scared, I wouldn’t be scared either, and I said everything I had done was to ensure she could die at home.
We made a vegetable frittata for my parents for dinner, and mother had seconds, which was rare. She and my father quibbled over whether she should donate her body to science . “They need cadavers, you know”. She didn’t feel well after dinner and had to lie down. This was before we sorted out the anti-nausea pills.
She was getting around, barely, and still sleeping downstairs on the lower level, taking the stairs. We’d had a stair glider installed the year before, but she only used that for the laundry basket. She used a long staff to walk around outside, resting frequently. She would rest after dinner, then get up at 10 PM to take the dog for a walk, just to the end of the block. The dog was suffering from not being walked and was worried about my mother.
Mother’s condition included the following:
Lower back pain (caused by the tumour, treated with Tylenol and codeine)
Insomnia (caused by the pain, treated with sleeping pills)
Nausea (caused by the growth on the stomach, treated with anti-nausea pills)
Weight loss (caused by the nausea, treated with Ensure meal replacements)
None of these conditions was being treated very well, and in none of the cases was treatment especially effective. We needed a good doctor, and mother’s family doctor wasn’t the one we needed.
When we said goodbye, I wasn’t sure I’d see my mother again. She said second visits weren’t in the cards right now, she didn’t feel up to it. I told her I’d respect her decision and we’d talk a lot on the phone. I said I’d try not to be any sadder than she was, and she said she wasn’t sad, really, just pissed off.
After my wife and I left, my younger sister and brother dropped in. They accompanied mother and dad to the Radiologist in the big city. He was very professional and solicitous and final. It was a large mass, it was untreatable, palliative surgery to alleviate pain only was available, and my mother had a few months to live. He wouldn’t specify more clearly than that, but that was good enough for us.
After the Radiologist appointment, mother visited the palliative care physician, a warm and caring woman from the area who seemed to know everybody we had met already. This is when treatment started to improve dramatically. First, the mix-up with the anti-nausea pills was fixed (this led to my mother starting to eat much better and actually regain some weight). Then, low-dose liquid morphine was prescribed for pain, to be gradually increased to solid pill form.
Next, mother was switched off the sleeping pill that had made her feel so groggy all day, and was put on one with a shorter effect. Then, a steroid was prescribed for her energy. Finally, a laxative was provided in case the morphine caused constipation. It was clear the palliative care physician was the doctor we had been waiting for. She knew death, and how to manage it, and this is very specialized medical knowledge, not apparently available to GPs.
While all these things would eventually have fallen into place, it is because my sister was on hand to act as my mother’s champion that some very serious initial errors in diagnosis and treatment were resolved. You can’t let the system police itself, however comprehensive it may be.
My sister cleared out the spare bedroom and turned it into a day care room, with a bed for resting during the day, and a large medication chart and all mother’s medications organized on the bureau. It was decided that when the time for the hospital bed arrived, it would be put in the TV room on the ground floor, which had a good view of the garden.
By this time, my mother was eating Kathie Rose’s excellent cooking, gaining a little weight, sleeping better and enjoying herself during the day more. My older brother and his wife visited, and my mother kept trying to shoo them out of the house so she could have some peace. My other younger sister visited with her husband, and mother complained people were hanging around too long. She was definitely starting to perk up!