Caregiver’s Diary: Seamless Care

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)
Exhaustion

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.