Tuesday, January 24, 2006

dying at home

I realize my last post may have been difficult to read. I apologize if this topic is one people don't want to read about. But, writing about it is a way of putting it in perspective for me.

Taking care of a person, being there for them when they are near death, is hard. Especially if it is someone you love. It is hard to see them in pain, hard to accept that they will not recover from the next progression of the disease. It is relentless.

But I want to make it clear that my mother's death from advanced colon cancer, except for a cruel last week and a half, was monitored and eased with exquisite professional care. Doctors are for the most part too pre-occupied to deal compassionately with patients anymore. Well, at least that has been a predominant experience of mine. But I have nothing but the highest respect for the home-care nurses and the hospice staff, both doctors and nurses.

Coming in and out of the home, checking on emotional needs as well as physical, being there and caring long after their shifts had ended: hospice nurses, home-care nurses, therapists, social workers. Sometimes a day would be a constant rotation of people coming in and out, each staying for an hour, providing a wonderful continuity of care from day to day and week to week.

People would rotate, probably as a professional sanity precaution, I suppose. But their records and communications were always top-notch, and they often laughed and put us at ease.

Pain medication has come a long way. Though my mother had a cancer that should have caused her great pain, the hospice doctors were expert at providing her with a thoughtful combination of drugs that enabled her to have a quality of life none of us had thought was possible. For three months she was able to get out and about. With awe, we would wonder "where has the pain gone?", but not want to know and just very, very thankful for its absence, always aware of the darkness lurking.

She was not bedbound until the last two weeks. Those last weeks were simply horrible. Things fell apart and pain control got lost, not fully settled again until her last two days. And those were the times we wondered if she would be better in a hospital. She wondered too. But we also heard first-hand horror stories of people suffering unattended, even in hospice in the hospital.

When she died, it was after midnight, in her home, and my brothers and I had been with her all day, and were going to be there the next day. It was the second night we had an overnight nurse provided to us, after a weekend on my own where I had slept little, if at all.

It was late September, and the weather was lovely. I often thought it was good that she was dying in the summer and not the winter. She was able to get outside. We were able to bring the outdoors in. There was fresh fruit and raspberries, her favourite. She could sit on the couch and look out her front window. When the bed was brought in, it was set up in the livingroom. Life's small moments: birds warbling outside, her dog paddling around on the floor, the grandchildren singing her a song.

She lived well, up until her death, and she died at home.

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