A few years before she died of breast cancer at 52, the mezzo soprano Lorraine Hunt Lieberson sang Bach\’s Cantata \”Ich habe genug,\” (\”I have enough\”). For the performance Lieberson dressed in a hospital gown, with tubes emerging from her body, signifying a sick woman\’s readiness to die.
I have a recording of that performance, and I\’ve been listening to it these days, along with other music by Bach, as the news about my mother oscillates between \”not so bad\” and \”definitely worse.\”
I hear from my sister, who is taking care of our mother, almost every night. In between the phone calls my mind endlessly replays the latest information, weighs alternatives, imagines outcomes. It seems that no medication exists that will relieve my mother\’s post-surgical pain without knocking her out for the better part of a day. But sleep is treacherous, for while she sleeps she is immobile, and immobility brings the danger of stroke, pneumonia, and a host of other ills.
Also, while she sleeps she is not doing physical therapy, which means that she is not improving, which means–and this is what my sister and I dread–that she will not be allowed to stay in the rehab facility where she is presently receiving wonderful care. She will have to go to a nursing home.
The doctor, who seems kind as well as wise, has recommended that my mother receive only palliative care. But how does \”palliative\” translate when blood sugar levels rise sky high? And does \”palliative\” mean that we abandon all attempts to keep her moving? Does it mean that she is constantly on pain meds, i.e., unconscious? Then there is the matter of my mother\’s mind, which runs the full gamut of dementia stages: unable to make any sense on some days, \”almost herself\” on others.
The doctor tells us that it is time to begin thinking about hospice.
How does one \”do\” end of life? My sister and I are woefully inexperienced. We\’ve never done this before. We have good will, but no skills.
There is something about the music of Bach that makes me feel that he knew everything there is to know about being human, especially the stuff that cannot be put into words. So I listen to Bach these days, and wait.