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My mother never told us her wishes

By Alexandra
Posted on

I wish I had the conversation with my parent.

How can I prepare others to decide for me? It would be best to let them know me better, before I need them to think for me. And maybe first, I need to outline what gives my life meaning. To know that, is to know all that is most important.
 My mother was a very private person who hated conflict and didn’t directly express her wishes or thoughts on treatment options. Nor did we really understand what gave meaning to her life.  We did know she liked peace and quiet and reading and tending to her plants.

We did know that she wasn’t a “fighter” in many ways, except when she was briefly placed in a nursing home after a fall resulting in a broken arm and leg. She fought to recover and go home as soon as possible. She was compliant with physical therapy and never lost her spirit. But later on when her diabetes was getting worse instead of better, she told me that she would never start insulin injections. She would refuse to go that far in treating her disease. When I told her she would die if she didn’t comply, her response was: “Well, I just couldn’t live like that.”

Her tolerance for medical interventions was low. She hated taking pills or visiting doctors. She hated getting old and she was only 78 when she died. A year after her nursing home experience, when she said she wanted to return to her home in Arizona rather than stay in Los Angeles where she was undergoing chemotherapy and radiation for her glioblastoma (brain cancer), it seemed consistent with her private wish for peace. She knew she was at the end of life.

The treatment was palliative and expected to give her maybe two months more of life, which then consisted of vomiting, incontinence, increasing fatigue and the inability to speak or read.  She and my father had spent 10 weeks at my sister’s home in Los Angeles, for the purpose of obtaining better medical care. My mother’s cancer was diagnosed in Los Angeles. She then underwent de-bulking surgery, followed by chemotherapy and radiation. This form of cancer progresses swiftly, can’t be cured, and in her case affected her language abilities most acutely.

She was not finished with treatment and the chemotherapy and radiation would not be pursued in her small town in Arizona, although they could have been. The treatments were making her very sick and fatigued. She could only tell us she wanted to “go home.” To her own house that she loved and where she would not be intruded upon by doctors, medical equipment and various therapies that made her very sick. She died in a free standing hospice almost 2 months after returning to Arizona.

She never regained her ability to speak, but she rested in her own home for the first few weeks, where she felt safe from intrusions. She stayed at home until she could no longer leave her bed and needed more supervision and help than my father or a home health aide could provide. Then she moved to a free standing hospice where she died several weeks later. She never told us her wishes and couldn’t at the end, so we had to surmise what she wanted.

Her oblique “I want to go home” was given the good faith interpretation that enough was enough. We later learned from friends that she had told them she thought something was very wrong with her and that she didn’t have long to live. She specifically thought something was wrong in her head. She had said something like this to me as well, but brushed me off when I asked her why she felt that way. I encouraged her to see a neurologist which she resisted. I now believe she had felt this way for at least 6 -9 months before being diagnosed.

Being the private person she was, and hating medicine, she did not pursue medical advice until my sister (a nurse) and I (an attorney) witnessed her having a seizure and insisted she be medically evaluated. She had been having these episodes before, but didn’t know how to describe the experiences to her physician in Arizona.

Her physician hadn’t been taking her symptoms seriously, until my sister and I attended her next medical appointment. Sometimes you don’t really know what someone wants, because it can’t all be written down.  My mother never wrote any kind of medical directives although I made her complete a health care power of attorney naming my father and I her agents, should the need arise. She and my father completed these while they were still healthy, before making a trip to Australia several years earlier.

I did know she did not want to be kept alive on machines, we had discussed that particular circumstance because the issue arose with her own mother. Beyond that, I knew very little, although more than I realized. It would have been helpful to know whether she would have wanted to continue to undergo chemotherapy and radiation to extend her life maybe a couple of months, even if it made her feel ill and she would be unable to communicate or read, her greatest passion. Instead, we made the decision we thought most consistent with her wish for peace and lack of intrusion.

I think it was the right one. But, how can I prepare others to decide for me? It would be best to let them know me better, before I need them to think for me. And maybe first, I need to outline what gives my life meaning.  To know that, is to know all that is most important.

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