Not Good Enough

My mother suffered from paranoid schizophrenia as I’m sure many of you know by now. Schizophrenia is a debilitating brain disease. Mother heard people talking to her who weren’t really there. She believed in elaborate and sometimes frightening delusions because she could not distinguish reality from fantasy. Sometimes the noise in her head was so great, Mother had trouble keeping track of time and sometimes forgot where she was.

My father had health problems, too, and in the early ‘90s, he was forced to retire early. He was allowed to keep his employee based health insurance, but Mother’s policy was dropped. Because she had a serious preexisting condition, no private insurance company would cover her, and my parents couldn’t afford to pay for it anyway. Because she was married to my father, she was not eligible for Medicaid (except for short periods of time when she was hospitalized and racked up thousands of dollars in hospital bills), and she was too young for Medicare.

Her psychiatrist knew that Mother would not be able to function without antipsychotic medication, so he continued to see her after she lost her insurance, and he arranged for her to receive free samples of her medication. Obviously, you don’t come across a doctor like that very often. She was lucky in that regard. (The doctor was a Muslim emigrant, by the way.) This generous man provided psychiatric treatment, but Mother went without regular checkups and routine medical tests for the last 12 years of her life.

In early December, 2003, she was diagnosed with stage 4 metastatic inflammatory breast cancer. This was a shock considering she had been complaining of a backache. Finally, she was eligible for Medicaid because of the diagnosis and her financial situation, but it was too late. She died two and a half months later.

Mother told us her back was hurting in September. We all hoped it was just a backache and that it would clear up on its own in time, but it didn’t. She finally went to see a doctor in mid-October. He was reluctant to order tests because he knew she and Dad didn’t have the money to pay for them, so at first, he only prescribed pain medication. Her condition did not improve, so he sent her to have a scan in late November. There was a shadow on the picture of her spine. That’s how she landed in the oncologist’s office in December. He took one look at her beasts and knew immediately what was wrong. He admitted her to the hospital the next morning, but as I said, it was too late. They did manage to shrink the tumor on her spine with radiation and the tumor in her breast with chemo. He wanted her to have surgery in the spring. He thought he might be able to extend her life for two or three years, but Mother developed pneumonia in February, and since both the chemo and radiation had knocked out her immune system, she was unable to fight it. We removed her from life support a few of days after Valentine’s Day.

Sometime after that, Dad told me about something that happened in September. I must have been out walking in the woods because I wasn’t around at the time. Mother fell on our front porch, and she couldn’t get up. When Dad found her, she asked him to call her an ambulance, but Dad didn’t want to be stuck with a bill he couldn’t pay, so instead of calling her that ambulance, Dad—a man with a serious heart condition and an implanted pacemaker/defibulator—pulled her up and took her inside. Neither of them told me what happened when I got home. We didn’t know it, but Mother’s back was broken, and if Dad had pulled on her in the wrong way, she could have died paralyzed on top of everything else.

In my opinion, any healthcare system that leaves someone like my mother lying helpless on the floor and afraid to call for help because of money is simply not good enough.