(On my my twitter feed this morning, Pankhearst, an uppity collective of independent women writers, twitted about something on the Bitch Magazine blog. How is it that I had never heard of Bitch Magazine before?  In what Nick Cave have I been living? I checked it out and saw a post about home health workers. This being Bitch, it referenced a 30 Rock episode.  As this is a topic, close to my I heart, I wound up posting an overlong comment. You really should check out Bitch, and Pankhearst while you’re at it, but I’m also re-posting a slightly edited version of my comment below:)

In 2005, after electing not to treat his final bout with cancer, my father was able to get “home hospice” services. Like most elderly in the US who have insurance, he had “managed care.” He was encouraged to have an home health aide (HHA)  in the house to help with daily tasks. He and my mother reluctantly agreed. This was all arranged through the hospice services, which are part of a bigger hospital-affiliated health service. Several HHAs were sent. Some my parents had issues with, including theft. One finally stuck.

Rosa was great. My father wasn’t in terrible shape when she started, but he got fatigued easily, so it was good to  have someone who could help with tasks like sweeping up outside to avoid the sanitation ticket. Mostly though she just listened to my mother who seemed to be having a harder time than my dad, and took on some of the cleaning and meal preparation which he had been doing. Because Rosa wasn’t getting much more than minimum wage, we started supplementing what she was being paid. More time passed before my father finally began to weaken and seriously decline. I contacted the hospice RN and social worker about having Rosa there for more than the 20 hours a week. They refused, despite the fact that my mother was frail and couldn’t care for him, and my sister and I were already there as much as we could be. At one point the nurse said, “If he needs that much help, maybe he should be in the hospital.”

This was insane. The whole point of home hospice was to allow him to die at home. Although my parents wouldn’t have wound up paying more out-of-pocket, a hospital stay or institutional hospice would have been much more costly in billable hours.  Those costs are passed on to all of us in insurance premiums and Medicare taxes.

Rosa told her agency she couldn’t take on any additional assignments, and we paid her under the table to be there more hours.. She brought in her sister-in-law, who wasn’t a certified HHA, but made an immediate connection with my dad and did an excellent job. During the last couple of weekends of his life, they even brought in another relative. Dying is hard work for families. My sister came down from upstate weekends. I came everyday after work. There was very little physically that my mother could do to help, and emotionally she was a mess. Weak as he was, my father didn’t like using a bed pan and wanted assistance to the bathroom. He refused to get a hospital bed (or maybe by that point we refused for him) as it would have meant leaving his bedroom and moving into the living room, which was even further away from the bathroom, and didn’t have cable television. In those last weeks, someone had to sit with him even while he slept, making sure he wouldn’t fall out of bed, or as his cognition became fuzzy, try to wander.

We were lucky to have had the resources to pay these workers. They were lucky to have found a family willing to pay them a decent wage.

These women were more important to us during those final weeks than any nurse, doctor or social worker. The hospice service that bills the insurance, hires them through another agency. Everyone gets a cut.  The hourly bill is more than 3 times the wage they receive.  Granted this is the most “entry-level’ of entry-level work, but there must be some way to professionalize this, so that workers can get more of the hourly reimbursement for their labor.

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