So the woman who was to start next week as my aide called this afternoon to say she won’t be coming to work. Something about her grandson having to go to summer school, and her son bringing him to her home to wait for the bus. Meanwhile, my trash is overflowing, the sink and counters are covered with dirty dishes, there are two loads of dirty laundry piled on my tiny bedroom floor, and I don’t remember when I last had a shower.
The county nurse says the call-out list to agencies for people needing home health aides is longer than it ever has been, but she refuses to say how many people are on the list. She thinks that might be a HIPAA violation. Agencies use HIPAA to hide behind, not to protect their patients.
The commissioner of Adult & Long Term Care says that he doesn’t have any plan to deal with the all the sick people who are living in their own filth because they can’t get aides. “I don’t know what to do,” he says; “I really don’t.” He took the job, with its power, prestige and big bucks, but he doesn’t know what to do for the people in his care who are extremely needful.
I would suggest that you start by raising the wages of home health aides so the job will become more desirable. Currently, the wage is about $10 an hour, and has been for longer than I can remember. The commissioner says that the wage rate for Medicaid aides is set by the state, and that to get the rate raised would mean going through the legislature and they won’t do anything. What I believe is that he hasn’t tried. He sits in his office—clean, well-groomed, and well-fed—and has no idea of the conditions of poor people who are dependent upon his office for services. We are not a reality to him.
As I write this, the humidity is 97%. The Good Doctor tells me that the Chinese have known for a thousand years that high humidity causes very bad trouble for people with autoimmune diseases or pain. His wife has lupus; with the high humidity, she can’t get out of bed. Neither can I; I am too tired and depressed. No help is coming and there is no light at the end of the tunnel.
Yesterday the nurse called to say the doctor at Syracuse Community Health Center won’t see me anymore. She wouldn’t say why. The doctor saw me exactly once, on April 2. He referred me to Upstate Medical Center’s nephrology clinic. It took three weeks for the referral to leave his office, and three months for me to get an appointment, which has now been changed to four months.
I have not seen or spoken to the doctor in two months: why is he now kicking me out? The kick-out is supposed to be done by certified letter, which the nurse knows, but the doctor hasn’t done it. And, anyway, why does it matter? Did you know that there is no appeal? There are not two sides to the story; the patient has no standing to protest. It is the American Medical Industry: they are right and the patient is wrong. Always. There is no recourse.
I am desperate for relief from the troubles inflicted on me by the high humidity. I call the homeopathic provider, who emails me that he called me but couldn’t leave a message. I have Time Warner, and have no idea why he couldn’t leave a message, or what to do about it. My Time Warner bill is higher than my rent.
So I have no hope of getting a home health aide. What do I do about that? Come on, somebody, help me out here. Tell me what to do. Give me a suggestion. There isn’t enough money in the system to hire enough aides to take care of the sick people.
I can’t get a doctor. There are none to be had for poor people, and doctors man the gateway to all kinds of services.
I have seen what money does. My mother was in exactly my circumstances except for one thing: my father made a goodly amount of money and left mom well-off. She lived in an upscale retirement home and was well-cared for by a large staff that was well-paid. Money got her a good life.
My Social Security income is below the federal poverty level. None of my basic needs are being met.
Five hours from now, I was supposed to have an appointment with the doctor to get the physical that the county requires in order to keep my aides. There are no aides; there will be no physical. Cancel transportation; give up on aides; lay in bed too sick to take a shower; run the air conditioning against the effects of the humidity, and when the electricity bill comes, how am I to pay it?
Extrapolating from the known, where does this all end?