I awake in the middle of the night. My catheter bag needs to be emptied but I am too tired to get up and do it. Contrary to popular opinion, catheter bags do not leak when too full. Fluid follows the line of least resistance and in this case the line of least resistance is for urine to back up the catheter tubing into the kidneys. Stale urine being forced back into the kidneys causes kidney damage. That would be more kidney damage in addition to what I already have from diabetes mellitus and diabetes insipidus.
The reason I am too tired to get up is because I have no home health aides and thus have become over-tired in the effort of taking care of myself. I don’t know why I don’t have aides. Two and a half months ago, the county approved me for aides for two hours every day and put my case on the call-out list to home health care agencies in Onondaga County. No agency has picked up my case.
I have spoken about this to Joanne Spoto-Decker, director of the Office of Aging, which houses the Long Term Care Resource Center. Clearly, in two and a half months, home health agencies have filled orders for other clients. Why haven’t they filled my order? I have asked Joanne Spoto-Decker this. I have asked her to find out why the agencies are not supplying aides to me. In my last conversation with Spoto-Decker, I asked her three times, three different ways. Each time she evaded the question.
Why would I, alone among the group of people who need aides, not get them? I think I know. About a year ago, I realized that I no longer was making good decisions and taking care of business. I was a client of the Visiting Nurse Association and had been receiving monthly nursing visits from them for over a year so I called and asked for a social worker. Instead of sending a social worker, they sent a nurse. She was all over me doing a nursing assessment and peppering me with questions that I was too confused to answer. I snapped and yelled at her. She left. Within twenty minutes I got a phone call from her supervisor telling me that I was terminated from the VNA.
What the nurse failed to assess was that my blood sugar was so astronomically high that it was a physical impossibility for me to answer her question or refrain from snapping. What the supervisor failed to do was ask for my side of the story. She judged based only on knowing her employee’s version, not her patient’s version. The supervisor did not send a social worker, or another nurse for a second opinion.
My doctor called the VNA and they wouldn’t reconsider. A couple doctors spoke to me about how bad they considered the VNA to be, so I filed a complaint about the VNA with the NYS Dept. of Health (DOH). After investigating, the DOH found the VNA to be in violation of Title X—and no, nobody ever explained to me what Title X is. I strongly suspect that the reason I cannot now get any agency to pick me up is because I exercised my constitutional right to speak out against an agency that was providing substandard care.
Last year I spent 104 days in Crouse Hospital because no skilled nursing facility would take me. When Van Duyn, the county-owned skilled nursing facility, was asked to take me, they replied “The woman who writes the blog and files complaints with DOH? No way.” Because I spoke freely about substandard care, the nursing homes blackballed me.
Because I spoke freely—and wrote freely—Crouse Hospital put me in punitive segregation. For 104 days, I was kept in a room designed for isolation. No one, up to and including the chief medical officer, would tell me specifically what I had said or written that offended them. At no time did anyone ever confront me with what was being held against me and ask for my side of the story. Also, there is no appeal process in hospitals. The chief medical officer makes judgments without evidence and cannot be called to listen to both sides of the story. It is always about what is good for the hospital, never about what is right for the patient.
I reached out to the Tully Center for Free Speech at Syracuse University’s Newhouse School but got no response. Apparently they deal with government officials who blow the whistle on government activities, not a single woman a block away from their school who is being held in solitary because she has freely spoken about abuses in hospitals. When I first suspected that I was being held in punitive segregation because of something I’d said or written, I told a Crouse Hospital vice president who was a graduate of Newhouse. He grimly said, “That better not be the reason.” When I had confirmation that, in fact, that was the reason, I called and left him messages. He never responded to me again. The denial of freedom of speech comes in all kinds of forms. Why is it that the Newhouse School won’t deal with the small, nasty local form?
The bottom line here, folks, is that we all claim the right to speak freely but I am one of the few citizens who is actually speaking out against wrongful acts. Consequently, I cannot get the services or placement that I need.
We all want freedom of speech but when that right is exercised then there is retaliation and when there is retaliation then nobody will stand and fight back. I am old, poor, sick and in need of the services available to me under the law. I am being denied the services other people enjoy because I dare to speak freely.
Here in America.