Okay, let’s follow the bouncing ball and see if we can get Annie into a nursing home.
First of all, the specially certified nurse comes from CCH, which is an affiliate of the Visiting Nurse Association, and does a PRI, which is an official handy-dandy New York State Patient Review Instrument. If you score below 5 then you belong in an Assisted Living Program (ALP); if you score above 5 then you belong in a Skilled Nursing Facility (SNF). I scored 7.
Michelle, the nurse who is specially certified to fill out paperwork, tells me I’m a “CC7.” I ask her what CC stands for. She says “Critically Complex” and my aide Amelia and I look at each other and start giggling. Yup—Critically Complex. That for sure is what I am. So then Michelle gives me a list of about fifteen local nursing homes that accept Medicaid and tells me that I and my family should fill out the applications.
Problem is, I can’t. I’ve got this executive dysfunction learning disability and I can’t figure out how to fill out all the little boxes on all the big forms. Never have been able to. And I’ve got no family—leastways, none that’s speaking to me (which is maybe the best news I’ve got).
So I look at the list and cross off everything that is Loretto, Central Park that used to be Vivian Teall, and Rosewood. They are all so bad that I’d rather die than go to those places. Then Amelia starts calling the rest and asking for applications. James Square is snotty and says there is no application, just the PRI; Stonehedge says they will send us an application, but they don’t. I prioritize the list: (1) St. Camillus, (2) Sunnyside, (3) Iroquois, which you cannot get into from home.
There weren’t enough skilled nursing beds in Syracuse so patients were lingering in acute care beds, also known as hospitals, so the hospitals got together and built Iroquois. Iroquois exists to clear the beds at Crouse and St. Joseph’s Hospitals. And they have a Palliative Care Unit. And they have a waiting list.
Applications are also requested from Syracuse Home, which is now McHarrie Life; Menorah Park; Van Duyn, which is the county home, and a few other places. The applications start coming in—but who is supposed to fill them out?
The nurse and supervisor come from Onondaga County, Office of Aging, Long Term Care Resource Center and tell me that they don’t do that. Somebody tells me that my home health care agency social worker is supposed to it. Problem is, when I requested a social worker from the Visiting Nurse Association, the VNA sent a nurse instead. She screwed up, her boss terminated me twenty minutes later, and I filed a complaint with the NYS Dept. of Health, which reports that they’ve been sending paperwork back and forth by land mail for two or three weeks. Summation: I can’t get a social worker from the VNA because they wrongfully terminated me.
Here and there Amelia finds a few minutes to fill out things, but she is tightly scheduled by the county only to do cooking and cleaning. Steve tries to fill out a few applications but he’s got a full plate with his family and practice, so doesn’t have much time.
The county doubles my home health aide hours and sends the order to Home Aides of CNY, which presumably is another home health care agency, so I ask their nurse for a social worker. He says that they don’t have social workers who do that and I should call someone else.
The county nurse tells me to use the social worker in my apartment building or the neighborhood advisor, when he gets me the neighborhood advisor’s name. I try the building social worker, with whom I’ve had non-stop problems in the three years I’ve lived here. She refuses to come up to my apartment. If me and my papers and wheelchair could get down to her office then I wouldn’t need a nursing home in the first place.
The county nurse leaves on vacation without getting me the neighborhood advisor’s contact information. I Google it and send it to the county, but by now it’s Labor Day weekend and you can forget getting anything done.
So now it’s the day after Labor Day. I have to call the Home Aides nurse on other business, so I ask her what to do. She tells me to call Enable, which is where my other aide comes from. I call Enable and, on the third try, actually get a human being. He says they don’t do the work to get me into a nursing home—the county nurse should.
So I call the county nurse again but he’s not in so I speak to his supervisor Cathy Dutton, who says, “That’s not one of the roles we usually play.” WTF? They are ordering home health aides to support a patient who needs to be in a nursing home—and oh, by the way, they refuse to provide 24-hour coverage—and they won’t help the patient transition to the next level of care? Are they out of their minds or what?
So I call Dutton’s boss, who is the director of the Office of Aging. I leave messages on both her numbers. Why does the head of one agency have two offices in the same agency? I have no idea. But she calls me back, we talk, and I explain that the exact moment the ball got dropped was when the PRI nurse handed me the list. Who should she have referred me to for help? The director says she will work on it and get back to me. (Please note: the Long Term Care Resource Center has only recently been transferred from the Dept. of Social Services to the Office of Aging.)
Then, as I was directed by somebody who I can’t remember, I again try to follow up with the specially certified nurse who handed me the list of nursing homes. I mean, seriously, is it right to tell a lonely old woman, who is so sick that she needs to be in a nursing home, that it’s up to her? (Seriously, people, develop and maintain really good relationships with your children so they’ll be there when you’re old. For God’s sake, go out and have kids entirely for your own protection when you’re old.)
The CCH/VNA nurse isn’t around, so I leave a message. Then I call the county executive’s office, which tells me to call the Office of Aging director, which I have already done.
Then I call the Westcott neighborhood advisor, who tells me, yes, she gets people into nursing homes, and she’ll come see me tomorrow.