They’re coming to take me away today ha-ha ho-ho hee-hee they’re coming to take me away today . . .
Yesterday the social worker came and told me that Rosewood Heights Nursing Home has “offered me a bed.” In Medicaid language, being “offered a bed” means that within twenty-four hours you will be moved to the new location. You can appeal the move but you cannot refuse it, and the appeal won’t work. Being “offered” a bed means that you will suffer a mandatory move within twenty-four hours. In short, I am a prisoner about to be transferred by order of the government.
So my Power of Attorney and I discussed the Rosewood. It is a six-story building in the university section of Syracuse—first floor offices, second floor rehab, third and fourth floors long-term care, fifth and sixth floors dementia—presumably locked units.
It is one of the worst nursing homes in the country. “This facility has been designated as a Special Focus Facility (SFF) by the Centers for Medicare and Medicaid Services (CMS). This designation identifies nursing homes whose quality of care has consistently demonstrated failure to maintain compliance, as well as a history of facility practices that have resulted in harm to residents . . .” Rosewood is in the worst ten percent of nursing homes in the country.
Rosewood is the sister to the Iroquois; both are owned and operated by the Plaza Nursing Home Corporation, which, in turn, is owned and operated by Crouse and St. Joseph’s Hospitals. In the greater scheme of things, CMS has awarded the Iroquois five stars; Rosewood has one star. The PlazaCorp board of directors is kept secret. It includes three people appointed by Crouse, three from St. Joe’s, a lawyer, and unknown others. Mark Murphy, a senior vice president at St. Joseph’s Hospital, is the president of the board of directors. He refuses to return phone calls from his own board members.
As I write this, my roommate Cora is calling loudly and relentlessly for Chrissie and Howard, her daughter and her husband. She says, “I’ve gotta go to the bathroom so bad.” Cora says her arms are wrapped in her nightgown and she can’t get up. Cora’s bowels are moving and she is begging to go to the bathroom. “I’ve gotta go so bad. I can’t wait much longer.” Cora calls for her sister Anna and she calls for her mother.
Cora is 98 years old. About 85% of her utterances are demented. I have pushed my call bell for her but no aide comes. Cora is desperate. She does not understand that she is in a nursing home or that she is wearing a diaper. What Cora knows is that for nearly a century she has gotten up and gone to the bathroom when her bowels have started to move. She cannot simply let go and poop in her pants. Cora was a lady. Now, the nursing home aides will not even help her to a bedpan.
A foreign-born male aide comes. She cannot understand him when he tells her that she already has gone in her panties. When he starts to clean Cora, she screams in pain—“My back, my back!” She sometimes talks of pain in her tailbone; it may be an open bedsore. I don’t know and they won’t tell me. “Privacy,” they say; “HIPAA,” they say.
FUCK HIPAA—WE ARE ROOMMATES!!! What happens to her happens to me! Who the hell do you think presses the call bell for her? Who listens to her screams every fucking time they change her diaper?! The staff go home after eight hours—I listen to her screams twenty-four hours a day! Do you know the sound a 98-year-old woman makes when she screams? It’s a kind of gasping whimper but her whole entire being is exhaled in it. It’s the sound a kitten would make if you were killing it.
Cora is 98 years old. She suffers from dementia and multiple physical ills. The Iroquois has her in the bed that is farthest away from the nursing station, at the back of the unit in a cul-de-sac next to the escape door. Cora no longer has any concept of what it means to push a call bell (besides, it usually is placed at the top edge of the mattress where she neither can see nor reach it).
Cora is placed where the staff cannot see or hear her. They do not pass her room on the way to somewhere else. She has terrible back pain. I have been listening to Cora scream for nearly a month. Why isn’t the doctor doing anything to relieve her pain? Why isn’t he either fixing her back or increasing her medication? Why isn’t the administration holding the doctor accountable for pain management?
I spent two days filing oral and written complaints on Cora’s behalf. Thereafter, for two days, her pain was reduced from screaming to mere “ow’s.” And—wonder of wonders—during those two days, she frequently spoke with coherency.
And what Cora said was how lonely and afraid she is.
Then she went back to screaming every time they change her diaper.
And what do you think I do? I offer her words of comfort when I can, push the call bell when I can’t help her directly, wait and wait and wait for anyone to answer the bell. I speak for her, listen, watch, file complaints on her behalf. In dementia, Cora calls for her father, mother, husband, daughter—her daughter lives ten minutes away. I have seen her visit once in four weeks.
And what do I do? I start to scream internally. I take more and more medicine to try to drown out the cries of human suffering. Sometimes I yell at Cora because I cannot endure this; it must stop! I am a human being and this screaming simply MUST STOP.
Yesterday Rosewood “offered” me a bed and when I asked why, there was no answer. This morning I awoke and knew the answer: they are going to take my falsified psychiatric history and lock me on the dementia unit.