Do you want the good news or the bad news first? Let’s start with the bad news, get it over with, and move on.
Tuesday the home health care agency sent Sonya, supposed to be here from 8:00 a.m. to 10:00 a.m. five days a week. Wednesday she came back; Thursday she didn’t. The agency called at 7:15 a.m. and said Brenda would arrive at 9:15 a.m. and Sonya would be back on Friday. On Friday, nobody came. At 8:15 a.m., I called the agency, which said they didn’t know anything about it—they “hadn’t opened . . . mumble mumble mumble.” Later, they called back and said Alicia at 9:30 today, Susan at 8:30 Saturday and Sunday, Gloria at 8:30 on Monday, and Sonya back at 8:00 on Tuesday. Yeah, right.
So the bad news is a succession of strangers in my home who don’t know what to do or where to find anything. And three days in a row I only have gotten one cup of coffee. Sheesh. What is the freaking problem that I give them instructions for two cups and it only makes one cup? Sonya left a vase perched precariously on a counter. When I tried to get lunch, it slipped, fell, shattered and left me with a harmful jolt of adrenalin, unable to clean up the broken glass and trying to get lunch at great risk of falling into the glass.
Do you see why I’d rather be in a nursing home? It would likely be the same person caring for me five days a week. She would know where her own stuff was, wouldn’t be breaking my stuff, and I could get two cups of coffee. I mean, seriously, is there any point in living if you can’t get coffee?
One aide is an older black woman who doesn’t communicate much. The other two—one from Puerto Rico and the other a third-generation Syracusan—are both women with young children. (They don’t start work until after they get their kids on the school bus.) The older woman has been an aide for sixteen years and one of the younger ones for five years. The third aide was a third-generation worker at New Process Gear and started aide work six months ago.
I ask all of them what they know about the local nursing homes. They all agree that Rosewood, Van Duyn and Central Park are bad, and that Iroquois and St. Camillus are good. They are divided on Sunnyside and Loretto. One of them worked at Rosewood—for six weeks. (Often the sign of a good aide is the places they’ve quit.) Rosewood Heights is ranked by the federal CMS (Centers for Medicare and Medicaid Services) in the worst one percent of nursing homes nationwide. (See also https://annecwoodlen.wordpress.com/2012/07/31/syracuse-police-bully-two-elderly-disabled-citizens/ .)
The word is that investigators are in Rosewood Heights frequently and that a management team from the Iroquois has been brought in to straighten things out. (Rosewood has been trying to get things straightened out for years.) Among other things, they’ve put upgrading the aides’ break-room ahead of patient care. The aide and I figure that if you put patient care first, then the patients will be happier and therefore the aides will find more satisfaction in their work. Bribing them with a better break-room is not the way to go. The employees figure the NYS Dept. of Health is going to close them down before very long. This will mean that I am safe from getting put in Rosewood, but it will also mean the current residents will be placed in the other available nursing home beds and I will find it harder to get a placement anywhere.
So I wake up feeling dreadful around 6:30 a.m. and wait about three hours for an aide to arrive. Then I get juice, one cup of coffee, and breakfast. The aide does yesterday’s dishes while I eat, then we get me showered, shampooed and dressed (if you actually call underwear and a tube top “dressing”) and she waters the auto BiPAP and makes the bed. All that actually takes up the full two hours.
It is good—really, really good—to have all this done by somebody else. I have become irrelevant in my life. I do not bath myself, dress or cook. I sit, chew and write. The three hours I spend on the computer, writing my blogs and emails, is the only me-ness of me. It is very strange to find yourself unnecessary to live your own life.
My glucose now is around 400. I am very tired, passive and headachy. Any physical effort on my part results in very bad emotions—despair and the like. I wonder how it will end. Will an aide come in some morning and find me comatose from high blood sugar? Will the occasional chest pains result in a fatal heart attack? Will the catheter, which should be changed every four weeks and hasn’t been changed since June, become infected? The pain in my left shoulder now—?
Yesterday (was it yesterday?) Amelia and I went up the hill to run errands. Two blocks. Dunkin’ Donuts, the bank, the post office, Subway, and CVS drugstore. One hour. But was that exertion why I woke up feeling so dreadful this morning? I don’t mind dying but I do mind feeling dreadful. So often the two are conjoined.
The agency aides come in the morning; Amelia still comes in the afternoon. Today I asked her to get me one of my bibles. She brought to my bedside the leather-bound King James Version that I was given when I joined church—when? A very, very long time ago. King James is, like Shakespeare, a foreign language that I can’t penetrate.
The second bible was the Revised Standard Version. I had been ambulanced to the hospital and ended up on inpatient psychiatry, where you cannot get a bible or a chaplain—they don’t go behind the locked doors. So I had called my own pastor and asked him to bring me a bible; he grabbed a pew bible on his way out the door, but it is a hardcover book, too big for me to hold now.
And then there is The One Year Bible . . .