One of the several times that I woke up during the night, I thought it was raining. This morning’s wake-up reveals that it is pouring. The aides all are now elated that the Venetian on the left works. Only because I kept insisting and got it replaced. The last person who had this room spent all his time out of bed walking the halls; consequently the room has not been properly maintained. Window blinds, call-bell, bed—nothing works. I have to repeatedly call to get things fixed.

Anyway, what all the aides are talking about today is that I fell yesterday. Falling is a big deal in a nursing home. They have to report it to the NYS Dept. of Health. With each new aide, I repeat the story. No blame ascribed. Except two months of lousy care.

So yesterday after I fell in the weight room, Kate called Anthony, the med nurse, and they got me up. This is accomplished by them getting armpit-to-armpit with me and hauling me up. I know that I can’t get my feet under me and cannot push up; they simply have to haul me up, turn me, and drop me in the wheelchair. What fun. I am put back to bed; my blood pressure is not checked. Life goes on.

I call for the windows to be closed, the blinds closed, the “air-conditioning” to be turned on, the small desk-top fan turned on, the radio—WCNY classical—to be turned on. This is all to eliminate sound coming in from outside and replace it with low level sound generated inside, but I still can hear her.

She was admitted about a week ago to the Alzheimer’s floor—formally the “Behavioral Unit.” Her room is two floors below mine and we both have our windows open to catch any breeze against the sun beating in. She cries out: “Hello? Hello? Hello?” “Help! Help! Help!” “I need to go to the bathroom!” It sometimes goes on for hours. I cannot endure it. A human being is crying out for help and nobody will go to her.

The first day I tried to figure out what was going on. The second and third days I asked the nurses to call downstairs and have someone intervene. The third day I complained to the nurse manager, who said that in morning report the nurse manager from the Alzheimer’s unit says they’re trying to deal with the problem.

How do you deal with it? You can’t shut the window; she will be too hot. Get a fan? You can’t sedate her—can you? What she needs is someone to sit with her, but that’s labor intensive and costly, and there is no money to care for the elderly in our society. She is probably here because the people at home couldn’t stand it anymore. If her bed was in the living room of a house with a four-generation family then she would be receiving constant small attentions. Alone with a son and daughter-in-law, she became a heavy burden to bear.

The family has broken down so the woman is institutionalized and instead of being a problem for her children she becomes a problem for a dozen strangers. So what does the community do?

And the worst part of it is that she is entirely coherent. She is not babbling nonsense. She is voicing exactly what I would like to say: Notice me! I am alive! Talk to me! Visit me! I need you!

But I am useless; I have nothing to offer you. I could tell you the stories of old times—we would both enjoy that—but you are too invested in tomorrow to gather pleasure from yesterday.

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Vital signs

I wake feeling bad, wrong. Weak, watery, something. I press the call bell and ask the aide to check my blood pressure. She says she’s too busy. Then says she’ll pass it on to the nurse. Fifteen minutes later nurse Anthony comes and asks what’s wrong. I don’t know what to say so I just ask him to please check my blood pressure. It’s 136/86, which is perfectly fine. He stands and looks at me thoughtfully, then suggests that I have breakfast and then he’ll check it again. I say okay, having no appetite or any idea when breakfast will come.

According to the James Square guidebook breakfast is between 8:00 and 9:30, lunch is 12:00 to 1:30 and supper is 6:00 to 7:30. When I told a couple of aides this, they were shocked. They had no idea that there were actually scheduled times. At home, I always ate breakfast at 8:00, lunch at 12:00, and supper at 5:00. [As I watch now, a black helicopter very slowly inches toward and onto the landing pad at Galisano Hospital. The pilot apparently never has landed there before and is scared to death but he cozies down and makes the landing.

[Actually, he doesn’t. The helicopter rises, goes out and circles, and tries a second time. This time he puts it down.] (Meanwhile Don, the skinny guy from Maintenance, comes back again to check out the venetian blinds that they’ve been checking on every day for a week. The windows have three blinds; the one on the left is totally jammed and cannot be moved.

(It has to be moved because they’ve turned off the air conditioning. My windows face south and the sun beats in here mercilessly. An hour after sunrise, the left blind has to be closed; around 11:00 a.m. the middle blind has to be closed. Mid-afternoon the left one is opened; around suppertime the middle one is opened to the sunset. Except that the left one has been jammed for a long time. Well, anyway, the man from Maintenance installs a new one.)

So breakfast comes after I wait a while. One slice of toast, two sausages, and an egg— so-called “poached,”—one egg cracked into a small Styrofoam bowl and “cooked” until it is hot and hard. Juice. Apple, cranberry or orange. You get juice three times a day. Three different juices. Same juices for two months. Can you imagine how desperately I long for orange-pineapple? Red grapefruit?

So Anthony never comes back to check my blood pressure again. The aide—a Jamaican women whose name I never can remember—comes to weigh me. I don’t want to be weighed but decide to be cooperative. The aide says the nurse needs to fill in the box on her chart. I do not say anything nasty about nobody actually giving a damn about me, just about filling in the boxes. It’s been two hours since Anthony checked my blood pressure. Should I ask again? No, I shouldn’t bother him.

So, with much fussing and fiddling, the aide and I get the catheter bag emptied, pants on, slippers on, the walker, the wheelchair, me out of bed and into the wheelchair and us down the hall to the weighing room. There’s no place to hang the catheter bag—not on the wheelchair, not on the side of the shower chamber, not on the side-rail of the scale—so the aide will hold the bag while I stand up, turn left and put both hands on the grab bar beside the scale.

Except that my knees buckle, I scream and fall, and land on the floor. The aide briefly leans down to check me, then runs for help. She comes back with Kate, the temporary nurse manager, who hasn’t understood the problem until she walks in. When Kate sees me on the floor, her eyes bug out—falls are offenses that have to be reported to the NYS Dept. of Health—you know, the place where I’ve filed dozens of complaints?

Kate then lectures the aide on her failure to weigh me in the wheelchair, noting that I am getting worse. Really? And how did she know that? I asked for blood pressure because they never do it here. I asked for re-newed glucose checks; they aren’t doing them. Routine weekly lab work has been stopped; I don’t know why. Once a day, they check temperature, which is usually low, and oxygen, which is 95.

So how does Kate know I’m getting worse? Because I told her? And how did Kate communicate to the aides that I needed to stay in the wheelchair and not try to stand up? Answer: she didn’t. Nobody told the aide and now she’s getting yelled at for failing to do what she hadn’t been told to do. I’ve been here two months, supposedly—but not actually—with weekly weigh-ins. Today we did what we always had done—but this time I fell.

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Dead and Dying at James Square Rehab

James Square stole my power wheelchair—I think that’s what really broke my spirit. During the night, they took my chair out of my room while I was sleeping. They took it down to Maintenance, removed the charger and the batteries and damaged the circuit breaker, then brought it back and put it in my room without telling me. I got in the chair and it wouldn’t start; that’s how I found out. They had no right. But nobody cares enough to do anything about it.

Last week three people died here on 3 South, the short-term rehab unit. How is that possible? People whose physicians deemed them in need of a few weeks of rehabilitation and then discharge to home—instead they came to James Square and died. I’ve filed dozens of complaints about the inferior care here—NYS nursing home hotline, Onondaga Dept. of Health, NYS ombudsmen—local, regional, state—they all say there is nothing they can do. Medicare, Medicaid, state, federal—nobody does anything. They all list problems and write reports but nobody does any enforcement.

The first person who died here was in the bed from which I was transferred ten days ago. The second person who died was in the bed in the room next to mine now. Death is coming closer but can’t find me.

Soon, soon. The United States doesn’t care about its old folks. It wants us to die and stop taking up resources.

The only thing to do is have children.

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Paralyzed by Depression

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Police let Corporation Investigate Itself

James Square Rehab Centre and I have been arguing about my use of my power wheelchair. I do what I normally have done over the past decade and then, after the fact, James Square gets upset about it. Before the fact, James Square, despite repeated requests, has failed to put anything into writing.

I have requested, in writing, a statement of James Square’s official policy regarding the use of a power wheelchair by their residents. They haven’t produced such a policy. I have no idea what to do until after somebody thinks I’ve done something wrong.

So last night I woke up in the middle of the night to see a nurse and an aide moving around my wheelchair. I said, “What are you doing?”

They replied “We need an extension cord.”

The wheelchair, which was billed at $8500, is my personal property. I replied, “Well you don’t take it from me! Get out!” And they got out.

The next day, when I sat in the wheelchair and went to turn it on, it wouldn’t work. The charger and the batteries had been stolen. I called the police.

The police called James Square. Instead of sending a copper or two to take my complaint, they arranged for James Square to investigate the incident themselves.

Yep, the employees who had stolen from me would be investigated by their supervisor. And no, I have not been allowed to speak to the sergeant who made this decision.

In the first place, the lying sneaks at James Square stole from me under cover of darkness, and in the second place, the police let them investigate themselves.

Anybody but me think that this is really not the way things should be done?

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This is It: Too Tired

Saturday 12 September: At 5:55 a.m. one of the black female staff members at James Square Nursing Home starts raging at some unknown person—staff or patient. It starts about coffee, then she yells into the quiet night for about five minutes. Good morning, good morning, good morning.

Around 7:00 a.m., I call the NYS nursing home hotline and report it, then push the call bell and wait to see how long it will be before someone answers it. In seven minutes Lester appears in the doorway. Lester is a dear sweet man, loved by all. He is Cuban and lived with his wife in Argentina for two years. He is slightly built with short dark hair and about an inch of black fur on his arms.

An aside: when you are old, sick and weak, it is a blessing to have a healthy adult male reach out to lift you, re-position you, steady you as you try to stand in the shower. Muscular arms, hairy arms, strong arms that bespeak safety. The lovely 19-year-old girl aides are so willing to help but they are so small, so delicate. What one wants is a big hunk of man who can grab your catheter bag with one hand and wrap his other arm around you and swing you from bed to wheelchair. I learned this first from a nurse who was working nights and building his wife a rock garden by day.

So here is Lester, not big but strong. His wife works in a pediatrician’s office; he used to work five days a week but now he works two double shifts on weekends. Lester answers call bells promptly, never disappears like Chaz does, cheerfully follows directions and generally does a good job and is helpful to have around. This morning he asks how I’m doing. I tell him about going to the neuroimmunologists on Wednesday.

They said “This is it. This is as good as it gets.” Lying in bed, too tired to move, fighting the pain. That’s it. No more, no better. Lester grins cheerfully and says, “This is it? No more? You has to deal with this?” Yeah, Lester, you got it. “This is very bad.” Yup, this sucks. Quality of life. None. Gone. Then I change the subject. I don’t know what to say; I don’t know what comes next. I tell him I need a shower, haven’t had peri-care, clean underwear or brushed my teeth in three days. My last shower was four days ago and took two aides to hold me up. Neither of them had ever done a shower here before. Lester says, “You do not worry. You will sit down and I will do everything. You will be all right.”

It is about then that I realize that I have been in reaction to the doctor’s appointment. Halfway through it I realized that I no longer could sit up. With the help of staff, I laid down on the examination table until the attending physician came in. I had to have the resident repeat to the attending what I had said to him because I was too tired to repeat it. Do you know what it is like to be flat on your back and too tired to talk?

It took two residents, a nurse and an aide to get me from the exam table back into the wheelchair. Do you know what it is like to be too tired to sit up? To fear that you will fall out of the chair? Another ME/SEID sufferer wrote, “I was too tired to sit in my wheelchair.” This is it; this is our life.

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7:45 p.m. Friday

An aide is walking down the hall at James Square crying out “Anybody? Hey, anybody? Is there anybody here?”

She is alone with 34 patients.

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