Up the Hierarchy

At James Square Nursing Home in Syracuse, there is a hierarchy. On 3 South, a 34-bed rehabilitation unit, the hierarchy starts with Certified Nursing Assistants (CNA). There are supposed to be four CNAs on Day Shift, three on Evenings and two on Nights.

Currently, two CNAs are gone: Chaz, a lazy, good-for-nothing young man who was working two double shifts on weekends, and we are—sort of—better off without him. The “sort of” is that it is very difficult to find anyone to hire for the position. No one knows whether Chaz quit or was fired.

Likewise, Belle is gone without anyone knowing if she quit or got fired. Belle worked Day Shift and was a tall, slender, young woman. She was sweet and kind, but slower than molasses. When she was washing up patients, we wanted to cry “Hurry up!” but we didn’t because she was slow but sweet.

Next up the hierarchy are the LPNs—Licensed Practical Nurses. The 3 South Unit is set up in a rectangle with two LPNs, one on each side passing medications. Theoretically, the priorities are (a) alarms, (b) pain medications, (c) toileting, and (d) passing food trays. In fact, LPNs often ignore alarms and toileting. And their stupid attitude is that they will pass meds routinely around their side of the rectangle without regard to priorities.

Again, theoretically, when a patient needs pain medication s/he pushes the call bell. Within ten minutes, a CNA answers the bell then takes the message to the LPN who, within ten minutes, brings the medication. In fact, it often takes an hour from when the patient pushes the call bell until the nurse arrives with the medication. An hour can be hell when you are in pain.

Currently, two LPNs are gone. One is Tee, full name Tanzania. I have filed multiple complaints against Tee, who has a terrible attitude and may have been doing drugs. Among other things, she ordered me not to call the nursing station “because it’s a business phone.”

Fact: James Square is being paid by the taxpayers to provide services to me. When they fail to do so then I have the right, if not the responsibility, to call the nursing station and file a complaint. What—Tee does not understand that it is a business call? Tee was terminated with prejudice and I hope she never works in human services again.

LPN Christin is also gone. She was careless, negligent, and didn’t do a good job, but I liked her. She was kind, friendly and just a really nice person. Six of one and half a dozen of the other. She would do things like throw pills in the patient’s trashcan, which is just not the right way to dispose of pills when you’ve made a mistake in bringing the wrong ones. Chris got written up for disciplinary reasons too many times, and her faults were too often potentially fatal. She finally got fired.

The next person up the hierarchy is the unit manager, a Registered Nurse with a Master’s degree. Unit 3 South has had five unit managers in the seven months I have been here.

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One Administrator, One Nurse, One Aide and 34 Patients

This morning my glucose was 129. It hasn’t been that low in several years after having topped out around 650. In recent months it has been averaging around 350. The nurse—a floater—said that 129 was a good number; I said it wasn’t. After 350, that was terribly low and I was shaking like a leaf. Try and get any staff member at James Square to get you a cup of orange juice.
And then there was the bowel non-movement problem. I am on a steady diet of the painkiller hydrocodone, which is an opioid, which causes constipation. I hadn’t had a bowel movement in almost two weeks. A prune juice cocktail—prune juice and butter, heated—caused some movement this morning—you could probably hear me screaming all the way across town.
In fact, weeks ago—if not months ago—two stool softeners were ordered three times a day. The nurse who took the order entered it in the computer as PRN, that is, whenever I wanted it. I didn’t know the order was there and James Square staff never gave it to me.
All this was told to me by Melissa Alt, R.N., and most recent—and fifth—unit nurse manager in the seven months I’ve been here. She replaced Roz Richardson, who quit after James Square failed to provide her with adequate staffing (https://annecwoodlen.wordpress.com/2016/01/25/getting-on-rozs-shit-list/) . The Day Shift on this unit is supposed to consist of the nurse manager, her assistant, two Licensed Practical Nurses, four Certified Nurses’ Aides, a unit clerk, and 34 patients. Roz fought to get the staffing she was supposed to have but finally quit.
Melissa, who is a lovely young woman, repeatedly tells me that she will not quit. I don’t believe her. Do you have any idea how many of these women have sat here and wept?
This morning Melissa arrived at work at 7:00 a.m. to find only one LPN and one aide staffing her floor.
And what does the NYS Dept. of Health do about it?
Write reports.

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There is so much I want to tell you but, alas, I get too tired too fast.

Today there would be the story of the man who was admitted Friday evening, and the importance of hugs, and some other stuff, but lunch is due in five minutes. Yesterday all I got for lunch was half a cup of lukewarm soup and a small piece of cherry pie. I did not get any crab cake or vegetables.

I did not know it was spring.

A week ago I started seeing flocks of geese flying north. That was until the night nurse brought me pain medicine last night and told me that the daffodils are eight inches high in her front yard, and the crocuses are up. She also has robins and redwing blackbirds and other substantial signs of spring.

It hurt me. I did not know spring had come on the ground. I’m on the third floor, overlooking the employee parking lot.

Here is an alarm: in your old age, you will be taken care of the way you are now taking care of your parents. Your children are watching and learning how to take care of you. Should you be scared? If what you are doing for your parents now is not how you want to be treated when your time comes, what are you going to do about it?

The old guy . . .

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A Life Wasted

A nurse practitioner and I have just been talking. Mostly we were talking about herbal teas, of which we are both aficionados. Prior to that, I was talking with a staff member of the Recreation Dept. Mostly we were talking about Washington, visiting the monuments, and cherry blossom time. Before that, I was talking with the director of Social Services and some vice president or other. They were functioning as quality control and trying to get the facts about a night nurse who threatened to take away my medicine because I said the re-order prescription had been sent to the wrong nurse practitioner—said nurse practitioner being the one with whom I was talking about tea.

So here’s the thing: nurse practitioners and above are the people with whom I have good conversations because they are functioning at my intellectual level. The recreation lady is 62 to my 69: we have things in common about which to talk. And when I have these people with which to speak, it makes me happy. It makes me smile.

I have been in a power wheelchair for ten or fifteen years. I have invited many, many people to visit me in my home but they haven’t done it. However, when we connect outside my home then we have long and interesting conversations. Why is that? Why won’t people visit me in my home?

My life has been largely wasted because nobody knows me; nobody gets to talk to me because I am disabled. I have so many good ideas to share and so many good stories to tell but nobody knows me because I am in a wheelchair.

You all have wasted my life because you wouldn’t come and visit me; you wouldn’t get close enough to hear me because I sit in a wheelchair.

Shame on you. How many other peoples’ lives have you wasted because you couldn’t get past the disability barrier?

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Stop Talking and Take Action

A complaint against James Square nursing home, 918 James St., Syracuse, NY. Unit 3 South, Rm. 353.

Unit 3 South is inadequately staffed. Yesterday my call bell was on for 90 minutes without being answered. This morning at 8:10 nobody answered my call bell. I telephoned the nursing station and nobody answered. I called the Director of Nursing and got voice mail. When a nurse—assigned to work as an aide—arrived at 8:30, I asked where my breakfast was.

I have severe diabetes mellitus with a glucose level around 450. I cannot take insulin. The brain functions on glucose. If I am not given meals on time then my brain goes nuts and I become argumentative and abusive. “On time” means breakfast served at 8:00. This morning, breakfast was not served at 8:00. I could not get an aide, a nurse, or the director of nursing to help me.

The 8:30 nurse went and came back with my breakfast. She said it had been sitting on the counter in the kitchen on Unit 3 South.

An aide announced that she was the only aide working the floor. Unit 3-S has 34 beds and is supposed to have four aides on Days. It never has four aides. Hasn’t for months. A large part of the problem is that the last administrator and the last two unit nurse managers were old white women. Most of the aides are young black women. They talk back.

In the past month a temporary new nurse manager has been installed. She is a middle-aged black woman who knows how to get young black women to work properly or get out. Roz Richardson is working hard and doing well but Unit 3-S was so far behind that she still hasn’t been able to fully dig it out of the swamp it had become. Aides are ill-advised to talk back to her.

Temporary Fix

James Square’s biggest problem is failure to communicate.

To the best of my knowledge, there is a Scheduler who schedules the staff. The Scheduler was recently fired and a new one hired. There appears to have been inadequate training.

· At 1:30, if the Scheduler does not have ¾ staffing on every unit for the next day, then it should be referred to the Director of Nursing to make the decisions to ensure that there is a minimum of ¾ staffing. A copy of the next day’s schedule should be in the hands of the night supervisor when she comes on duty.

To the best of my knowledge, aides are supposed to call in if they are not coming to work at 7:00 a.m. A Night Supervisor is supposed to monitor the call-in (call-out?) line. There is no indication that the Night Supervisor is notifying anyone, e.g., my aide who was to be here at 8:30 called in early with a dental abscess. No one on 3-S was notified that she would not be in so I did not receive basic clean-up care.

· Every time the Night Supervisor gets a call-in, she should check the Day’s schedule to see if that drops a unit’s staffing below ¾. If it does, then the Night Supervisor should mandate a Night staff member to stay and work Days until other arrangements can be made.

It appears that no attempt is made to cover staffing at 7:00 when it is needed to get patients toileted, medicated, breakfasted and cleaned up for therapy. It appears that it all waits till administrators come in at 8:00 and start to shift and shuffle employees to float, which doesn’t take place till 8:30. In other words, no patients call bells are answered from 7:00 to 8:30, by which time the one or two staffers who have shown up are so helplessly overwhelmed that they’re ready to quit.

To the best of my knowledge, all administrators, from unit nurse managers on up, are in meetings all morning! It starts with Rounds, then continues on to two other meetings.


No administrative meeting can be held until all patient call bells have been answered. Administrators will provide direct patient care until they can provide appropriate staffing.

Administrative meetings will not be held back-to-back all morning. Only one meeting in the morning and the second meeting in the afternoon.

This morning I was trapped in bed by a misplaced catheter bag. No aide answered my bell. No one in the nursing station answered the phone. The nurse manager put Rounds ahead of answering call bells. The DON wasn’t answering her phone.

What was I supposed to do? I couldn’t get to the toilet, couldn’t escape a fire, and couldn’t get help if I was dying. This morning they called a Code Blue. Who was there to answer it?

How long is the government oversight system going to let this go on? Bad winter weather has increased the number of aides not getting to work. That will continue for weeks, if not months. It happened yesterday, it happened today and there is every reason to think that it will happen again tomorrow.


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A Little of This, a Little of That

Mid-line February, already.

A bouquet of red, pink and white roses and carnations sit on my windowsill, backed by the relentless gray skies of Syracuse. Flowers give me such a lift.

This afternoon there was a fire in a house on Gertrude Street, which put it a block and a half away from my window. Lots of black smoke—creepy.

Got a shower yesterday and clean-up today.

Yesterday also got yelled at by a nurse. He said that I had no right to “demand” that he “drop everything” and bring me medicine. His idea of “drop everything” was 45 minutes.

Short-staffed again today; call bells not being answered for an hour and a half.

Question: Can you name the three best-selling authors in the world? Answer: The Holy Bible, Shakespeare and Agatha Christie.

The thing about February is that there is nothing happening. People go to work, go home, change boots for slippers, eat supper, watch television and go to bed. Get up the next morning and, when asked what’s new, say “nothing.” All the money got spent at Christmas, all the energy got used up in January, and now there’s nothing to do but hibernate.

And James Square has denied access to the website that tells you when sunrise is.

Go figure.

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According to the Nurse

It was noon and my lunch tray did not arrive.

At 12:05 I put on my call bell to ask for my lunch. I sat in my bed and waited.

At 12:10, no lunch and no nurse’s aide.

I have severe diabetes with a glucose level around 400; it should be below 120. Because I also have myalgic encephalomyelitis, I cannot take insulin. I have to eat regularly at 8:00 a.m., noon and 5:00 p.m. Otherwise, my glucose level drops severely and rapidly. It was 12:15: no lunch, and no aide to bring me orange juice.

At 12:20 I put the bed down, lay down and closed my eyes. My glucose was falling and if I did not eat then I would “fall asleep,” i.e., go into a diabetic coma.

At James Square nursing home, a MOLST (Medical Orders for Life-Sustaining Treatment form) is mandatory. Mine says Do Not Resuscitate (DNR)—if I am found unconscious then no medication is to be administered, no IVs are to be started, no ventilator, no nothing. My BiPAP is to be continued for comfort care; that is all.

If I slip into a diabetic coma because James Square has failed to meet feeding needs, then it’s over. No restorative action is to be taken.

At 12:25 nurse Lisa came in with my tray. I was pretty well gorked out and just laid there and looked at her. Finally, I asked her if she knew I had diabetes. She said yes. She said Food Service had just delivered my tray.

Then I asked her if she knew that I couldn’t take insulin. Again, she said yes. I asked her what she had done to get my tray. She said she was busy taking care of other patients. What am I—chopped liver?

I explained to her about my MOLST and DVR. I explained to her that if I didn’t get fed on the necessary schedule and went into a diabetic coma, then there was nothing she could do but stand there and watch me die.

She said that it was my job to work it out with Food Services.

I have been at James Square for six months. I have talked about this problem to aides, nurses, unit nursing managers, diet techs, Food Service supervisors and the Food Committee with Food Service director, Joe, and his staff. I have talked to everybody.

Several weeks ago, on a Tuesday, I talked to Bill Wilson, assistant administrator for Food Services. He said he would investigate and report back by Friday. A month later, he has not reported back.

Last Friday, I met with Joe. He said that he and Wilson were meeting on Monday regarding my feeding needs. Today is Wednesday.

And nurse Lisa says it is the patient’s job to work it out with Food Services, not hers or anyone else’s.

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Euthanize the Administrators First

Unit 3 South at James Square has 34 beds. On the day shift, it is supposed to have four aides. Today it only has two aides to toilet, serve breakfast, and do clean-up for 17 patients each. It is impossible. Most of the administrators spend most of the mornings in meetings. They should be out on the floors doing the necessary work of caring for sick people. The angry aide is told she will be fired if she leaves. She has minor children.

Helen Norine has been the administrator for about 15 years. In the annual survey in October 2015 by the NYS Dept. of Health, the Statement of Deficiencies runs to 123 pages. Norine’s last day is tomorrow. She is expecting a big farewell reception.

The Statement of Deficiencies is a chilling trip through a land of horrors:

• The patient’s legs were swelling and nobody paid attention. The patient had deep vein thromboses in both legs. Finally, the patient was transferred to a hospital for proper treatment, including the blood-thinner Coumadin. When the patient was returned to James Square, the hospital notified the nursing home of the proper dose of medication to be continued. The re-admission nurse copied down the drug order—and did not pass it on to anyone. After a few days without medication, the patient went into full arrest.

• Food Service was not keeping food at the proper temperature. When the investigator tried to interview the kitchen worker responsible for maintaining the temperature it was discovered that he was foreign-born and could not understand English.

• A patient with cerebral palsy as well as other diseases and virtually no cognitive capability was left lying alone on his bed. There were no wall decorations, no music, no visitors—no stimulation of any sort. He laid there in blank silence day after day after day with no care plan.

• A rehab patient, who planned to go home, needed to learn how to manage his colostomy by himself. In fact, he was not receiving training or assistance in how to maintain hygiene. He wasn’t even receiving daily care.

Many of the deficiencies were followed by a note that the deficiency had been observed in both 2014 and 2013.

In the name of God, how could the NYS Dept. of Health (DOH) let deficiencies linger for years? Oh, well, they weren’t severe deficiencies.

James Square management has hired an agency to respond to the DOH Statement of Deficiencies. The agency has taken over a conference room at James Square for a month.

How can a nursing home unit be left with half-staff?

The last meeting of the family council at James Square had fewer than 10% representation of the 400 patients.

We, as a society, have abandoned our elder citizens. Nobody wants us, or wants to pay to care for us.

How dare you say no to euthanasia?

Starting with Helen Norine and other nursing home administrators who run sub-standard facilities.

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One-hour Wait for Pain Meds

At 7:35 p.m. on Monday evening I pressed the call bell and asked the Philippian aide to ask the nurse for pain meds. She left, came back, and said the nurse was on break.

At 7:55 p.m., I called her again and again she told me the nurse was on break.

At 8:00 p.m. I called Supervisor Robin and she said she would take care of it. She didn’t.

At 8:15 p.m. I called Supervisor David; he said he would take care of it. He didn’t.

At 8:35 p.m., the nurse came with the medicine. She said she had just gotten her first notice of my need. She also said she did not go on break until 8:00 p.m.

At 8:40 p.m. the Philippian aide said that she couldn’t find the nurse when she went looking for her an hour earlier.


WHAT THE HECK IS WRONG WITH YOU PEOPLE??? This happens repeatedly. What are you going to do to fix this broken system?

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Depression or SEID?

Good morning, again!

There is great good news, and that is that I am feeling better. Why? Two reasons, we think.

First, I have been on bedrest for six months. Remember, this disease—S.E.I.D.—originally was called chronic fatigue syndrome (CFS), then chronic fatigue immune deficiency syndrome (CFIDS). It is all about a form of tiredness that is not relieved by a good night’s rest. You may recall that in 2013 I spent 104 days confined to bed at Crouse Hospital. Then I went home and took care of myself for several months without an aide. I got Meals on Wheels, and paid for someone to come in once a month to do the cleaning.

In Great Britain they are way ahead of the United States on the diagnosis and treatment of SEID/myalgic encephalomyelitis (ME). They have clinics that exist solely for the treatment of SEID. SEID/ME patients are routinely admitted to hospital or nursing home for a year or two. Seriously, the British are way ahead of us. Why would that be?

Well, for one thing, the royal family uses homeopathy. From the top down, the British know from experience that there are better ways to treat sick people than by giving them pills—and their insurance pays for it. Prince Philip is 94 years old, and what does that tell you?

The other thing requires a brief review of the possible cause and effect of SEID/ME: a virus migrates to the brain where it creates an autoimmune disease. The autoimmune disease affects the nervous system and the immune system. When you administer drugs to a person, the first thing that happens is the immune system raises its head and yells “What the hell is that!?” Answer: it is not a carrot or a cheeseburger, so the immune system tries to expel it from the system. The effort to expel is called “side effects.” Nausea, diarrhea and fatigue are all ways the immune system tries to get past this bad stuff you’re putting in your body.

CFS/CFIDS/ME/SEID all are different names for a disease in which the immune system is damaged and can’t tolerate pharmaceuticals. So the pharmaceutical companies leave it alone. It is too hard and costs too much money to develop useful drugs.

Also, medical schools do not teach SEID. There’s no treatment, so why bother? Whether this cycle of ignorance begins or ends with the pharmaceutical companies or the medical schools is unknown, but they both are complicit. One outstanding physician told me that he learned more about the immune system from trying to treat me than he ever learned in medical school.

Because patients with SEID are not being properly diagnosed, they are being improperly diagnosed. Remember, SEID affects the immune system and the nervous system. The nervous system affects both your ability to walk, and your ability to remain calm in the face of difficulties. Consequently, the medical profession diagnoses your autoimmune disorder as a psychiatric disorder, particularly depression.

You know how you can figure out if you have depression or SEID? Take a nap. If you wake up un-depressed, then it’s SEID. If rest clears up your depression then you’re not depressed—you’re tired. And do not take antidepressants! According to Dr. Sarah Myhill, world expert on chronic fatigue, antidepressants exacerbate the problem. I was given antidepressants every day for 26 years. Now, at the age of 69, I am bedridden in a nursing home. You wanna go with that???

So where do we go from there?

The first half of why I’m feeling better is that I’ve been on bedrest for six months. I have systemic exertion intolerance disease (SEID) but I have not been exerting myself. Other people buy and cook my food, do my laundry, wash my hair, and pick up a fork dropped on the floor. I do not make the situation worse by exerting myself.

The other part of why I’m feeling better is that I’m up to 8 minutes a day in using the lightbox. Maybe we can talk about that tomorrow.

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