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.

I WAITED AN HOUR FOR PAIN MEDICINE!

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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Getting on Roz’s Shit List


The day dawned bright and early at 7:15 a.m. I pressed the call bell to ask for my lightbox but there was no point. This is James Square nursing home where they do not answer call bells from 7:00 a.m. until after 7:45 a.m. Need pain medication? Desperate to go to the bathroom? Hungry for breakfast? Forget about it. You will not receive any care for 45 minutes.

Except things might be changing. A week ago, the unit nurse manager went out on leave with a recurrence of cancer. Kate Duda was a fine person and a good nurse and all the rest of us fine-good people were stricken when we heard that she was gone. If you know her, please send her our best wishes for a good recovery, and our thanks for the job she did here.

Kate’s withdrawal was followed by several days of utter chaos, but by Friday Roz Richardson had become the temporary new unit manager. Roz has been a nursing supervisor for seven years, and is a no-nonsense, take-charge manager. I called her and said that I had been trying to get pain medicine since quarter past the hour. Roz said, “I’m gonna kill someone. You’ve been waiting half an hour for pain meds.”

A recent story has been going around about Kate. She had to order one of her aides to float to another unit. The aide responded by cursing Kate, and then refusing to take the assignment. Instead, the aide called Helen Norine, the administrator, at home and woke her up to protest. Norine backed the aide and told her she didn’t have to take the assignment. What should have happened was that Kate should have fired the aide on the spot. Except Norine wouldn’t permit it.

So how does an administrator expect a middle-management staffer to do her job if she knows that the boss won’t back her up? And what is the relevance that Kate Duda was an old white woman, Helen Norine was a middle-aged white woman, and the aide was a young black woman? There are too many young black females working as aides who think they can say and do anything they want to.

They have just met Roz, who is a middle-aged black female who has the education and experience to call the shots. We had a long talk this morning. I looked in her eyes and saw a woman who isn’t going to be pushed around. Last week she had a nurse getting weights on all the patients, which hadn’t been done for weeks. Today, another nurse was doing skin checks on patients, which hadn’t been done in the six months I’ve been here.

Meanwhile, down in a conference room off the lobby, management has hired a team for a month to work on the response to the NYS Dept. of Health’s (DOH) “Statement of Deficiencies.” The Statement came from DOH’s inspection in October 2015. The listed deficiencies ran to about 125 pages.

Meanwhile, last week Administer Helen Norine, who has been here about fifteen years, announced that she is leaving on February 5—jumped, fell or was pushed not stated. Also leaving on Feb. 5 is an aide from 3 South who cares only for the money and nothing for the patients. She is going to Loretto, where bad James Square aides go. When her name came up this morning in the conversation with Roz, Roz gave me a flat stare that said louder than words that she already had that particular aide up and running on her shit list.

A nurse from last night also got the same flat stare from Roz. At 7:20 p.m. I pushed the call bell and asked the aide for two hydrocodone—some serious pain meds. I was hurting. According to Kate, nurses are to administer pain meds within five or ten minutes of receiving the request. I waited 10 minutes then called the aide and placed a second request. Still nothing. At 7:45 p.m. I called the 3 South supervisor, Robin, and asked for the pain meds and to file a complaint about an aide earlier in the evening. Robin said she had two patients ahead of me before she could take the complaint, but would immediately call the 3 South nursing station to get me the hydrocodone.

It didn’t happen.

At 8:00 p.m., I called back and asked for Robin. Instead, I got Pauline, a nursing supervisor from another floor. She said the med nurse (who didn’t give me my medicine) was standing right next to her. Ten minutes later, Pauline walked into my room with the medicine—only 50 minutes after I asked for it. Imagine your husband laying on the couch moaning and waiting 50 minutes for you to bring him pain medicine.

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Snow Day


About 75% of the nurses aides who work at James Square Nursing Home and live on the south-side have not come to work today.

About 75% of the housekeeping staff, who are foreign-born, have come to work.

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SEID/ME/CFS “New Working Group includes representatives from 23 institutes . . .”


Dear Ms. Woodlen:

We are responding to your email to the National Institute of Neurological Disorders and Stroke (NINDS) concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

You requested an update on the National Institutes of Health’s (NIH) plans to launch a research study on ME/CFS. The primary objective of the upcoming study, which will take place at the NIH Clinical Center in Bethesda, Maryland, will be to explore clinical and biological characteristics of ME/CFS following a probable infection and identify biomarkers that could guide diagnosis and treatment of the disease. The results of this initial study will improve understanding of the disease’s cause and progression and lay important groundwork for future clinical studies and trials. This study will involve researchers from four NIH institutes: the NINDS, the National Institute of Allergy and Infectious Diseases, the National Institute of Nursing Research, and the National Heart, Lung, and Blood Institute. At this time, no date has been set for the start of the protocol and enrollment has not yet begun. You may wish to contact the NIH’s Clinical Center Patient Recruitment service (1-800-411-1222; prpl@mail.cc.nih.gov) in early 2016 for protocol updates and information on participating in clinical trials.

In the meantime, you may wish to search ClinicalTrials.gov, an NIH online database that has information about federally and privately funded clinical research studies on a wide range of diseases and conditions. You can access this database at https://clinicaltrials.gov/ to learn about the location of research studies in need of participants, as well as their purpose and criteria for patient participation. The database has several studies on ME/CFS. Please refer to the “Contacts and Locations” section of any study for the name of the person or institution to contact for more details. New studies are being added to the database every day so it is worth searching periodically. The NIH study on ME/CFS will be included in this database once it is recruiting patients. You may also be interested in ResearchMatch, an NIH-funded registry to help connect volunteers with researchers who are in need of study participants: https://www.researchmatch.org/.

We would like to take this opportunity to provide an update about the NIH’s initiatives since the NIH’s news article about ME/CFS on October 29, 2015 (http://www.nih.gov/news-events/news-releases/nih-takes-action-bolster-research-myalgic-encephalomyelitis/chronic-fatigue-syndrome).

The NIH has renewed the focus and efforts of the Trans-NIH ME/CFS Working Group, which is chaired by NINDS Director Dr. Walter J. Koroshetz, with assistance from Dr. Vicky Holets Whittemore, the NIH representative to the Department of Health and Human Services’ CFS Advisory Committee. This Working Group provides a forum for coordination of ME/CFS research across multiple NIH institutes, centers and offices, as well as for discussion of scientific opportunities and gaps in the research that can be addressed by working together to further research on ME/CFS. Since the root cause and the driving pathology behind ME/CFS are unknown and the symptoms are so wide-ranging, a trans-NIH approach that involves multiple institutes is clearly needed. Therefore, the new Working Group includes representatives from 23 institutes, centers, and offices.

The Trans-NIH ME/CFS Working Group met on November 9, 2015, to review the recommendations from the Institute of Medicine and “Pathways to Prevention” reports and discuss what the next steps should be. The group will hold additional meetings soon. This renewed research focus should lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.

We at the NIH are confident that the new clinical trial and other initiatives that were recently announced will support the efforts of the scientific experts who are working on this very challenging disorder and will encourage rapid scientific progress and the development of new ways to prevent, diagnose, and treat ME/CFS.

We hope this information is helpful.

Office of Communications and Public Liaison,
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group

****************************************
Subject: Request info re research on Myalgic encephalomyelitis/Chronic Fatigue Syndrome

Comment/Question: "Science writer Brian Vastag suffers from CFS, which is also known as Myalgic Encephalomyelitis (ME) or ME/CFS. Here’s how he described the disease in an open letter to National Institues of Health director Francis Collins first published in July in the blog, "The Last Word on Nothing," and reprinted by The Washington Post: . . .
And last week, Collins announced the NIH would do just that. The agency said it plans to launch a research protocol to "intensely study" people with Chronic Fatigue Syndrome, and "re-invigorate" the efforts of an existing research group, as part of a multi-institution effort led by the National Institute of Neurological Disorders and Stroke (NINDS)."
I have been unable to find anything at NINDS about this. Please advise.

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Merry Christmas


Merry Christmas to you all, unless you do not profess Christianity in which case, from my loving heart to you at this holiday time.  I believe that we all worship the same Lord, so blessed be you.

 

Two weeks ago I switched to Lyrica and did much better, but I now am having side effects to the Lyrica and have stopped taking it.

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