On a Happier Note...A Holiday Reunion 70 Years Overdue

On Wednesday, November 26th, the day before Thanksgiving, 75 year old Mira Wexler was reunited with 85 year old Helena Weglowski at JFK Airport.   The two women hadn't spoken since 1942 when Helena's family hid 3 year old Mira and her mother, Chana, from German soldiers on their mill farm in what was then Poland but is now Ukraine.

Mira and Helena were elated when they saw each other for the first time in over 70 years, then shed tears of joy.

 

The reunion was arranged by The Jewish Foundation for the Righteous, a charity that gives $1.4 million per year providing financial support to people called "righteous gentiles" who risked their lives to save Jews from certain death during the Holocaust.

When staying on the farm became dangerous, Mira and her mother hid in the forest near the mill, and Helena frequently brought them food to keep them alive.  “They always hid us because it was very hard to stay in the woods without any food in the cold time so Helena’s family always welcomed us in.  They risked their lives because their home was so well-known and big” Mira told PIX11 News.

“If you were living in Eastern Europe and you helped a Jew in any way,” said Stanlee Stahl, JFR executive vice president, in an interview, “whether it was shelter, or food, or forged documents, and you were caught, you as a Christian, and your family and the Jew or Jews you were helping were murdered.”

Mira currently lives in Brazil where she and her mother moved after World War II. Helena currently lives in Ilawa, Poland.

This story was originally published by KTLA sister station PIX 11 in New York, and was distributed by the CNN Wire.  Watch KTLA’s video here: http://ktlane.ws/1yi997y.

My Blog Post Tip Was Flawed but Led to Many More Resources for Caregivers

In my original blog post, I shared a tip about www.medicare.gov/nursinghomecompare, a website I found that I believed would help caregivers find better nursing homes.  This post is about an article I read concerning nursing home staffing levels.  You can skip ahead to "New Resources for Caretakers" if time does not allow you to read on.

After reading "Nursing Home Care Levels May be Much Lower Than Families Think" by Jeff Kelly Lowenstein of the Center for Public Integrity published on November 12, 2014, I realized that the data on the website may be somewhat flawed or worse.  You can read this article at http://www.nbcnews.com/news/investigations/nursing-home-care-levels-may-be-much-lower-families-think-n246431. 

On the www.medicare.gov/nursinghomecompare  website, there are three levels that determine the overall rating of nursing homes from one to five stars, five being the best.  The overall "star" rating is comprised of the combined rating for Health and Fire-Safety Inspections, Staffing and Quality Measures.  The article I am writing about discusses staffing levels which I believe is the most important part of the overall rating.

All the data used to determine the overall rating is reported to Medicare by nursing homes.  According to Jeff Kelly Lowenstein, after analyzing the data sent by nursing homes, the Center for Public Integrity found that thousands of nursing homes had reported staffing levels that were higher than the data reported to Medicare which means the staffing rating is lower that what is reported on the www.medicare.gov/nursinghomecompare website.

Per the article, "The discrepancies raise profound questions about the accuracy of the information in the so-called Nursing Home Compare website that many consumers use to pick a nursing home for family members. The reporting discrepancies occurred for all types of positions, but were particularly high for registered nurses, the most skilled and highest paid workers."

According to www.medicare.gov/nursinghomecompare the data used for staffing levels was self-reported by nursing homes to their state survey agency during a two-week period prior to state inspections. "Staffing hours are reported by nursing homes and displayed as the number of staff hours per resident per day calculated by the total hours worked divided by the total number of residents.

I'd like to advise that users of this website should not assume that this number reflects nursing staff present or the amount of care given to any one resident, and should also realize that the staffing hours/level may have changed after the numbers were reported.

For these and other reasons, this apparently has been a problem since staffing levels began to be reported in January, 2012 as stated in a report I found on the State of New Jersey, Department of Health website entitled, “Nursing Home Staffing Level Report to Improve Transparency, Empower Consumers" http://www.state.nj.us/health/news/2012/approved/20120723b.html.

Staffing levels are critical for resident care for many reasons.  Reported in almost 100 academic studies, residents' quality of care is strongly related to the amount of care received.  Since registered nurses are the most experienced and highest paid, these positions are more frequently understaffed.  Injuries and even death are more likely when lower levels of care exist due to understaffing or not enough experienced staff.

In addition, staffing levels can vary based on many factors, for instance, nursing homes that care for more seriously ill or injured patients would have more staff.  In addition, overtime is often reported which would lower the ratio of patients per RN/LPN because it looks as if there are more staff, but that isn't accurate.  According to the Nursing Home Nursing Staff Report at http://www.nj.gov/health/healthcarequality/nhstaffing.shtml, also very important but not included in staffing level data are clerks, administrators, housekeeping staff, etc.

Per www.medicare.gov/nursinghomecompare/data/datasource, the data used for rating the nursing homes comes from two sources.  The first source is the CMS Health Inspection database "which includes the nursing home characteristics and health deficiencies issued during the three most recent state inspections and recent complaint investigations. Data about staffing and penalties levied against nursing homes also come from this database.” 

Issues found during health and fire-safety inspections, complaints and penalties reported can be viewed and read on the website.  I read many of the complaints and reports when researching Lincoln Park Care Center where my husband is currently living, as well as others while trying to find a better place for my husband to live.  I think that these reports are the best part of the website since they are actual reports that cannot be skewed or exaggerated.

Quality Measures come from data that is regularly collected by nursing homes and are based on care given to all residents and not on individual residents.  Most of the quality measures were reported in the week prior to the assessment, and may not reflect patients' conditions prior to or after the week in question.  For these and other reasons stated below, I question the usefulness of the Quality Measures rating.

The second source of data comes from a national database called the MDS (Minimum Data Set) Repository.  Data for quality measures come from the MDS database.  In order to be certified by Medicare and Medicaid, nursing homes perform periodic assessments on every resident by collecting information about the resident's health, physical functioning, mental status, and general well-being. "These data are used by the nursing home to assess each resident's needs and develop a plan of care."

A disclaimer on the www.medicare.gov/nursinghomecompare website states, "All of these data are reported by the nursing homes themselves. Nursing home inspectors review it, but don’t formally check it to ensure accuracy. This information changes frequently as residents are discharged and admitted, or residents' conditions change. The information should be interpreted cautiously and used along with information from the Long Term Care Ombudsman's office, the State Survey Agency, or other sources."

Since many nursing homes work hard to prepare for these inspections, and for the reasons stated above, unless another way can be found for reporting staffing levels, I think they should not be used as part of the rating system because as "critics say, those staffing levels may be artificially inflated." 

New Resources for Caretakers

Thanks to this article and more research, I have a lot more resources to share for caregivers:

·       http://www.ltcombudsman.org/

·       http://www.carepathways.com/nhg-state-survey-agency.cfmhttp://www.nj.gov/health/cancer/documents/data_release_policy.pdf

·      http://www.nj.gov/health/healthfacilities/documents/ac/njac833f.pdf

·       http://www.nj.gov/faqs/health/

·       http://www.state.nj.us/health/healthfacilities/search.shtml

·       http://money.usnews.com/money/personal-finance/articles/2014/05/07/5-traits-of-the-worst-nursing-homes (look out for these red flags when checking into nursing homes)

·        http://health.usnews.com/best-nursing-homes/area/nj

·        http://nj.gov/health/healthcarequality/nhstaffing.shtml

·        http://www.nj.com/news/index.ssf/2014/02/how_do_nj_nursing_homes_rank_us_news_world_report_hands_out_grades.html

Blowing the Whistle on My Husband's Nursing Home

The purpose of my blog's first post was to share a tip for caretakers which was a link to an excellent online resource I found to locate quality nursing homes.  Unfortunately, they all have waiting lists.  I started the blog by sharing a little bit of my husband John's history.  I gave the reader a choice of reading the history or skipping ahead to the tip.

I discussed Lincoln Park Care Center, the nursing home where John has been living for the last 2 years and shared pictures of John's meals, and al one before and after my complaints.  The after wasn't much better. Here is a picture of a meal I didn't share yet (two upside down hot dogs, corn and some kind of potato).
 

Using the new resource, I found out Lincoln Park Care Center is a 2 star nursing home, although they have told me many times that it is a 5 star nursing home.

 
For this post, I would like to share something that happened this past week that was very upsetting because I'm sure it happens to many other residents.  I'll then share what happened next which is why I called this post, "Blowing the Whistle on Lincoln Park Care Center."   The following may only be interesting to people who have experienced something like this, and may also give them hope that there is something they can do!

I have to start with problems we had over the summer that led to the current topic.  John had developed symptoms of a urinary tract infection but after 6 weeks of me finally begging that a urologist appointment be made for John, and after being told many times that he didn’t have an infection, I finally demanded that someone listen since we've been together for over 31 years so I know when something is wrong. 
 

I had been proven right several times since John has been there, and what really gets to me is they continually play a message you hear when you are calling and are on hold which says something like, "the same level of care extends to the guests' families because we recognize them as an important part of the healing process."  The message also uses the words warm, inviting environment, comfort, quality and luxury but none of these are words I would use when describing this facility.
  
 



This is most of John's living space.

This is the bottom of his bed and the rest.

Here is a picture of John today in his one-third share of the room.  As the saying goes, a picture is worth a thousand words! 



The message goes on to say they have a wide range of activities that motivate and stimulate residents.  All John does all day is watch TV and go outside 3 times a day to smoke.  He uses the walker to get up, and since his stroke 2 weeks ago, he has been mostly in a wheelchair. 
 

Here is a room where residents go to watch TV. This room was redecorated last year.  There wasn't a couch for 6 months and the residents came and stood there but the TV wasn't ever on.  Look at the size of the room and the seating in it.  The couch is so low that residents have a hard time sitting down.


Anyway, back to the story.  An appointment was finally made with a urologist, and after several tests that took another month, it turned out John’s bladder was almost completely blocked by his prostate, and he had to have prostate surgery.  As a result of the surgery, a biopsy was taken that showed the beginning stages of prostate cancer.  Many appointments were scheduled: shots to lower John’s testosterone, a CT scan to insert gold pellets near John's prostate, another CT scan to locate the pellets so a tattoo could be placed where John would then have 44 daily radiation treatments. 
 

On Tuesday, November 11th, John was to have the first CT scan to insert the gold pellets. This procedure required general anesthesia and had been scheduled for quite some time.  Because John is a diabetic and keeps snacks in his room, and because he gets up extremely early, I was afraid he would forget and eat or drink after midnight.  I called to remind the nurses taking care of John during the 3 shifts prior to the procedure reminding them John was "NPO" and asking them to remind John not to eat or drink. 

I didn’t feel confident John would get the message because when John previously had the prostate surgery, no one told him he couldn’t eat or drink except for me, and the nurse was “supposedly” written up.  Sadly, that wasn’t the first time I was told someone was written up.  I have no proof of this and since the same things continue to happen, I don’t really believe it.  Thank goodness I had called John repeatedly the night before to remind him.  An aide went with John by ambulance to have the surgery, and my mother and I met John there and made sure he didn’t eat or drink before the procedure.

Like last time, John was taken to the facility with an aide by ambulance.  I was delayed and ran into some traffic, and ended up taking two wrong turns.  I got there a few minutes after John and he had already drank a half a cup of coffee.  The doctor was upset and said this happens all the time with nursing homes, and although he didn’t want to, he gave John a local so all of his upcoming appointments wouldn’t have to be rescheduled.  John felt everything and was in a bit of pain but at least we’re still on schedule.   I asked the aide if she was told John was having anesthesia and she said no.  I told her I wasn’t mad at her but at Lincoln Park Care Center staff for not telling her.

From the time I asked the aide if she know about John getting anesthesia until John got into the ambulance to leave, she was on her cell phone in the lobby of the building or outside so I don’t know who she was talking to but I assumed it was Lincoln Park Care Center staff.   When John was getting ready to go in the ambulance, the aide said that she wanted me to know that it wasn’t her fault or Lincoln Park Care Center’s fault.  She told me what I felt was a made up "story" because she hadn't said anything about it before.  She said she asked the facility if John was having anesthesia and they said no.  She was argumentative and I asked her what had changed that she was so mad at me when she was so nice before.  She stated she works for Lincoln Park Care Center, and she was going to defend them.  I told her that was ridiculous because even her story were true, if she was told that John was having anesthesia, she would not have asked if he could have coffee.

After the ambulance left, I went back inside and spoke to the surgical technician that was at the front desk when John arrived.  She told me that a woman came up to her and asked, “if someone is not going to sleep, can they drink coffee, and she said yes.”  She didn’t question who the woman was talking about, and perhaps she should have, but again, if the aide knew John was having anesthesia, she wouldn’t have asked in the first place.  The surgical technician also said that Lincoln Park Care Center is notorious for sending patients who had eaten or drank and had to have appointments rescheduled.  

I was supposed to go to work but I was so mad I went to Lincoln Park and ended up there for hours talking to the supervisor, a social worker and finally the administrator.  They all already had already heard “the story” which made me suspicious because if it were true, why did everyone know about it in less than the 20 minutes it took me to get there.  But “the story”, in fact, had gotten worse since I was told it was the facility that gave John the coffee.  I told everyone that Lincoln Park Care Center is responsible for John when he is out of their facility, just as they have told me that I am responsible for John when he goes anywhere with me. 

 

After everything I said, they didn’t see anything wrong with what happened and were certainly not going to admit it if they did.  I said that if someone didn’t at least admit that the aide should have been told, I would have no choice but to make a complaint.  I also stated that in addition to recently doing extensive research on nursing homes, I am also taking a Social Media in Society course and learning how social media is important to businesses because they can see what people are saying about them.  I said that I had started posting all of this on the internet, specifically on Facebook, Twitter and Google+.

 

They didn't seem worried and nothing was resolved so the next day, I wrote an email to the COO of the nursing home and laid out all of the facts above. I said that I already wrote about Lincoln Park Care Center on Sunday on my blog (www.ckrostek.blogspot.com ) before what happened yesterday or it would have been much worse, and that I asked my 472 friends on Facebook to circulate it to all of their friends, and so on. I told her people responded immediately with prayers and advice.  

1988

Thanksgiving Day, 2013

I am posting pictures of John and me: one from about 27 years ago, right before we got married; one from last Thanksgiving at my sister Jackie's house in Pennsylvania; and one from this afternoon because I want to make this more real and personal.





 

Yesterday, 11/16/14



 

 

I said that if someone at Lincoln Park Care Center takes me seriously and I felt that John’s welfare wasn’t in jeopardy, I would take everything down and listen to what they had to say.  I then asked why it was that I could not get anyone to see that there are problems here that should be addressed?

After sending the email, I received a phone call within 20 minutes from the Administrator asking me to take everything down and they would listen to me.  He apologized and said we would talk.  I got another call a few minutes later and again the next morning.  It seems they are trying in a small way but there are many more important issues I haven't even begun to talk about in this post that need to be addressed.

I took everything down and posted on Facebook the reason I was removing the blog post so soon.  I had over 25 comments that I was doing the right thing, and many people said that I shouldn't take anything down until I saw changes were being made.

Since nothing is resolved, so I took everyone's advice.  What do you think?

An Important Tip for Caretakers

16 years ago at age 39, I became my husband’s caretaker.  It was August 2, 1998 when my husband John suffered a Grade 5 Subarachnoid Hemorrhage.  He was only 40 years old. 

Since this is my first blog, I will share a bit of our story, and then I'll provide an important tip that I hope will help others in my situation who are feeling helpless, hopeless, and overwhelmed. If you would like to skip the story, see a helpful tip, "How to Find a Better Nursing Home" below.

For those of you who don't know what a subarachnoid hemorrhage is, go to http://en.wikipedia.org/wiki/Subarachnoid_hemorrhage.  It says, "Up to half of all cases of SAH are fatal and 10–15 percent of casualties die before reaching a hospital.  Those who survive often have neurological or cognitive impairment."  After 5 weeks in Columbia Presbyterian’s Neurological Intensive Care Unit and 6 weeks in Kessler Rehabilitation Center, John came home and things have never been the same.

On December 26^th, it will be the 2nd anniversary of the date I finally had John admitted to a nursing home called Lincoln Park Care Center recommended by Social Services, but sadly, I find I am still a caretaker.  

 

4 Chicken Nuggets & Fries 

I visit several times a week and have to advocate for John constantly for many reasons: making sure he is given the correct medication, taking his clothing home to wash because is clothes keep getting lost, bringing him food because the portions he got weren't enough to feed my Pomeranian and demanding second opinions.  If you read the menu next to the picture to the right, you will notice that John's last name is spelled wrong and the meal is entirely different that what is on the menu.  After 3 family meetings over a year's time, they finally doubled John's portions.  See the difference below.

Dinner Before

Dinner After

 

John had a Lacunar stroke on Father’s Day in 2013, and another stroke on October 26th, at least the symptoms were exactly the same but he was misdiagnosed with drop foot and neuropathy.  I demanded a second opinion and the neurologist agreed with me, although he said John has so much damage that he couldn't see evidence of a new stroke.  Lincoln Park Care Center will only hold John's bed for 10 days and then they pack up his belongings.  If they don't have another bed available, he has nowhere to go.  Since I didn’t want him to go back there and the social workers at the various hospitals John has been in never helped me, I decided I had to do something myself.

How to Find a Better Nursing Home:  I spent an entire night last week researching the internet to see if I could find a better place for John to live.  By accident, I found myself at medicare.gov/nursinghomecompare.  You put in your zip code and click search, then narrow down your search by using various filters.  You can also just put in the name of a nursing home and search and it will give you voluminous information about that home including inspections and complaints.  You can read and/or print the actual full reports which include everything that failed the inspections and why, and what complaints were made against the facility and how they were investigated.

I did a search and chose “Within 25 miles”, “Overall rating of 5 Stars” and I checked Accepts Medicare and Accepts Medicaid.  My search brought up 119-5 Star nursing homes. 

The bad news is that all the nursing homes I have called so far have a waiting list.  The good news is that I am adding John to the waiting lists of 5 star nursing homes within 25 miles that I never knew existed, and you can eliminate the lesser quality nursing homes immediately!

I finally have confirmation that Lincoln Park Care Center is a poor nursing home, and not that my expectations were too high.  They are rated 2 Stars by Medicare, and as I stated above, I was able to click on all inspections reports, see where they failed, and also see complaints about them and read the actual reports.

My heart goes out to all of you in my position, and I hope this information helps you find a better home for your loved one.  I'll keep you posted.