The Need to Speak Up

by Tyra Phipps, Ed.D. (tyra.phipps@gmail.com)

July 3, 2014, Ms. Carolyn Waldron Sheets wrote, “I never really knew what happened to my mom and it has haunted me since February, 1999.  She was only in an assisted living facility a week until she was taken to the hospital and passed away nine days later.  One of the other residents found her behind a door.  What on earth happened?  Obviously, she must have fallen.  I thought I was giving her the best care I could at the time.  But I never could get the full story.” 

On June 28, 2014, Ms. Dawn Buskirk explained, “My sister and I both took the GNA/CNA class at MCVTC [Mineral County Vocational-Technical Center] we were to do a year obligation of work.  My sister did about five years and she was always upset.  I completed about eight months, although I was part-time.  I had seen enough to last a lifetime!  I would never put any of my loved ones in a nursing home, even if it took all the money I’m making to keep them home!  It upsets me that people do not take the time to research the nursing or CNAs in the facilities they are placing loved ones.  These places put up good fronts to the outside environment and the staff.  It is all after they are placed and time lapses before the true colors show.  I have since talked to a lot of the CNAs I went to class with and they became in-home care providers because of the lawsuits placed on Heartland of Keyser.”

Ms. Dawn Buskirk continued to write on June 29, 2014, “Tyra, you may want to add that when it is time to get residents ready for bed or when they close the doors to prepare them for the night.  Well, let’s just say I have seen some really hateful CNAs.  They treat elderly like children, hopefully not the way they treat their own.  My sister has moved on and will not work in that environment any longer.  She also feels that the elderly have lived their lives and for the most part may have done a world of good during their lifetime and do not need to be treated (or mistreated) the way they are!  I still believe my mom was hit in the face.  Just by the way she would move and jerk her head when we tried to move her hair from her face.  I have no way of proving it now, sure wish I could.  Hopefully something can be done soon so that no one else will be abused!”

Ms. Dawn Buskirk and her sister have a high school education and are licensed as GNA/CNA.  Her testimony of experiences with nursing homes and assisted living also highlighted a big problem of understaffing.  She would only work with her sister on the floor where they had to attend to sixty residents on the morning shift from 7 a.m. until 3 p.m.   Ms. Buskirk talked about not even having time to get to the bathroom or ever take a few minutes to talk to a resident.  It was all she and her sister could do to get people up in the morning, deliver food trays, and get them dressed.  She and her sister worked the floor together, because they could not trust anyone else to carry the load.

Ms. Jan Goodwin wrote in the July-August, 2014 AARP Bulletin:

One explanation is that many facilities do not have enough properly trained staff.  Most of the patient care in nursing homes falls to certified nursing assistants (CNAs) who need as little as 75 hours of on-the-job training to get certified. "Yet if you want a license to be a hairdresser, you need 1,500 hours of training,"  Dr. Charlene Harrington, RN,  Ph.D., Professor Emerita, points out.

What's more, CNAs are paid low wages so many of them work long hours. "They are totally exhausted, with extremely heavy workloads," she says. That leads to high employee turnover and caregivers who don't know their patients well enough to recognize their needs.

Compounding the problem, many nursing home patients require a high level of care.  Some are incontinent, and an estimated 60 to 70 percent have some form of dementia.  There should be one CNA for every seven patients, but in some cases, the ratio is 1 to 15 — or even more, Dr. Charlene Harrington says.  There also tend to be too few physicians actually present in nursing homes.  “These facilities are highly medicalized, but doctors are rarely there," says Mr. Tony Chicotel, staff Attorney for California Advocates for Nursing Home Reform.  He says that because of their low rate of reimbursement from Medicare, nursing homes are too often seen as a place where few top doctors practice.”

Ms. Jan Goodwin, the award-winning author covered the story about Ms. Kathi Levine and her mother, Ms. Patricia Thomas in the AARP Bulletin July-August, 2014.  Patricia was admitted for rehabilitation after a broken pelvis, but just eighteen days later her daughter found her slumped in a chair and chewing on her hand.  She died weeks later.   Ms. Kathi Levine said, "I want our lawsuits to impact nursing homes all over the country.  We need to protect our family members. They don't have a voice, they can't speak for themselves. So we need to speak out for them and help other people know what to look for.  I want to make sure that what happened to my family doesn't happen to anyone else."

Ms. Terry White (July 1, 2014), Operations Manager for the Long-Term Care Ombudsman, Guardianship, Senior Care and National Family Caregivers Support Programs urges, “Speak up.  I do what I can as does the state ombudsman.  We should demand better care.”

Ms. Terry White also stated on July 1, 2014, “I wish I could make all the changes that need to be made in order to provide personalized care based on the preferences of each resident as is their right.  Increased staffing is always needed even though our facilities meet the minimum guidelines.  More people need to speak up and make their voices heard.  It comes down to funding; money is always an issue.  Facilities want to provide the minimum standard of care and no more.  I think the solution is multi-faceted so any change no matter how small is better than no change. The Eden Alternative has the right idea, provide individualized care in a home like environment and provide the care with dignity.”

Ms. Terry White stays positive and talks about the importance of baby steps.  According to Ms. White, the small changes are so significant.  Knowing as much as possible and before moving to assisted living, or moving a loved one into a skilled nursing area is the best defense against a horrible outcome.  Whether it is the story of grieving daughters, the GNA/CNA experience, or an ombudsman's encouragement for everyone to speak up, now is the time to make your voice heard.  Nothing will improve without your voice.  Thank you for continuing to provide personal stories with permission to print so that all of us have a bigger voice.

Questions for Consideration:

1.  How do the people in the local area feel about the long-term care facility?  In one instance, I learned that a woman with a father who had an Alzheimer’s condition had to pull him out of the facility because of the policy of buying all pharmaceutical drugs through the facility pharmacy.  The cost of $40 a month turned into $400 a month at the facility making it too expensive to keep the parent in the facility for long-term care.  Is there a reluctance to talk about anything that goes on at the long-term care facility?  There might be a story or reason why people do not speak up.

2.  Find out if the residents have anything stolen.  It was just this past year that I had a laundry bag stolen or somehow lost.  The nursing aide who does the laundry overnight felt horrible about the situation.  She even bought a replacement from Amazon much to my chagrin.  Things disappear and it is very difficult to track.  Investigate this issue.  Here is one story from David Cravey.  He wrote on July 10, 2014, “We had my wife's father in a facility in Orlando after a stroke when his electric razor vanished. Anticipating this on his placement, I engraved his name and address on the razor.  When I complained to staff, they said there was nothing they could do.  I then told them that if you want a damn check you will find it. Turned up the next day.  That's the rest of the story.”  In short, label everything.  The Assisted Living at Goodwill Retirement Community charges $11 for 100 labels that are pressed into garments, but other personal belongings should be labeled.

3.  Along the same lines of valuable items or keepsakes, it is probably best to keep those items to a very minimum when making a transition.  If the expectation is that the staff will take very good care of a wooden cedar chest and use lemon pledge, it is not going to happen.  I have already given away special items I brought with me.  I could not stand to watch how rough or with total disregard some members of the staff treated a sewing chest from my grandfather or set of maple planters that he made by hand.  Although everyone wants to bring something from home with them, it is best to distribute treasured items ahead of time to family members or loved ones and keep what is more functional for living in one room.

4.  Investigate ahead of time what the CEO is like and how that person operates.  Does the CEO drive a very pricey Porsche, Lincoln, or a Jaguar?  Does the CEO also have very expensive SUVs or motor homes, and wealthy estates?  Is there a reason to question that type of individual’s ability to run a not-for-profit facility?   Question ethics displayed by the CEO or president presiding over a long-term care facility.  As a reader of the blog stated on July 12, 2014, “Information about these places is hard to believe.  I can’t understand why there are not more restrictions on nursing homes.  CEOs are the fat cats reaping the benefits of the patient hard earned money, and the patients get absolutely no benefit from it.  Food is awful, as well as a lot of the staff.  Boy, sickening.”

5.  Ask about the ratio of nursing aides to residents.  While one nursing aide to seven residents may be ideal, it is important to also look at the quality of nursing aide skill.  Nursing aides that are extremely overweight cannot do these jobs.  Workers in healthcare need to be physically fit.  I saw one nursing aide with upper arms that looked like two liter bottles and the rest of her was equally oversized for her small frame.  Obesity is a serious problem in the country, but makes even more difficult situations in the healthcare industry.  I am about 5’3” tall with a weight of 100 pounds.  I need help transferring from a power chair to toilet, or toilet to power chair, power chair to a lift chair, or lift chair to a power chair.  It is very difficult to safely transfer with someone who is obese.  These can be well-meaning, bighearted, caring nursing aides, but their weight presents an enormous problem to a coordinated effort and the techniques of a transfer.

6.  A nursing aide commented to me on one occasion, “I think there should be an aptitude test to do this job.”  She made a good point.  Observe whether or not nursing aides demonstrate some common sense.  For instance, does the aide just walk right by someone who is slumped over in a chair, or does she reposition the resident?  Do the aides keep a vigilant watch in dining areas?  Do they keep hallways clear of objects that may trip someone?  Do they keep up with small messes before they get bigger?  Do they put towels neatly on the towel bar, or just throw towels and blankets around the room?  Do they pay attention to the public bathrooms?  Do nursing aides look energetic and enthusiastic about their job?

7.  Question what are the turnover rates for staff?  Nursing aides have one very difficult job trying to meet the needs of individual residents.  If the nursing aide is not that smart or perceptive, then repetition becomes more important.  However, even with repetition over a two-year span, I have found that some nursing aides just plain do not get it.  This makes it extremely stressful for me and for the nursing aide.  Repeating instructions about how to make coffee, or where Tylenol is in a drawer and they need to get two 650 mg tablets, or where my laundry bag is placed in the closet, and the list goes on, is absolutely exhausting.  Unfortunately, this problem is unavoidable with turnover rates that are high, or even covering for vacations, maternity leave, or illnesses.  The important point to make is that the resident suffers.  It is even that much more confusing for dementia patients when there is a different nursing aide who has no idea what the resident needs and the resident is not able to clearly give instructions.  I have seen and heard nursing aides get very defensive when given instructions and that only complicates matters for the resident.

8.  Find out if there is a dementia floor in assisted living.  A physician told me that she recommended one of the three floors in the assisted living building where I reside be designated as a dementia floor.  For whatever reason, the CEO and/or members of the administration decided against her recommendation. 

     Dr. Kaiser is a gerontology specialist who is also an internist.  She knows her field.  The recommendation would have solved a lot of problems that occur in assisted living.  Wanderers with dementia or Alzheimer’s residents who are in this unit, create a number of problems.  A glazed look in their eyes is very telling.  They are bewildered and lost, confused, or maybe all of the aforementioned.  The problem is compounded by nursing aides, who do not fully understand, or who have not been fully trained to deal with elderly people that may have the mentality of a two-year-old.  The nursing aide has to chase these people and keep them in sight to ensure their safety.  They can disappear from a hallway very quickly.  They can try to open the stairwell doors or try to get in an elevator, and even try to leave the building.  Wanderers have come into my room in the middle of the night and scared me.  If there is not a dementia floor, how are dementia patients accommodated?  I did observe one nursing aide who had a sense of what to do with this type of person despite minimal training.  She was very enthusiastic and told this woman to, “Come over here and sit down.  We can look out the window at the cars going by.”  It worked.  This particular resident sat there smiling all morning and looking out the window.  Spend some time watching how dementia patients are treated.  Inquire about the decisions for the various levels of dementia, and where those patients reside.  Ask what determines when dementia patients are moved to the Alzheimer’s units.  Dementia patients or early Alzheimer’s patients pose very difficult problems in assisted living.  They cannot help themselves, but they do require a great deal more attention from the members of the staff.  This problem limits the time that a nursing aide can assist other residents on the floor.

9.  Ask about the length of the nursing aide shift.  A typical shift may be eight hours, but mandates mean sixteen hour shifts.  Fatigue, lack of sleep, hunger, and a host of other factors with long shifts can wear anyone down.  Nursing aides on long shifts even if it is their choice, get cranky, short tempered, irritated easily, curt or sharp with residents, and impatient.  These situations are precursors to accidents, stress for residents leading to chaos and dysfunction on the floor.

10.  Inquire about the availability of physicians.  There are no physicians on site at the Goodwill Retirement Community.  Fax, telephone time, or working through a computer slows down the transmittal of information.  Without orders from the physician, nurses may be in a very precarious position while trying to help a resident.  Try to find out if there are designated physicians for the facility, or if the resident can choose a physician outside of the facility.  Staying with a trusted physician is very important for the resident.




July, 2014