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

In December 2014, AARP reported there were 42 million caregivers taking care of their family members at home where they want to be.  Family members talked about caring for their loved ones who were in a variety of health conditions such as the fourth stages of cancer, advancing dementia or Alzheimer’s, stroke or heart attack survivors, amputees, and/or rehabilitation after surgery.  The strain on family members is significant.  One man who was interviewed talked about having been an only child and took care of his parents through the end of their lives, but he had to give up his own job and home.  He went through the money that his parents had and eventually lost their house.  He had great difficulty returning to the job market and ended up homeless.  There is no way to balance the demands of middle-age children trying to work, maintain their own families, and be the primary caregivers of their aging parents.

The numbers of people needing care keep growing.  The state of Florida has a need for 7200 more nursing beds to accommodate the elderly population.  Perhaps the needs that are market-driven will supply better facilities and care.  At least, that is the hope.  Change happens in life span development.  People change their minds.  The celebrity, Ms. Melissa Gilbert in talking about reversing her breast augmentation, said that aging is a gift not a curse.  Ms. Cherie Athey, RN, Esthetician once commented that she was getting surgery to reverse an augmentation procedure, because at her age she just wanted to hold her grandchildren closer.  Is there a gift of wisdom and values appreciation that comes with aging?

Mr. Lee Van Boven writes about how we exceedingly discount the value of memories in exchange for material items.  Life experiences make you happier.  According to Mr. Van Boven, no matter how much we accumulate in the way of things, nothing can take the place of the memories that carry us through a lifetime.  However, a lifetime can include rehabilitation after an accident or surgery, assisted living, skilled nursing, or Alzheimer’s care.  Even in these situations, the experiences of recovery, daily life with a disability, or aging should be meaningful and creating more good memories.  Oftentimes, that is not the case.

Dr. Carl G. Jung, the brilliant Swiss Psychiatrist and Psychotherapist believed that each moment has the properties of that moment.  Just a few words and there is such a profound meaning.  Long-term care life means dealing with the moment and surviving.  It may be annoyances such as the very loud voice of a nursing aide, or hearing more than a dozen times a day over a loudspeaker system “Dietary order is on the elevator” that creates so much stress for a resident.  It is almost analogous to living in a grocery store aisle.  Even with pleasant instrumental background music, there can be a resounding loudspeaker announcement, “Shirley Moss has a phone call on 501, Shirley Moss has a phone call on 501.”  In grocery stores, mood music which is a new name for elevator music, might be playing in the background and all of a sudden there is a resounding, “Clean up aisle nine, clean up aisle nine.”

Sometimes the aisles in a grocery store are very busy and that is what happens in long-term care.  There are daily chores with cleaning and vacuuming, collecting laundry at night, feeding three meals, med passes usually 8 AM and 8 PM, but also in between, along with fire drills, management concerns, family complaints, and residents moving in and out or relocating within a facility.  The business of daily living is not just a business, but chaos where nursing aides are stretched to the limit trying to assist each and every resident throughout an eight hour or sixteen hour mandated shift.  The nursing aide is the filter or gatekeeper of information about each resident.  All too often, family members make demands about how their loved one should be cared for in the facility or what should be done to help their loved one, but the family member knows very little about what actually is going on with their loved one.

Unless you live in a long-term care facility, you cannot know the difficulties for management, family members, and residents.  For management, coverage of each shift is essential.  Bad weather, power outages, flu outbreak, pregnancies and maternity leave, family medical leave and a host of other complications mean that management struggles on a daily basis to maintain a healthy atmosphere.  Poorly trained managers are not equipped to adequately address noise factors, poor quality of food, recruiting and retention of quality staff, proper placement of residents and adequate training of staff to meet the needs of those residents.

The Balancing Act:

On a daily basis, there is a crisis of some kind in long-term care.  That crisis could be something involving a transition to another unit as in assisted living to nursing, or perhaps nursing to dementia/Alzheimer’s unit.  While there are all kinds of procedures outlined in every state detailing the protocol and guidelines for placement, it comes down to the nursing aide who is working one-on-one with the resident and notices changes.  That nursing aide usually documents in progress notes what is taking place with the aging process or declining health of a resident.  The health problem may not just be physical, but mental.  Despite the fact that the national recommendation is one nursing aide for seven residents, that rarely is the case.  Units are stretched uo the very limit with as many as sixteen or more residents per nursing aide.  It is virtually impossible for any one human being to cover the floor of potential crisis situations with an elderly population.  Even though it may take time, as Mr. Bill Carpenter, retired Methodist minister recommended, it is important to plan ahead.  Mr. Carpenter had visited long-term care facilities for more than thirty years.  He pointed out that the newer facilities were more industrial and met codes, but lacked the feeling of home.  As you or your loved one move through the final stages of life, what surroundings are important?  Does an environment that resembles home precipitate a more caring attitude on the part of staff?  Try to pay attention to the relationship nursing aides have with residents, and assess the facility for its appearance, maintenance, noise, and management before leaving your loved one in their hands.

Dr. Wilbur Schramm, the noted communication expert purported that we never really stop communicating even through dementia stages, Alzheimer’s, aphasia, or removal of the larynx.  He sees communication as a spiral with the beginning point at the bottom and continuing to circle up and out around.  He maintained that through verbal sounds or nonverbal signals, we all continue to communicate.  When the communication gets to be more complicated or in some ways reverses itself to the beginning stages, observe whether or not the staff are trained to deal with declining mental faculties that confuse communication.  So often, members of staff will simply yell louder when they do not think a resident understands.  After thirty years of multiple sclerosis, I recall in the early days of starting to use a scooter and getting onto an elevator, invariably someone would turn around and yell at me, “WHAT FLOOR DO YOU WANT?”  At first, I thought it was rather humorous until the experiences became even more exaggerated.  Some people would bend down and get up to my ear to yell the same thing.  I tried to be patient, but it was more fun to yell back, “I CAN HEAR AND PRESS THE BUTTON MYSELF.”  It must be a nightmare of incoming stimuli for people who take a little more time to process or suffer from Alzheimer’s and any form of dementia.  Be sure that the members of the staff have been adequately trained to handle the confusing communication from residents who may have dementia problems or other mental problems before relocating your loved one to that facility.

Management woes are plentiful.  The demand for nursing home beds, assisted living facilities and dementia care grew so fast that there is a great need for trained, experienced managers of long-term care facilities.  Unless managers are trained in healthcare administration, psychology, and communication, they will never successfully deal with the irrational family members.

The recent outbreak is reason for consideration of policies for flu vaccinations at long-term care facilities.  

One Voice:

On CNN, in an interview on March 18, 2014 with Ms. Rebecca Angel Baer, the country artist, Mr. Clint Black speaks up to help those suffering from an inability to communicate verbally.  These people have Rett Syndrome which is a disorder of the nervous system that leads to developmental reversals especially in the area of expressive language and hand use.  Mr. Black is devoted to raising his voice for people who cannot speak.  “I think the human knee-jerk reaction is to look away.  It’s really hard to see the families and how hard they fight.  The more I realize we can’t look away.”

Mr. Black gave more details about the way he feels.  "I tell myself when I'm looking at these children that these are the divine among us.  They’re the ones that have been given the hardest paths.  And so I feel like it's a real privilege for me to come in contact with them.  That’s how I deal with it emotionally.  I remember seeing an interview with someone a long time ago who had a near-death experience, and said she had been visited by angels.  She was told that those with the hardest paths are the most divine.   So that stuck with me.  When I'm meeting a family who's really suffering with this problem and see the child, that's the perspective I choose to have."

The reporter explained that Mr. Black’s voice and support has drawn attention to the heartbreaking condition of Rett Syndrome that lacks funding for research.  Whether young or old and unable to speak or express oneself adequately through verbal or nonverbal communication, there are ways to help those people who cannot speak for themselves and bring about change to improve the situation for residents living in long-term care.  It begins with just one -- your voice.

Questions for Consideration:

1.  When visiting a facility, inquire about the messaging system and its reliability.  If the prevalent attitude is one of “if they really need me they will page me,” then there is probably not a good system of communicating among members of the staff.  This becomes incredibly important in times of crisis.  If a resident falls and the nursing aide needs additional help, she may call a nursing aide on another floor, but that aide on another floor may just be waiting for paging over the speaker system.  When every second counts in helping another human being who has fallen or is in cardiac arrest, or a problem of any kind, the speed of clear communication is of utmost importance.

2.  Rural America has a set of problems all its own with the digital divide.  A digital divide simply means that there are those who have Internet connections and those who do not.  There are frequent Internet disconnects at Goodwill Retirement Community.  In addressing the problem with the CEO, Kevin Miller, he responded by saying that every Internet disconnect provided a learning experience.  Try to ascertain how valued the Internet connection is for residents.  Is the best Internet service for members of the staff, but not residents?  If Wi-Fi is installed at the facility, how reliable is it?

3.  Meet with management at all levels before ever moving a loved one into a long-term care facility.  Most of the people in long-term care facility administration are mismatched.  Often times, people who left a previous job in healthcare such as nursing, appear in a variety of other positions.  Can an LPN be a bookkeeper without any bookkeeping or accounting training?  Is someone with a Masters in Business Administration really qualified to run a long-term care facility?  It may take a little more time, but getting an idea of what management is like at all levels may prevent future problems in communication and delivery of services when there are changes in the adult lifespan.




January, 2015