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

Dr. J. Gary Sparks, Jungian Analyst

Every 67 seconds in the United State someone is diagnosed with Alzheimer’s according to the Alzheimer’s Association.  One in six women and one in eleven men suffer from some form of dementia.  May 2014, it was reported on NPR, Sound Medicine that $3 trillion are spent on healthcare in the United States, yet United States is not the leader of healthcare in the world.  There are terms such as, “Silver Tsunami,” or “Senior Citizens” to describe the elderly or golden year generations in need of nursing or assisted living facilities.  However there are people of all ages in need of assisted living or skilled nursing.  Strokes, heart attacks, and diseases strike at any age.

Scandinavian countries have a better approach to keeping people in their own homes.  They developed areas in towns to accommodate the problems of dementia.  They answered the problem that America fails to realize.  So many continual care facilities in America are built at a distance from any town, or city.  The whole process of dealing with aging or any disease is frightening.  What makes it worse in the United States is the number of facilities that are located in isolated areas making visitation of family members and friends even more difficult.  The end result of greater isolation is faster decline of any resident.

 Ms. Maryann Scott, an investigating Metropolitan Life nurse states, “These places all have the big façade, but they are all alike.”  Dr. Gerald Thompkins March 18, 2014 wrote, “Most families who have loved ones who can no longer be cared for at home or who cannot live on their own, are relying more and more on assisted living facilities.  And most are ignorant when it comes to the stark reality of extended healthcare facilities.  These families are desperate and only look at the exterior facade of what they considered to be a warm and caring environment, a home away from home.  I know firsthand the terrible living conditions, the benign neglect and abuse that take place in these dens of death. There are profit-making motives behind these healthcare prisons.”

 Ms. Jean Tyler March 16, 2014 wrote, “My mother's assisted living was about as good as you would be able to get, but the nursing home experiences were terrible.  Dad was on dialysis and one night I walked in his room and they were feeding him hot dogs on a salt free diet.  Another time they forgot to send a transport to the hospital where he had to go for dialysis and Mom and I went and picked the poor darling up after we did not find him in his room at the nursing home. It broke my heart to see him sitting there.  The urine odor was enough to take your breath away.  We had to put him there because, at least at that time, very few nursing homes even offer transportation to dialysis centers. The room had three beds in it and we had to buy a small television so he would have some entertainment.  Another nursing home where my Mom was recuperating from an operation had her records all mixed up and my brother’s wife, a nurse, eventually straightened them out so they could continue her rehab.  The nursing home where Mom passed away was a real dump but you have to take what is available.  So sad.”

Reverend William Carpenter is a retired United Methodist minister and visited a wide variety of hospitals, nursing homes and assisted living facilities for forty years.  “The first time I visited a facility in the early 1970s, the family was very content with the living arrangements and programs that were available.  However, en route to and from my visit with that family over several years I would hear other residents complaining about all types of issues.  I would hear complaints about the food, complaints about not being able to use the laundry room when they wanted to use it, complaints about the provided transportation being tardy, etc.  I quickly realized that expectation has a lot to do with satisfaction, especially when one starts losing control of the life they have been accustomed to living.

The first time I took an immediate family member to visit my parents in an assisted living facility they were horrified.  This family member had been very successful professionally and lived a very comfortable lifestyle.  I found myself counseling this person because his expectations were tremendously disproportionate to what my parents could realistically afford.  Truth-be-told, this facility had wonderful services and programs, but it was housed in an older building.  It was clean, but old.  Several other people visited my parents and were not impressed with their living arrangement.  Each time I would ask the visitors, ‘Have you ever been in an assisted living facility or nursing home?’  Most had not.  Again, personal expectation was biasing an objective assessment by these friends and family members.  (I have been in many new, state-of-the-art super facilities, that are cold and sterile and lack the warmth and inter-personal feel that my Parents experienced in their temporary home.)

Over the years assisted living facilities have become more common and a competition has evolved for attracting residents.  Some of the campuses are nicer than I expected.  Of course, residents pay for those upgraded amenities and luxuries.  I also noticed an increasing concern about the litigious environment in the various settings and the personalities of the directors and respective staff persons invariably reflected those concerns.  There appeared to be a continuum from those administrators/staff who were true caregivers to the extreme bureaucrats who were by-the-book managers. Ideally, an administrator would have a perfect balance between those two characteristics.  Most of us as human beings, I strongly believe, do not strike a perfect balance anywhere.  As the legal issues, including ever-increasing governmental regulations, continue to evolve, so do the cautious concerns of administrators, staff persons, and even caregivers.  I believe that many settings have seriously compromised personal caregiving in order to simply avoid law suits.

My wife and I have started exploring assisted living facilities.  There are wonderful places and wonderful people working in some of those places.  We just need to find them.  I think that is everyone’s goal, given the parameters of cost and desired location.  Many aging or health challenged people I know make a comfortable and acceptable transition into the world of assisted living within weeks.  Some friends recently moved into a setting in Cape Girardeau, Missouri, and brag about the place.  They even compliment the regular menu and the quality of the food provided at the facility.  Another couple retired to an older campus in Jacksonville, Florida, and gleefully report that, “It is like being in college for senior citizens.” I do not know if their opinion is the exception or the rule.

I have observed a continuum of transitional reactions among various people that extends from those who easily adjust to those terribly negative individuals who criticize virtually everything in their new environment.  It is often difficult to discern what is truly an issue that needs to be addressed and what is primarily vented frustration. The reactions of various individuals, to a large degree, are frequently based on just the personality and temperament of the individual resident(s).  Attitude matters a great deal.  Some people are able to make the best out of virtually any kind of situation or circumstance. Some people are malcontents even in a palatial, care-free setting.  There is always some level of trauma with major change. Moving from one’s home is traumatic.  Making major adjustments of any kind has elements of trauma.  Gradually, or in some cases suddenly, losing control of one’s life is trauma.  All of these may shadow a person’s transition into assisted living or nursing home care. That being said, I offer three suggestions:

1.  Do your homework.  I hope this is self-explanatory.  Plan ahead as much as possible. My wife and I just entered our mid-sixties, but we are evaluating budgets, visiting different facilities in different locations, and assessing where certain amenities and quality health care will be relative to convenience for us.  We do not look forward to the transition with excitement, but we anticipate it and are planning for it.  There are a lot of excellent planning resources available through federal and state offices and many privately owned corporations will provide assistance to help people make a more-informed (and wise) decision.

2.  Get an advocate.  One of the facilities my mother lived in was such a concern for me that I felt I needed to be there 24/7.  I worked full time and had a family. There was not good communication with my mother, partly because some the members of the staff were not aware or were not sensitive to her impaired hearing.  Her mind was sharp.  I really needed to be present for every conversation and that was impossible. She moved to a church-related facility and the situation changed dramatically. The social worker on that campus was extraordinary.   She even served as an active liaison for my mother to the staff there and to me.  She helped me address issues as soon as any arose.  I do not know if I could have ever even hoped for better.  One of my best friends from college and seminary is a chaplain for a large facility with a continuum of care in Alabama.  He had been with that corporation for 28 years.  I called him and shared these thoughts with him.  He said, ‘Everyone is my client . . . the residents, the family members, and the staff.  I am here to serve everyone.’  This social worker and my friend, the chaplain, illustrate that there are advocates to be found even if someone does not have a family member or close friend for support.

3.  Remember that attitude counts.  A friend told me that he meets with all potential residents when they visit the facility and tells them to get the attitude that they are going to enjoy living here.  Some people come in with unfair expectations and their expectations are greater than can reasonably be met.  We agreed that attitude is a critical part of successful transition into different levels of assistance in care.

 Ms. Tina Anderson wrote on March 17, 2014, that, “Everyone in these facilities needs a place they can call their home.  After working in administration for a top rated rehab/nursing home, I can honestly say that I have seen both sides.  There are wonderful caregivers and ones who could care less.  At the pay the nursing assistants receive, it is so hard to find caring nurturing staff.  I believe that if a person doesn’t like the job at a medical facility, find a job someplace else.”

 Mr. Garth Clark wrote on March 13, 2014, “I find myself more aware of the staff each time I visit a friend in an Emeritus Facility near Baltimore.  As my friend’s needs become more critical, I observe shortcomings in the ability and interest of the staff to address them.  I feel the need to be more vigilant.”


On May 14, 2014,  Mr. David Cravey stated that, “I spent the last eight years working with a hospice organization in North Florida.  I know which ones I would send my enemies to.  I’m trying to spread the message of a broken system.  Thinking of the lack of care my mother received within a rehab system always brings back a flood of memories and anger.”

Ms. Valerie Weeks March 13, 2014 commented, “No one knows what to look for in these facilities unless they have actually been a resident or had a family member in one.  Very sad that so much needs to be checked out before becoming a resident.  I think it's awful that people living out their golden years or however many years they have left are treated and cared for so poorly.”

Nurse Surveyor,  Ms. Jennifer Riberkof explained why residents may receive such poor care.  In an interview December 2013, she glibly talked about incompetent members of the staff in assisted living and nursing facilities in Maryland.  She stated, “Sometimes it takes family members complaining and a long time to get someone fired.”

March 2014, Dr. J. Gary Sparks, Jungian Analyst and in the picture above  right, wrote about his difficulties in trying to get a nurse to answer his phone call.  His mother had been placed in a nursing/rehab facility in Lancaster, Pennsylvania following a diagnosis in the hospital of congenital heart failure.  He resides in Indianapolis, Indiana.  He wrote of his personal anguish in trying to get one person to answer a phone call and describe his mother’s condition.

During November 2017, Dr J. Gary Sparks added, "Calls from me to the home were never returned.  Not once.  Her food was bland and often cold.  Her room was unspeakably hot.  Her doctor ordered a heart monitor for her and she never got it, not during her six-week stay.  Mercifully her physical therapy—administered by a group separate from and contracted by the nursing home—was thoughtful, competent, and healing.  My mother’s weakness after her collapse made it difficult for her to get out of bed.  The nursing home staff couldn’t be bothered to help her out of bed in the morning.  The rehab staff had to do it.  And don’t tell me the nurses were overworked.  Each week or so when I was able to travel back the thousand miles to my hometown from where I work and live, I would walk into the home and to my mother’s room, passing the nursing station of two or three nurses happily chatting.

Less than a year ago my mother collapsed, again, with the same weak heart, and she broke three ribs.  Her hospital stay was characterized by kind staff and communicative doctors.  Ohmygod, the food was even good.  Then came the transfer to rehab in supposedly one of the best homes in the county.  Ha!  She was ninety-nine, in pain, weakened by the fall.  Despite my warnings, the rehab staff insisted she be on her feet and completing a strenuous series of rehab sessions—from day one.  (In contrast, the previous rehab therapists took a week getting her strong enough to get out of bed.)  The reckless insistence that she complete exercises simply beyond her injured ninety-nine-year-old strength sent her into despair and panic.  I was told she was “uncooperative!”  Then I was told she wasn’t urinating and this indicated kidney failure.  It was close to the end, they admonished.  I immediately recalled her doctor had told me just a few hours previous that her kidney functions were fine.  “How much liquid has she been drinking?” I asked.  “We don’t know,” was the response.  “Do you think her input of liquids could have anything to do with her output of liquids?” I asked.  “Hmm, we don’t know,” was the answer.  I soon realized they were, in essence, trying to kill her.  Not intentionally, of course, but with silent malice.

So I had her transferred to another—supposedly—Five Star home and rehab center.  When we arrived and she was settled in her room, her roommate started cursing us and screaming that we had to get out of the room.  She was Queen of the room and we would be damned if we didn’t leave, we were told in no uncertain terms.  Her roommate, it was clear, was an Alzheimer’s patient.

More arguing on my part got her another room.  That was just before a nurse came into the room and started blurting loudly about Hospice, and before my mother was ready to process the eventuality of her death.  Another argument on my part to ask said nurse if she ever considered gauging what she blurts out upon what a patient is ready to hear.  By now my mother was in full fear mode.

As her condition weakened, I had to argue continually to get her properly sedated.  Her heart was failing and breathing was more and more labored.  Each time, I was greeted with “Oh, we’ll be there in just a minute.”  Minutes turned into hours, many hours, while my mother was crying out, “I’m so miserable, somebody please help me.”  Finally I was able to get her sedation medication adjusted properly, only to find out from a nurse whose shift started at 6 am that the was not being administered as per the prescription.  The nurse could hear my mother crying out for help as the nurse entered from the cafeteria for her morning and afternoon shift.  I had to create real havoc to address the issue.  That’s when I found out that the facility had only two part-time on-call physicians for well over two hundred patients.

Finally it was clear my mother was dying.  I called in Hospice, the only really positive experience in this entire drama of death-by-insult.  I related my frustration with my mother’s care.  The Hospice nurse said, “This is the way these places are, and you are in one of the better ones.”  The Hospice nurse listened to my mother’s heart and told me that my mother would probably die that night.  I recalled that the day nurse had told me a cot could be made up for me to be in my mother’s room when she died.  I watched her condition get worse and realized the Hospice nurse was right.  So I requested from the night nurse the cot I was promised.  “What?  We don’t have any cots,” she snarled.  I erupted.  “Get me a f__king cot and get it now.   The result?   The maintenance staff brought in an Archie Bunker style lounge chair so filthy that I refused to sleep in it. 

My mother died that night while I slept on the floor next to her.  The final indignity."

Why do these situations exist?  Is it the changing landscape of our society?  Is there a lack of good management in healthcare facilities?  Can something more be done?  The stories included in this blog are real.  Good people trying to do the best for the members of their family, who may need care beyond what a family member can provide, rely on what is available in continual care retirement communities.  Those communities frequently take people from independent living in cottages or small homes and apartments to assisted living, then skilled nursing or dementia units and/or hospice.

Much can happen during those transitions.  Management is an even bigger problem with lack of training and interpersonal skills required in an environment filled with outdated policies and procedures.  Something must be done to provide greater care!

November, 2017