A Daughter’s Promise

A Daughter’s Promise – Taking Care of Mom in the 21^st Century

by JacLynn Herron

            In 2000, on the March evening of what turned out to be the last day of my father’s life, I reassured this gentle man of almost 82 years that, “no matter what,” I would take care of the love of his life, my mother. Dad died in a sub-acute unit of a nursing home less than 36 hours after his release from the hospital.  Shortly after Dad’s passing, I began to discover the gravity of my commitment.

After Dad’s memorial service, Mom, now alone for the first time in 59 years, returned to the apartment that she and Dad had shared for three years. Located in a beautiful assisted living complex, it had become a wonderful senior living alternative when Dad’s physical condition weakened and he needed more assistance than my mother could provide in their townhome. Importantly, the move to this one-bedroom apartment established them in a “continuum of care” system. I had been assured that other alternate living arrangements within this reputable care system would become available if their health deteriorated.

In the days following Dad’s passing, I sorted through his belongings as Mom quietly puttered around the apartment. The emotional trauma of the last few weeks had taken a toll on Mom, and I yearned to blame her detached demeanor on grief rather than the insidious signs of increasing dementia. But as the weeks grew into months, it became undeniably clear that without Dad’s assistance, Mom was becoming hopelessly lost in a confusing world.  I was conscious of the promise I had made to my father, and I reached out for help.

The conscientious staff at Mom’s assisted living facility responded by stepping up her care and by monitoring her wanderings via the hall cameras. Eight months after Dad’s passing, a campus administrator asked if I would like to consider moving Mom to the memory care facility next door. Connected by tunnel to the assisted living building, this building was specifically designed for people like my mother. I toured this one-story, state-of-the-art facility and quickly agreed to move her.  Her new environment was perfect.  She resided in her own studio apartment but shared comfortable dining and living room space with seven other residents in one wing of the building.    In this family-like atmosphere residents enjoyed each other’s company throughout the day. Well-trained staff impressed me with their dedication, skill, patience and concern. I would drop in and find the residents laughing and sharing stories outside in the secure courtyard on a summer’s evening, or enjoying popcorn and a movie in the living room. Nursing assistants directed these activities, monitored the residents and assisted them with a myriad of care needs.   Part-time nurses knew each resident and his/her particular needs. Thanks to the caring staff, residents maintained their dignity as their cognitive abilities diminished.  Mom transitioned very easily into her new home, and I settled into the peace of knowing that as her memory faded she would be surrounded by compassionate caregivers. I felt that this step in her continuum of care had been a positive one, and I knew that Dad was smiling down.

Four months after moving into her new home Mom fell, breaking her shoulder and blackening her eye. After this incident she became increasingly unsteady. Four months later she deteriorated even further due to significant strokes, only this time she mentally retreated from the world as well. Her weight alarmingly dropped to under 80 pounds. The administration informed me that under normal circumstances, Mom, now wheelchair-confined, would be asked to move to the nursing home, the last stop in the continuum of care.  But since she had no acute need for round-the-clock skilled nursing care, it was agreed that she could remain in her “home” for what appeared to be the last few weeks of her life.

I mentally prepared to lose my mother. I called her sisters from other parts of the U.S, and encouraged them to visit one more time. They arrived, and three days into their visit Mom perked up.  She uttered her first words since the latest stroke and seemed interested in food once again. But she was totally unable to negotiate a forkful of food from her plate to her mouth. Staff assisted her at mealtimes, and slowly she became stronger.

I began a nightly ritual of visiting Mom at suppertime and assisting her with her meal. During dinner I often chatted with nursing assistants who sat down at the table to help one of Mom’s tablemates. It didn’t take long to realize that if there was a blessing resulting from my mother’s debilitating illness, perhaps it was the insight I gained from dinnertime conversations with the young women and men working as nursing assistants. Many were immigrants, well educated in their homelands, hardworking and compassionate. They shared incredible stories of life in Africa and courageous trips to America in search of education and work.  Many also attended colleges for degrees ranging from nursing to law enforcement. Mom responded to their compassionate care, and she and her family developed close friendships with many staff members.

After a few months, dreaded news was delivered at a care conference. Although Mom had improved and death was no longer imminent (the good news) she had also reached a plateau and was not likely to improve any further (the bad news). Mom was now a candidate for the next and last step in the continuum of care, and her name was placed on the waiting list for the nursing home.

After the care conference, I located Mom, sitting in her wheelchair in her living room. I watched her, verbal skills almost gone, interacting through smiles and laughter with the other ladies. I was saddened by the thought that these relationships would end with a phone call. When a room in the nursing home opened and the call came, the family was able to negotiate a temporary stay by paying for additional staffing at the memory care facility. Four months later, concerned about precedent setting, Corporate discontinued this option when Mom’s name arrived at the top of the nursing home waiting list a second time. Sadly, after fifteen months in this wonderful, resident-centered environment, Mom was moving.

I felt a bit like Dorothy entering the world of Oz when I toured the nursing home to pick out a room for Mom. A message left on my answering machine informed me that I had less than 24 hours to make a decision, so the next morning I followed an admissions staff person around as she proudly pointed out the amenities of the first floor commons area. The lounge area, patio with gardens, gift shop and ice cream parlor provided a quiet ambiance. But the atmosphere quickly changed as we ascended by elevator to upper floors where residents lived. We meandered down long cluttered halls and around rolling carts containing residents’ records. My guide stopped to reprimand a nurse for leaving an important room unlocked, and the nurse replied defensively. I’m not sure what made me more uncomfortable, this exchange or the sight of three residents sitting in their wheelchairs, lined up in the hall like train cars on a track. Where was the “home” in this nursing home, I wondered. The floor housed sixty residents. Several were sitting in wheelchairs in the dayroom, staring at the back of the wheelchair of the resident in front of them or the TV at the end of the room. Some were sleeping; one lady was screaming, “Help me, help me!” as unconcerned staff members passed her by. Embarrassed, my guide spoke to the resident and assured her that someone would be helping her soon. I was skeptical.

I knew I wasn’t in Oz, but I definitely felt like I wasn’t in present time either. Had I stepped back… two, three decades? Hadn’t nursing homes changed since my grandmother’s experience in the 80’s? But this was the “Cadillac” of nursing homes I was told, so I hoped my tour had been an anomaly. What wasn’t an anomaly was the pressure to move my mother in on Thursday and it was now Tuesday. I pleaded for an extension over the weekend so I could gather family assistance but was told extra time was impossible. It became apparent that financial reasoning was driving this decision. We finally compromised on Friday, and on August 2, 2002, my husband and I moved Mom into her room at the end of the hall. She had exchanged a studio apartment for a single room, a “home” for an institution, all for a price tag of over $72,000 per year.

Back at the memory care facility an administrator reduced some of the pressure by assuring me that the most important use of my time was to help Mom with her transition. Removal of the remaining furniture and possessions from Mom’s former apartment was accomplished under a less stringent deadline. Within a few days family members helped me pack up and move Mom’s treasures, the ones that had not followed her to the nursing home because of space or security concerns. “Resident-centered” clearly had been the adjective for this memory care facility.  Sadly, I said goodbye to staff members and closed this very positive chapter in Mom’s continuum of care.

It quickly became apparent that my role as Mom’s advocate would take on a whole new dimension as I moved her from a resident-centered environment to a floor with 60 residents. Even though I was told that the rationale for moving Mom to the nursing home was to provide for her extra needs, the family quickly realized that instead of more care, she was actually receiving less than was common practice a week earlier at her memory care facility.  Just who/what was benefiting from this move?  It certainly hadn’t been Mom.

Dressing and feeding Mom were now huge issues. Within the first week of Mom’s arrival, her designated a.m. aide complained to the family that dressing Mom took too much time in the morning. The aide explained that she had ten other residents to get up and ready for breakfast.

Since many residents on Mom’s floor needed assistance with feeding, understaffing was a long-term issue in the dining room as well, especially on the weekends when Monday-Friday staffers didn’t report. Long waits, rushed meals and tepid food often resulted. Month after month, administrators asked families to be patient while they worked on staffing inadequacies.

Inadequate funding is generally offered as the reason for staffing problems. So where does Mom’s $72,000/year go? In my imagination it drops into a black hole, since it never seems to come back to ensure her care. Perhaps I would feel that the money was well spent if Mom’s condition necessitated acute care by skilled nursing staff. She requires no treatment relating to chemotherapy, dialysis, diabetes, or internal bleeding, all of which require skilled nursing care on a very regular basis. Yet because Mom suffers from right side paralysis due to strokes, her case mix classification of CC1 clumps her together with residents with these conditions, and she is charged the same daily rate. Mom’s care needs involve total help with her activities of daily living. Although very labor-intensive, these needs are generally taken care of by nursing assistants, not nurses. The nurses’ responsibilities take on a new role for Mom. Instead of providing direct nursing care, nurses are responsible for supervising the aides in their adherence to the directives spelled out in Mom’s care plan.  So, I am especially disheartened when I see nurses walking right past Mom when she is poorly positioned in her wheelchair. Is this obliviousness due to overwork, understaffing, insensitivity or all three? On the priority list of nursing responsibilities, supervision of Mom appears to rank quite low until a urinary tract infection develops. Sadly, this repeated condition often directly correlates with the quality of care she receives.

I had been told that it was a “corporate” decision to move Mom from a small community of eight at her memory care facility to this floor of 60 residents. Now I question what Corporate is doing to ensure that she is receiving the care for which she is paying. I think of Dad and how he worked and saved to provide for Mom’s care even after his death. He sought quality in every purchase that he made. I look around at the quality of this $72,000/year purchase that I have chosen for Mom, and I apologize silently to Dad.

After a few months of daily visits, I became aware that State requirements and the ensuing paperwork, as well as State survey results, appear to drive the system. In some ways the State’s presence is reassuring. I see the State as my ally, set up to advocate for all the residents, including Mom. When the “surprise” state visits occur, I go home at night assured that during the few days that the State is inspecting Mom’s floor, residents will all be fed completely and unhurriedly, and care plans will be followed to the letter.  I have noticed that once state inspectors enter the building, news of the arrival spreads quickly and loyal staffers appear from every office to assist in any way possible.  And miraculously, weekends and evenings become adequately staffed with the help of Monday-Friday daytime staff. The spirit of cooperation is refreshing. But I’m left with this question: Shouldn’t the administration take the ethical high road and carry on with business as usual during these inspections, making survey results an honest evaluation?

Next month marks Mom’s third anniversary of her relocation to this final destination in her continuum of care. Over this time, Mom’s day-to-day care has improved in some regards. Repeated issues regarding dressing and repositioning have finally lessened, especially on the days when skilled aides are assigned to her care. Nurses new to the care center have arrived with fresh eyes and sensitivity to see what was often overlooked before their arrival. Occupational therapists have worked hard to retrofit Mom’s wheelchair. It now keeps her upright (if she is placed in it correctly). The kitchen staff prepares delicious comfort food, dishes popular with the elderly population. A receptionist, custodian, dietary worker, recreational therapist and laundress are living examples of people trying to return the feeling of “home” to the residents by compassionate acts or kind words.

I have learned a great deal over these three years. I have learned that within the institutional setting there are many wonderful, caring staff members whom I will hold in my heart until the day that I die. These are the staff members who have not allowed the high resident-to-staff ratios to diminish the care that they deliver with compassion. These are the people who understand that within my mother’s stroke-disabled body lives a person deserving of tender handling. These are people who fight along with me for her dignity, those willing to take the extra minutes it takes to dress her properly without bruising, to feed her compassionately, to talk to her without condescension.

I have learned that Mom shares a floor with many incredible residents who overflow with wisdom, life experiences and more humor than one would think possible under their conditions. And they, like Mom, deserve nothing less than compassion, dignity and respect during the final chapter of their lives.

Unfortunately, I have also learned that sensitive, compassionate interaction is not necessarily the norm in an institutional setting where sheer numbers, crowded conditions and mounds of paperwork create a place where “institution-centered” replaces the adjective of “resident-centered.”

There have been other difficult lessons as well.

I have learned that I need to strongly advocate for Mom, because if not me, who? I weigh the tag of “troublemaker,” plus the fear of retribution, against the improved care that Mom might receive if I report deviations from her care plan. I try not to resent the fact that overworked nurses put me in this predicament by not spotting these deficiencies before me.

I have learned that I can’t confidently walk away and assume that Mom is safe and secure. At group meetings I listen to families’ repeated frustrations that call buttons are not answered punctually, and I worry that Mom will be overlooked because she isn’t able to depress a call button at all. Who is advocating for those that cannot speak or move, for those who are most vulnerable?

I have learned that the true measure of a nursing home has little to do with the main floor common areas and gardens.  As nice as these may be, many residents have little opportunity to enjoy them. The true home for each resident is the floor on which he/she resides. Whisking a loved one off the floor for an ice cream at the parlor downstairs is a great family activity, but a more accurate glimpse into his/her lifestyle can only occur upstairs.

From Mom’s situation, I have also learned that the reputation of an institution is only as good as its least accountable employee. For example, no matter how lofty the principles and ideals in an institution’s mission statement, if a staff member lacks the skill, strength or commitment to follow the resident’s care plan, the institution’s promise to provide quality care falls short. A resident shouldn’t be asked to endure months of an unhealthy situation until staffing adjustments are made.

I have learned that an institution is too big when staff members do not know each other. Mom’s family and friends have appreciated staff members who have taken the time to introduce themselves to us when they don’t know us. However, we also have been dismayed when some of us have been greeted rudely with barked orders when assumptions were made that we worked on the floor. This experience gave us insights into the undercurrent of tension between those giving and those receiving orders.

While dealing with the issue of “missing items,” I have learned that the timeliness and thoroughness of the administration’s response directly affect feelings of safety and security. At meetings with administrators I listen for signs that a willingness to openly address security issues is as important as protection of the institution’s reputation. But I do not always go away comforted, and I am disappointed by the administration’s slow response to my written concerns about safety.

I seek open and honest communication, yet the clinical coordinator has informed me that some families don’t want to know the “bad” that goes on. It scares them, I’m told. I am dismayed when fear is allowed to dictate protocol for communication with families. I refuse to let the fear of knowing the “bad” govern my request for information, so I visit often, ask questions and expect open, honest and timely communication to be the standard.

I have learned that administering to the needs of sixty residents on one floor must be a monumental task especially when state funding limits staff hiring, and overwork affects staff retention. Five different people have held the clinical coordinator’s job during Mom’s three years on the floor. All have worked very hard to provide a safe and healthy environment for all residents. But continuity of care is difficult when the person at the helm is constantly changing.  And, at the other end of the spectrum, with each new nursing assistant, time must be spent on a new learning curve.

As I examine Mom’s last three years, I focus the following questions not at the people in the trenches, those working closest with Mom. I direct them up the ladder, to administrators on the floor, in the care center and especially in the boardroom of the corporation.

Shouldn’t the last facility within a continuum of care model be held to the same standards as earlier ones? Mom, who moved smoothly through the assisted living and memory care facilities, now travels a path filled with potholes. And the Cadillac of nursing homes provides a bumpy ride.

When will the nursing home model be updated to accommodate the increasing needs of the average resident? Have nursing homes, rated top notch in the 80s and early 90s, been caught resting on their laurels while boards of directors have focused much needed attention on earlier steps in the continuum of care? Now with assisted living and memory care facilities available, residents arriving at the nursing home doors require more care than ever before, and certainly deserve nothing less than the care that they had received in their previous locations. These new assisted living and memory care facilities have raised the bar by redefining “quality care” making the present nursing home model antiquated in comparison.

Where is the technology that could ease the paperwork, provide security and promote communication?  This technology is routinely found in schools, offices and homes. Shouldn’t it be found in nursing homes as well?

Don’t people in the final years of their lives deserve continued high-quality care in a healing environment, not just a physical space? Isn’t it time to invest in a resident care model that looks and feels less like a mini-hospital and more like a home? In actuality, do the most vulnerable residents benefit physically, mentally, emotionally, socially and spiritually on a floor with fifty-nine other residents?

Mother’s nursing home has entered a remodel/construction phase. Space is being added to each of the four floors. As plans are discussed, I listen closely for improvements that will not only raise the standards but also bring the word “home” back into her living arrangement. I look for improvements that will help people like my mother, who need little skilled nursing care, but lots of compassion, conversation and community, those quality-of-life pieces that were abundant in the memory care facility one step earlier on her continuum of care. She and many others like her, who are experiencing the last years of their lives, deserve the dignity found not only in the mission statement of the institution, but in the reality of day-to-day living as well.

Mom continues to decline in health. Her dementia has led her and her family on a journey that none of us wanted to take, through a care system inspired by the best of intentions, brilliant in the beginning but grievous as we near the end. We don’t know when that end will come, but in the meantime, I’ll remember my promise to Dad and travel alongside Mom throughout her journey.

And I’ll share her story with those whose decisions impact elder care.

Update: Beginning in October 2005, Mom’s life was greatly enhanced by additional care offered by an independent hospice program.  The hospice team enveloped Mom with music, healing touch, companionship, skilled nursing, and spiritual support. They advocated for Mom at care conferences and partnered with the care center staff. Thanks to their support I fulfilled my promise to Dad.

Family members and friends kept vigil for six days until Mom peacefully passed away on Monday, March 6, 2006.

Noteworthy:  On Mom’s last night on earth, a Sunday, no nurse was assigned to her floor of 60 residents. In case of emergency I was instructed to contact the highest ranking person on the floor, a TMA, who would communicate via walky-talky to the nurse supervisor in the adjacent assisted living building.  Rumors abounded that strong staffing had been planned for the next morning, however, because a “surprise” state visit was expected.  The State surprised the care center by coming one week later.