by: Michele Ochsner, Ph.D., Co-director Occupational Training & Education Consortium, Rutgers Univ. –
About a dozen years ago I realized that my parents’ confusion and forgetfulness was probably the beginning of dementia. The realization was delayed by the long distance that separated us and my relatively brief visits home to the Mississippi Gulf Coast. After a period of hiring caregivers that might allow them to stay in their home, I realized it simply wasn’t possible to keep them safe. My still strong, independent eighty year old father would decide to pay a bill on foot—undertaking a five mile walk into town in 98 degree weather–followed by my much frailer, nearly blind mother and their small dog Minnie. Neighbors would find this sadly comic trio walking along busy roads and with no small amount of difficulty, persuade them into their cars for the ride home. Caregivers were fired or simply unable to keep up. Miraculously my parents survived half a dozen or more misadventures that could have led to tragedy. Continue reading
Recently divorced with two pre-adolescents and working full-time, I knew that I could not provide the care they needed. I wasn’t familiar with the term person-centered care at that point—but I knew I wanted to find a place near my home where my parents could make friends, find and offer affection and make a new home. My parents were simply the kindest people I’ve ever known—and I was sure that we would forge a new family that included caregivers who could keep my parents safe.
From 2001 – 2004, my parents lived in what was generally believed to be the best dementia care unit within a 30 mile radius of my home in Princeton NJ. I loved the non-profit facility’s principles of dignity, autonomy, and respect—my parents were free to walk anywhere and would be gently guided back into the building. But the facility provided little in the way of meaningful activities. Nor did the staff seem to engage with the residents. My father used his autonomy to pack his pillowcase daily for return walk home to Mississippi—and my mother was equally determined to leave. In numerous conversations, the unit director and nursing staff explained that my parents’ unhappiness and troubled behavior –to me the result of loneliness and a lack of engagement–was simply a symptom of their dementia.
In 2004 a continuing care retirement community with a dementia unit opened a few miles from my house, and my parents were among the first to move in—for a few weeks at least the staff may have outnumbered the residents. The staff were excited about the new facility and unit and determined to create a good environment for the residents. For the first time since I had moved my parents from their own home, my parents became Doris and Bob, people with dementia—but more importantly, people, who could be enjoyed and known. My dad rediscovered his sense of humor—words were beginning to fail him—but a wink, a military salute or a quick hug connected him to the aides and nurses. The staff loved my mom’s southern accent and the mixture of affection, irony and pride she exhibited toward her husband of more than 50 years. My parents were no longer able to tell their own stories, so I told the stories of my parents’ lives —and helped build the web of connections among nurses and caregivers. When I eventually remarried, the ceremony was held in the dementia unit decorated for the occasion with white satin bows and flowers—among new family and friends. In the face of many losses—we had all found new connections, hope and humor.
My dad was lucky to make this small, caring place his home for four years. A little more than a year after the move, my mom fell and broke her hip. Facility policy required that she move upstairs to the nursing home. But until she was very frail—she would come down to sit in the common room near my dad. At this point she had to share him with nearly half a dozen nurses and aides and activities staff who he loved, helped, and sometimes tried to protect when a frustrated resident became aggressive. And he developed relationships with other residents—with whom he sometimes strolled the halls hand-in-hand—having conversations whose words were hard to interpret but whose affection was unmistakable.
Given the freedom to be themselves, many of the residents seemed to decline slowly here. Problems arose on a fairly regular basis—residents became frustrated, families shared annoyances, staff were often spread too thin and not all staff engaged with residents; formal activities were sometimes uninspired…but there was still a sense of community forged by shared jokes, arguments, and small victories.
My mother had a series of strokes that left her paralyzed on one side–but upstairs in the nursing home she developed a close relationship with an aide who cared for her tenderly. Downstairs, my father continued to heal—leaving his room in the morning with arms outspread to embrace the aides who had become like daughters.
In the face of recurrent bacterial pneumonia due to a weakened swallowing reflex, my father who had struggled so hard against a loss of control, relaxed even in the strange environs of the hospital, lighting up when I visited and taking me in his arms to croon a melody. He was discharged from the hospital and spent his final 72 hours at home in his unit—eventually unaware of the procession of aides and nurses who entered his room to touch him lightly and say good bye and who comforted me and my husband.
My parents are gone now, and I know that we were lucky to find a place in which people with dementia are seen as more than their illness and that has managed to recruit and retain such caring staff. My family’s experiences taught me a great deal about the human capacity for growth and healing in the face of illness. I believe that environments in which staff have the time, training and desire to see and engage with the person—not just the illness—are a crucial foundation for person-centered care and a source of life and hope even in the midst of loss and decline. “Customer service,” a term I hear batted around in nursing homes and assisted living these days, is a pallid shadow of the kind of engagement and connection I sought for my parents and if I live long enough, may someday seek for myself.
I hope that many of us will take up the challenge to create and strengthen environments in which life can unfold.