The United Nations of Caregiving

Have you ever spent the night in a nursing home or dementia care center?  How about for a week?

While on my sabbatical in Arizona I had the recent opportunity to spend several nights and many daytime hours in a care center.  Quite simply, the experience deepened my respect and appreciation for the roles played by professional caregivers at all levels.  

The facility in question is a nonprofit center, licensed for assisted living, and devoted exclusively to dementia care without restraints, the very definition of "mission driven" care. Set in a five acre campus, it is what I would call a "green house model" community (or more precisely, an Arizona Model Dementia Specific Assisted Living Project), with a maximum of twelve residents per cottage. It isn't a fancy place, but it is inviting, with a circular path between the four cottages that encourages people to sit under the trees, mingle and chat. Many residents are admitted on "private pay" status, but the center is also Medicaid certified.

Three shifts per day of CNAs (certified nursing assistants), usually at least two per cottage for each shift, provide the bulk of the personal care, cleaning, and meal service for the residents.  The CNAs rotate shifts between the four cottages over the course of a single work week, sharing the workload of more challenging residents.  There is also a small staff at the administrative level, including an executive director (who is working on her PhD thesis in her rare, spare time) and two LPNs, and there is regular input from both an MD and a very experienced Nurse Practitioner (who also has a PhD).  A jack-of-all trades-building-maintenance-man, an up-beat program planner, plus two expert cooks round out the staff.  I was on a nodding acquaintance with many of these people as a result of regular visits for close to three years, but my most recent ten days of "living in" gave me profound new appreciation.

The news media, for understandable reasons perhaps, tends to focus on tragedies and bad experiences in long-term care.  Lawyers also tend to do the same, although for other reasons. At a recent legal conference, an experienced attorney who represents families in tort suits against nursing homes told me that in his experience, there are "no good nursing homes," only "less bad" ones.  

Frankly, my experience, not just recently, but over 30+ years, is that there are very good care centers available. And the quality of living can be better than in the ol' homestead. It does take time to choose the right center for a loved one, and not every place will work for every person. I suspect the differences depend on how well any center identifies and supports its chosen mission of care.  The attitude at the top affects the attitude of every employee.

To start at the executive director level, I learned this week that an awning that magically appeared one hot summer day to shade the favorite bench of one resident came from the director's own home. The attractive, sail-like canvas was adjusted "just so" between a building and a tree to provide maximum protection without making the often restless resident feel trapped.

Regular readers of the Elder Law Prof Blog may have guessed. That sun-worshiping resident was my father, a retired judge.  He liked to hold court on that bench.   

Another resident would often accompany the maintenance man on his daily rounds -- carrying a tool or pushing a cart. That probably slowed the maintenance man down.  But I never heard a complaint.  On "tough days" for that resident, when he wasn't tracking enough to safely accompany the maintenance man, that same employee would gently and kindly guide him by the shoulder back to his cottage.  

One woman, who did not speak English, liked to dance.  At the regular planned musical events, I would see even the shyest CNAs allow this woman to draw them onto the stage to join the entertainers with happy feet. My sister joined her in dancing too.  

Another resident, who became one of my favorites, sadly had aphasia, making it hard for him to find words to express himself.  Instead, he howled.  I listened mornings and nights as those hard-working CNAs would correctly interpret his happy howls -- or his sad howls -- or his "I don't want a shower" howls, without losing patience.

This staff includes people born and raised in the U.S., including several from tribal lands.  But there is always a shortage of CNAs. This particular staff also includes men and women who are immigrants from foreign lands: Mexico, several countries in Africa, the Middle East, eastern Europe, India, Indonesia, and the Philippines.  Many of the caregivers, working 40 hours or more per week, were also caring for disabled relatives in Arizona, or were sending money "home" to support other family members in need.  One caregiver, a permanent U.S. resident, is considering the tough question of whether to return to the country of birth in order to join a spouse currently detained and facing deportation for illegal entry.  Their children, born in the U.S., would become strangers in that foreign land.    

The workers at my father's assisted living center are part of a United Nations of Caregiving.

My father, at 91 years of age, passed away last Friday.  The reason for my living-in wasn't research. After almost three years as a resident, Dad suffered a serious stroke and over the course of his last ten days, these amazing caregivers guided the way in his final passage. And they helped me and my sister and our mother too.  As one small example, they taught me how to help turn Dad in bed on a regular basis without causing him harm, and showed me what positions made it easiest for him to breathe.  It was a privilege to have them share their knowledge with me.

The staff told stories about Dad and shared their own personal stories.  They laughed with us, and when the moments came, there were tears in their eyes, too.  On Dad's final day, there was a parade of CNAs, both cooks, the nurses, the director, and even some of the other residents, stopping by Dad's room to pay their respects. One CNA spent her middle-of-the-night break time with me and Dad on what proved to be his last night.  

This was an unexpected experience.  One CNA, a Native American from an Arizona tribe, suggested we open the window more widely on a sunny morning, so that Dad's spirit could fly. That happened close to the time my father passed away.  

So, when there is the temptation to condemn a nursing home, a care facility, an assisted living center, or a dementia unit as "the last place on earth" you would want to be, let me suggest that it can also be the "right" last place on earth, filed with wonderful, caring professionals.