nursing homes

I frequently visit a long-term care facility near my home. My dog and I go once a week to offer pet therapy to the residents. We walk from room to room, greeting the patients who pet the dog, smile at his simple tricks, and feed him treats as a reward. Occasionally, I also serve as a hospice volunteer in this facility, watching with someone who is dying through the dark hours of the night. For one reason or another, I’ve spent a good deal of time visiting nursing homes in Maine and Massachusetts, and this facility, in my experience, is one of the best. From an outsider’s point of view, it is clean and well-managed, with a full complement of services and a clientele that seems satisfied with their care. The staff is friendly to my dog and me, speaks kindly to the patients and treats them with gentleness.

Still, even in this seemingly best-case scenario, there are sometimes heart-breaking and gut-wrenching situations. Recently, nearing the end of a morning visit with my dog, I approached a patient we know well, who loves the little pup and whose attention he welcomes. She was sitting in her wheelchair in the hallway outside her room, looking anxious. I asked her what was bothering her, and she said she had been waiting for a long time for someone to take her to the bathroom. The young social worker who had just left her side had gone in search of a nursing aide to assist her. “It’s so hard,” she said, “when one gets old and bladder control is not what it used to be, and you call and call, and no one comes. Things have gotten worse,” she said. “One waits longer and longer now.” I expressed my sympathy and felt frustration rising in my chest. I also noticed a high-pitched wailing coming from the room opposite hers.

Someone else was also in distress. The room had a barrier across the door with a large stop sign in the center, indicating that only authorized personnel could enter. These detachable and portable barriers became common at the height of Covid outbreaks. “Help! Please help!” came the weak plea from the bathroom inside the room, but I could not go in to see what the matter was. I surmised the resident, whom we also know well, had been sitting on the toilet for a long time and was in discomfort or pain. The social worker approached again and reported that a nurse would be along shortly, after she finished putting another patient in bed. Timidly, I pointed toward the Stop sign and asked if she knew someone else needed help. She looked daggers at me, I guessed, for interfering, so I said goodbye to our friend in the wheelchair and walked on, frustrated, sad, and embarrassed for all of us.

The next day, when talking about aging with a group of healthy women in their sixties and seventies, I told this story and commented that this sort of indignity may await us all. I believe this common occurrence in senior care facilities is not the fault of nurses or other staff, social workers, or families, I argued, but the result of an ageist society that does not value the lives of those who are no longer financially or physically productive. An uncomfortable silence, a few somber nods of recognition, and a change of subject followed my candid expression of opinion. Understandably, no one wanted to discuss toileting in nursing homes or dwell on the possibility of finding ourselves in similar situations down the aging road.

I wrote about the indignities of the senior healthcare system in an extended series on The Elderly and End-of-life Care in 2017 when I launched this blog. Things have not changed since then, and because of further staffing shortages, they have worsened in many ways.

This kind of indignity may await all of us. More and more of us are living into our nineties because of medical advances producing life-prolonging disease treatments and cures. The healthcare system is stretched beyond measure, caring for an ever-increasing percentage of seniors in our population. We take advantage of every possible means to prolong our lives. Covid has decimated the ranks of healthcare professionals, and the greed of insurance and drug companies complicates matters further. I frequently hear my contemporaries say that the system is broken. They can’t get direct face time with their primary care doctors, or appointments with specialists, or get their prescriptions promptly. Doctors and nurses are quitting in frustration or from burnout. In-home care is exorbitantly expensive, and the agencies that deploy homecare workers are limping along with a few staff members. Of course, the financially secure have it far better than low-income people. That goes without saying, but no matter how financially secure you are, your dignity will be in jeopardy if you can’t get someone to take you to the bathroom.

Or will it? In these recent posts, I’ve been encouraging us to think about practicing for The Big Let Go—death. I’ve been recommending we consider learning to let go in small ways in ordinary daily situations to be ready to let go in a big way at the end of our lives. Am I suggesting that we must let go of our dignity? No. I am proposing that we consider where our dignity truly resides.

Does our dignity depend on how others treat us, or is it reflected in and demonstrated by how we treat others? My friend waiting for assistance to go to the bathroom was calm, polite, and sad but not angry, even though she faced the indignity of potentially soiling herself while she waited. The other patient, pleading for assistance from her bathroom, said, “Please.” Can we learn to relinquish the external signs of dignity while holding on to our inner poise, beauty, and self-esteem? And how can we practice doing that today?

How do we respond when someone wounds our dignity in small or large ways? Can we still insist upon the outward recognition of everyone’s dignity while more highly valuing intrinsic worthiness, integrity, humility, and courage as the essence of our humanity?

We may not all end up in situations like the patient in the wheelchair waiting for assistance with toileting. We may be lucky enough to die suddenly or in the comfort of our homes, surrounded by those who love us and tend promptly and respectfully to all our needs. We may live an active and independent life, avoiding physical dependency on others to the end. But if we don’t practice letting go of external signs of respect while holding fast to inner dignity, we may lack the necessary interior resources to draw upon as we approach The Big Let Go.

One of my original motivations for launching this blog was the recent experience of my friend, Dorothy, with today’s healthcare “system.” To introduce the topics of respect and disrespect for the elderly in nursing homes and in the homecare system, and, in particular, for those nearing the end of their lives, I would like to share a little about Dorothy and my relationship with her in the year preceding her death.

I first met Dorothy at church about 15 years ago. After she moved away to an independent living community in a nearby state, we stayed in touch through occasional letters and emails, and I would visit her a couple of times a year. Last year she moved back to a nearby town to live in the first-floor apartment of her son, Robert’s, double-decker home because she could no longer manage on her own. She died the day before her 98^th birthday in December 2016.

After her return to the area, my interactions with Dorothy became more frequent, both because she was nearer and because I was retired and had time to visit friends. She cared deeply about others, me included, and we became close over the last months of her life. She was an exceptional person; her intelligent mind was very clear and sharp to almost the very end, and she had very definite ideas about how she wanted to live and die. We talked openly and freely about those ideas. At some point during the last year I wrote her a letter expressing my desire to share her journey towards death. She did not, immediately, acknowledge or respond to that request, but I felt invited into her journey by the regular interactions I had with her and her son.

This is what I wrote a month after she died.

Dorothy pushed me away close to the end of her life. At the end, she wanted around her only those she thought she could legitimately consider caregivers: Robert, his wife, the hospice care aides. She was reduced to needing physical care and to being unable to give anything. She considered me a friend to whom she needed to give something of herself and she had nothing left to give. If I would show up to see her, she would feel “called forth” from her depleted state and obligated to offer some “energy of giving” that she no longer possessed – even if it were only a look or a smile or a word. She resented that obligation and wanted to be freed from it. She wanted me not to show up.

Somehow understanding this, the gift I gave her at the end was “not to show up”. I stayed away out of respect for her desire and need.

Of course, what she didn’t know, couldn’t understand, from the perspective of her personal life- experience of taking a great deal of responsibility for the care and wellbeing of others, was that I didn’t need or want any kind of care from her – not a word or a look or a touch. I simply wanted to be present, silent, still. I wanted to sit there, nearby, loving and respecting her.

In the last months of her life, Dorothy listened a great deal to me; to stories about the events and people in my life. She seemed interested, almost fascinated in a simple, direct way. There was sincerity and clarity to our conversations. Because she was deaf and dependent on two hearing aids, I would speak slightly slower than normal; clearly and distinctly. That demanded that I choose words carefully and with economy. She did the same because her energy was lagging. Conversations were not long. I listened a great deal to stories of what was happening to her physically as she became weaker – stories about her interactions with the healthcare system and her frustrations about it. She was kind and generous to individuals, for whom she tried to find excuses for inefficient or ineffective service, but she was a thorough critic of the system that she felt was under-serving her and other elderly and dying persons. We talked about the possibility of writing something about the failures of the “system” and how it affects those like her. She was shocked by what she was experiencing and seeing and wished there were something she could do to effect change.

She also told me stories about her children and her love and concern for them; and stories about her life, her difficult times, and her relationship with her beloved husband. What she offered me in those conversations seemed like precious jewels that I knew, as I was receiving them, I would cherish forever.

Dorothy was not always “good.” Sometimes she was stubborn, demanding, picky, judgmental, and critical. Because she was so intelligent, a highly-educated scientist, she could see through much of the dissembling and patronizing that she encountered in doctors and healthcare professionals around issues of aging, illness and death. Dorothy had always been strong and self-sufficient. To the end of her life she had a very strong will. She was not perfect, but she was always intense and honest.

I realize now that I did want something from Dorothy. I wanted her to give me the gift of sharing her dying. It was a gift she could not give, and I accept that. Though to me, at this point in my life, it seems a very important gift, perhaps the most important. I wanted to be Dorothy’s student. She had been a role model for me in life; I wanted her to be that in death as well.

Dorothy experienced two nursing home stays in the last six months of her life—one in a “rehab” unit after a hospitalization and another in respite care while her son was trying to arrange for more extensive homecare. Both stays were deeply disturbing to her. She felt more fortunate than her fellow patients because she was mentally competent and could advocate for herself. By contrast, many others, she felt, were severely under-served. The homecare that her son worked diligently to set up was spotty and didn’t fully meet his or her needs or expectations. In future posts, I will describe some of the specific situations she encountered in the nursing homes, in particular.

There is much current public discussion and writing about end-of-life medical care, how it has evolved and whether it serves well the people who need it. Two books are important contributions to this discussion: Being Mortal, by Atul Gawande and Modern Death: How Medicine Changed the End of Life, by Haider Warraich. A TED talk, “What Really Matters at the End of Life,” by BJ Miller also provides a fresh and insightful perspective: https://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life

The voice I hope to add to a discussion about end-of-life care and respect is one of personal experience: my years of interaction with the nursing home system in the northeast as guardian for a patient who lived in several “homes”; the experience of my mother-in-law who lived and died in a nursing home; the treatment my father received under hospice in Canada; Dorothy’s experience. As I ponder their situations I feel that respect is the crux of the matter. The system we have put in place, as a society, to care for our elderly, reflects a deep disrespect for the very people it was created to serve.

The next post will say more on this topic.

Dignity or Indignity

Respect: The Elderly and End of Life Care