A wonderful Thanksgiving experience: it’s all about relationships

Thanksgiving morning I called my sister-in-law to wish her a Happy Thanksgiving.  Linda (not her real name) has been living in a nursing home for about a month now. She is temporarily wheelchair-abled as the physical therapy team works with her daily to help her regain more independent skills.

Three years or so after my brother’s death in 2008, Linda was invited to live with her daughter and son-in-law. They remodeled their home to create what is called in San Francisco, at least, an in-law apartment. She made the decision recently to leave that cozy, comfortable, welcoming in-law apartment following an episode about which she later told me, “If I had been there alone, I could have died. Thank God my daughter was there.”

Linda seems very content; she misses her home, her own nest, but has told me more than once she is convinced that the decision she made was the right one. She is happy to know that should any issue arise, help is at hand. In her own words, “If my daughter and son-in-law had not been home when that last emergency happened, I would have died, and I would have died alone.”

My call to Linda Thursday morning went to voice mail where I left my greetings. Almost immediately, Linda called me back saying that she was visiting with a woman who lives across the hall and she could not get back to her room and her cell phone in time. My telephone visits with Linda can easily go for twenty minutes or more, and I was in no rush yesterday morning.  However, after five minutes, Linda apologized for having to cut the conversation short, but, she said, her neighbor across the hall was waiting for her to return.

I absolutely loved that response!  Obviously, Linda has relationships in that nursing home that are important to her!  Carter Williams, noted geriatric social worker and aging services advocates, reminds us that ‘relationships are at the heart of life’.

I don’t know much at all about the nursing home where Linda lives. But I do know that whatever the structure, however institutional, task-directed or person-directed it is, Linda has developed relationships in that nursing home that mean something to her!  She cut my Thanksgiving call short to honor and enjoy that relationship. I can’t think of anything that would make this day of gratitude more relevant or delightful to me. I wish that same gift of relationship for every person living in a nursing home.

A Review of "Being Mortal: Medicine and What Matters at the End"

I began this book with great enthusiasm, and closed it after 282 pages stirred by many of Gawande’s insights:

1.    The failure of the institutions of modern medicine and healthcare to focus on enhancing quality of life at every step of the way;

 2.    In the case of serious, incurable conditions, it is essential to know when it is time for ‘medicine’ to resist using every possible intervention at the cost of great pain and only prolonging the dying process.

3.    We want to control our lives, to “remain the writers of our own story.”

Gawande repeatedly makes the very central point that what is essentially important in life for us now will remain important regardless of our age. The dream and hope is that we will be allowed the autonomy necessary to “remain the writers of our own story.”

Just a few choice quotes that reflect these important insights?

From pages 140 – 141:

All we ask is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties (loyalties meaning ‘purpose’ here).

. . . . “Sickness and old age make the struggle hard enough. The professionals and institutions we turn to should not make it worse. But we have at last entered an era in which an increasing number of them believe their job is not to confine people’s choices, in the name of safety, but to expand them, in the name of living a worthwhile life.”

Gawande speaks of “the dying role.” It is a concept we should think more about, I believe.

Page 249

“Technological society has forgotten what scholars call the ‘dying role’ and its importance to people as life approaches its end. People want to share memories, pass on wisdom and keepsakes, settle relationships, establish their legacies, make peace with God, and ensure that those who are left behind will be okay. They want to end their stories on their own terms.  This role is, observers argue, among life’s most important, for both the dying and those left behind. And if it is, the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame.”

This book is worthy of reading, reflecting on, underlining, and even dog-earing the special pages, Each of us mortals should discuss these concepts of what makes life good, what we want – beyond medicine and the institution – at the end with those we appoint as our medical power of attorney.

For those of us who work in the field of aging services, this book and its grandly human view and articulation of what we want “at the end” merits discussion in staff meetings accompanied by serious evaluations to assure that our policies and day-to-day operational activities reflect and implement these humanizing concepts for those we serve.

“Life is More than Activities. It is Engagement.”

In the quote from Gawande’s book, BEING MORTAL, that I posted last week, I included the paragraph below.  Quite simply and succinctly Gawande addresses two major issues:  purpose and meaning in later life and “activities” as experienced in most nursing homes to this day.

“There was so much more she felt she could do in her life. ‘I want to be helpful, play a role,’ she said. She used to make her own jewelry, volunteer at the library. Now her main activities were bingo, DVD movies, and other forms of passive group entertainment. The things she missed most, she told me, were her friendships, privacy, and a purpose to her days.  Nursing homes have come a long way from the firetrap warehouses of neglect they used to be. But it seems we’ve succumbed to a belief that once you lose your physical independence, a life of worth and freedom is simply not possible.”

The challenge is presented:  how do we transform that aspect of nursing home culture which defines “activities” as what are really primarily generic activities, not related to personal interests (Bingo and DVD movies), and “forms of passive group entertainment.”  Carter Williams, social worker, advocate and activist, noted in her convening address to the Pioneer Network Conference in 2013 that “life is more than activities. It is engagement.”

A few years ago I visited Perham Living, a nursing home in Perham, MN, an onsite visit during the Pioneer Network Conference. An outstanding memory of that visit some seven years ago is of a woman who was growing African Violets in her room. It was something she had done for years. There were quite a number of these beautiful plants. We were told that the workmen had installed a deep wooden shelf near the window, as she had requested. It allowed this woman to engage in life, to continue familiar routines that were meaningful and pleasurable. This nurturer of violets was in her late nineties at this time.

There is a breadth and depth of implications and consequences for moving beyond activities to engagement. Federal Regulations called the Minimum Standards (yes, minimum) mandate that nursing homes learn what specific interests each resident has and to build “activities” around those interests.  The tragic reality is that even with these standards in place, surveyors by and large ignore the spirit and meaning of the minimum standards for “Activities”.

There are, of course, implications of cost and of outcomes for the transformation of activities that are generic and/or passive group entertainment.   In the case of the woman with her violets, research indicates such involvement enhances emotional and mental health. The sense of well-being can heighten one’s immune system, in contrast to a state of depression, isolation and loneliness all too common in too many nursing homes. Theoretically, then, this woman raising her African Violets was less likely to contract diseases that cannot be fought with a weakened immune system. She was also delivered from the insidious prescription of anti-depressants.  In all of this, no expense item has been noted, only the avoidance of possible expensive medications with an accompanying lowered quality of life.

The cost to the nursing home for this intervention, this facilitating quality of life, purpose and meaning?  The board to hold the plants. And maybe an hour’s labor from an employee in the maintenance department.

What if the interests, routines, and preferences of each resident in an Assisted Living or in a nursing home community were known, really known by the staff?  Would there be engagement? Would we find that the word “Activities” does not describe what is happening as residents engage?  I believe it would. We are moving to that reality when we describe the person responsible for this engagement as a Life Enrichment Director rather than an Activities Director.

“She Expected More from Life than Safety.”

More from this marvelous book, Being Mortal.

Gawande tells the story of an eighty-nine year old woman who, after falling twice within one week, made the decision to leave her condominium and move (‘be admitted’ as the medical parlance goes) to a nursing home.  I tell the rest of the story here from BEING MORTAL, pages 74-75.

“She picked the facility herself. It had excellent ratings and nice staff, and her daughter lived nearby. She had moved in the month before I met her. She told me she was glad to be in a safe place – if there’s anything a decent nursing home is built for, it is safety. But she was wretchedly unhappy.

“The trouble was that she expected more from life than safety. ‘I know I can’t do what I used to,’ she said, ‘but this feels like a hospital, not a home.’

“It is a near-universal reality. Nursing home priorities are matters like avoiding bedsores and maintaining residents’ weight – important medical goals, to be sure, but they are means, not ends.  The woman had left an airy apartment she furnished herself for a small beige hospital-like room with a stranger for a roommate. Her belongings were stripped down to what she could fit into the one cupboard and shelf they gave her. Basic matters, like when she went to bed, woke up, dressed, and ate were subject to the rigid schedule of institutional life. She couldn't have her own furniture or a cocktail before dinner because it wasn't safe.

“There was so much more she felt she could do in her life. ‘I want to be helpful, play a role,’ she said. She used to make her own jewelry, volunteer at the library. Now her main activities were bingo, DVD movies, and other forms of passive group entertainment. The things she missed most, she told me, were her friendships, privacy, and a purpose to her days.  Nursing homes have come a long way from the firetrap warehouses of neglect they used to be. But it seems we’ve succumbed to a belief that once you lose your physical independence, a life of worth and freedom is simply not possible.”

Being Mortal

After hearing Dr. Atul Gawande being interviewed about his most recent book, Being Mortal, I went online to my county library catalog and reserved a copy. I picked it up just a couple of days ago.

Gawande is a first generation American physician, a surgeon, and the son of two physicians, immigrants from India.  I highly recommend this book to anyone who wants to know more about the physical changes of aging, the place of choice in one’s quality of life, and how we (society, the medical profession, our family members and our friends) view aging.

Let me share just one tidbit.  In the chapter on physical changes of aging, Dr. Gawande addresses the issue of falls. (In fact, the New York Times had a feature article on the same topic earlier this week.) Falls in older adults are very serious.

Gawande writes:  “Each year about 350,000 Americans fall and break a hip.  Of those, 40% end up in a nursing home, and 20% are never able to walk again. The three primary risk factors for falling are poor balance, taking more than four prescription medications and muscle weakness. Elderly people without these risk factors have a 12% chance of falling in a year. Those with all three risk factors have almost a one hundred percent chance.”

Reading these facts points again to the negative side effects of “too much medicine.”  Muscle weakness occurs naturally as we age. We can slow down – not stop, but slow -- that loss of muscle mass and loss of strength by regular exercise. Walking is an excellent exercise and it also strengthens the sense of balance.

More later on this wonderful book:

Being Mortal: Medicine and What Matters in the End

by Atul Gawande

Henry Holt and Company

New York

282 pp.

WHO'S IN CHARGE?

It is becoming more common to see convent nursing homes operated by a management company. Some Religious Institutes will state that “we’ve never been in the field of health care. We’re educators.”  Or “we don’t have a Sister who is qualified to administer this nursing home.” And there may be other stated reasons why the operation of the organization that serves their own frail elders is handed over to a third party, a management company. 

Comments that are also more common with this turn of events include, “We’re not in charge.” “We don’t run our own nursing home.” “The management company said their contract does not allow  . . . “(a stated practice that the Sisters felt strongly that was a vital part of their value system and culture).

It should not come as a surprise that any management company, regardless of its stated mission, will see its own viability as its highest priority.  That’s simple Business 101, and it is true for not-for-profit organizations as well as for-profit entities.

So what are Sisters to do? First and foremost, DON’T GIVE UP YOUR POWER. Remember that YOU are still in charge.  A contract requires signatures from TWO parties.  If the present contract has shown to be unsatisfactory, make appropriate changes when the contract is renewed.

These statements may seem quite simplistic, but in reality they reflect the obvious and accepted reality that elected leaders of Religious Institutes cannot and do not wish to cede the well-being of their members to a third party. YOU are still in the driver’s seat! YOU are still responsible to advocate for each of your members.

Earlier this week I received the newsletter from Friends House, “A Nonprofit Quaker-Inspired Continuing Care Retirement Community” in Santa Rosa, California.  For two and a half years, this organization has been managed by a not-for-profit management company. Plans are for Friends House to implement an “affiliate relationship” with this management company.  In an article outlining some general plans, the final paragraph reflects the intentionality of this community to maintain its “cultural and spiritual values” in this new relationship.  I include that last paragraph here as a model of planning, intentionality, and a mechanism for monitoring adherence to their priorities of values and culture.

There has been a great deal of concern about maintaining the cultural and spiritual values of Friends House in the affiliate relationship. This will be the responsibility of the Board, residents and staff. We will work with PRS to align operations with our values.  To this end, a formal Statement of Principles between PRS and FASE will outline this goal; the proposed Bylaws provide a mechanism for monitoring adherence to it.

You are in the driver's seat.  Don't give up your power!