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! 

                                                                                                       

"I choose to inhabit my days."

This blog holds so many entries about various aspects of aging as well as issues of aging services. The quote I include in this post comes from another blog:  www.mysticsandprophets.blogspot.com  The author, Amy Hereford, CSJ is a “newer member”, belonging to the group of Sisters born after 1955.

“I also know that I and many of my peers are in a vulnerable place.  I will bury 20, 40, 60 of my own dearly loved Sisters to every new sister I welcome. And this not just in my own congregation, but in most of the congregations I know. I ask myself how much my heart can take as my circle gets smaller and closes ranks and another sister’s story comes to its blessed closure. A joyful time to be certain, a gift fully given, a life fully lived. May the choice of angels greet you! . . . may you have eternal rest.

 “I ask myself if I have steeled my heart to the grief. As we move forward, who will hold our aching hearts? As we gather in ever more intimate circles, we are called to celebrate a year dedicated to consecrated life. So in this season of change, I am sitting with vulnerability. I am asking myself what I use to escape the stark realities of life. And in this place, how do I dare to hope?"

Amy raises an issue that I too have reflected on often. As members of Religious Institutes of Women, we experience our circle of vowed members becoming smaller and smaller. My own thoughts have been voiced this way:  “I always think that as we return from the cemetery after a funeral to share a common meal that we should hold each other a little closer in the circle.”  I also think and say that it would serve us well to talk deeply about how we want to live our days together, pulling together the thoughts in this beautiful poem:

Living Wide Open: Landscapes of the Mind

I will not die an unlived life

I will not live in fear

Of falling or catching fire.

I choose to inhabit my days,

To allow my living to open me

To make me less afraid,

More accessible,

To loosen my heart

Until it becomes a wing,

A torch, a promise.

I choose to risk my significance,

To live so that which came to me as seed

Goes to the next as blossom,,

And that which came to me as blossom,

Goes on as fruit.

---- Dawna Markova

Hands Held in Service, Community and Grace

Monday afternoon I visited a Pilgrim who lives in the nursing home here at Pilgrim Place.  Emily is a 90-year-old nurse who has spent many years working in South America. Emily is Baptist, but assured me as I was gratuitously introduced to her as a Catholic that “we all love the same God”

Emily told me about her neighbor, Laura, who had lived just across the hall from her. Laura was Catholic and told Emily that when she was growing up Catholics really weren't allowed to read the bible on their own. (Yes, we remember those days when fear of incorrect interpretation limited our exposure to Scripture to the readings at daily or weekly Mass.) . I did not ask, but I am led to believe that Laura had not lived at Pilgrim Place prior to her moving to their nursing home. The nursing home does not have the same residency requirements as the other areas of the campus.

Now, retired, with several chronic issues and needing the supportive services of a nursing home, Laura wanted to read the bible. She ordered a large print edition of both the NIV and the King James Version.  To her great distress, Laura could not read either volume because of her advanced macular degeneration. Not to be stopped, Laura asked Emily if she would read the Scriptures to her.  “She was so hungry for the Word,” Emily told me.  So regularly, Laura came to Emily’s room to hear Laura read the Scriptures to her.  At Laura’s request, each visit began with the two of them holding hands and praying the Lord’s Prayer together.

“We had read Matthew, Mark, Luke and almost all of John when Laura fell and had to be hospitalized.” The fall and Laura’s general health condition resulted in a rapid decline and she was soon placed in hospice care. “I went to visit Laura; I believe she was in a coma, and I did not know if she could hear me, though we believe hearing is one of the last senses we have.  I put my hand on her heart and recited the Lord’s Prayer. I hope she heard it.”

Ann Lamott says in her recent book, STITCHES, that at the heart of meaning is relationships.. What profound and sacred purpose and meaning both Emily and Laura found through this neighborly act of asking for assistance and in the act of providing it. Both are gifts. Both women were gifted in the exchange. 

GRACE

At around mid-meal in the large dining room of well over 150 diners, there was the gentle tinkling of a bell. In the silence that quickly followed a woman stepped to the microphone to lead Grace:

“According to the calendar of feasts at Lindisfarne, this is the feast of Michael the Archangel. And so today, instead of our usual model for prayer, I wonder if we might look at one another around our tables

“Reflect with gratitude for a moment on the way in which we are angels to one another. To each angel we say, ‘Thank you.’

“And then, let’s look at the staff nearest us, holding them with gratitude in our hearts for the many angelic tasks they perform for us. And together we say, ‘Thank you.’

“And to the God who gives us life and love, we say thank you.”

This was the scene in the dining room of Pilgrim Place a continuing care retirement community in Claremont, California with a unique history and spirit. In 1915 Pilgrim Place was established as a residence for foreign missionaries of the Congregational Church upon their return from China. Today residency at Pilgrim Place still requires of its residents that essential quality of having spent at least part of one’s life in ministry or ministries of service. The result is an amazing community with a breadth and depth of diversity of life experiences, yet holding in common a life of faith-based service.

It is so obvious from the first encounter with a Pilgrim (What a wonderful description of the persons who live here!) that life in this retirement community is filled with continuing service reflected, among other ways, in a deep sense of Christian community. Remember the hymn from the 60s, “They Will Know We Are Christians by Our Love”

Pilgrim Place brochures describe the campus as one where “Christian leaders” come “to continue their lifelong commitment to service and outreach while exploring new opportunities for personal growth and learning.” And in another place in the same brochure, “Pilgrim Place is an intentional community where persons come to live, grow, learn and extend their Christian commitment to service within the community and the world.”

At the noon meal I experienced the intentional community; in conversations I learned from the Pilgrims at my table about their involvement in issues that involve life here on the campus as well as issues that hold a global impact for justice.

There is much for me to mull over as I spend another day and a half here.  What applications are obvious for other retirement communities comprised of individuals who have spent their life in faith-based service?  Is there a different view of aging in this community, following from its commitment to intentional community, to a commitment to continue to grow and learn, and to extend service within the community and the world? Does such a vision result in a deeper experience of purpose and meaning in our later years?

Living our legacy of ministry

Saturday I was among some 200 women religious from the greater St. Louis area for an annual meeting. It’s one gathering I never want to miss because of the substance offered in presentations, the table interactions and the genial connecting with Sisters one doesn’t see often enough. Yesterday was no exception.

The morning agenda included our viewing a well-done DVD reflecting the varied ministries of Sisters in the region. I was quite conscious that of all the illustrated examples of ministry, the ministry of service to our own frail elders was absent. Why was this ministry, in which every congregation is engaged, not included?  And what does its absence reveal?

I believe that it is our very dedication to ministry that has made us vulnerable to this blind spot. In reading and responding to the signs of the times, we Sisters can be found in countless places and circumstances meeting unmet needs. We have spent our lives, in this response, “going out on mission” to this service of others. But in the service to our own, we do not “go out” on mission. We even use the term “internal ministry” to distinguish this ministry from that of “going out” on mission.

There is not yet a consciousness that the same impelling call to serve by responding to the signs of the times is answered in this service to our own just as surely as it is when we respond to the signs of the times in service to others.

One anecdote bears this out, though I suspect it could be verified by a hundred other such examples. A Sister, appointed to an aspect of ministry to the elders in her congregation, asked, after a few years at the task to move to another ministry. In speaking with her provincial, the provincial asked whom the Sister might recommend to replace her.  “Sister X might be quite acceptable in this ministry,” the Sister said.  To which the provincial answered, “Oh, but we would have to take her out of active ministry.”

When we make a collective shift of consciousness to the reality that the ministry of service to our own is as integral a call to service as any others listed in our congregational directories or on our websites, we reveal that we have grasped the prophetic witness value of this ministry. We will read our Constitutions and Chapter Statement with new eyes and new insights. We will acknowledge the implications of the reality that we are a group of aging women living in an aging and ageist society. When this awareness is raised to a conscious reality and made operational, it will be possible to serve our Sisters (and the larger society) in the same creative, visionary and prophetic manner that has characterized our other ministries throughout our history.

Pfizer and FOGO -- Fear of Getting Old

Today’s New York Times has an article in the Advertising Section titled “Pfizer to Inject Youth into the Aging Process”. Pfizer is attempting to improve its image, the article says, and the three-year old campaign, “Fear of Getting Old”, or FOGO is an effort “to burnish the Pfizer image rather than promote its products.”

One aspect of the advertising campaign is a website geared to people in their 20s and 30s. There’s a quiz which allegedly evaluates the quiz-taker’s attitude toward his/her aging. Pfizer’s research reports that its image among persons who have visited the website has improved by 55 percentage points.

So the campaign is apparently achieving its goal. People have a more positive image of this Big Pharma entity.  And hopefully there is a parallel positive increase in the attitude toward aging: in general and one’s own aging among the visitors to getold.com.  My cursory review indicated that the topics are certainly of interest to people in their 20s and 30s. There also seems to be a general attitude of ‘grin and bear it’ toward one’s aging.  The gerontologist in me says we must go much farther.  We must honor and cherish each stage of our life, each stage with its own potential for growth and development. No Fear!

I’m reminded of an advertisement done by Kaiser Permanente. Its aim is to encourage women to get regular health screenings, but the 60 second clip shows older women with such life, energy,  mature beauty, deep relational capabilities and spirit that I can never look at it just once.  See for yourself!

The Geography of Memory Part 3 of 3

© Imelda Maurer, cdp July 14, 2014

I read an online obituary last week for a woman I felt I had known to at least a small degree after reading her daughter’s book, “The Geography of Memory.” If you have read the book, you too will read about a familiar person in this very personalized obituary. The obituary can be accessed here.

I must draw attention again to institutional and depersonalized words regarding the elderly, their health status or the services they receive that can creep into the noblest of works. Words are so important in the way we frame our images and concepts.  In the effort to change the culture of aging and aging services, a project that demands a total transformation of how we presently perceive aging, old age and frailty, we must find words that reflect the person with his/her dignity, wholeness and personhood.

Walter Brueggumann¹ says of the Hebrew Testament prophets: “Most of all, they understood the distinctive power of language, the capacity to speak in ways that evoke newness ‘fresh from the word.’

Thus, it would be much more in keeping with Erna’s dignity to describe her and others with her diagnosis as “persons living with dementia” rather than “demented adults” as is found in Walker’s book.  We are each more than our diagnosis.  Walker actually reflected that truth in how she talked about her mother, even in her last months of life. But it is all too easy to take on the words of the larger society when we know at some deep subconscious level that the words are inadequate.

“Diaper” is a term that defines protective clothing used with babies. It is not a term that, when used in describing adult protective clothing that reflects dignity. “Incontinent briefs” or “incontinent pads” are much more appropriate terms.  Mrs. Walker herself exclaims to her daughter when confronted with Depends, “Diapers are for babies!”

Editors need to get the word (no pun intended) that just as certain words are now seen as racist, for example, there are also words that are depersonalizing to elders, especially frail elders.

Karen Schoeneman, formerly of CMS has a great chart of ‘old words’ and ‘new words’. You can access it here. Print it out and practice using new words! When we change our words, we can change a culture!  And we are acting in the tradition of the prophets – persons who pointed to an alternative world, the world of the Kingdom of God.

1. Walter Brueggemann (2001). The Prophetic Imagination (2nd^.  ed.)Minneapolis. Augsburg Fortress. p xxiii.

The Geography of Memory Part 2 of 3

The Geography of Memory Part 2 of 3

 
© Imelda Maurer, cdp July 11,l 2014
In yesterday’s blog, I ended with this from Jeanne Murray Walker’s book:  “And for a while we have each other.”

As a member of a Congregation of Catholic Sisters (a Religious Institute),  I have often thought – and sometimes said – that upon our return from a burial in our convent cemetery, we should all, at least figuratively, hold each other a little closer in the circle. That same feeling was expressed by Jeanne Murray Walker when she and her sister pledged to create times for family gatherings after her mother’s death.  So my musings here apply not only to members of Religious Institutes but to all family circles however each of those circles define family or community.

 In consciously drawing closer within the circle, what might we find within?

----- The importance of the present moment?
-----  An articulation of the love for one another in word or action that often goes unsaid?
-----  A deepened cherishing, knowing that it is only “for a while” that we have each other?
-----  A greater appreciation of ‘the other’ gained from more attentive presence and listening?

There may be some questions that we each bring to the circle.
-----  How do we want to spend the rest of our lives together?
-----  What will I bring to the circle to enrich it?
-----  How will I contribute to the legacy of this circle?

What would you add to the learnings or questions within the circle?  Please share by adding a comment below.

The Geography of Memory Part 1 of 3

The Geography of Memory:

a review

Walker, Jeanne Murray (2013)
The Geography of Memory
New York: Center Street

© Imelda Maurer, cdp  July 10, 2014

Jeanne is a writer, a professor, a lover of poetry and literature and also a wife, mother, daughter, and sister. All of these roles/competencies find their way into her writing. Using the concept of metaphor as a recurring theme, Jeanne pulls together memories of her childhood and the enduring bonds between her and her mother.

For those looking for more about caring for a parent with Alzheimer’s, or the experience of being with a parent with dementia, that comes mostly in the last 100 (of 360) pages. Jeanne and her sister, Julie, are devoted and caring daughters; their love and faithfulness to their mother is reflected in the many ways they were present to support and assist their mother.

There were several times as I neared the end of this book that I identified closely with Jeanne’s reflections about her mother’s aging, her increasing frailty and finally her living with dementia. Those were emotions I too felt seeing my mother in her later years. I remember feeling rage that my mother would suffer the ravages of illness and memory loss and what I considered unnecessary losses to her personhood. (Now I know she didn’t lose her personhood! Jeanne expresses her own realization of that truth very well.)

The temptation to include some of my choice quotations from the book is strong. I resist so that each reader might savor firsthand those ‘favorite places’ for herself/himself. However, I am compelled to include this one quote. Walker speaks of a family gathering about a year and a half after her mother’s death.

“We will keep gathering. This is what we have now: the wind, the waning sunlight, the stars and flowers, our mother, the journey we took together during her last decade, the disciplines we learned, the gifts our long pilgrimage together brought us. And here on earth, for a while, we have each other.” (Page 360)

And for a while we have each other.

A SONG JUST FOR ME: STIRRED BY MUSIC TO CONVERSATION AND COMPASSION

I offer this review of an especially valuable book.

A SONG JUST FOR ME: STIRRED BY MUSIC TO CONVERSATION AND COMPASSION
By Mary Kiki Wilcox
Fithian Press 2014
(Available at Amazon.com)

Carter Williams, social worker and elder advocate, professes with great conviction that relationships are at the heart of life. The small but fascinating book, “A Song Just for Me,” gives evidence of this simple and profound truth. In story after story author Mary Kiki Wilcox shares with her readers a little of the lives of the residents to whom she brings her music – and theirs.

This collection of essays reflects such an abundance let into the lives of the frail elders Mary meets. It is the gift of music which is really the context for the gift of mutuality which buds and develops under Mary’s sensitive presence and awareness.

It is through sharing music that Mary sometimes comes to journey with a resident during his/her last weeks or days. She speaks of the sacredness of death and dying in a way that is known in its deepest recesses only when there is a personal relationship between the dying person and the one who sits by the bed, who companions the other.

Each essay reveals that what is most desired and cherished by frail elders who need more and more support in their daily lives is presence -- the presence of another that is marked by attentiveness, openness and compassion.

This book is highly recommended for anyone serving elders in any capacity in an aging services organization because it speaks succinctly and eloquently about what most makes a difference in the lives of those elders we serve. There is only one word of caution. Mary uses the vocabulary she hears day to day in this organization so words such as “facility” and “unit” reflect an institutional mindset. As a strong advocate for transforming the culture of aging services from an institutional mindset to that of HOME, I am very conscious that if we are to do that we must change our words. Our words reflect our mental images and our mental images give birth to our words.

Perhaps by way of full disclosure, I met Mary at a writer’s workshop in 2008. After hearing her read one of her essays to our group and hearing her talk more about her volunteer work, I expressed my conviction that if I were the director of the campus where Mary lives and volunteers, I would consider her absolutely the most valuable person on the staff – even though she is not an employee. After reading her book, that conviction stands firm!

Good! Maybe She'll Wake Up! Part 3 of 3

Too long ago I promised a third and final entry on the issue of advocacy “for anyone who has some responsibility for an elder in a nursing home through some appointed position or because of the bonds of relationship.”

This last entry gives a brief overview of the ‘skill set’ of a good advocate. One content area of an advocate’s skill set is a basic knowledge of what the standards are in a given setting. In a licensed aging services organization, those standards are known as the Federal Minimum Standards of Care or ‘the regulations.” In unlicensed retirement settings, the same standards should be adhered to, even though the State regulatory agency does not survey for compliance.

If there is some responsibility for a person in a licensed retirement setting, it is important for that person to know what standards the organization is held to. Reading the regulations is not a treacherous experience.* One may even have an ‘aha’ experience, realizing that what you thought should be is required to be. For example, a nursing home is mandated to reasonably accommodate the “needs and preferences of the resident except when the health or safety of the individual or other residents would be endangered.” This obligation of the organization and the rights of the resident come into play dozens of times a day. Starting at the beginning of the day, a resident should not be forced or expected to get up in order to be at the table when the institutionally-set meal time is operative. Another simple example: My mother preferred buttermilk over milk; that is what she was served each day at lunch.

In addition to being familiar with the regulations, participation in a Family Council is very helpful. Such a gathering allows family members and friends to voice what are probably common concerns and seek solutions.

Lastly, a good advocate will have an empathy that prevents him/.her from seeing the elder as “other”. This empathy is akin to identification with the elder, the opposite of viewing, even subconsciously, the elder as “other.” When the view is that of “other” the ‘viewer’ is incapable of seeing a situation or condition that might apply to him or her personally, and therefore imagining, understanding the responses natural to such a situation.

My sister-in-law’s adult children continue to be strong advocates for their mother as she continues therapy following a broken hip. My nephew told me recently that he had to address an issue with his mother’s nurse over what medications she was getting. In the course of the conversation, the nurse apologized for what she said could have been a curt and abrupt manner. But, the nurse explained, “you have to understand that our schedule is so busy and . . . .” At one point the nurse had described his mother as “noncompliant.” To my nephew’s credit, as a good advocate who is focused on assuring that his mother’s services are appropriate and focused on her full recovery, he addressed both of these issues with the nurse. He did so politely, but firmly. He and his sisters do not settle for poor care. Nor do they consider staff convenience, or task before person to be viable operating principles.

So being a good advocate requires knowledge of what the standards are and it requires an advocate’s heart and sensitivity.
*If you would like information on how to access these Minimum Standards of Care, or if you have a question about any standards of care, you can contact me at imeldacdp@istoo.org

Good! Maybe She'll Wake Up! Part 2 of 3

Yesterday on this blog I ended by talking about the essential role as “advocate” for anyone who has some responsibility for an elder in a nursing home through some appointed position or because of the bonds of relationship. I promised to answer the question of where one goes to gain that knowledge necessary to be an effective advocate.

I offer the following as a partial fulfillment of that promise. My day gave me the opportunity to address the concept of advocacy in a way I wish I did not have to do. My sister-in-law has found herself in a nursing home following a fall which resulted in a fractured hip and subsequent surgery. That fall happened over a month ago. My sister-in-law is in a kind of limbo because she needs rehabilitative therapy, but that cannot be provided until her surgeon says it is okay to put weight on the affected leg.

So her three adult and devoted children are looking for a nursing home that is closer to them rather than to the surgeon – one that will provide the best rehab therapy, provide the best services for their mother who needs increased support in her daily life, one that will honor her dignity, her individuality, her needs and her preferences. The three of them are visiting nursing homes closer to their home. My nephew called today with that news and with information about a couple they were looking at. I offered to provide some things they should look for or be aware of as they visit these nursing homes.

I include them here as issues that any good advocate should be cognizant of for any nursing home resident for whom they hold some sort of responsibility through appointment or the bonds of love and loyalty.

I told my nieces and nephew to look for and be aware of these things. And this is just an initial list:

1. Are there ‘slumpers’? These are elders who slump in their wheelchair, sleeping or totally unaware and unengaged in their environment. BAD. They have escaped an intolerable environment and gone to their own inner world. (Not my analysis. Read the book OLD AGE IN A NEW AGE by Beth Baker.)

2. Are there elders lined up in wheelchairs or circling the nurses’ station? BAD. It means there is no meaningful engagement for individual residents.

3. What is the tone of the relationship evident between the staff and the residents? Does the staff even see the resident? Does she meet their gaze, address them? Is it patronizing or is it genuine, expressing a sense of mutuality in their relationship?

4. What is the tone of the caregivers (CNAs and licensed nurses) when they are interacting with the residents? Is it person-to-person or is it more impersonal, task oriented, and schedule-bent?

5. If you are able to be there at lunch time you can observe how the serving staff and the kitchen staff interact with the residents.

6. Are residents “parked” in the dining room for a long time (30 minutes is a long time) waiting for the scheduled meal time to take place?

7. Does everyone wear a bib? DON’T LET THEM DO THIS TO YOUR MOTHER! As your instinct will tell you, this is a dignity issue. She has the right to say no. Or better yet, Hell no.

8. Is there any conversation at the individual tables or is there a sense of disengagement or low level depression expressed in utter silence and isolation?

9. How is the food served? Is it appealing in color and arrangement on the plate? Would you consider the style of the meal service more like a restaurant, a home or a hospital?

If these events or the ambiance within the nursing home are present, the residents need good advocates who will address these issues. Knowledge of the regulations, called the "Minimum Standards of Care" are important. But there are some things that are so obvious that when we see them we know they are not right. In my beginning days within the traditional nursing home culture, I was troubled by much of what I saw. Because I was totally ignorant of 'the system' I thought, "I guess that's just the way it is." I learned soon that the words of an early mentor rang true and still ring true: "If you think it is not right, it probably isn't. Never get used to poor care."

Good! Maybe She’ll Wake Up!

This is a true story told to me many months ago by a woman I’ll call Sylvia. Sylvia got a call from the nursing home where a long-time friend of hers was living. Sylvia was not power of attorney for this nursing home resident, but the nursing home knew she was a close and long-time friend and that she was planning an out-of-town trip. Staff called to tell Sylvia that her friend was being put on hospice care.

In a sense it was not a surprise to Sylvia. Through the course of her faithful visits, her friend had “deteriorated” cognitively. She did not always recognize Sylvia; often she could not engage in meaningful conversation or call Sylvia by name. On more than one occasion Sylvia could not rouse her friend. “Dementia” the nursing home said.

“I’m going to be out of town for four days,” Sylvia said with some anxiety. “It’s okay”, she heard the voice reply. “She’s stable now. We are enlisting hospice and we will be taking her off her routine meds.”

To her later amazement, Sylvia heard her say to the staff person, “Good. Maybe she’ll wake up.”

She did!

The nursing home resident is no longer on hospice. She is alert, always recognizes Sylvia and calls her by name; she shares stories of earlier days when they lived on the same block in a tight-knit neighborhood. She laughs. She asks about this one and that one as if -- as if -- she is actually engaged with life again!!

Such is the tragedy of over-medication, or possibly drug interactions resulting from what is called polypharmacy. The topic of over medication has been addressed in the blog many times. It is a major concern to governmental regulatory agencies that have strict guidelines about the use of “Unnecessary Drugs”.

It is a concern for those long-term care practitioners who sincerely want to execute that part of the nursing home reform statute (commonly called OBRA ’87) that mandates that their organization “must” provide the necessary care and services to enable the resident “to attain or maintain the highest practicable physical, mental, and psychosocial well-being, in accordance with the comprehensive assessment and plan of care.”

A resident cannot attain or maintain her highest practicable level of functioning when she is medicated to the point of obvious sedation, or sometimes even to the point of being so sedated that she cannot be roused, cannot open her eyes or even lift her head which is at a 90 degree angle to her body as she sits in her wheelchair.

It’s not right. It's that simple. I hope that anyone reading this blog who has some responsibility for or bond with a nursing home resident will be on the lookout for such obvious markers of over medication. The response should be that of an advocate. A strong, loving advocate.

If one would hire a person as an attorney who has no knowledge of the law, how smart would that be? The answer is obvious. The same is true when we are called to advocate for another. If it is a resident in a nursing home, then the advocate must know what the standards of care are before an issue can be adequately addressed.

Where does one go to learn what the minimum standards of care are? And do these minimum standards matter if the person in the nursing home is not in a licensed nursing home? Tune in tomorrow!

Sister Klaryta

Back in September I posted an entry on this blog about Sisters’ obituaries. ("Never throw away old pantyhose") I contrasted the obituary that merely lists certain facts of a Sister’s life and the obituary that shares who that Sister was, what qualities described her, why people loved or admired her, what difference she made in the world because she was here, why she will be missed.

When I read the following obituary, I thought it portrays exactly those factors and consequently honors Sister Klaryta. Coincidentally, I met Sister Klaryta last November when I was at her convent in Santa Maria, CA. During a discussion on aging and the potential life holds for growth and development through our last breath, Sister Klaryta was an engaged participant, offering reflective, life-experience comments pertinent to our topic. Two months later Sister was diagnosed with cancer and died on March 17th

I invite you to read this obituary about this extraordinary woman -- an orphaned holocaust survivor, an advocate for justice --

From the Santa Maria Times March 19, 2014


Sister Klaryta Antoszewska OSF
1932 – 2014

Sister Klaryta (Ida Antoszewska) was born April 14, 1932 in Poniewierz, Lithuania to Wtadystaw Antoszewska and Maria Radziwilowicz. She died March 17, 2014 at Marian Convent, Santa Maria, CA. Sister was a Holocaust survivor, humanitarian, philologist, speaker of numerous languages, peace maker and protester of unjust causes, forever educating others in a life dedicated to service for those in need.

At a young age her family moved to Lodz, Poland, where a younger brother, Chesla, and sister, Wanda, were born. During the Holocaust her doctor father Wtadystaw was sent to Siberia and her mother, Maria, was captured and killed so that 12 year old Ida assumed responsibility for her younger siblings.

At the end of the war the children were separated: her brother off to Siberia in search of their father and her sister adopted by a Dutch couple. Ida then entered school, and eventually joined the Franciscan Sisters in Chojnice and helped them in various hospital activities. At the age of 20 she entered religious life with the Sisters of St. Francis of Penance and Christian Charity in Orlik and was given the name Sister Klaryta.

Early on Sister Klaryta taught in various schools in Poland and completed studies in philology. She eventually went to Rome in 1969 where she worked at the Vatican in the Office of Peace and Justice. In 1976 she accompanied Sister Rosemary Lynch of the same religious community to the United States and moved to Las Vegas to work in the movement protesting nuclear warfare and working for peace and justice at the local test site.
Sister Klaryta had a special love for refugees and immigrants, and for many years was the driving force in the Sisters of Saint Francis Social and Refugee Program in Las Vegas. Beloved by many whom she helped, she was always willing to do what she could for the many families and friends who came to the area with little or no economic means. The home she shared with Sister Rosemary was a haven for many people in need.

Sister Klaryta moved to Santa Maria in 2013, where she lived with her other Franciscan Sisters at Marian Convent. Despite her failing eyesight, Sister was always willing to help in any way she could. Her spirit of acceptance of all that God gave her was once again shown when she was diagnosed with cancer early in 2014. She was more than ready to be with her family and Sister Rosemary once again.

A gift only available to those who have already received the gift of years

Recently Oprah Winfrey interviewed Diana Nyad on her weekly program, “Super Soul Sunday.” Oprah quoted the first verse of this following poem as a response to a statement by Diana. I found the poem on the Internet and share it here.

I won’t interfere with your reading of this poem by sharing my own thoughts as I read it. Only this: Sit, read, enjoy, smile, reflect, read again . . . . .

Love After Love

The time will come
when, with elation
you will greet yourself arriving
at your own door, in your own mirror
and each will smile at the other's welcome,

and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you

all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,

the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.

Derek Walcott

Drugs and Dementia Care: Unnecessary, Ineffective and Costly

I've learned the sad truth that a hard drive can be like an attic or a basement: It too can get very cluttered. I've spent several evenings thinning out and organizing files in "My Documents." This evening I came across the article below. I believe I wrote it with the intention of posting it. However, I do not see it listed in my 6 years of blog posting, so here it is! It was written in 2010 prior to the publication of Dr. Al Power's marvelous book, DEMENTIA BEYOND DRUGS.
-- -- -- -- -- --
Isn’t it amazing how often compassion and common sense aren’t validated until there is an official study or series of studies that address the issue involved.

Within the past year or so there has been one news report after another indicating the prevalence of nursing home residents with dementia being prescribed anti-psychotics. This exists in the face of Black Box Warnings by the FDA indicating that elderly residents with dementia are at an increased risk of death when certain anti-psychotics (Seroquel is a big one) are part of the drug regimen.

Recent Research
A study in Australia was reported in the September issue of Caring for the Ages. The residents in that study all had progressive dementia “with persistent behaviors that made it difficult for staff to care for them.” One group of caregivers was provided two-day training in person-centered care with dementia residents. The residents were tested with scientifically valid check lists to indicate their level of agitation at the beginning of the study and then at four and at eight months after the beginning of the study.

Results
After four months, those residents with dementia receiving “usual care” showed an increase of agitation of almost 9 points on the scales that were used. By contrast, those residents who were cared for in the person-centered care model, showed a decrease of 9 points on the same agitation scale.

So there’s the scientific proof --- medical professionals refer to it as “evidence-based” approach to care –

Drugs prescribed for patients with dementia are not always unnecessary. But it is clear that reaching for a prescription pad the moment a behavior is observed is not good medicine even though it is a prevalent practice in too many nursing homes. Dr. Al Power is a geriatrician and certified medical director who practiced at St. John’s Home in Rochester, NY. He has a book that will be published in the early part of 2010 on this very topic of non-pharmacological approach to dementia care. In his own nursing home practice, Dr. Power told me, an average of six percent of his dementia patients at St. John’s were on anti-psychotics. That’s a wonderful contrast to the national average among nursing home residents with dementia of twenty-eight percent

The call to liberate our elders
When this evidence-based, person-centered approach is used, these elderly residents have been set free from the shackles of unnecessary drugs. Let the work go on!

My Mother . . . . Mama

Recently I received an e-mail from an acquaintance, Lucille I’ll call her, after a long gap in our communications. It was a one-line message: “My mother will probably die today or tomorrow. Please pray.” I responded immediately, sending my prayers and my support. My message included the following: “Regardless of the path there has been in any mother-daughter relationship, I feel it is always the little girl in us who loses her mother.”

Later that same morning I received another e-mail from this woman: “Mama just died at 11:15.”

Consciously or unconsciously, I felt that Lucille had affirmed my feelings about a daughter’s loss of her mother. No longer ‘my mother’, but ‘Mama” what we as children called our mother.

Among the many emotions surrounding my grief at my own mother’s death was one of loss, and the knowledge of the unremitting absence of death that the “little girl” in me felt so keenly. My mother died while she was a resident in a nursing home in the Dallas metroplex. At the time I was living and working as a community organizer in South Carolina and received a shocking phone call one evening from my brother with the news that my mother had died. I had spent an extended period of time with my mother just six weeks prior, as I did regularly and periodically.

My first morning back in Dallas I went to the nursing home as soon as possible. I wanted to learn as much as I could about my mother’s last day. As I walked from the entrance down the hallway, the administrator, Mrs. Wesley, saw me; she left her office, met me, put her arm around my waist and walked me back to her office. I don’t remember a single word of our conversation in her office. I only remember her warmth, compassion and empathy.

For those of us who work in aging services, we walk this path with so many families as they lose a parent. It is part of the day-to-day tasks in our line of work. May we never allow these events to fall into the category of the ordinary lest we not be ready to share our warmth, compassion and empathy with an adult child who just lost his/her Mama.