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.

If the doctor says this to you, RUN!

This is a recounting of true events, a telephone conversation I had just yesterday. Names have been changed. The woman I spoke with had just lost her husband to a short-lived diagnosis and a painful death. She told me that her husband’s physician encouraged good nutritional habits and exercise. That’s a good thing. However, when her husband continued to complain of ongoing symptoms such as los of energy, loss of stamina and arthritic pain, the doctor’s response, according to this woman, was not to investigate his complaints further, but to say to her husband, “You’re just getting older, George.”

Ageism – alive and well in the medical profession – alive and well in too many of those in whom we place our trust and, indeed, our lives. So yes, if any health care provider uses your age, or the age of anyone for whom you advocate, as the overriding explanation for expressed concerns RUN!! Run to find another physician. Before you run, fire your physician.

AARP The Magazine carried an article addressing this very problem in its August/September 2013 issue. It is good reading and I highly recommend the article: “Is It Time to Find a New Doctor?”


http://www.aarp.org/health/conditions-treatments/info-08-2013/physician-patient-relationship.html

"It just isn't right" . . . Nelson Mandela

There has been uninterrupted comment on cable TV about Nelson Mandela following his death less than twenty-four hours ago as I write this. Mandela was profoundly driven by his dream of a democratic South Africa where all its people would be treated as equals. This dream, this passion permeated his being and was the molding force of all his actions. One fact in particular about this man of deep integrity and persistence has moved me deeply. I learned from Charlayne Hunter-Gault that Mandela’s consistent response to the existence of apartheid was simply: “It’s just not right.”

His deep passion for freedom and democracy expressed itself in that simple phrase and was trhe motivation for his life’s work. I have thought about how our society views aging and how this negative attitude of aging, called ageism, expresses itself too often in the oppression of our elders.

How does ageism show itself even among the most well-intentioned and loving people?

-- In the institutional approach to aging services where tasks are carried out and regulations/policies are implemented without spirit and without the priority of person-before-task;

-- In decisions that are made for and about elders based solely on their chronological age or their place of residence;

-- In the society-accepted practice of segregating elders from the rest of society. Carter Catlett Williams spoke eloquently of this from her own experience when she convened the annual Conference of the Pioneer Network this past August; http://pioneernetwork.net/Events/2013Conference/Convener

-- In any policy that is directed to persons solely on their chronological age;

-- In loving, middle-aged adult children who are convinced that they know what is best for Mom or Dad and force these decisions on the older parents;

-- The same attitude can prevail in well-meaning, good-hearted individuals who by election or appointment have some dimension of authority/responsibility for elders.

In every instance of ageism, of impersonal, institutional responses to elders, we must be that contingent who says, “It just isn’t right” and then follows that conviction with strong, appropriate, persistent advocacy, be that advocacy for ourselves or for others.

Reading and Re-reading

Earlier this week when I was enjoying the wonderful opportunity to make some homemade bread, I took advantage of the opportunity to listen to some podcasts on my MP3 player as I prepared and kneaded the dough. This particular podcast was from a program that originally aired on NPR’s TALK OF THE NATION back in March, 2011.
Rachel Hadas, author, poet, and professor was the guest. The topic was her book, STRANGE RELATION: A MEMOIR OF MARRIAGE , DEMENTIA AND POETRY which tells of her life as the wife of a brilliant man, George, professor of music at Columbia University and composer, diagnosed at age 61 with dementia.

A few things struck me in this fascinating 30-minute interview

Rachel used her intimate, long-lived knowledge of George in evaluating and analyzing the changes in his life and his ongoing needs. Rachel , in other words, took on the role of advocate for her husband. This reflected her role while he still lived at home and when she found it necessary to place him in a long-term care ‘facility’ as she calls it.

Rachel provides the podcast audience with a wealth of resources from classical and modern literature which describe and/or apply to the reality of dementia in a person’s life. I found Rachel’s descriptions of these literary references quite illuminating. In particular I appreciatede her reflections on the poem, “Walls” by the Greek poet, Cavafy.

With no consideration, no pity, no shame,
they have built walls around me, thick and high.
And now I sit here feeling hopeless.
I can’t think of anything else: this fate gnaws my mind—
because I had so much to do outside.
When they were building the walls, how could I not have noticed!
But I never heard the builders, not a sound.
Imperceptibly they have closed me off from the outside world.

She continues: “Clearly those walls beg for a figurative reading and you could say they are depression or old age or illness, isolation. But this time around the walls looked like dementia.”

Rachel also commented early in the interview that anything worth reading is worth re-reading. She says we miss most of the content in the first reading. Hearing that, I immediately thought of the Constitutions of Religious Institutes of women and men. When we go back to those documents and read them with new eyes we see visionary and challenging calls to read the signs of the times.

One of the signs of the times is the current demographics of the membership of Congregations of men and women religious. What if we read our Constitutions and other significant documents in the context of our present signs of the times? How would that change how we view the ministry of service to our own elder members?

If you are interested in hearing this podcasst, go to the following URL:

http://www.npr.org/2011/03/10/134428733/Spouses-Dementia-Leaves-Poet-A-Strange-Relation

Job postings and their impact on the organization

I find it fascinating to read ads announcing an opening for key positions in aging services. It’s sort of in the same vein in which I read obituaries, about which I wrote recently. An obit can tell ‘just the facts’ – birth, death, survivors, services, and which charities are preferred recipients of memorials. Such an obit reflects nothing of who the person was, how s/he influenced and touched those s/he loved, or what made him or her the unique person each of us is. The deceased person remains an unknown entity.

Job postings are much the same in certain respects, I believe. The content of job postings reflects the degree to which the organization is consciously mission-driven, and reflects the priorities of qualities the organization is looking for in candidates.

Here are two examples of postings for the position of Executive Director that I read just today. Each of these organizations is a church-sponsored, not-for-profit organization.

1.
A non-profit community with a strong foundation of faith and person centered care, is seeking a campus Executive Director who is responsible for leading and directing the community in accordance with resident needs, government regulations, and internal policies and procedures.

Successful candidate must possess a passion for serving older adults, Bachelor’s Degree (MS preferred), . . . . The post continues with a listing of educational requirements and nine skills the candidate should have.

2.
Historic CCRC with nearly 500 residents and 300 employees, on 100 acres, provides a modified Life Care program in the beautiful Shenandoah Valley

Applicants must possess skills in CCRC management, performance improvement and program development, finance and planning skills. Senior leadership experience essential. NHA and five years of experience required. MS preferred.

When the right people are not hired for key positions, an organization can and will face many difficulties, only some of which include high turnover, low morale among staff and executives, organizational listlessness, frequent crises that erupt because of the inadequate placement of key persons, and the list goes on and on. All are issues which affect daily life of staff and residents as well as the “bottom line” on the Income/Expense Statement.

On the other side of the coin, consider a good, qualified, value-laden candidate who is seeking a position. If you read each of these job postings through the eyes of such a candidate, which organization do you believe such a candidate would be drawn to?

Persons responsible for writing ads for job openings should consciously reflect on what the organization really needs most and see that those values and priorities are articulated in the job posting in order to attract quality candidates.

They get good care there

The New York Times has a blog entitled “the New Old Age.” Today’s posting, entitled, “A Beep in the Night”, recounts a daughter’s experiences with her mother during her mother’s last months. The column begins with the writer’s mother mimicking the doctors saying, “She’s confused; she’s confused.” That observation followed the mother’s awakening in her hospital bed at 3 a.m. and asking for coffee. “How hard could it be for someone to bring some decaf?” an aide says to the daughter.

The daughter, a physician herself, responds to this incident by taking every effort to assure that she is called at any time that her mother has any problem or is confused.

The column is a touchingly poignant account of a daughter’s solicitude for her mother at a time when her mother was so dependent on others. Reading the article brought to mind a phrase I often hear about nursing homes – spoken often – in a positive way – by people who have friends or family in the particular nursing home spoken of. “They get good care there.”

Of course we wouldn’t want any less for anyone we know, anyone we love, who is in a nursing home. We hope for and expect good nursing practices. What always gives me pause when I hear that phrase is another phrase: “Life is more than ‘care.’” Life is more than attention to the physical body. Life is about relationships,home,choice,respect, dignity,privacy, continuity of exercising preferences in daily life insofar as possible.

It is precisely these latter values that transformational culture change attempts to bring to life for residents in nursing homes. It is what “Culture Change” is all about. It’s putting the person before the task.

For more information on this transformational, humane movement to change the culture of aging and aging services, go to:

Pioneer Network
Culture Change Now
To read Dr. Feld’s post, go to A Beep in the Night