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Monday, June 29, 2015

Traveling to Omaha Tuesday morning

The Sisters of Mercy have a very intentional and active network around issues of aging and aging services for their own Sisters.  The individual in Omaha who is the staff person responsible for the overall program for the retired Sisters for the Mercy Sisters' West Midwest Province is Kris Sullivan, MHA, BSN.

Kris told me not too long ago that they (the group in Omaha, I believe) are looking at and working on what comprehensive professional preparation and continuing education should be provided for those individuals, lay and religious, who serve their retired Sisters in unlicensed settings where there are not federal or state regulations to guide them.

I invited myself to Omaha because I’m eager to learn about the thinking and the work on this ‘curriculum’, and the programs that are part of daily life there for the Mercy Sisters in Omaha. My knowledge of Kris, gained through a few phone calls and browsing their website has revealed a woman who is well prepared academically for her position and who brings such great energy and passion to her work.

Early this evening I went to Kris’ LinkedIn page and found the following ‘comment’ written by a person who regularly visited the Sisters there at their convent.  I include it here because it reflects such positive images of what life must be like for the Sisters and the staff at that Mercy convent. Clearly the scope of the work there goes far, far beyond “good (physical, nursing) care” and embraces every aspect of daily life.  I’ll share my experiences here when I return on Wednesday.

“Comment” on LinkedIn Page

I was a weekly visitor to retired Sisters of Mercy that I worked with when I was an elementary principal. I saw firsthand how Kristine and her staff took care of every need for these Sisters from health care and accommodations to activities and entertainment. Kristine put together a fantastic staff, provided needed training, supervised operations and did so with respect for both her staff and the sisters for whose care she was responsible. Outstanding administrator, great person.

Friday, June 5, 2015

When you see the picture of this elder, are your first thoughts "loss and diminishment?

This is Sister Adrienne Marie, a Sister in my Congregation of Sisters of Divine Providence. On Sunday she will note 75 years as a Sister of Divine Providence. This is a beautiful picture of a beautiful person -- beautiful inside and out. This 90-something-year-old woman reflects life, vitality, warmth, and a deep relational capacity in this picture. Thank you, Sister, for providing such a positive, affirming view of what aging really can be. On to Sunday's celebration in our beautiful Conventual Chapel!



Wednesday, June 3, 2015

“We are in the midst of re-aligning our practices with our mission... ”


“We are in the midst of re-aligning our practices with our mission... ” Thus read the first line of a letter to LeadingAge HR Listserv earlier this week.  It struck me as quite a significant statement. The writer was seeking information from her peers about a particular program in her community that clearly is valued precisely because it is aligned with her community’s mission.

“Mission-driven” is a term that has always stirred me, particularly since the beginnings of my work in aging services.  For me this term means that beyond the Mission Statement that may be framed and posted in the lobby and included in every marketing brochure, the mission is the wellspring of every practice, every policy, and every procedure in the workplace ‘where the rubber hits the road.’ Of course in licensed communities, many regulations frame policies. But the mission and values of the community should be wrapped around the technicalities of those regulations.

An exciting reality for me is that the mission of the community, its values and philosophy, in so many instances parallel the spirit and letter of the federally mandated minimum standards of care, ‘the regulations.’  If you are connected to a licensed aging services community, take a few minutes to see if you can discover those parallels, particularly in the areas of Quality of Life, Quality of Care and Residents Rights.

For Sisters and their staff who live in or serve Sisters (by election or by appointment) in a convent setting  that is not licensed, the parallel with these non-binding regulations is so evident.  We need only to read our documents and our Congregational mission statement with new eyes, the eyes that see the provision of aging services as closely aligned with justice, mercy and compassion. I invite you to read your documents again -- with new eyes.

Tuesday, June 2, 2015

“Best Practice”

Businessdictionary.com defines best practice as follows:  "A method or technique that has consistently shown results superior to those achieved with other means and that is used as a benchmark. Wikipedia’s definition adds this: “In addition, a ‘best’ practice can evolve to become better as improvements are discovered”

In a way the concept of transformative culture change within aging services organizations can be seen as a systemic ‘best practice’. The work of Sister Lucy, as a leader of Pennybyrn at Maryfield reflect this.  Pennybyrn is a continuing care retirement community near Greensboro, NC.  Although the “facility” had deficiency-free surveys as a matter of course, Sister Lucy felt that something just didn’t feel right. Along with some of her staff, she learned of the Household Model at an annual conference of the Pioneer Network.  Their organization was in the midst of major architectural renovations and the household model made perfect sense.  Pennybyrn moved from a good institution caring for elders to HOME!  still serving elders with the same clinical proficiency, but at HOME! not in an institution. 

The transformation at Pennybyrn was/is systemic because transformational culture change is not experienced just because certain programs or policies are part of the organizational life.  This transformation is the result of a shift of consciousness, a shift in thinking about aging and aging services, about organizational leadership and how it is exercised not just by someone or some few who hold a title, but from within the total circle of staff. A successful shift will result in a positive new way of life for staff and for residents.

Interestingly, even though transformational culture change cannot be equated with the presence of certain programs or policies, within those organizations moving toward culture change, certain “artifacts” are usually present.  Karen Schoeneman and Carmen Bowman developed the “Artifacts of Culture Change Tool” in 2006 which is available here.

This is a lengthy document, made so by the wealth of information it contains. In addition to providing the free-access tool (pages 22 – 31) it provides the rationale for including the various areas of nursing home life that make up the tool. There is also a section on topic-relevant research references and a general bibliography.

If you look at nothing else, study the tool.  It is not a government tool, or an enforcement tool. Finally, in the words of the authors, “The tool affords the opportunity for an individual home to gauge its progress and do its own benchmarking of where they are on a culture change journey.”

So there we are, back to where we began:  best practice as a benchmark and as part of a journey, an ongoing journey of transformational culture change, whose practices can evolve to become better as improvements are discovered


Monday, May 11, 2015

The Culture of a Community

© Imelda Maurer, cdp May 11, 2015

Yesterday I posted “Simply Caring” which included a powerful, simple picture with an accompanying commentary.  I posted that entry just hours after learning that the woman on the left, Dolores, providing a shoulder and a place of rest and comfort, had died earlier in the day.  That news came to me via an email from Jan who quoted from an email message sent to all the staff from  Allison Dolan, the Nurse Manager for the community”

Dolores passed away today at 8:40am at St. Luke’s Hospital with her brother holding her hand. She will always be remembered as Ms. Marvelous, who consistently complimented you. We will miss her dance moves and smile.

Many aging services communities have some way in which the death of a resident is noted and ritualized in a way that acknowledges and honors the deceased while remembering that person’s unique qualities and gifts to the community.  Such ritualizing also serves as comfort to staff who also, if they open their hearts to it, experience grief and loss upon the death of one whom they had served with compassion and competence.

My reading of Allison’s message was that she is a professional who has not suppressed her human emotions or vulnerability to pain.  She nurtures and deepens the sense of community in acknowledging individual and communal grief over Virginia’s death.

Sunday, May 10, 2015

Simply Caring

© Imelda Maurer, cdp May 10, 2015
Several months ago I was invited by Jan McGillick, a social worker, gerontology professor and colleague, to facilitate an evening event at an assisted living community which serves persons living with dementia. Residents and family members who were present were invited to gather in the living room to talk about their experience of friends and friendship throughout their life. At the end of a fascinating experience, Jan escorted me through the house to the front door.  In the foyer we both saw a sight which was literally “a Kodak moment.” I took the picture which is here.

  



Hoping for permission, which was granted, to use the picture, I articulated for the family members of each of these women the tender, personal yet powerful message of the picture:

This picture reflects simply and profoundly the human capacity to care and the human capacity for mutuality and relationships at all stages of life.  Though the disease of Alzheimer’s may prevent proper verbal articulation of these capacities and needs, they can still be experienced and expressed, particularly if the physical environment and the philosophy of services facilitates and honors the movements of the human heart.

In this aging services community, the environment is intentionally focused on “home” where individuals feel secure and have a sense of belonging. The image shows that one elder is allowing another to lean her head on her shoulder. The smaller, petite woman wants to sleep, but she does not want to go to bed. The care partners know this particular preference of the resident and it is honored. In doing so, even if by happenstance, a sense of community and of caring is experienced by the second elder in the picture.

This picture is precious for more than one reason: First, in what the picture reveals, in the stirring of the human heart upon seeing it.  Secondly, it serves as a powerful model when used to reflect how principles of person-directed living can be lived out in a setting that is home and where spontaneity is a normal aspect of an elder’s day. The picture opens the imagination of those in the helping professions who only have images or experiences of an institutional, medical-model style of “health care” where task and staff convenience take precedence over the centrality of the person.




Saturday, May 9, 2015

A New Look at Thickened Liquids


Dr. Alex Smith is featured in a fascinating six-minute video entitled, "The Thickened Liquid Challenge."  Similar to the popular ice bucket challenge to raise awareness about Lou Gehrig's Disease, Dr. Smith, San Francisco Veterans Administration Medical Center, challenges health care providers to take 'the thickened liquid challenge,' experiencing what it is like to drink your ice tea, coffee, coke, orange juice, or water with thickener added.  The video pictures several individuals as well as groups of healthcare professionals taking the one-time challenge. Among the responses was a comment that 'it tastes like paste.'

Dr. Smith said  very few of the health care professionals who were challenged to drink only thickened liquids for twelve hours succeeded in doing so. Smith weighed this reality against the fact that some persons, especially those living with dementia, are often prescribed 'thickened liquids only' for years!

Evidence from video swallow studies shows that thickened liquids prevent fluid from being aspirated into the lungs, rather than going into the stomach. Beyond that there is "no evidence in real life that putting someone on thickened liquids is more beneficial than harmful." There are some harms associated with thickened liquids, one of which is dehydration!

The final decision, Smith says, should be a very individualized one.

I highly recommend viewing this informative, well-done video here.






http://makingsenseofalzheimers.org/stories/thickended-liquid-challenge/


Monday, April 6, 2015

Words

There was a letter to the editor in the April 6th issue of the New York Times from a physician, a geriatrician.  Dr. Barry Farkas’ letter refers to an earlier NYT feature article on adolescents facing death and having a say in how they want to live those last weeks and months. Dr. Farkas makes this point: “Language is so powerful that it not only reflects what and how we think of things, but it also directs what and how we think of things.”  

I've written before in this blog about the power of language and the conviction that if we change our words we can change the culture.  One obvious example of how the broader culture profoundly acknowledges the double function of words (to both reflect and to construct our concepts) is in the totally unacceptable use of the “n word” under any circumstances. Well and good.

In our society where ageism is so deeply embedded in the culture that we don’t recognize it, it behooves us to examine the words we use about aging, older adults, and aging services. Let’s look at a few terms that are still too prevalent in aging services communities:
If you need supportive services, do you want to move in to a community that provides those series, or do you want to be admitted? Clearly, one is admitted into an institution: a hospital, a university, the legal profession (‘admitted to the bar’).  If we want our nursing home to be HOME, do we admit new residents or help them move in?
In many nursing homes, meals are prepared by the dietary department.  What if we said food services instead? The food already tastes better, and the meal time seems more like the social act that dining really should be.
If a person in a nursing home needs assistance with meals, is that person’s dignity better recognized by describing her as a feeder or as Sharon, who needs assistance with her meals?
Nursing homes sprang up in our country from two pre-existing institutions:  the county almshouses and hospitals.  Gawande addresses this historical reality well in his book, BEING MORTAL.  It’s time to move our thinking from nursing home as institution to nursing home as HOME.  One way to initiate that move is to consciously choose our words because “Language is so powerful that it not only reflects what and how we think of things, but it also directs what and how we think of things.”  


Tuesday, March 3, 2015

Which Side Are You On?

There’s a new book out entitled “The Age of Dignity” in which the author makes the point that America had better get ready for the “elder boom”, referring to the 10,000 “baby boomers” who are turning 65 every day in the United States. The book addresses the reality that by 2050, 27 million Americans will need varying degrees of supportive aging services. 

In a recent National Public Radio interview, Ai-jen-Poo, author, says the following: “The way that we approach aging and dying in this country is from a place of scarcity and fear.  And what this book is saying is that getting older is actually a blessing and an opportunity.  Living longer is about loving longer, learning longer, teaching longer, and connecting longer, if we figure out the supports and infrastructure to make all of that possible.”

So Ai-jen-Poo says we Americans approach aging and dying from “a place of scarcity and fear.”  Doesn't the term diminishment fit here?

After articulating the positive aspects of aging, the author says that all this is possible if we ‘figure out’ the necessary supports.  Doesn't the term Culture Change fit here?

What do you believe about aging?  Do the concepts of diminishment and decline so totally encompass your view of aging that you see it as a time defined by depression and loss?

Do you see your future in a traditional long-hall nursing home
n  That is run like a mini-hospital,
n  Where one’s days are determined by staff-imposed schedule and staff convenience,
n  Where a common sight is slumpers in wheelchairs -- those are residents who have totally withdrawn within themselves because the external environment is unbearable,
n  Where meal time is spent in interminable waiting at assigned tables, where waiting time and meal time are spent in silence,
n  Where “Activities” have replaced what really gives life: Engagement?
If you see aging and/or aging services in the ways described above, then you are among the multitude of Americans who view aging from scarcity and fear.

What are you willing to do to change the culture of aging and aging services in our society? If one is not changing the culture, s/he is sustaining it.

Come on, Prophets, let’s “sing to the lamentations the music that is in the Heart of God.”  (Carol Zinn, CSJ, Presidential Address, LCWR Assembly, August, 2014)

Wednesday, February 25, 2015

“I’d Step in Front of a Freight Train for Her.”

Those words were uttered by a woman as I spoke with her by phone recently.  This woman, whom I’ll call Jean, was addressing her conviction that we all need advocates to get through life well. She talked about her own advocacy in companioning her mother through the later years of her life as she battled dementia and faced ever-increasing need for supportive services.

And now Jean’s good friend, for whom she would ‘step in front of a freight train', is herself in a nursing home. Jean is a good role model for all of us.  Part of loving our neighbor as ourselves – one of the two great commandments – is being the advocate for our neighbor when he/she is more frail, more vulnerable, more marginalized and thus more dependent on another for his/her voice to be heard and honored. The advocate is the voice that demands:
       “I’m in charge of my own life.” 
       “I want choice to be a part of my day regardless of my mailing address.”
   “My life in a nursing home must be about more than safety and physical care. Rather, my life must be about purpose and meaning, about relationships, about beauty. All these aspects of life call from within to be present, honored and active regardless of one’s mailing address.” 
   “Moving to a nursing home should not feel like an imposition of a life sentence.”

Thank you, Jean, and all of you “Jeans” around the globe who hear that moral call of responsibility for the dear neighbor.

For whom are you called to be the advocate, to be the voice for the voiceless?  Who will be there for you when and if you need an advocate, a voice for you when you cannot speak?




Tuesday, February 10, 2015

BEING MORTAL Documentary on PBS TONIGHT



I have reviewed this excellent book recently on this blog. I received an email just this morning that a documentary has been produced and is being shown TONIGHT February 10th on FRONTLINE, PBS,

This is a succinct statement of the book of the same name by Atul Gawande, MD and the Frontline documentary. “The true challenge is combining all our medical knowledge and skills with the art of communication, to allow our patients to choose how they want to live—all the way to the end.” (emphasis mine)

Check your local PBS station for exact scheduling.  If you miss the live TV program, you can watch this and many other Frontline programs by going to the website here

Friday, February 6, 2015

The Morning Report

Do you remember that musical piece from The Lion King? I don’t have the talent for making my ‘morning report’ rhyme, but my reading this morning from news articles I get as a member of Leading Age seem to focus on a couple of important concepts around aging and aging services that I want to share here.

First, LeadingAge posted a video which addressed the question: “Should continuing care retirement centers expand into home and community based services (HCBS)?” Along with lots of good business and finance-related information, the speaker made the point that using HCBS allows the older person to remain in his/her own home.  And, the speaker continued, ‘That’s what everybody wants.’ No surprise there! The number of Americans living in nursing homes is not keeping pace with the growing number of Americans 85 and older. It is because there are more options for services outside the nursing home, options that allow the individual to remain at home and receive needed services there!  Additionally, HCBS services are less expensive than skilled nursing home services. That sounds like a win-win doesn't it.

In a way following from that very concept about the primacy of HOME, LeadingAge posted an article about a particular member organization where there is a focused emphasis on language. I’ve written about the impact of the words we use before on this blog.  These are the two articles: “If You ChangeYour Words You can Change the World” and “What’s in a Name

The LeadingAge article spoke to the reality that ageism is alive and well. This executive is quoted at the very end of the article about how our society generally views and thus treats elders: “It’s the last group or class of citizens in this country that we say it’s OK to institutionalize (emphasis mine) and it’s OK to marginalize  (emphasis mine) — in advertisements, movies and popular culture,”

In truth ageism is so embedded in our society that we do not recognize it many times. -How many of us accept without question policies that impact us personally and that are operative at a certain chronological age?  Are you aware of any such policies in your life?  I'd love your comments!

This prejudice of ageism should be rejected and protested with as much sense of outrage as we reject and protest racism or sexism.




Wednesday, January 28, 2015

Mystery and Transformation – Not that “D” Thing



Earlier this morning I was re-reading Carol Zinn, SSJ’s Presidential Address to the 2014 LCWR Assembly. The Assembly theme was Holy Mystery Revealed in our Midst. Carol points out that Mystery resides in the Heart of God and is revealed “to those of us who put our ear to God’s Heart, listen carefully and follow freely no matter the cost.”

Carol’s references certainly refer to Religious Life as we are experiencing it today. We are in a state of great shift. In twenty years there will be a whole new face to religious life in the United States, both literally and physically.  But as I read Carol’s address, I see the promise of Mystery, the promise of Transformation even when the way is not clear.  The image of the chrysalis kept coming back to me with its unexpected and mysterious transformation into butterfly.

Yesterday I started to read another article, this one also about religious life. I didn't get past the first paragraph, though I will have to go back to it. The Sister-author begins, “In being asked to reflect on congregational diminishment ….” Admittedly, when I see the word ‘diminishment’ used in the context of religious life, I have a visceral reaction not far from vehemence. Why? Because diminishment means a lessening of. The Merriam Webster Dictionary provides this definition of diminish: “to be or to make seem to be smaller or less important.”

Sisters in the United States do not believe that religious life is less important.  We believe this in the face of fewer new members. The broad response to the Apostolic Visitation was that we Sisters grew in solidarity and in confidence. There is a sense that we are stronger now than at the beginning of the Apostolic Visitation.

For these reasons and more, we do a great disservice to ourselves and to those others who are the receiver of our word ‘diminishment’ when it is said or written within and/or among congregations of women religious so freely and without any descriptive qualifiers.  When the “d” word is used, are Sisters talking about a smaller number of members?  If so, then “diminishment of numbers” is the correct description and terminology. Are Sisters talking about the higher median age, the changing proportion in the number of those Sisters who are “retired” with those who are in “active ministry?”  I fear this is the case most of the time. I fear that too many Sisters really do – at least subconsciously – view the process of aging, which gives us our higher median age, as a time of loss and diminishment. That’s what all of society yells at us from every conceivable source.

As a gerontologist, I bring the good news that such a view of aging is totally off base. That’s grit for lots more blog entries!  Today, I put the “d” word and its unqualified, unconscious use within the context of Carol Zinn’s Presidential Address.  What we too readily see as Congregational loss and diminishment is rather Holy Mystery. We are called by the signs of the times to discern what is emerging, to live into a future we do not know, but which we trust because we have our ear to the Heart of God. The colorful, lively caterpillar with voracious appetite may seem to be regressing as it spins and hides itself in a colorless, hard cocoon. And that caterpillar, living in darkness, cannot imagine the beautiful creature that will emerge totally transformed.

We are in Holy Mystery. No matter how dark, no matter how empty the answers to our questions come back to us, we are emerging into the future. Our task is to be certain that our ears are at God’s Heart, that we “listen carefully and follow freely, no matter the cost.”

Sister Carol Zinn’s Presidential Address can be accessed  here







Friday, January 16, 2015

HIPAA, Community and Privacy: How to Honor it All Part Two of Two



Yesterday I shared the story of Fred and the medical emergency that he experienced, noting that when asked by a neighbor what had happened to Fred, I could say nothing.

There was another event in that same setting which involved a non-emergency situation. “Joe” was scheduled for hip replacement. When I visited with him and his wife, I asked Joe what if anything he would want the other residents to know about his impending hospitalization. Joe asked me to tell the residents of his upcoming surgery and to ask for their prayers.  Not too many days after his surgery, Joe’s wife called to say that her husband had been discharged from the hospital that very afternoon and he was home! I went over to their cottage for a short visit, delighted to see Joe’s recuperation coming along so speedily.  I offered to deliver their evening meal, saving Joe’s wife a trek to the dining room in the dark.  As I was leaving the kitchen, two meals in tow in a large plastic bag, I noted to all the residents that my bag held supper for Joe and his wife, that he had just returned from the hospital. There was a spontaneous burst of applause from the resident-diners.  What a marvelous expression of community

In another setting, an Assisted Living Community, “Shirley”, a diminutive, warm and gracious person, required surgery at the earliest possible date. Unmarried, Shirley’s cousin and niece were there for her and they were coming to take her to the hospital mid-morning. I announced to the residents at breakfast, with Shirley’s agreement, that she would be leaving around 10:00 for the hospital.   I had suggested to the staff earlier that they may want to wish Shirley well if they saw her that morning.  What happened was an amazing show of solidarity and bonds of community.  When Shirley’s family members arrived, I went with them to Shirley’s apartment.  When we turned from her apartment  down the corridor to the front entrance, there was a virtual “honor guard” of about a dozen residents and staff, each wishing her well, promising prayers and telling her to hurry and come back home! Shirley was moved beyond words, as were her cousin and niece.

Not everyone would want that attention and may opt for ‘no announcement.’  But the option was offered -- that’s the crux, I believe – and Shirley welcomed it. 

Lastly, I share a story surrounding the death of one of our Sisters three years ago this week. Madlyn was a good friend and also a classmate since high school days.Our Superior, Sister Ann, posted notes about Madlyn a few times during Madlyn’s last week of life. Of course Ann shared what Madlyn wanted shared. What a comfort it was to read Ann’s words that Madlyn (who at that stage did not want company) was at great peace, to read that she was having dreams of “beautiful flowers and loving people.” We were able in a very real way to accompany Madlyn during those sacred last days and nights.

Carter Williams, noted social worker and activist in transforming the culture of aging services reminds us that “relationships are at the heart of life. And that does not change as we age.”


Taking that proactive step of asking an individual what she wants the community to know, what she wants the family to know, acknowledges and honors the place of relationships in the life of that person, and her place in the life of the community. If information is shared within that circle, relationships and bonds do undoubtedly deepen. Community is expressed, experienced and deepened in those situations where the affected individual intentionally chooses to share, with limitations that she herself sets, something about her journey.  For  community members, we have shared a common journey in some way or another, more intimately or not.  When the concepts of “privacy” or “HIPAA” are erroneously applied, we all suffer a loss.

Thursday, January 15, 2015

HIPAA, Community and Privacy: How to Honor it All

When I was at our motherhouse two weeks ago, one of the Sisters with whom I lived in community some forty years ago told me that she was going to have a particular medical procedure done later that week.  She feared the results would be a diagnosis of cancer. Yesterday she wrote to me that indeed that is exactly what the procedure revealed. This morning this Sister posted that news on our Congregational/Associate electronic bulletin board, indicating a surgery date and asking for prayers.

In my e-mail to her earlier today, I include this note of thanks along with my promise of prayers:

I want to thank you for sharing your news with us.  I know that privacy is a word bandied about much, and many times I feel that some distortion of its meaning keeps us isolated from each other.  Each of us has the right to decide what and how much we want to share with any individual or group.  Your sharing enables me and so many other Sisters and Associates who know and love you to accompany you more closely and meaningfully on this journey. It deepens our bonds of community and sisterhood.  Thank you.

Privacy is highly valued in our culture. Additionally, if we are healthcare providers, the legal aspects of privacy under HIPAA* come into play and strictly limit what health information can be disseminated and to whom.  Note that HIPAA’s legal obligations bind health care providers, not family members or friends. What binds the actions or words of family members, friends or any other non-healthcare provider is the affected person’s right to privacy.  This honoring of privacy is an ethical issue of long standing, binding non-health care providers eons before HIPAA was ever dreamed of.

As a director of an Independent Living retirement center, I remember an emergency event which entailed calling an ambulance to the cottage of one of the residents. As the ambulance pulled away, one of the neighboring residents came from his cottage to ask what had happened to “Fred.” Of course I could not provide any information; the resident understood that.  That particular incident resulted in Fred’s hospitalization for some time. When he did return home, the residents gathered round his table in the dining room, long after all the dishes had been removed, to share good conversation and express their gratitude for his return home.  It was an expression of community.

While honoring both the legal constraints of HIPAA and the ethical right to privacy, there are pro-active steps that can be taken in health care situations that deepen the bonds of compassion, community and friendship.

Read about that tomorrow

*If you want to know more about HIPAA, the Health Information Portability and Accountability Act, go here








Tuesday, January 6, 2015

I Just Got Called a Little Old Lady!



San Antonio International Airport
January 6, 2015   

I was first in line to approach the next available agent to get my boarding pass. An agent became available, but I could not move immediately because a family with several young, well-behaved children was crossing  directly in front of me. I think I automatically smile when I see children, and I was probably smiling when the agent caught my eye.  A woman who, from her accent, I later surmised might have been from the Caribbean Islands.  She smiled at me and said for everyone to hear, “There is a smiling little old lady, a sweet grandma.”

To say I was caught off-guard would not be a hyperbole. I approached her station, still smiling, and said, “A little old lady I may be, but a grandma I am not. I am a Catholic Sister.”  She was gracious and efficient in getting my board pass for me.  She was very pleasant and there was no doubt that her spontaneous description of me was not in any way done with a demeaning or pejorative intention. As I thanked her, I asked her, because I had forgotten, what words she had used to describe me as a grandma.  She said, “Sweet. Someone who bakes cookies for her grandchildren.”

For my readers who have never seen me in person,  I’m 5”6” -- 1 ½” shorter than in my earlier years. I’m not svelte, but I’m not obese. I’m not little.

But the airline agent’s use of this often-used phrase never refers to these physical characteristics. Rather it reflects the perceptions of age in the eye of the viewer in the context of our society’s view of aging and older adults. “Little old lady” lumps all older women together as a group of women with common characteristics. One little old lady is like every other little old lady. We've all heard stories, have perhaps, for shame, even told them, with lines that begin, “There was this little old lady” or “there were two little old ladies ---.” Images and concepts come to mind when this phrase is used or heard. Think of the descriptive words that come to mind when YOU hear “little old lady.”  Do you automatically think, for example, university professor, immunologist, cancer survivor mentor, world traveler, executive director, or are the images more like behind the times, not really too ‘swift’, over the hill, living life with very limited hopes or dreams, etc.

After I got through security, I HAD to call a few of my friends and relate this experience. My telling of it involved much laughter on both sides of the telephone conversations.  I’ll have to ponder the why of that more deeply, but my first thoughts are that it is just my spontaneous response to the actual experience of this totally unexpected event coming from a stranger.  And this woman had no awareness of the negative, pejorative implications of this phrase. I do feel very good that I didn't feel insulted. I’m happy I laughed and shared this experience. I feel good that I can say without embarrassment or apology that I am an older woman – but not as old as I’m going to be, God willing!

Now this older woman has a plane to catch!








Friday, November 28, 2014

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.



Thursday, November 20, 2014

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.

Sunday, November 9, 2014

“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.









Friday, November 7, 2014

“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.”

Thursday, November 6, 2014

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.




Wednesday, November 5, 2014

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! 



                                                                                                       

Sunday, October 5, 2014

"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

Tuesday, September 30, 2014

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. 

Monday, September 29, 2014

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?


Sunday, August 24, 2014

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.






Wednesday, July 16, 2014

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!

Monday, July 14, 2014

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 (2nded.)Minneapolis. Augsburg Fortress. p xxiii.