Aging in Place and Person-Centered Care: It’s About Love: Part I

What is “aging in place?’  Take a look at the 2012 Senior Law Handbook published by the Colorado Bar Association for some further information about this.     Aging in place means aging, coping with all of life’s challenges and frailties that the aging process can bring, while living in a home and supported by family and friends and community.  This “new” approach is quite old-fashioned, hearkening back to the days when elders lived among the general population, before “retirement communities” and a medical model for institutionalizing the sick and frail elderly.  But wait, there’s a lot more eighty- and ninety-year-olds on the planet, and what about those baby boomers?  Well, I’m not proposing any earth shattering solutions in this post; I’m just suggesting looking at a few things a bit differently.

The Colorado Coalition for Elder Rights & Abuse Prevention published their April-June 2012 newsletter  with the headline “Transforming the Culture of Aging: Self Directed Living in All Settings.”   Person-centered care for people suffering dementia is especially important in trying to hold the person “in their identity” their essential personhood, and not just putting them away in a place where they will be safe.  Person-centered care was developed by the late Tom Kitwood, a British physician who had some revolutionary ideas about dementia and how to support people suffering from dementia.  Read more about him here.    Bottom line for Kitwood’s approach is that personhood, human dignity – is unique and sacred.  This is a far cry from what many in our youth-glorifying and death-denying American culture espouse.  We tend to focus on the losses that an elder suffers over the course of their inevitable physical decline, and pity their loss of autonomy – regardless of the fact that our individual “autonomy” is largely a fantasy anyway.  Here’s a link to information about person-centered care and gaining in place relevant to dementia sufferers.    So what are we missing here?

We can start with looking at elderhood as a stage of human development, ala psychologist Erik Erickson.  His wife Joan Erickson published an extended version of “The Life Cycle Completed,” (published by Norton  in 1998), including her own chapter entitled “The Ninth Stage.”  She notes at the beginning of the chapter:  “we must now see and understand the final life cycle stages through late eight- and ninety-year-old eyes.”  Erickson at 105.  She characterizes “old age” as a stage of life that is focused more on loss (“dystonic elements”) at the expense of self-growth and expansion (“syntonic qualities”).  Erickson asks the question of how it is possible to send elders out “into the world” they had previously inhabited and into a facility to have physical (medical) care and comforts met?  This is a good moral question that we must continue to ask ourselves.

This standard of care is the prevailing standard for care of protected persons, incapacitated individuals for whom it is necessary for another person to make decisions about daily care.  These types of decisions are known as “substituted judgment” and are recognized by the law in both probate proceedings (for a ward or protected person in guardianship proceedings) as well as by agents and proxy decision makers under state law.  The “best interests” standard applicable to substituted judgment is touted as an objective standard.

So then why resort to institutionalization?  Institutionalization is less prevalent than it used to be, but why is it necessary? For a number of reasons obviously – among which there may be no alternatives.  From my personal experience visiting residents in skilled nursing facilities over the last seven years (as a volunteer para-chaplain), I can tell you that the people I see are there because they want to continue to live and the facility is their only viable option to provide necessary life-sustaining care.  Are there steps we can be taking as a society to more fully re-integrate the old of the elder population (people over 80)?  Absolutely.  Erickson proposes more parks in which elders can meet.   The next question of course is whether there will be an opportunity for them to be heard, to be recognized as bearers of wisdom, still having something to contribute.  Will anyone ask them or want to hear their stories?   This is the biggest hurdle as far as I can tell.  Why?  We have no effective model of “elderhood” in our country!

Joan Erickson focuses on the “doing” part of elderhood – to rise above, exceed, outdo, go beyond , to continue to create so that elders can continue to “become” – which she identifies cleverly as gerotranscendance.  Erickson at 127.  Yes, the “dance” is intentional.  How beautiful!  I have difficulties with her exclusive focus on the “doing” and “making” part of becoming who we are – what about just the “being” part that is really the focus of person-centered care – what does that look like?

Well, I’ve nearly run out of space for this post, but I will mention that this will be continued.  I’ll be taking an in-depth look at a book I’m reading right now called “Elders on Love: Dialogues on the Consciousness, Cultivation and Expression of Love,” by Kenneth Lakrits and Thomas Knoblauch, Parabola Books 1999. I end with a quote from much-loved author Paulo Coelho:

The wise are wise only because they love.

More about love and wisdom, particularly the wisdom of elders – in a subsequent post.

©Barbara Cashman

The 2012 Election Year and Elder Law

Elders in our population have historically been a consistent force of turning out in great numbers to vote.  As our population gets older, however, difficulties with mobility can have an impact on that visit to the polls.  I grew up, like most baby boomers, with excellent role models of voting from both my parents and my grandparents.  My paternal grandmother served as president of the League of Women Voters in Kansas City.  What are some of the challenges older people at the polling place face now? Many disabled and elderly voters face new difficulties at the polling place.  Read more here.

In terms of hot-button issues, probably the #1 is Medicare (no surprise, or perhaps it’s tied with Social Security).   Here’s a good article from the New York Times that discusses some of the changes proposed by Mitt Romney and his running mate.      This article refers to “Mediscare tactics,” a recurring election year phenomenon.

If you’re looking for more information, this recent post in Scientific American titled “Where the Presidential Candidates Stand on Medicare and Medicaid” is helpful as well

If you’re tired of all the polarity, intransigence and name-calling, you might consider looking at Project Vote Smart here.     They have email updates you can subscribe to as well as a blog.  Visit this site for bios, voting records, positions on important issues, ratings and the like.

And what about protected persons (those subject to a guardianship) and voting rights? Well, they can still vote!  They maybe institutionalized and may have lost many of their civil rights over their day-to-day decisions, but they have not been disenfranchised!

This year  will be interesting, as it is very evident we have come a long way from the early days when Florida Congressman Claude Pepper was the voice of the elderly voting bloc in Florida and served as an eloquent spokesman for so many elders nationwide.  The population of elders is much larger now, encompasses a wider range of ages and is politically more diverse than ever.

What is interesting is that as new requirements with voter registration and voter identification are being tested in many states, our population continues to age and the challenges of mobility, disability and ease of voting will continue to grow for this population.  This trend will continue into the future, as the numbers of the oldest of the old continue to grow as does the number of baby boomers going into retirement.  For further reading, check out this recent report from the Brennan Center for Justice at NYU law school here.     If you need to check and make sure you are registered to vote in Colorado, click here.  Whatever the weather – get out the vote!

Can A Person Thrive in the Face of Terminal Illness?

This may seem like a difficult question to pose, since much of the conventional wisdom in our death-fearing and death-denying culture encourages the terminally ill and their loved ones to put on “a game face” and “fight” until the bitter end.  Fight what exactly?  The inevitable?  What is the point in that – each one of who is living will die someday.  So how did we develop this idea that somehow “our disease” is not really our own but rather something that has come upon us to relieve us of what is rightfully ours, some perceived entitlement to a life that we have envisioned as how it is supposed to play out?  Many survivors of terminal illness mark the disease as a transformation in their lives, while others simply view it in the broader context of life.  Each of us has our own way of living just as we have our own way of dying.  It is no surprise that modern medicine’s advances have fortunately separated us from the specter of early death due to chronic diseases and conditions that can now be successfully managed to extend life.  These advances have often come at a cost of separating us from death, treating death as failure of medical treatment, not as the inevitable conclusion of a life well-lived.  In case you’re wondering, I’m talking about adults and elders, not kids or younger adults . . .

So back to the title of this post – I admit it is not original but comes from this recent post by Rick Reynolds.  This is a great post, his answer is a resounding yes .  He recounts the story of a young woman who committed herself to “thrive” in the face of her struggle with terminal illness.  She embraced her fear, her grief, and sent it on its way so she could get on with the real work of her life – thriving.  Reynolds, a hypnotherapist, noted that this woman  lived more life in the three years after her terminal illness diagnosis than all of his other clients combined.

In her groundbreaking work “On Death and Dying,” first published in 1969, Dr. Elisabeth Kübler-Ross identified the dying as teachers and went on to identify five stages of grief:

      1. denial and isolation
      2. anger
      3. bargaining
      4. depression
      5. acceptance

How can we work through the difficult words, feelings, and conversations;  what can we  say as the end of life nears?   Life is fragile and uncertain!  Acknowledge fear and embrace it.  Fear can diminish in size when it is appropriately regarded instead of viewed from a far off vantage point.   Acknowledging, naming and embracing the fear can dissipate anxiety.  We can pretend the certainty exists in our lives, or we can actively negotiate the uncertainty.  How do we acknowledge fear and embrace hope in the face of our own mortality? Practice!  Here I’m thinking of Dr. Jerome Groopman’s book “The Anatomy of Hope” (2004: Random House), and in particular chapter eight “Deconstructing Hope,” in which he writes about his meeting and interview with psychologist and professor Richard Davidson. )  Davidson is also associated with the Mind & Life Institute  an organization dedicated to promoting cross-cultural dialogue concerning the advancement of scientific and spiritual understanding of how our minds work.)  Groopman writes about Davidson’s definition of hope as a feeling that has both cognitive and affective parts, which work together to provide affective forecasting and is something that most healthy brains can relearn.  The Anatomy of Hope at 192-95.  Indeed, there is hope for hope. . .

More about fearlessness – in the face of uncertain future and, BTW, isn’t all future uncertain, by its very nature? I liked this post about what can be lost as a result of tragedy – this another lesson from 9/11.  Watch the video of 9/11 survivor Roy Cohen here.

What survives death? Death is a mystery, but most likely not the biggest mystery.  The biggest mystery is love.  This is the basis of human immortality, because love is the only thing that survives death.  I want to mention Warren Zevon’s song “Keep Me in Your Heart,” the song he wrote after his mesothelioma diagnosis.  It beautifully combines love and fearlessness.  You can listen to it here.    And speaking of heart . . .  it was the author of one of my favorite books – The Little Prince (I have it in different languages), Antoine de Saint-Exupery who noted:

 It is only with the heart that one can see rightly.

We are not powerless in the face of uncertainty.  We can offer words and presence.  Presence is a form of compassion, and we can offer both to those struggling through or being with challenges from an illness.  What kind of words? Check out this article about how to offer comfort to those nearing the end of their lives.

Where is a person at the end, and how did they get there? This is another great article by Paula Span in The New Old Age series in the NY Times is “Where the Oldest Die Now,”   which cites to recent evidence that more elders are dying in their homes than in hospital ICUs.  I think we can call this progress, progress toward recognizing the humanity of death.