Aging, Meaning and Memory

Medicine Bow National Forest

Medicine Bow National Forest

This is another contemplative post – so please forgive me.   I am preparing for a retreat on this exquisite topic of memory. . . . !   Since I find the topic of spirituality and dementia fascinating, I have been reading “Finding Meaning in the Experience of Dementia: The Place of Spiritual Reminiscence Work,” written by Elizabeth MacKinlay and Corinne Trevitt (published in 2012).  I especially enjoyed reading chapter ten “Grief is part of Life,” that speaks to much of my estate planning work with elders and their loved ones.  It begins:

Loss of relationship either through death or through geographical separation is closely tied to the meaning of life.  Meaning does not cease to exist because a person is dying; in fact, it is in facing death that it can be possible, perhaps for the first time, to see the meaning of one’s life.

Finding Meaning in the Experience of Dementia: The Place of Spiritual Reminiscence Work at 171.

Is our memory informed by our experiences and accordingly limited to our perception alone, or do we have the ability to further construct the memory so as to make it a memory of our whole being, as opposed to some event recalled which can be verified by another?  Therein lies some of the quantity versus quality aspects of memory . . .  but I am focusing today on this topic of memory in the context of aging and meaning.

So much of our important grief work is pushed aside in our death-denying and youth-glorifying culture.  I think this is a big part of the anxiety and depression and despair that so many of us struggle with in our culture because we do not see or otherwise recognize the inherent meaning of loss of youth and dying and death.

Memory is a phenomenon that is both individual and collective.  So to whom does memory belong or to whom should it be attributed?  What part of cognitive decline implicates memory and what is it that we are talking about when we use this term “cognitive decline?”  This can of course be age-associated and within “normal” limits or it can be identified with a disease process, such as the course of dementia of different types.  How do we distinguish the aging process that occurs naturally and that leads inevitably to our death from that process associated with a disease?  This may seem like a straightforward question – but I think it is far from that!  When aging becomes inextricably linked with decline in a way that is viewed as a disease process, we are essentially denying death, killing it off as the culmination of life and viewing the whole aging process and our mortality as a disease, some kind of shortcoming in our biology. If you think I am exaggerating about his, do a search on Aubrey de Grey and his so-called longevity science. . .

Dementia can further complicate a grief process as well.  Even the term “anticipatory grief” sometimes used for grief for the loss of a loved one with dementia before they die – the loss of relationship and the outward self – implicated the complexity of the grief process and the context for the grieving of surviving loved ones.

So now I will turn to the third aspect of this post’s title – memory – to connect the aging and meaning aspects.  What is memory?  Aldous Huxley wrote that “every man’s memory is his private literature.”  In “The Life of Reason,” George Santayana stated that “memory itself is an internal rumor.”  In this respect, we could say, that the memory belongs to the person.  But what about the memory that we share – isn’t that memory too?

What is it that we see and that we call memory?  In “The Marriage of Heaven and Hell,” the poet William Blake observed “If the doors of perception were cleansed every thing would appear to man as it is, Infinite. For man has closed himself up, till he sees all things thro’ narrow chinks of his cavern.”

So does memory free us from the constriction of our lives or does it enslave us to our experience of things past?

It seems that once again, I have asked far too many questions than could be answered in a blog post (or perhaps even a lifetime?!) and with that said, I’ll conclude with Friedrich Nietzsche’s observation that “the existence of forgetting has never been proved: we only know that some things don’t come to mind when we want them.”   Yes, there will be more on this topic . . .

©Barbara Cashman  2014   www.DenverElderLaw.org

Have You Had the Conversation Yet?

Shadow Selfie

Shadow Selfie

Yesterday morning I attended an informative program put on by the Colorado Guardianship Alliance (of which I am a member) which featured palliative care specialist Dr. Hillary Lum, speaking on Advance Care Planning, Palliative Care and Hospice.  I recently posted a short blog which featured an interactive meeting put on by the Life Quality Institute which featured The Conversation Project.  I returned from the meeting with a helpful booklet that is loaded with end-of-life facts and which can be used to facilitate the conversation which most of us say is really important to have (about end-of-life wishes) but that the majority of us have not yet had with a loved one.  I met with new clients this afternoon and was able to give one of the booklets to them, so I will be able to hear how it may help them have the conversation and communicate wishes with their adult children.  I’ll keep you posted.

By the time you get to be “a certain age” (okay, I’m celebrating a 50-something birthday next week, so please pardon attention), you have most likely had some experience with a chronic or terminal illness of a loved one or a death of a family member that did not die a good death.  Yes, I said good death.  Death is part of life, is contained within life and so I think if we can talk about quality of life we can also talk about quality of death.

Palliative care and hospice care focus on the still much misunderstood concept of quality of life medical care.  Remember the “death panels?!”  I don’t know where people come up with this stuff, but there are folks who think they exist . . .  maybe we’ve watched too many B movies of the sci-fi genre! Here’s a great post by a palliative care doc about those nonexistent faceless federal bureaucrats.  Dr. Lum (getting back to my original topic now) spoke succinctly about the distinctions between palliative care and hospice care.  She shared a great resource called “fast facts” – you can google eperc fast facts and get the Medical College of Wisconsin’s really informative website.  Fast Facts and Concepts provides concise, practical, peer-reviewed, and evidence-based summaries on key topics important to clinicians and trainees caring for patients facing life-limiting illnesses.  It has straightforward descriptions and answers a lot of questions you may not have known to ask about palliative and hospice care and the medical issues attendant to things you might ask your doctor about.

So while I’m on the topic of resources relating to advance planning, the ABA just published its August issue of Bifocal which features as its lead article “Advance Care Planning in a Nutshell.”  Sabatino focuses on the two most basic question we need to tackle early on in the process: (1) Who do you select as a capable, competent and conscientious health care agent (a/k/a surrogate decision-maker); and (2) What kind of information and guidance can I provide to that person and perhaps other loved ones about what I want and what I don’t want in this context.  For some of us, these questions are not so difficult, we may think “my kids already know what I want” or “my spouse is a good mind reader” – but then there is the rest of us!  We may think it’s not good enough to be general and not so detailed about our wishes, that this kind of conversation or documentation requires a fine-tooth comb.  Not so!  While it’s true I recently purchased a crystal ball, I have yet to perfect my skills at predicting the manner and circumstances of a client’s death (hey, wasn’t that an X-Files episode, back a few years?).

One of the reasons that lots of details about end-of-life wishes aren’t really helpful or required – even if we have a chronic illness that limits our life, is that we cannot know all the details around how we would want another to choose in the event we were unable to choose or couldn’t communicate.  Hence, the focus on values and priorities, to let the big picture of what is important to you guide the conversation – and not let it get bogged down in details that will probably never apply.  I think you’re getting my drift now, that it’s a good idea to inform your health care agent about those three aspects of making informed health care decisions: consider the risk, the burden along with the benefit – and how they play out in the context of your values about health care.

I will close with this – while our culture and the American medical-industrial complex has a ways to travel in terms of getting more folks educated about quality of life focused care at the end of life, the Project on Death in America is helping make serious headway in getting better attunement toward compassionate care for the dying.

 ©Barbara Cashman 2014   www.DenverElderLaw.org

 

Dementia, Music, Identity and Memory

 

Lantana and Friends

Lantana and Friends

 

Recently my colleague Kristin D. mentioned an NPR story about the Sundance award-winning documentary film “Alive Inside” – she knew I would be interested in it and I did get a chance to see the film at Chez Artiste.  I enjoyed this movie about music that transforms persons with dementia on several different levels.  If you’re curious about it, take a look at the video clip on YouTube that features Henry.  Henry is a resident at a skilled nursing facility (SNF) a/k/a “nursing home” who was, before getting headphones and an iPod loaded with some of his favorite music, mostly withdrawn and typically lost inside himself.

One of the music excerpts featured in the film is a song by Cab Calloway. This clip is a fave of mine (it’s got some pretty tight dance moves by the Nicholas brothers) and the song was covered by Joe Jackson in the 1980’s.  I grew up listening to my parents’ favorites: Ella Fitzgerald (who sang some scat from time to time), Duke Ellington and Oscar Peterson.

This film resonated with me on several different levels.  First, I have personal experience with the sort of “time travel” that music can perform for someone with dementia.  In a post I published about sixteen months ago, I recounted an experience I had while working as a volunteer “para-chaplain” in a SNF.  I had traveled to a local SNF to lead a holiday service for some residents and because I was lucky enough to be accompanied by a guitarist, at the end of the service I sang an old Yiddish song called Oif’n Prippitchik.  About midway into the song something very interesting happened.  One of the residents who attended was a woman with very advanced dementia who, it was reported to me later, had not spoken in over a year.  She started first to hum and then sing along with the song.  She spoke about her grandmother.  The song had transported her right back to a happy memory of childhood, when her grandmother had sung that song to her.  By the means of music, hearing that melody – she was moved in a sort of time travel.  I was most certainly moved witnessing that event.  Another story of music as a means of transport for the spirit comes to mind, it is from Megory Anderson’s book Sacred Dying.

A basic premise of the film is that people are not human machines.  Often what we see on the outside – when someone is old and frail and seems to have lost so much capacity to be the person they once were – is not the real picture or a complete picture.   Even when we see a loved one or a stranger in such a situation, we might shrug and say to ourselves “he’s not the same person anymore” or we may grieve for what that person was and doesn’t appear to be any longer.  We focus on the losses and often ignore what is left, however difficult or challenging it is to recognize.  It is often difficult to see a person there, who remains – despite the label of a diagnosis or condition that changes them.  Doesn’t all of life change all of us?  It made me think of Tom Kitwood and his legacy of person-centered care, based on the idea that people with dementia have much to teach us.  Yes, there’s a blog post I’ve written about that as well.

Whatever it is, it is the being, the timeless in us (identified generally by the neurologist Dr. Oliver Sacks as a part of the brain that is often left intact by dementia’s onslaught and ravages elsewhere)) – that is the place where music reaches through, past all the mechanical breakdowns and plaques and tangles of dementia, of Alzheimer’s or some other variety of dementia.  In the film, it is apparent that the music’s effect on the residents is to re-animate them.  The music gets through in a way that other communication cannot and the music helps the residents re-member, to inhabit their bodies and lives in ways that are astonishing.  Our basic human need to help others who are suffering and withdrawn is met by the residents’ responses.

After I saw the movie I wondered – should our end-of-life preferences, as stated in an advance directive or other documents, list our favorite music choice?  Perhaps a line on the form would ask: what music would you like to hear if/when you get dementia and become remote?  I know the music preference is sometimes done for memorial services . . .  but why wait?!

Perhaps I will write more in the coming months about the wisdom of aging, aging is what we are designed to do as adults – so why is it that our death-denying and youth-glorifying culture diminishes this process and its mysteries, this important stage in life that many of us hope we are lucky enough to encounter, enjoy and pass through?  Does our American culture’s emphasis on individuality and the capacity-focused, independence of the “rugged individualist” sometimes hamper our acquisition of wisdom or does or culture simply place a lower value on it . . .  because wisdom often comes with age and experience?  Here’s an interesting article in The Economist from a couple years back with some insights about culture and wisdom.  Yes, this post has many rhetorical questions!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

Conscious Aging, Memory and Longing

Tex and Barb at Medicine Bow  Lodge & Guest Ranch

Tex and Barb at Medicine Bow Lodge & Guest Ranch

The theme of this post is about remembering and forgetting, for a number of reasons I suppose.  I didn’t forget to publish a post last week, but was absent, away from my everyday for several days, remembering how to ride a horse (hence the picture of me and my trusty mount Tex, a slightly cantankerous nine-year-old gelding who loved to snack on the abundant flowers).  Forgetting often overtakes us on many different levels.

Plato’s fascination with theory was an early way out of the direct experience of being human. Thinking about our human experience is a well-recognized way of distancing ourselves from that experience (even if we don’t think about it in those terms) and is itself a form of forgetting.   Recent works in neuroscience continue to wrestle with the theory of what it is to be conscious.  A recent favorite of mine is Phi: A Voyage From the Brain to the Soul (2012), by professor of psychiatry Giulio Tononi.  His work is well-written and artfully illustrated and I liked especially his chapter 17 entitled “Galileo and the Bat: In which it is feared that the quality of experience cannot be derived from matter.”    In the nine page chapter, Tononi tells the story of the cave (hey, doesn’t that sound like Plato?) and the demise of the bat who was one of its inhabitants.  It is a beautiful illustration that questions how science can describe consciousness – either as a measure or a quality. And further – what can determine it (consciousness) when we humans share the same basic infrastructure or what would seem to be the physical architecture of awareness but that gives rise to so much variation.  Where I part ways with this is in the search for the piece of the brain that contains consciousness, the idea that the quality of consciousness is still determined by some quantity or configuration.  I think this has been previously attempted . . . !

So, if I might suggest an antidote to all these measurable, reducible, objectified search tools, try The Reign of Quantity and Signs of the Times, by Rene Guenon.  I don’t pretend to understand or agree with much of what he had to say, but I do think his point that the immeasurable quality of space is the real space (not the quantifiable space) is refreshing to read and offers much hope for finding a way out of our collective forgetting that plagues so many of us on an individual and collective level.

Another type of forgetting is dis-integration.  This is the reverse of what memory has been described as by Daniel Siegel in Mindsight: Memory is a layering of our experiences which have been processed and encoded, and the integration he describes occurs at a horizontal (left and right brain), vertical (from the lower limbic region up to the cortex), and more subjective integration that includes our personal story, present state of mind, time and the interpersonal element of integration.  The last part – interpersonal integration – Siegel describes as “the ‘we’ of well-being.”  Mindsight, passim at 71-76.

What do we remember and what do we forget? So I return again to the New Yorker article “This Old Man.” In that article, nonagenarian Roger Angell writes beautifully from the heart about being surprised by getting to such an old age, but notes his biggest surprise (#1) is the unceasing need for deep attachment and intimate love.  Based on my reading of his article, I would say the secret to his happiness is longing.  Longing is searching.  As Ravi Ravindra wrote in Pilgrim Without Boundaries:

In being alive to the search, we are alive.

I think this longing, this search is a form of remembering, a remembering of something that is elusive, a connection and not really a memory at all, by the measurement of neuroscience.  Where does it come from?

Another scientist has a different take on why we search and strive to bond with others, particularly in intimate relationships.  In Our Drive to Bond, Bruce Lipton writes about the “fundamental biological imperative that propels you and every organism on this planet to be in a community, to be in relationship with other organisms.”  This type of remembrance is undoubtedly awareness, but obviously on a broad scale indeed, even if it is felt in an acutely personal way.

There are so many ways to address this longing, this remembrance of connection that drives us forward and toward it.  I will close this post with an excerpt from a poem, about our life – looked at as experience that is the long forgetting: This is from William Blake’s Ode (Number 563, Intimations of Immortality from Recollections of Early Childhood, ll. 59-65);

Our birth is but a sleep and a forgetting:

The Soul that rises with us, our life’s Star,

        Hath had elsewhere its setting,

          And cometh from afar:

        Not in entire forgetfulness,

        And not in utter nakedness,

But trailing clouds of glory do we come . . .

You can read the entire Ode here. I’m sure I’ll be back to writing about more practical topics soon, but as the summer blossoms fade and the harvest arrives, I couldn’t pass up this contemplative topic!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

 

Elderhood as a Life Stage: The Power of Naming (part 2)

Roses of a Certain Name

Roses of a Certain Name

Where is this place – old age?  In the first post I looked at the power of naming and how we often use and misuse it in the context of challenges presented by aging.  Here in the second post I will explore the individual and collective means of naming in the context of old age, vulnerability,  elder abuse and other kinds of naming and identity. Did I mention there will be a part three?

One of the losses many elders face is a loss of place, of the previously recognized or accustomed stature and home  – at least in the generally recognized sense of the term (if there even is such a thing).  I have blogged about Eric Erikson’s stages of the life cycle (psychosocial) development and his wife and collaborator Joan Erikson’s addition of the ninth stage when it became apparent that the eighth stage didn’t really cover the breadth of longevity in the context of all the physical challenges and responses to those that an old (80’s-90’s) person and body often faces.  I find it interesting that the ninth stage also denotes a shift in the trust/mistrust pole, where a physically and socially vulnerable elder can come to mistrust their own abilities and capabilities as well as those of the environment in which the elder finds him or herself.

So, instead of asking oneself “what do I want to be when I grow up?” a related question may still be forward-looking – as distinguished from backward-looking, but it involves our continued functioning and capacity.

            •           – Which parts of our selves (including our bodies) and our relationships still work and which don’t?
            •           – What awareness do we have or are capable of having over these losses or compromises?
            •           – Well, what if old age is simply too depressing?

A recent article in The Times of India referred to efforts  by HelpAge, an Indian nongovernmental agency, to identify abuse of the elderly in that country, noting that when the study commenced ten years ago, even elders living with families were very lonely and sad.

So where do we as individuals look for guidance to navigate the terrain of Elderhood?

How do we chart the course collectively and collaboratively as a culture and within the bounds of our legal system?  Well, it depends of course.

I think a big part of it concerns how we address these questions involves our perspective on them  Do we look at elderhood  as a window or elderhood as a mirror?

I will note that the either or setup above might just as easily be a “both and” lineup.

The Mirror.  What is the story we already know of ourselves as we approach that officially recognized age of retirement, 65?  Can we manage to arrive at or transport ourselves to Erikson’s eighth stage which begins at 65?  BTW, the eighth stage – the virtue of which is wisdom, represents in Erikson’s “psycho-social crisis” category that of ego integrity versus despair, the significant relationship here is “mankind, my kind” and the existential question for this stage is “is it okay to have been me?”  But I would ask, do we really need to wait that long to get to “wisdom?”  What of those of us who might be stuck in some continuous loop of an earlier stage – maybe the “intimacy versus isolation” stage. . . .

There is also the question of regret, depression and other negative emotions can have on that backward glance at our lives.  But what of those who are still looking forward – perhaps in recognition of Kierkegaard’s observation that while life can only be understood backwards, it must be lived forwards?

The Window.  One of the hallmarks of Erikson’s ninth stage – whether it is an extension or an additional category, is a term which Joan Erikson has provided: gerotranscendence – you can read more about it in this article from the Journal of Aging Studies.

Geotranscendance (yes, I’m spelling it with “dance” on the end, it’s been done before!) is about building on that strength of wisdom from the eighth stage and looking forward and beyond oneself, hence the transcendence.  I thought of the tee-shirt I’ve seen a few times: “old age is not for sissies” when I was reading about Joan Erikson’s description in the ninth state of the daily dystonic element of despair.  Perhaps this means of transcendence is in this respect a means of survival, of going beyond the despair and dis-integration, to look beyond the self for broader meaning.  Maybe I’m straying off-topic. . . .

So how do the eighth and ninth stages factor into the socially-acceptable and praiseworthy paternalism of mandatory reporting statute regarding elder abuse?  Well, I’m afraid they go back to that death denial and youth glorification temple that is such a fixture in our daily modern life.  When we look in the mirror – who is it that we see?  When we look at elders, who is it that we see?  What is our relationship to the world and how do we make sense of it?  First, we give it a name.

Every Judgment is a naming, and every judgment is (or more precisely, potentially is) a name, can become a name.

                                                        Sergius Bulgakov

More about naming and unnaming in the mirror and through the window in my next installment. . . .

 ©Barbara Cashman  2014   www.DenverElderLaw.org

 

Elderhood as a Life Stage: The Power of Naming (part I)

 

My Mom, the Nurse Cadet

My Mom, the Nurse Cadet

 

In this first post I look at the power of naming and how we often use and misuse it in the context of challenges presented by aging.  In the second post I will explore a collective means of naming in the context of elder abuse and reporting of it as a kind of naming and identity.

Ageism, like all forms of discrimination, limits the respect and dignity afforded to a group of people and likewise, reflectively, diminishes the same qualities on those persons who are projecting those judgments and limitations onto others.

With great power comes great responsibility.

Voltaire (1694-1778), Spiderman (2002)

Each of us has the power to understand, see, respond to, have compassion for, and be with another person.  The problem is many of us don’t often see it as a “power.”  Sometimes we view compassion as a weakness!  If we think of it – that power – as a way of acting, we often see it in the context of “power over” in the social hierarchical and “currency” context of our interaction, like when someone asks themselves before responding to a person before them “how important is this person to me, to my agenda?”  Another kind of power is the power with others, which can be as simple as a small family unit or a work group agreeing on the desirability of getting a common problem solved or a challenge effectively managed in a way that will work for everyone.   This is where the naming comes in (I know you were starting to wonder)….

Dacher Keltner of UC Berkeley lists one definition of compassion as

the feeling that arises when you are confronted with another’s suffering and feel motivated to relieve that suffering.

We often focus on compassion as including only suffering, but I would submit that compassion also properly includes compassionate joy, the ability to feel and share another’s happiness and joy.  The Buddhists call this “sympathetic joy.”

The power of naming, which contains the secret of our relationship to our world, is not something most of us take the time to ponder.  One of the advantages of conscious Elderhood or second-half-of-life thinking, is that we can take a bigger picture view which doesn’t threaten our position in life.  Still, elderhood presents many challenges for all of us, and it is not always an easy transition from the earliest part of our lives, even if we derive meaning from those three sources identified by Viktor Frankl in Man’s Search for Meaning: purposeful work, love, and courage in the face of difficulty.  I have referred to Richard Rohr’s book in previous posts, but Falling Upward is worth mentioning again in his approach that the loss of certain things as a gain of others.

Old age –  how we look at these things, who is the problem, what is the problem, whose problem is it, how will the problem be solved or remain unsolved, whether we consider ourselves part of the problem or part of the solution. . .   I think it is safe to say that people aren’t fond of thinking more than is necessary, and that we prefer simple words that are easy to pronounce and understand.

Often we find that as soon as a concept is labeled, it changes how people perceive it.  This is consistent with the linguistic version of the Heisenberg effect of the perceiver on the perceived and vice versa.  This is the outward-looking part of the naming.

Naming and unnaming in the context of Elderhood is in part concerned with the losses sustained as one ages, and invariably many of us focus on those exclusively, ignoring the positive and liberating effects of entering into the second half of life (for those of us embracing that stage), a time of meaning, when we realize that all of our life is our life’s path.  In using our power to name – both ourselves and others, we can often misname and unnamed.  Let’s have a look at a couple examples.

How do we name the losses of aging?  Where do these losses take us?  Is it to a place of grief and mourning or is it to a place of understanding oneself as a person who will die one day, or more likely, a mix of the two.  There are many losses in old age, and many opportunities for grieving.  Do we take the opportunity to grieve and move on, to open to new life or do we hold on to what was and will never be again?

How do we misname the challenging aspects?  Where many people suffer from a chronic disease – such as Parkinson’s or diabetes, the answer to “who am I?” can often change so that a person becomes an embodiment of a disease.  I think nearly all of us bristle at such a prospect or practice.

Stay tuned, in my next installment I’ll explore how we often unname an elder or some other person with dementia.

 ©Barbara Cashman 2013     www.DenverElderLaw.org

When Death is Not Death: a Reprise

 

Waterton Waters

Waterton Waters

Perhaps a more appropriate title would be “when dying is not dying.”  This is a follow up to an earlier post about “brain death” for organ donation purposes and how the use of medical technology can ethically complicate a person’s dying.  The Boston Globe had a good article about a source of interference for a terminally ill person’s otherwise natural dying process: the implantable cardioverter defibrillator.  Turns out that prolonging life for someone with a chronic disease can have repercussions when the person is dying of a terminal illness or other natural causes.  Read the article “Lifesaving implants complicate end-of-life care” here.  Another troubling issue which is broader than that of the ICD deactivation is when a pacemaker-dependent patient is terminally ill and requests deactivation of the device.  Doctors distinguish between the ethical decisions of these two actions.  You can read a medical journal article about the 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities here.

The implants are basically small, internal versions of the paddles that emergency rooms use to shock patients’ malfunctioning hearts – and these are saving many lives. But in some cases they also are making the act of dying, the process of letting go and saying goodbye much harder, because they are forcing terminally ill patients and families to make wrenching decisions about turning them off. The devices subject some dying patients to painful jolts and can prolong their suffering.  These jolts to a person’s otherwise dying body are also traumatizing to loved ones and can make the dying process more difficult in unanticipated ways.

Implants aren’t the only complications for end of life issues facing an individual or family.  TPN or total parenteral nutrition has served to extend many lives which would have been shortened due to short bowel syndrome or intestinal failure.  As a medical means of extending life for these conditions, this type of intravenous feeding can also complicate end of life care when a person is suffering the effects of another disease process.  Dialysis can stave off renal failure for many years for those with failing kidneys.  What used to be fatal heart attacks and strokes can be more effectively treated in many elders, but the interventions may result in chronic complications or cognitive decline.

Health care POAs and advance directives are much more important for persons with these implants.  Prolonging life and not impeding dying – how do we separate out the two? Is aging and death a natural part of life or is it something that should be opposed as some would argue, essentially that we should be pursuing a “cure” for aging?

I have previously written a post (or two) about the medical definition of “a good death,” and will avoid a discussion of the difficult distinction between quantity versus quality in end of life care.  These issues affect individuals and family members of elders in a much larger proportion, but the issues surrounding medical intervention at the end of a life are issues for all ages of people, children and young adults on life support are much more challenging to us in many ways because these deaths go against the “natural order” of a parent dying before a child.

How to determine what would be a good death is a very individual choice which doctors and medical providers can help facilitate, but they are not the ones properly in charge of making such a determination for a patient or a patient’s family.  Thinking about these difficult questions now and discussing feelings about these scenarios with family members can lighten a potential burden immeasurably.    So what can you do now to start the difficult conversation?  I still like the American Bar Association’s Consumer’s Toolkit for Health Care Advance Planning because it has great topics to break down the process into manageable conversations around issues like Are Some Conditions Worse than Death? and Personal Priorities and Spiritual Values Important to Your Medical Decisions.

These questions are best discussed by family members in advance of a crisis.  The discussion can avert or greatly diminish potential conflict among family members with differing opinions.  Don’t put this opportunity off until it’s too late, especially when so many helpful resources exist to help you get started.

©Barbara Cashman  2014   www.DenverElderLaw.org

Sharing a Difficult Diagnosis – Listening With Love

My great-great grandparents

My great-great grandparents

The other day I read an interesting post from Health Care Chaplaincy.  As synchronicity would have it, I had earlier that day responded to an online friend’s sharing of a very grave diagnosis.  You can read the Health Care Chaplaincy post entitled “Dying to Be Heard” here.  Sometimes it seems odd that so much of our inward searching and striving toward meaning and purpose in our lives must rightly involve sharing with other people, family and loved ones as well as relative strangers.  I think it is the simple fact of recognizing that we are human and that we each have very different ways of being in the world but there are several important ways in which we connect as humans and by connecting, restore our own humanity as we recognize it and honor it in others.

Ease and dis-ease.  What is the real distinction?

Here is a nice YouTube video about one man’s journey through a diagnosis and into the rest of his life.  So managing that solitude and intimacy divide is an essential struggle that we face no matter where life’s twists and turns take us.  One struggle that a chronic debilitating condition or a terminal illness places in front of a person is the question about how to spend the limited space that is the rest of life.  There may be a shift from quantity to quality.

How one’s world begins to shrink or congeal as a result of a diagnosis or a disease progression (in the case of debilitating physical losses or mental or cognitive impairments) is a uniquely individual thing.  Shrinking can sometimes bring clarity and freedom.  What is a person’s life story and how does it change, if at all, as the result of a life-altering diagnosis? One type of active listening that I learned about during my mediation and facilitation training (and maybe also from reading a few parenting books) is reframing.  It can be based on among other things, a listener’s ability to restate what a speaker has said, and to reflect on the feelings and values communicated by the speaker’s words and often their gestures.

I think it is a good idea to not underestimate the power of listening and of being heard.  There are many lists, tasks, processes and other guideposts around negotiating grief in our lives, but each of us experiences it differently.  Just as we all feel loss in our lives differently, the grief which is the feeling of attending to the grief is unique.  The opportunity to be heard and to listen to others is a way of extending compassion to another and recognizing our common humanity in this uncertain thing we call life.

I liked this recent post from SciAm entitled “A Happy Life May Not Be a Meaningful Life.”  And no, I didn’t like it just because the authors began the post with a quote from Viktor Frankl, but also because some of what they observe is about happiness as a thing that one gets, something material, defined outside of us.  Its relation to meaning in our lives, which is about quality – not quantity, stands in contrast.

What is it that makes sense in our lives and of our lives? I think paying attention to mortality can be an excellent teacher.  I will quote from The Prophet by Kahlil Gibran:

You would know the secret of death.

But how shall you find it unless you seek it in the heart of life?

For life and death are one, even as the river and sea are one.

. . .

Only when you drink from the river of silence shall you indeed sing.

And when you have reached the mountain top, then you shall begin to climb.

And when the earth shall claim your limbs, then shall you truly dance.

The Prophet (1976: Knopf) at 80, 81.

The power of telling and listening to a story is a power to heal.  It only requires two of us – a speaker and a listener.  Compassion is a core value, fundamental to our interdependence on one another.  Life goes on after a difficult diagnosis, but the terms on which we engage often change, sometimes dramatically and other times by degrees.  The terms most certainly can change as we reach farther in our lives and deeper.  Confronting our own mortality is never easy, but sometimes people do so with incredible grace.  You can listen to the late singer Lorraine Hunt Lieberson’s rendering of Bach’s Cantata 82 “Ich Habe Genug”  here on youtube.  At the time of the recording she knew that her time was limited, due to the progression of breast cancer.

As we learn to approach and embrace the spiritual side of our mortality and attend to dying as a natural event and not as a medical problem to be managed, we can provide the care from the heart.  As that quote attributed to many different persons goes “the longest distance known to man is the distance between the head and the heart.”  We may be solitary travelers on our own paths, but we are not alone in our hearts.

©Barbara Cashman  2014   www.DenverElderLaw.org

When Death Is Not Death: Stumbling Over the Parameters of “Brain Dead”

Geese at Ketring Lake

Geese at Ketring Lake

I came across this very interesting article in the New York Times about two recent cases of young persons and death.  This is not any old death, this is legally recognized “official” brain death.  Only problem is, the definition of brain dead is a bit tricky.  In Colorado, we have advance directives that distinguish between persistent vegetative state and terminal condition.  As the NYT article points out, the Supreme Court cases which make the advance directive, a/k/a living will so popularized, were all cases involving persons (women) with the diagnosis known as persistent vegetative state, as distinguished from “brain dead.”   Colorado has recognized brain death from at least 1985 on, but one of the challenges with this definition is that it attempts to draw an arbitrary line between the dying process and death.  Where is the end of the line?

The Uniform Law Commissioners created the Uniform Brain Death Act in 1978.  Brain death became much more relevant as a result of organ transplantation and as neuroscience and its imaging technology has become more advanced, there are many more nuances known about the distinctions between persistent vegetative state and when someone has experienced brain death.  Setting aside the medical distinctions, the law does distinguish between brain death and persistent vegetative state.  Here is an article about the legal terminology and some of the techniques used by medical professionals to make such a determination.   Here, I think of the beautiful film The Diving Bell and the Butterfly, about the French writer with “locked in” syndrome as a result of stroke.  There have been several articles in Scientific American on this topic of what is “conscious awareness” and a finding cited in this article that patients who were otherwise in a vegetative state were found to be minimally conscious and capable of learning.   So much for that “bright line” between vegetative state and cognitive awareness.

Interesting and more controversial is this topic of the NY Times article, in the context of how these determinations play out with a teenage girl and a young mother, the persons declared “brain dead” by doctors in California and Texas, respectively.  Both these young women are on ventilators, and their hearts continue to beat.  The NYT article observes: “[t]he two cases are poignant because of a biological quirk of the body: the patients’ hearts continue to beat.”  When I read this observation, I knew that the authors were folks who view the heart as a pump, a pump for the benefit of the brain.  It occurs to me that this may not be a biological quirk as much as a mystery.  Perhaps we don’t know nearly as much about how the body works as we pretend to in our high tech and information saturated era.

So, I wonder – what is running their bodies if their brains are dead?  I disagree with the NY Times journalists that it is “a quirk.”  This is a most basic question yet it challenges our entire brain-centric reductionist view of what life is (rather, how it is measured) and how it is readily distinguishable from death.  My question is simple – how is it that a brain dead person can still live – doesn’t science have a bit of explaining to do here?  No, evidently not if one takes the reductionist view.  The brain is an organ of the body, but it is not on its own “the intellect” or “consciousness” (unless you are a tightly-bound reductionist, and they are represented among neuroscientists).  Since when does only the brain count in making a determination of death?  If the heart is not dependent on the brain, then why should the brain death determination override the determination of death?

Perhaps beyond the difficulties with reconciling our imposed definitions on life and death, or at least attempting to do so in order for them to be consistent with what we think we “know,” there is something that cannot be measured quantitatively but is rather a quality of being.  What if Black Elk, the blind Lakota sage, was able to see with the eye of his heart?  What if there are other ways of looking at the heart that we have not yet discovered?  I’m sure this won’t be the last time I ask this question.

Finally, one last observation.  In this country where provision of medical care is part of our free market economy, does this have bearing on a patient’s quality of life or right to continued care?  Here is a recent law review article about the tort of “wrongful prolongation of life,” which are the only lawsuits of which I am aware involving failure to follow the stated wishes in an advance medical directive.

If all of these questions are too much, I suggest some beautiful artwork on a similar theme.  It is work by Mihoko Ogaki called Light After Death and you can take a look at it here. Thanks to Tomasz for sharing it on Google+!

©Barbara Cashman  2014   www.DenverElderLaw.org

Conscious Living and Dying: Death and Depth – part 2

Japanese Garden at DBG

The first part of this post was about death and depth, depth as in “deep end” of something (yes, I likened it to the familiar swimming pool, with those rope float dividers) that is distant from us, unfamiliar, unknown and just plain scary.  So now I will continue the analogy with a different topography, but along the same theme of that invisible mystery which spooks many of us. . . 

For those of us who have experienced earthquakes, we have a different sense of the relationship between what is the visible ground that appears to be solid and the deeper ground where stirrings can cause a shearing away of that surface, revealing new ground, new possibilities, even amidst massive destruction.

Of course there is a choice about how to react when the ground breaks open.  We can be careful to try and repair it, admiring the petrified crust and not wanting to upset any apparent order or appearances.  Or we can break through the crust, willing to fall hard and break through the known into the unknown.

Into the depth of a center.  Symbolically and mythologically speaking, there can be many places which can serve as a deep center, a mountain or a tree, which one could ascend or which can be reached only after a descent, the undoing of the apparent, exterior, the superficial.  Where is the center?  Well, that depends of course.  Often we simply fail to slow down and consider the obvious question because we are so accustomed to looking past it, well beyond where we are at the moment.  What is it that we know or we think that we know?  I’m thinking of a quote from the poet and essayist Wendell Berry here (this from his collection of essay Standing By Words at 50) about the shortcomings of language – “It is not knowledge that enforces this realization [that you cannot act in your own best interest unless you espouse or serve a higher interest] but the humbling awareness of the insufficiency of knowledge, of mystery.”

Perhaps that mystery is the center for which we long and the voyage to which we dread.  Again there is a choice – to do our won spiritual excavation to uncover truth, the meaning in our won life . . . .  or we can admire the relics of another’s questioning or their excavation, from the comfort of an armchair.  What does it take to move into uncertainty and “go with it?”  Sometimes we don’t have a choice.  This is the dying process.  I’ll include another quote, this one by Vladimir Maximov:

All is mere ashes and dust-

All except the Temple within us.

It is ours and with us forever.

(From Henry Corbin’s 1986 book Temple and Contemplation.)

So if that movement, that moving away from and toward something, is in terms of a center, it is a place where we may realize that we are no longer separate from it but rather identify it as part of a larger whole of existence.  In this way conscious living, along with conscious death, can be our final act of creation in this life.  If death is a transcendence, of words or being, the question follows “to where?”  I had the pleasure of reading “Creation and Recreation” by the late University of Toronto professor Northrop Frye, who observed: “Every unit is a whole to which various parts are subordinate, and every unit is in turn part of a larger whole.” [Creation and Recreation at 73.]

If death is a return, a remembering, a completion, then many of us may feel stranded by a sense of things undone, words left unspoken during a now-deceased dear one’s lifetime.  Guilt, resentment, helplessness, remorse are common feelings here.  These may arise from a denial of death, that we will indeed have time to finish our life to our own satisfaction.   I have seen this approach in more than a few people.  Many of us have never lived liked this before, so how can we be expected to change all this in preparation for a death that is most certainly not desired?  It is difficult to determine when the time of sickness transitions to the time of dying, but an inability to accept one’s life seems to ensure that it will be much more difficult to accept impending death.  Death is a final act, unknown and mysterious, yet it happens every day, all over the world.  It is a final act, an ending, that realization that someone is “over and done with,” but our experience of course tells us otherwise.  In one of the chapters of “Who Dies?” Stephen and Ondrea Levine look at how to finish business with someone who is no longer around?  They note that the answer is always the same – one need not see that person in order to send them love, in order to finish business the other person doesn’t even need to acknowledge your presence, much less the process you are sharing.  Like other types of forgiveness, this type of work is done for its own sake and is not dependent on any “results.”

To conclude this, I will loop back around to that idea of the deep center – which we can travel a path to in our lifetime if we choose, as part of our conscious living, or which we can travel to as part of the final destination in our physical body.  The Levines attribute the following quote from Albert Einstein:

A human being is a part of a whole, called by us “universe,” a part limited in time and space.  He experiences himself, his thoughts and feelings, as something separate from the rest – a kind of optical delusion of consciousness.  This delusion is a kind of prison for us, restricting us to our personal desires and affection for a few persons nearest to us.  Our task must be to free ourselves from this prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty.

Levine at 183.  Just a gentle reminder that Einstein spent his life searching for a unified field. . .

Depending on how we look at it, we have been practicing dying all of our lives.  When we get stuck on or attached to particular outcomes based on our expectations or who we think we are  – we suffer.  Perhaps we can practice this living and dying mindfully, so we can look beyond those prison walls and lessen our suffering in this life.  At the very least, practicing it will make our dying and most likely the acceptance of our loved ones’ dying, much easier for us.

©Barbara Cashman 2013     www.DenverElderLaw.org