Facing Grief: Whose Death and Whose Loss?

A Sunny September Day at DBG

This post is about naming the unrecognized grief and respecting the grief experience as an individual human experience.  How do we respond to loss?  I recently borrowed from my  local library “The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss,” by George Bonanno.  I enjoyed looking at this book because it challenges the recognized notions of what is expected about one’s experience of grief and how the experience of many of us simply doesn’t conform to those recognized expectations.  Let’s face it, none of us likes to be told how to feel – but we so often do that to each other in our child-rearing and in our lack of listening skills.   The chapters of Bonanno’s book cover a range of grief of people who are very resilient and grieve in a relatively short space of time to those who experience an entrenched and seemingly intractable grief.  He writes about the sadness that is part of grief.  I have to marvel that it is no wonder that our happy and PMA (positive mental attitude) obsessed American culture has a hard time with grief’s sadness and despair.  We spend so much energy trying to avoid, to pull ourselves away from discomfort and out of any pain that we often simply become numb – to both joy and sorrow.  But sorrow, like grief, is also a teacher.

“We are never so defenseless against suffering as when we love.” 

Sigmund Freud

Bonanno writes about the “function of sadness” – which he came to consider in working with Dacher Keltner (author of “Born to be Good: The Science of a Meaningful Life” and like Bonanno a psychology professor).  Turns out, sadness helps us remember more accurately.  He notes that “sadness helps us focus and promotes deeper and more effective reflection.” (Bonanno at 31).

In many ways, grief is the proof that we have loved another and that we have engaged our heart in the activity of living.  In this way the grief and the sorrow in our lives, the evidence if you will of our aliveness and participation in the world, along with our own vulnerability – this is what makes us stronger.  Leo Tolstoy wrote “only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them.”  The human psyche, like that human body, has the innate ability to heal itself.

In a blog post from 11/8/12 I asked “Should Anyone Practice Grieving?”   I think I would open that question a bit wider here.   What is grief if we consider that every day of our lives we might lose something –  someone or something that we became accustomed to, counted on, held dear or loved deeply?  What if we looked at the continuum of grief as part of our life in an experiential way.  Starting with the more mundane expectations, the details around which we plan our day and extending to the devastating or catastrophic loss that some will experience.  If we consider that our lives are inherently fragile and subject to constant change – would this make us stronger or weaker as people?   To this question I can respond in a lawyerlike way . . .  “it depends.”

What we grieve and how we grieve may be determined largely by us or we can be at its mercy.  How do we respond to our own weakness?  This is where grief can be a very effective teacher.  A first step may be to honor one’s own feelings, even if they include pain, sorrow and loss of identity.  I often advise clients who are grieving to be more gentle on themselves.  This is especially important when we are dealing with grief that is complicated – such as when a person takes his or her own life, even if it was “expected” – because we just can’t ever gauge how we will respond to such an event.  And what about the grief that is not typically recognized, an “under the radar” kind of grief like when a former spouse dies or an estranged partner or friend passes away?  For a person who hasn’t been married to a former spouse for a number of years, the survivor, along with the decedent’s family and friends, may simply not recognize the feeling or the loss.  Until this type of grief is named, it can behave like an anonymous marauder.

Sometimes grief helps us remember where we came from, where we were at a particular time- fixing, however improbably, an ephemeral recollection with a kind of “date and time stamp.”  Perhaps our true nature as people is to remember, to simply remember who we are.  Isn’t that difficult enough?  What if the experience of grief and sorrow could help reveal that to us?  In fact it often does, sometimes in surprising ways.

A fish cannot drown in water.

A bird does not fall in air.

Each creature God made

must live in its own true nature.

   Mechthild of Magdeburg

Consider the Blackfoot saying: Life is not separate from death.  It only looks that way.

So what is grief then?  Love is attachment, as we know from human development – bonding is a crucial step in an infant’s brain development, and we each form attachments of love with others in our own unique ways.  Grief is like a tear of that fabric of attachment that we can experience in any number of ways.  A tragedy on the other side of the globe, a person whom you have never met, a community affected by violence, a child or a family member.  Grief comes in so many forms and we, as experiencers of grief in our life experiences are even more diverse in its expression.  Listening with one’s heart is a way of sharing grief.  If you haven’t yet lost a dear one or felt the pain of grief’s unmoored emptiness, perhaps you can listen with compassion to another’s story of their loss and their grief.  This –  in the hope that when you have an experience of that nature, someone will be there to listen to you.

©Barbara Cashman 2013     www.DenverElderLaw.org

Dementia and the Fear of Aging and Death

denver elder law

Denver Botanic Gardens - Grape Arbor in September

This is a popular theme of mine, this topic of the burgeoning number of elders with dementia (Alzheimer’s or other types).  The issue of dementia and capacity is an evolving area of elder and estate law and the reach of dementia extends well beyond the individual’s loss of autonomy.  Sometimes I refer to Alzheimer’s as being “contagious” in this regard.  It can and usually does affect an entire family systems or social network.  More on the Alzheimer’s epidemic: coming to an affluent country near you….Australia , Israel, and the US .

The ramifications for our financial, legal, psychological and medical well-being are far-flung and highly dependent on an individual’s unique circumstances.  what most of us seems to be in agreement about in this aging and dementia context is that it is indeed a frightening possibility to consider.  But you could say this about many aspects of the uncertainty (general or particular) in our lives.  Getting stuck in the fear reaction to this disease or condition can keep us in a not-so-productive flight-or-fight reptilian brain mode of thinking.  We need our entire brains and all of our awareness and our hearts’ courage and wisdom to look at what this phenomenon is and what it means to us.  Where does the fear originate?  In our brains!  It is our ego-based sense of control feeling inadequate and looking to blame something “out there” so we can keep going.  Our hearts, on the other hand – are where the courage comes from.  The word courage comes from the old French word “corage” and from the Latin “cor” (the modern French word for heart is of course “coeur”).  I think of the popular Mark Twain quote here:

Courage is not the absence of fear.  It is acting in spite of it.

So the brain can make us fearful, but the heart can give us courage to overcome and move beyond where we would otherwise get stuck.

I recently read an article in a SciAm Mind about recent research on the distinction between age-related forgetfulness and Alzheimer’s disease .  Read “Researchers Discover Potential Clue Behind Age-Related Memory Decline” here .    I think here they probably intend the more general forms of dementia as a disease progression, which of course includes Alzheimer’s.  I am mindful of the medical establishment’s tendency of lumping together different types or forms of dementia under the category of “Alzheimer’s disease” and also know that very few of the people dying of dementia as a cause of or contributing factor of death (primary or secondary as noted on a death certificate) will have a piece of their brain examined under a microscope to confirm the existence of the particular form of dementia known as Alzheimer’s Disease.

What do we do with all these clues, potential causes, coping strategies, and the search for remedies and answers?  I think the important thing to keep in mind is that the brain is not some black box of processes that contains everything we are.  This is where much of the approach of mapping and cataloging the brain really begs the question.   Just because we have more clues from advances in neuroscience about how the architecture and chemistry of the brain tends to behave based on our current observations and understanding, this doesn’t mean we have answers to any of those questions that the ancient Greek philosophers and others have posed throughout human history about the nature of being and consciousness, reality, and life in general.  In fact, I would submit, the obsession with the discovery of new details of neuroscience they are leading us farther from the real and bigger questions, these are the  important ones that get obscured with all the details piling up.  All this brain-obsessed cataloging completely overlooks the role of the heart, not as a mechanistic pump (unless you find that cut-and-dried approach to scientific inquiry comforting) but as an informer of and communicator of important information to the brain.  Beyond the anecdotal and traditional approach to the wisdom of the heart, there is also much science to back up the heart’s way of working with and through the brain.

Some years ago I became familiar with the work of the HeartMath Institute.  You can read about  HeartMath  at a PBSonline link here . Their scientific  evidence demonstrating the heart’s intelligence shows that the heart communicates with the brain in important ways by: sending neurological information to the brain and the rest of the body; the pulse sends energy in blood pressure that changes the electrical activity of brain cells; and that the heart communicates with the body on both a biochemical and electromagnetic level.

If it sounds new-Agey, it’s not, it is based on lots of well-recognized science and includes more traditional approaches to the body and consciousness.  Much of the science behind heartMath is also consistent with more traditional modes of thinking over human history (often collectively referred to as the perennial wisdom).

So what of the brain and its cognitive decline in old age or disease process in dementia?  There is more than enough fear of this condition or disease to go around – as if we need more fear in our daily existence.  I think a lot of this research and study tends to beg a very basic question – what is our life and our longevity for?

So . . . . what is age-associated cognitive decline as compared with dementia?  Do we really know?  Maybe.   But we still often hear people talking about an “Alzheimer’s epidemic” –  and his sounds extreme and scary.  I would agree with that characterization.  But if you disregard the emotionality and look at the demographic of baby boomers, it is apparent that the epidemic is a relative term uniquely associated with the aging baby boomers.  It is not some kind of communicable disease that affects a wide swath of the population after all.  But that doesn’t prevent me from sometimes telling people that Alzheimer’s can be “contagious.”  I don’t mean this literally of course, I mean it figuratively, that it seldom affects a single person individually because of how it often impacts our relationship with a person with dementia or who has trouble thinking.  Sometimes we “cover” for that person, to maintain their dignity or sometimes because we are in denial about what is happening.

The medical,  financial and psychosocial aspects of baby boomers with dementia is far reaching, especially in light of the fact that we are struggling mightily with those already affected by dementia for the greatest and the silent generations.   The term “Alzheimer’s” has come to be used as a somewhat generic term for a wide variety of dementia, caused by different types of disease processes or chronic conditions, but there are many ways of dealing productively with the challenges that dementia poses.  Early diagnosis is a good place to start and it can help the individual who has trouble thinking along with loved ones develop a strategy that can help maximize dignity and autonomy or other important values.

©Barbara Cashman 2013     www.DenverElderLaw.org

 

Health Care Advance Planning – Why Aren’t More People Doing It?

Independence Pass in June

First, off – let’s define some terms here.  Most everyone I talk to knows what a living will is. In Colorado, this is known as an advance medical directive or declaration as to medical treatment.  The living will is widely recognized because it has an effective advertising department in the form of U.S. Supreme Court decisions (remember the cases of Terri Schiavo, Nancy Cruzan).

Does the availability of this document – the living will – really create peace of mind, or is it often just a false sense of security?  In my experience I would say . . .  it depends.  Many people put lots of faith in the document itself.  I think this is where the false sense of security comes in.  If a declarant (the legal term for a person executing an advance directive) hasn’t had a productive discussion with family members or loved ones who will be the ones to effectively ensure that a declarant’s wishes are followed, this can often lead to a false sense of security.  Yes, many people would rather simply sign an advance directive and state their wishes without having the often troublesome and very emotionally charged discussion around those end-of-life wishes and how they are to be effectively negotiated and honored.

The ABA recently updated their Consumer’s Toolkit for Health Care Advance Planning and it covers helpful topics and is an excellent resource.  Executing an Advance Directive is no mean feat.  I offer it to my estate planning clients, but I do so with the caveat that they must discuss it first with the person or persons who will be emotionally involved in the declarant’s end of life care. As a result, not nearly as many people actually complete a living will – but I don’t think this is necessarily a failure on my part.  People need to think before they choose, and the best way to do this thinking is . . not in a vacuum!  Fortunately, there are several good resources available to help folks initiate these conversations.  You can look at the Conversation Starter Kit available at The Conversation Project  and there is even a card game to sort out these values-laden questions with family and loves ones – the “Go Wish” Game from the Coda Alliance .  One of my favorite documents is still the thorough (some would say exhaustive) health care values document available from the University of New Mexico.  When is a good time to have this conversation? Anytime of course, but I think it’s a good idea to start percolating these conversations as we enter the number of holiday times in the fall and winter.  If you want to explore state specific instructions and forms, the Colorado information made available by Caring Connections is very helpful.

I started thinking about this topic again as I read my latest issue of Bifocal, the e-zine published by the ABA Commission on Law & Aging.   I found especially interesting Charlie Sabatino’s article entitled “Eight Advance Care Planning Lessons That Took Me Thirty Years to Learn.”   His first lesson?  Most advance directives aren’t worth the paper they’re printed on!  Yes, there’s that false sense of security theme again . . . Why would he say this? Well, it goes back to the difference between having a document signed and having an understanding entered into .  Yes, we are free to make our choices, but the fact is, many of us making those choices are not adequately informed about the consequences of our expressed choices.

In Colorado, we have some of the most advanced law in the country pertaining to medical decision-making and autonomy.  See Colo. Rev. Stat. 15-18-103.  The Colorado Medical Treatment Decision  (Living Will) Act was repealed and reenacted in 2010 and several new tools were added.  They include: revisions to the regulations governing the CPR (cardiopulmonary resuscitation) directive; a new and improved Living Will Act; and a new provision regarding that Vulcan green form you might have seen in a hospital or skilled nursing facility –establishing  the Medical Orders for Scope of Treatment (MOST) process.

As I often reiterate to people I speak with, a living will can be a useful tool, but it has very limited application to end-of-life treatment and is relevant in two settings primarily –where there is a persistent vegetative state or a terminal condition.  I wholeheartedly agree with Sabatino’s second point in his article – that the real task of advance care planning is appointing and informing a health care agent under a medical durable power of attorney.  I instruct my clients that they need to consider this one carefully, especially since adult children of elders are notorious for their level of denial regarding disease and death in old age.  Many of my age cohorts (baby boomers) cling to the belief that hospice care is akin to “giving up” and may have serious emotional difficulties with following a parent or loved ones state wishes – especially if they haven’t had that heart-to-heart conversation with the person beforehand.  Nevertheless, naming a person in charge of decisions is a far more effective technique to manage choices around care than a statement of wishes.  But don’t get me wrong, I recommend the full package for my clients, but I recognize that many people are not really ready for such an excursion, so I insist on the conversation in advance on the appointment of a health care agent.  I often ask clients in this context – could this person (if they are selected as agent), adequately express  and follow your wishes and make difficult choices that other family members may not agree with?  Then perhaps you have selected the appropriate agent.  It needs to be a person carefully selected, knowing that they would be able to make a difficult decision for you and still be able to sleep at night.

These discussions are not usually easy to start, but they are invaluable and they help us sort out what is important in our life that needs to be honored in our demise.  The easiest way is to simply begin.  This topic is great fodder for a Thanksgiving table conversation!

©Barbara Cashman 2013     www.DenverElderLaw.org

Offering Support and Grieving in the Digital Afterlife

Mesa Verde National Park

Most people don’t want to think about death and dying and the digital afterlife is part of the denial-based mindset that is widely accepted in our culture.  Recently I read an interesting article in the September/October issue of Scientific American Mind entitled “managing Your Digital Afterlife,” which discussed, among other things, how we genuinely grieve using an online medium.  I think to the online obituaries that are now commonplace and the messages left in a guest book at such sites. Perhaps you have heard of CaringBridge, a nonprofit  online community where terminally ill people and family members can get support (by helping friends and family organize meals, coordinate care, etc) and people can post updates on health events and other developments via journal entries.  I know people who have used it and it is a great way of staying in touch and offering care and support when people really need it.

Enough time has passed now with the biggest psychological experiment ever (a/k/a the internet) for studies to have been done about using it as a venue for grieving.  The article talks about how Facebook users interacted with the digital remains if you will of a decedent, returning to pages on anniversaries, birthdays and other events as a way to keep the memories of that person alive.  It makes me think of the memorial prayer – that says we are not gone until we are forgotten.  How will online grieving open us up to grieve in new ways, to forge new social support for survivors and maintaining a sense of connection with a deceased loved one or friend?

The Well of Grief, by David Whyte

Those who will not slip beneath

   the still surface on the well of grief

turning downward through its black water

  to the place we cannot breathe

will never know the source from which we drink,

  the secret water, cold and clear,

nor find in the darkness glimmering

  the small round coins

     thrown by those who wished for something else.

(from the 1992 CD entitled Close to Home, with special thanks to John L. for sending the CD of David Whyte’s spoken poems to me)

One of the biggest interferences with the grieving process that I see as an estate lawyer is when a person passes away and the grieving survivors have no idea where to find important information, accounts and contacts and often have no idea where to look.  For those reasons, organizing information is an integral part of the estate planning process I undertake with clients.  So what can we do with these complications when it comes to digital assets and digital remains?  What is it that we can leave behind online when we pass away?  What kind of property is it?  To whom does it belong? The legal issues arise out of a lack of clarity of answers to these questions and this can have adverse effects on the grieving process.

Digital property is not easily defined, as it depends on what the matter is, how it is used, and so on.  This is both a nascent and evolving area of the law.  So far only six states have digital asset laws that are part of their probate code.  Colorado is not one of them.  The Uniform Law Commissioners  are working on a uniform law in this area, which seems like a natural for uniform law adoption – the digital commons involve both state and federal laws.  I have drafted powers of attorney which cover several types of digital property and digital access, but the law in this area (access to an incapacitated persons digital property and accounts using a power of attorney) is less than clear.  Not even the finality of death seems to clarify the nature of a decedent’s digital assets.  Stay tuned for further posts on this topic.

©Barbara Cashman 2013     www.DenverElderLaw.org