November is National Family Caregivers’ Month

Clouds in Water

Clouds in Water

In the post, I will look at some of the challenges of caregiving for a loved one with dementia and provide some resources for this growing population.  November is also National Alzheimer’s Disease Awareness Month.  Here’s a link to the Alzheimer’s Association’s caregiver center, which has helpful information and resources.

As we approach the holiday season, it struck me that it would be a good time to revisit this topic.  The holiday season and its focus on family activities and get-togethers, can cause additional strain to family relationships made stressful due to an elder parent or loved one’s dementia.

The first important detail is that people with dementia are usually cared for by family members or friends and the most of them (about 80%) are receiving care in their homes.  Here are some numbers from the Centers for Disease Control:

Each year, 15 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias. More than six in ten (62%) caregivers were women, almost one in four (23%) were 65 years of age and older, and three in ten (30%) had children under 18 years old living with them.

Caregivers of those persons with dementia usually provide such care for a longer period than the caregivers for other diseases or conditions, and the CDC statistics on this demonstrate that

More than four in ten (43%) caregivers of people with Alzheimer’s and related dementias provide care for one to four years, and more than three in ten (32%) are caregivers for five years or more. For other types of chronic conditions that require care, more than three in ten (33%) caregivers provide care for one to four years, and almost three in ten (28%) are caregivers for five years or more.  

Caregiver stress, caregiver burnout, and for premature death for an elder spouse of a person a suffering from dementia are all very real risks here.  The demands of caregiving for a loved one with dementia subject the caregiver to greater risks of anxiety, depression and overall poorer quality of life.  So, that is the bad news. . . so what kind of resources are available to support these caregivers?

There are a range of options to consider of course, as every person or family’s situation is unique.  Perhaps all that is really need is a bit of respite care.  Sometimes just the prospect of respite care being available can make a huge difference in the emotional health of a family caregiver.  Here is a link to the Colorado Respite Coalition, which has a variety of resources available.

The vast majority of caregiving in this country is done by family members free of charge.  For many people however, volunteering these services is simply not a financial option.  Here’s a link www.disability.gov, the federal government’s website that has links, resources and helpful information for family caregivers as well as information about how family caregivers can get paid to perform such services.    And here is a link to the eldercare locator, a public service of the U.S. administration of Aging.  The Medicare.gov site also has some information that can be helpful to caregivers about what Medicare provides.  The AARP site lists these five skills that help persons care for the elders they love: observation (paying attention to changes); organization; communication; questioning and tenacity.

Several of the helpful sites above advise elders to put important legal documents in place while the elder retains capacity to do so.  When will you know whether a power of attorney is needed? Chances are good that it will be too late for an elder with dementia to execute a power of attorney once it is determined that such a document is needed!  So, I will close this post with a reminder concerning a couple bare minimum documents which are required to ease the burden of family caregiving: a health care power of attorney (with a conversation about end of life wishes with the named agent, successor agent and perhaps other family members) and a general durable (financial) power of attorney.

Both of these documents are planning documents that are designed to prevent the need for later protective proceedings in probate court  – for guardianship and/or conservatorship – in the event of an elder’s inability to manage their money or if they become incapacitated due to advancing dementia.  The American Bar Association’s “tool kit” for advance health care planning has good questions to consider in how to select your agent and list your priorities.  Remember, one of the best ways for elders to NOT be a burden on their loved ones is to plan ahead and the value of that advance legal and medical planning should not be minimized.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

 

Yours, Mine, Ours and Theirs – Health Care Advance Directives

Not quite empty nests!

Not quite empty nests!

 

I am continuing my series of posts on the theme of blended families, adult children and stepchildren, and some of the challenges of estate planning within such a modern context of family relationships.

In my first post, I gave an outline of some of the terrain I would be covering here.  In the second post, I looked at some of the unique questions posed blended family estate planning, along with the potential for conflict if nothing is done to plan.  The last point discussed in the second post concerned differing styles of coping with or managing conflict and the importance of identifying what is important as well as knowing the challenges.  A colleague emailed me after seeing the post, commenting “It’s as if you were listening  to my recent conversation with my husband of 18 months!”

Okay, let’s get started with the third post already!  Here’s a link to some helpful information about stepfamily members and inheritance.    I’m including resources here about inheritance expectations of children, stepchildren and so forth because they are part of the equation, they are the “theirs” which I include in my title for the series.  In my experience working with blended families, the “theirs” is always part of the picture, whether the expectations of adult children are acknowledged as such or whether they are  described and set forth from the parent’s point of view in the estate plan.  Hence my inclusion of that term “theirs” – even if the adult kids are not at the table so to speak…. So getting back the content of this post, let’s consider some of the  “what happens if” and the “what happens when” scenarios in the blended family or some “de facto[i] version of it.

Getting back to my original premise about blended families estate planning having no “template” like the historically “traditional” American family did, it is worth considering first – what kind of blended family are you? Do you have: kids from both sides; aging adult parents; older, established adult children; any special needs children to provide for; an inheritance from a deceased parent or other relative which you wish to keep in your line of descendants; are long term health care considerations important; and lots of other questions.  Most of us like to go directly to problem solving mode when we face a challenge.  What I think is important to consider as a preliminary matter here is holding off on that step until you determine what are the important values which will inform both your individual and your joint decision making.  If you get to problem solving too quickly, there will be likely misunderstandings about the purpose and nature of what was decided and, of course, the utility of such decisions.  I should also add that, just like the rest of us over the age of 18, we should be having these conversations about who we want to make decisions for us in the event we are unable and expressing our end of life wishes to family members and loved ones.

I’m focusing on one particular issue in today’s post – advance directives for health care.  “Advance directives” include two important documents: a health care (medical durable) power of attorney (POA) and a living will.  These two documents work together for the most part, but from my perspective, if you only have one of these documents – execute a health care POA because that document names a person to make decisions for you in the even you are unconscious, unable to communicate or otherwise unable to provide informed consent for medical care.  Remember, health care POAs are, by their nature, what we call in my line of work a “springing” POA – meaning that the agent named in the document is only empowered to act as agent if the health care provider determines that the patient/principal is unable to give informed consent.  An agent cannot give informed consent for a procedure when the principal is otherwise able to provide informed consent.  This is informed consent matter is important, I have previously written about it in the context of the Nuremberg War Crimes tribunal.

I don’t usually like to use fear as a motivator to cause people to act, but a failure to execute a health care POA and name an appropriate agent to make decisions for you can have dire consequences in the blended family context.  A failure to discuss and plan for either the unlikely or the inevitable can result in conflict between the spouse and their step-children.  This is seldom what people want!

With the health care POA, the principal (the maker of the POA) should carefully consider who is the best person for the job – who is the best equipped emotionally to make difficult decisions and who will be able to effectively communicate with all the necessary parties involved.  Usually, if adult children know that this conversation is taking place with a parent and step-parent, there is a collective sigh of relief.  I suggest continuing the conversation at a family dinner or other event, so everyone is informed of who is named as gent and successor agent, who will be in charge of decision-making and how communication will be conducted.  It goes without saying that this should be an ongoing discussion over the course of our lives!

You can imagine that there have been many difficult lawsuits brought where there was no such document in place or plans were not otherwise sufficient.  Family peacekeeping often involves thinking ahead to avoid conflict, and this is just what advance directives can provide for a blended family.  Here is a link from the CDC with many helpful resources, including the American Bar Association’s Consumer’s Toolkit for Health Care Advance Planning.  In future posts, I will be looking at the financial power of attorney and other useful means to manage our longevity and disability.

And in celebration of our glorious sunshine here in Denver (after a lot of snow over the weekend!) how ‘bout a bit of eye candy?  Check out Colossal’s post about “The House of Eternal Return,” a previously abandoned bowling alley in Santa Fe which now houses a brilliantly colored immersive art installation.  Inside the space is a house, complete with a bathroom with a wavy tile floor.  I think the “eternal return” theme goes nicely with the desire of so many of us to remarry.  Here is that oft-quoted statement from Oscar Wilde about marriage:

Marriage is the triumph of imagination over intelligence. Second marriage is the triumph of hope over experience.

That’s all for now, will continue next time with more details for the ongoing discussion. . .

___________________________________

[i] I use the term de facto here to distinguish from de jure blended family.  Most of my posts will covered married persons, but I do not wish to exclude couples who make other, nonmarital arrangements which often resemble marriage, but without its conventions and protections.  Here’s a good description of the difference between the two legal concepts.

© 2016 Barbara Cashman  www.DenverElderLaw.org

 

Caregiving Arrangements and Elders: The Next Conversation We Need to Have

Youthful Exuberance

Youthful Exuberance

Death denial and youth glorification go hand in hand in our culture.  Today, I’ll look a bit more at some of the cost of denial in terms of aging and a loss in capacity for the majority of us.  I’ll start with some questions . . .  How many of us will voluntarily give up our car keys? How many will willingly concede to family or friends that we are having a difficult time managing our daily existence?  In my experience, the number is small.  It takes a combination of honest self-assessment, a well-developed self-awareness, a special types of candor, or just something catastrophic that “calls the question!”   For the former, I think of a cousin’s late father, just a few years older than my father (his cousin).  He was a retired physician and at one point detected some cognitive “slippage” which did not seem to be age-related.  He got himself to the doctor and shortly after getting his dementia diagnosis, updated his estate plan and moved to another state with his wife to live his remaining years close to one of his children.   His children no longer resided in the same state where they were raised.

Many of us would not be willing to make such a drastic change, perhaps because it doesn’t fit in with our idea of how our life in our elder years is “supposed to be” and doesn’t seem to fit with our idea of how we should “be independent” and not be a burden on loved ones.  But often the simple denial of the inevitable, along with the lack of planning and of stock-taking, means that we most certainly will be a burden on our loved ones.  I have joked with clients about this, that no client has ever informed me that they want to be a burden on their adult children . . . !

Of course there is also the financial piece of the planning.  Given the meager state of average retirement savings for many boomers and other elders, along with the hard reality that many retirees are just one health catastrophe away from bankruptcy, some folks take the “why bother?” approach as an excuse to do nothing.  Procrastination is, after all, an effective means by which to focus on what really matters – or at least what keeps us busy, which are seldom the same thing!

Okay, enough with the wisecracks. Death denial is only one side of the coin here so to speak, and on the other side is the youth glorification, its own form of denial of encroaching mortality.  In our present independence obsessed “aging in place” mantra muttering mainstream, we often fail to see the hidden costs of our independence and the burdens it often places on others.

Yes, I’m thinking of all the family (unpaid) caregivers.  The vast majority would not have it any other way most of the time, but the fact is that our longevity is getting longer and less financially certain all the time!  Couple that with the shrinking number of women (the ones who have tended to provide these services) who do not work outside the home who are available for such work) and it can cause some genuine concern.  More of us, particularly many of the divorced and single baby boomer cohort, will face much more interesting challenges with our often fractured and reconfigured family lives.  There is no “standard template” for a blended family relationship.

While I’m thinking of it, here’s a link to a recent US News & World Report article about family caregiving and how its future is changing.

Another aspect of the youth glorification beyond the self-loathing some elders feel is the denigration of the aged, the ideas that elders are no longer worthy because of their diminished capacity, usefulness or social or economic relevance.  This is when being an elder becomes a human rights issue!  Yes, I’ve blogged about the human rights of elder previously, but this is an evolving field.  I’ve recently learned about an organization called The Global Alliance for the Rights of Older People.  This organization is comprised of several international organizations as well as nongovernmental organizations (NGOs) who work together to raise awareness of the threats and challenges elders face in different parts of the world and supports the creation of international human rights instruments as tools to strengthen the rights of older people.

So I will close with an observation which I believe is illustrated by a Carl Sandburg poem featured below.  Is it really too difficult to filter through the noise and the modern day disease of incessant busy-ness to talk about this?  What if we could consider the present importance of our relationships which sustain us in a long term “what if” scenario that went beyond the planning for our inevitable demise?  Would that change the way we are living right now?  I think it would.  I also think quieting the mind and considering the stillness is one means of opening the door to welcome those questions for contemplation and consideration.

The Answer, by Carl Sandburg

You have spoken the answer.
A child searches far sometimes
Into the red dust
                          On a dark rose leaf
And so you have gone far
                         For the answer is:
                                                 Silence.

 In the republic
Of the winking stars
                          and spent cataclysms
Sure we are it is off there the answer is hidden and folded over,
Sleeping in the sun, careless whether it is Sunday or any other day

       of the week,

Knowing silence will bring all one way or another.

Have we not seen
Purple of the pansy
                   out of the mulch
                   and mold
                   crawl
                   into a dusk
                   of velvet?
                   blur of yellow?
Almost we thought from nowhere but it was the silence,
                   the future,
                   working.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

Physical Intimacy and Elders or . . . . Sex in the Nursing Home

Denver Botanic Gardens July 2014

Denver Botanic Gardens July 2014

Deep within the youth-glorifying part of our culture, right next to the expansive real estate of death denial, is a controversial aspect of our humanity subject to the aging process – the physical intimacy-denying part of our collective conception of what is “appropriate” behavior for elders. It might also be part of ageism, but I’m not too sure about that.  Last month I attended a continuing legal education program put on by two of my colleagues – Ayo Labode and Mary Catherine Rabbitt.  One of Mary Catherine’s short topics was intimacy between residents of skilled nursing facilities.  In fact, the topic for this week’s elder law section CLE program at our monthly meeting at the Colorado Bar Association offices is “sexual expression in long term care.”  I know it will be well-attended!  I thought it was time to bring out this draft of a post I wrote some months back and was waiting to finish.

I recall Roger Angell’s New Yorker article I featured in a previous post entitled “This Old Man.”  In fact, I will include a quote from it here:

More love; more closeness; more sex and romance. Bring it back, no matter what, no matter how old we are. This fervent cry of ours has been certified by Simone de Beauvoir and Alice Munro and Laurence Olivier and any number of remarried or recoupled ancient classmates of ours. Laurence Olivier? I’m thinking of what he says somewhere in an interview: “Inside, we’re all seventeen, with red lips.”

Many of us in my field of elder law are familiar with situations that run the gamut of this human need for intimacy that includes sexual expression in old age – whether it is someone’s 85-year-old mother who found her new husband through online dating or is the commonly occurring but not well-accepted sexual intimacy between residents in a skilled nursing or assisted living facility.  We are charting a new course for elderhood here!  Here’s a link to an article about sexually transmitted diseases and folks enrolled in Medicare.  The baby boomers have much to learn from our parents’ generation and many believe that with the burgeoning number of boomer elders, this issue is likely to remain a hot button for many years to come.  But let’s face it, in the context of elderhood, few are comfortable with talking about sex or death.

Intimacy is a basic human need for many of us that continues regardless of age and living situation.  As the boomers age and the number of assisted living and SNF residents continue to grow, this will be a challenge that will need to be addressed on a strategic or big picture level.  Here’s a short piece written by a long term care Ombudsman on this topic.  There are many sources from the psychological and medical community which address the benefits of intimacy for elders living in an institutionalized setting.  A newsletter for Geriatric Care Managers featured a story on Sex in the Nursing Home.

Beyond the ageist factors that can tend to make elders invisible and simply “too old” to merit sexual expression, the mental capacity issue here looms in the background in at least some segments of the population who are residents in long term care or similar type living arrangements.  Who determines the level of capacity required for consensual sex and what are the boundaries?  Australian authors Laura Tarzia and two others published a paper entitled “Dementia, sexuality and consent in residential aged care facilities.  You can read it here.

A related issue involving consent concerns sexual abuse, but most of those cases involve assault by staffers on residents, although there has been well-founded concern raised when registered sex offenders are residents of long term care facilities, particularly when residents and families are not notified due to the fact that there is typically no notification requirement, but some states are working on ways of keeping such residents out of the “general population” at a skilled nursing facility.

If you think it’s not so controversial, read this post about staff members at an Iowa nursing home who lost their jobs in the wake of sexual relationship between two residents with dementia in 2009.  A recent blogpost on this topic features a video clip from a doctor addressing some of the difficult issues.  The sex taboo in SNFs is going to have to change.  Read an interesting post here by an assisted living staffer about the large number of sexually-active elders and elders’ rights to “sexual self-determination.”

I will be writing more on this topic and I anticipate it will becoming much more mainstream as we look more closely at many of our ideas about how we age.  Stay tuned.

©Barbara Cashman  2015   www.DenverElderLaw.org

Part II of Law and Culture’s Response to Death: Where Do We Put Our Dead?

centennial estate planning

Ketring Lake at Dusk

 

This is a continuation of my previous post about “where do we put our dead?” but I am in fact beginning at the end (depending on how you look at it of course!) with the aspect of dying and how this factors into our death denying culture.

In chapter 12 of The Hour of Our Death, entitled “Death Denied,” Philip Aries introduces the chapter with “the beginning of the lie” in which he draws upon ample support in literature for this new development and the beginning of the medicalization of death, which of course persists today.  Looking at Tolstoy’s Ivan Ilyich written in the 1880’s, Aries notes the similarity of the medical lie that cheats one out of one’s own death with an experience he recorded of a priest dying in 1973.  He notes next the progression of the denial into what can be considered many aspects of its present states – the developing and deepening “death taboo” as described by the Englishman Geoffrey Gorer in 1963 (Aries at 575); its emphasis on discreet funerals, a certain indecency of mourning; and as the unwillingness to speak about the inevitable deepens, there enters the triumph of medicalization – the ultimate in estrangement from and incapacity to reckon with one’s own death.

I’m thinking also of another work, this one by B. Hayslip, Jr. and C. Peveto, “Cultural Changes in Attitudes Toward Death, Dying and Bereavement,” (2005: Springer) in which the empowerment and disempowerment choice is presented squarely to the patient in the medical setting.  The question examined included three with widely varying responses, which were further broken down along ethnic/cultural affiliations among Americans.  Most of the respondents stated they would want to be informed by a doctor that they were dying, while fewer responded that it was as important for others, such as family members, to be informed.  The most interesting number was the very small – 4-7% of respondents who related that they had told another person they were dying.  Hayslip and Peveto at 7, 114-15.  Here there is more than ample evidence to let the medical establishment do the “heavy lifting” as it were, relating to communicating a person’s imminent demise.  Age and ethnicity play important roles in how a person, as a member of a community views illness, mortality, old age, dying and disposition of a body and the grieving process attendant to that.  Id. At 78-84.

So with the medicalization of death we have other factors, whether they are causal or correlative is a question for social scientists to research.  What was once a basic fear, as writers like Ernest Becker put it  – the fear of death – has now become complicated with the alienation attributed to the medicalization of the dying process and our estrangement from it as a natural process, as part of life.  The fear is complicated now by an unspeakable anxiety which makes the fear into something much bigger and more complex than it is.  Of course, the medicalization of death is not a factor in death denial in many more traditional cultures and there are important developments in our country relating to the backlash against all of the medical intervention (but then that is another topic!).  Bottom line for my purposes here is that the medicalization of death has contributed to our sense of powerlessness and alienation from our own death and the death of others.  You might of course observe that the sense of powerlessness over death has always been with our kind and I would of course agree, but the alienation and its particular form is both a modern and post-modern phenomenon which I find particular troubling and symptomatic of a greater loss.

Finally, I will take a look at the so-called “green alternative” to burial: cremation.  Both of my parents wished to be cremated and their cremains are inurned at Ft. Logan.  My challenge with cremation is that it seems to be a further extension of the alienation from death.  The body is dispatched to the funeral home or mortuary, which may or may not have its own crematory on site and if it doesn’t sends the body out to another facility for such purpose.  I am reminded of my late aunt’s comment “just cremate me,” which struck me as being similar to “just take out the trash.”  I loved my aunt and found the comment upsetting at the time, even if I didn’t have any qualms with her cremation following her death.  I can’t tell you how many clients I have talked to about cremation and the rather unique issues it raises that many folks have not previously considered during the past where burial at a particular location was the unstated choice for nearly all people.  What container will hold the ashes?  Where will they be kept?  Who will keep them?  What happens to them when something happens to the custodian of the cremains? While cremation affords many more choices than burial to answer these questions and uniquely express the deceased person’s wishes, more often these questions are never answered and people can get stuck with their ex-wife’s uncles remains. . . . !

I haven’t had the chance to watch this PBS series called Dying in America from 2004, but you can watch it here.  Crematory workers are not immune from graverobbing so to speak, a New Jersey funeral director was convicted of selling body parts, while a German crematory employee was allowed to keep the proceeds from some eight years of sifting through cremains for precious metals (to the tune of $800,00.00) because a court ruled that such property belonged to no one.

I guess the biggest issue I have with cremation is the anonymous disposal of the corpse.  The corpse is typically dispatched by strangers hired by the family and the operator of the incinerator is the sole witness to the final dissolution of the deceased person’s physical being.  Yes, it does hasten the ashes to ashes transition, but I have reservations about how the process is undertaken, as if the body as a container is deserving of very little respect.  I just did a search and found that there is a funeral pyre in Crestone, Colorado.  This makes the cremation a public event, as practiced by Buddhist and Hindus of today and a different choice for cremation.

So I’ll end this post with something a little more upbeat (perhaps).  Fresh off the internet . . . Here are the top ten “classic” (I read that as dinosaur) rock songs about death:

Keep Me in Your Heart by Warren Zevon.  I’ve previously posted a link to the youtube of this beautiful number, which Zevon wrote in the face of his own mortality (he had terminal cancer)

Knocking on Heaven’s Door (okay, I switched this fave of mine from another Dylan tune that was listed)

The Last Carnival by Bruce Springsteen (a tribute to two deceased members of the E Street Band)

The Wreck of the Edmund Fitzgerald by Gordon Lightfoot, a beautiful ballad that takes the listener back to a seemingly different time and a relationship which most of us don’t have with tragedy

The Show Must Go On –  by Queen. I watched this video of the meaningful song performed by frontman Freddie Mercury as he was growing progressively weaker with AIDS

Dancing with Mr. D – the Rolling Stones (drug overdose isn’t the only means mentioned)

In My Time of Dying – Led Zeppelin

Tears in Heaven by Eric Clapton

42 – by Coldplay . . .  okay, it’s not classic rock but it’s a band I really like and the number 42 happens to be, as revealed in The Hitchhiker’s Guide to the Universe, “the answer to life, the universe and everything.”

Don’t Fear the Reaper – Blue Oyster Cult (this was #1 on a list I found but I remember this from high school and all the vampire movies popular at that time, so it got demoted in my listing!)

©Barbara Cashman  2015   www.DenverElderLaw.org

 

Law’s Response to Death: Where Do We Put Our Dead and Where Do They Go?

denver elder law

Mount Hope Cemetery

After a couple weeks off from blogging I am back.  No, they weren’t actually planned that way, these things do happen and I do my best to regard these occurrences as kairos!  The word “cemetery” has many different meanings and connotations.  The online Merriam Webster refers to its origins as coming from the Middle English cimitery (derived the from Anglo-French cimiterie).  Its Latin origin is coemeterium and from the Greek koimētērion  meaning sleeping chamber, burial place, from the verb koiman to put to sleep. It traces the word’s first known use to the fifteenth century, but it seems natural that this word being based on the Anglo-French would have had an earlier iteration.  Cemetery is translated in German as Friedhof, a court or place of peace.

Cemeteries are a kind of public park, perhaps before many communities had such a thing (except perhaps for grazing cattle).  In this country, one source has named 1831 as the year the first cemetery was founded, with the  construction of Mount Auburn Cemetery in Cambridge Massachusetts.  I have featured another picture from Mount Hope in Rochester, New York, which was founded in 1838.  You might be wondering what larger European cities have done with all their dead.  Perhaps you have visited “the catacombs.”  A catacomb is simply an underground cemetery, a place for putting away human remains that was first built by the (ancient) Romans.   Of course there were Romans in Paris, which was then called Lutece.  Some of the more famous catacombs are those of Paris which are comprised of more than two hundred miles of tunnels, some lined floor to ceiling with bones and skulls.  Here’s a link to a cool picture of that along with some fascinating history of the bones of between six and seven million persons.  Compared to the elaborate cemeteries that are found in so many cities, catacombs seem to be a great “equalizer” in terms of the anonymity of the dead.  In addition to the underground catacombs in many European cities there are numerous ossuaries, rooms into which the bones of the dead are place.

So how did communities historically dispose of their dead?  In many parts of the world, this remains a mystery because there often doesn’t appear to be any historical record or evidence of of really old cemeteries or burial grounds that are identified as such.    Back to the title of this post – so how did we move from charnel hill to churchyard or memorial park?  What began perhaps as a memorial park in some communities might have been overtaken from the natural place of rest and continuity, of perpetual home to a display of ornate stone and limited and managed natural surroundings, all neat and tidy perhaps with nature and its processes seemingly kept at bay.

In addition to the public health aspects of managing the dead and the dying, their dispostion is now well-regulated in all of our states.  This includes the move from what were once private arrangements taken care of by family members to the consumer-driven service industry of providers of mortuary and funerary services.

Part of the legal protections surrounding the dead has evolved along with how we  think of and how memorialize the dead.  There are international law protections relating to corpses which grew out of international law as reflected by our long history of warfare between nations and of course civil wars.   The legal status of a corpse is in most respects as that of property, but there are important distinctions to be made.  Here is a link to a 1997 article in the Whittier Law Review about necrophilia.  Jeffrey Dahmer is the most infamous modern sufferer from necrophilia.  Such laws relating to corpses, to the extent they exist and are enforced, uphold our moral compass and social respect for the dead and our treatment of the dead with dignity and respect.  Desecrating, plowing over or covering up graves is a criminal offense.  Hate crimes are often extended to a victim’s grave, often targeted for the victim’s race or religious affiliation.

Concerning the cemetery, many factors came together in different ways across cultures to allow for the placement of the dead within the community.  Perhaps in many ways cemeteries are places where the dead can be “kept” so as not to be free to wander about and disturb the living.  The final resting place should be one that is afforded respect so that there is no need for the dead to disturb the living.  It is essentially a segregation between the living and the dead.  In many religions there is the idea that the living and the dead will be reunited – I’m thinking about Mircea Eliade’s reference to the Lakota ghost dance in Death, Afterlife and Eschatology (1967: Harper & Row) at 85.  And lest we forget for those religions which have a messiah, the significance of the sealing of the Golden Gate in Jerusalem by the Ottoman Sultan Suleiman the Magnificent in 1541, in which it is said the Ottomans constructed a cemetery outside it so as to prevent the entrance of the Messiah.

So back to the cemetery and the angel depicted above.  In his work tracing the attitudinal changes of the western tradition’s approach to death and dying, Philip Aries describes in The Hour of Our Death (1981: Knopf) at chapter ten, entitled “The Age of the Beautiful Death,” a release from suffering and an end to toil at the end of a life.  In this chapter which has numerous references to literature of the period, including letters and journals from a French family, the writings of the Bronte sisters, the rise of spiritualism and other cultural phenomena from the 18th through the early part of the 19th century.  I will be continuing this post soon.

So, I couldn’t pass up this opportunity for a YouTube serenade, this one with Saint-Saens’ Danse Macabre . . . (Opus 40, first performed in 1875).

©Barbara Cashman  2014   www.DenverElderLaw.org

The Expression of Grief as an Essential Human Activity

Mount Hope in Rochester, New York

Mount Hope in Rochester, New York

Say what?! Grief, Barb – isn’t that suffering that we all want to avoid?  Well, not so fast. Yes, I am working my way up to some more posts about euthanasia, and grief and grieving is the middle ground for this passage.  Sadly, I have been unsuccessful in locating any old SNL clips on the internet which feature Gilda Radner as Emily Litella, I’m thinking of her piece about “Youth in Asia.”  I’m an optimist, so I’ll continue to search . . .

Let’s begin this one with a question – What is grief?  My web search turned up a wide variety of things including: keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret; a strong, sometimes overwhelming emotion for people, regardless of whether their sadness stems from the loss of a loved one or from a terminal diagnosis they or someone they love have received; and it seems that grief can be both a cause as well as a result.  This is demonstrated by the verb “grieve” which is the activity of feeling, experiencing grief.  One source noted that the definition of grief depends on things like who we are grieving and when we are grieving and also why. I find it strikingly odd that in the sentence following such broadly appropriate subjective factors, the accepted “stages” of grief are identified.  I am certain that Dr. Kubler-Ross did not intend her “stages” to become the accepted norm for what passes for grief and grieving in this country, but that is what has happened. The reference to these stages  is invariably accompanied by a disclaimer like “while there is no one ‘right’ way to grieve. . . “  but there most certainly is a correct way because we have quantified and objectified this most personal and subjective of human activities!

The fact is, we have precious few recognizable rituals around the expression of grief, and because we lump it under that generic heading of “suffering” we insist that people get through their own stages as quickly as possible so that they can “move on” with their lives.  Odd way of minimizing this feeling that can arise over most any loss, in fact it can be argued that the small losses and how we handle those are good practice for the larger ones that invariably lie ahead.  This is one of the reasons I always insisted on pet funerals when my kids were young.  If you don’t start somewhere by practicing, you just don’t have any life experience on which to draw when you may really need a bit in reserve.

So, why am I criticizing the focus on the stages of grief?  I do not mean this in any way as a criticism of Dr. Kubler-Ross’s groundbreaking work, but rather as an observation that grief has now come to be objectified and quantified such that there are acceptable parameters identifiable by the medical and psychological community.

Sometimes this thinking about feeling can simply go too far.  What comes to mind here is the lost sense of balance.  I am going waaay back here, to the ancient Egyptians and the symbol that has become known as the eye of Horus (as personified by the goddess Wadjet and no, not the video game by the same name. . . . ). You might recognize it, it looks like this:

 

[thank you Wikipedia – you can make a donation to their cause here]

 

So the components of the eye of Horus consist of several constituent senses and also correspond to measurements. Forr my purposes here I am concerned with its association with the six senses: smell, sight, thought, hearing, taste and touch.  Yes, thinking is listed as one of the senses – it is one of our faculties after all.  In our mainstream culture that is so focused on quantifying things, identifying objective reality of a material universe, thinking gets elevated far above its historical position in a more traditional pantheon of human attributes.

I refer to the eye of Horus for purposes of asking ourselves about the place where we find ourselves in this culture with all of our thinking, our information and our never-ending thirst for more.  We have become estranged from uncertainty and questions about which thinking does not provide suitable answers.  We have forgotten how to ask the philosophical questions and how to be with the mysteries. I am not diminishing in any way the information which we now know, I am merely wondering about its proper context.

Death, the end of life and the end result of feeling the loss of another or a part of ourselves – these are  mysteries in many ways that thinking can help us with but thinking is only part of the response, the activity required.  Our over-reliance on thinking has caused us to forget how we honored death and the end of life in previous times. I do not believe this is progress and I find this aspect of the death taboo very troubling – that we cannot even comfortably talk about that about which we cannot really “know” from a thinking sense.  This doesn’t mean we are not equipped to talk about this topic from other perspectives – it just means we are much less likely to be comfortable in doing so.

So, I will end this post with a poem penned by a friend about mystery.

It was written by Richard Wehrman, a co-retreatant with me at a seminar in Rochester, New York last September.  The topic of the retreat was “The Angel of Memory.”  Thankfully, Richard willingly shares his beautiful poetry.  This one is entitled “Visits From the Dead.”

This morning the Dead visit me on

the veranda. We drink strong coffee and

watch the wind raise white waves on the sea.

The Dead do not like to be called the dead.

“That is a word the so-called Living use,” they say.

“We are the ones alive, the ones who are real.”

The sun shines through my companions. I cast

a shadow; they do not. “We are so much clearer than you,

like pure water, like crystal.” If I blur my eyes they

are there, I can only see them with my heart.

They are complete like a jewel, like a chakra,

a whole life from beginning to end.

Later we go exploring together, up and down

the sandy paths by the sea. “We are beings

as you are—as are the trees, the animals, the clouds

in the sky.” And where do you live,

I ask them? “We live here, in this World,”

they say, “where else could we be?”

In the evening I gaze over the palms and orchids,

over a glistening vibrant sea. Everywhere I turn,

living beings look back like raindrops, sands

cast up by the sea. Their vibration is endless, like

looking through rippled glass. We are one

multiplicity, innumberable, inseparable.

 

What if the dead – not our children – are our future?  So, dear reader – here’s to life and being alive and conscious of it!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

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

The Cultural, Social and Socioeconomic Aspects of Elder Law

14_04 blog pics 001

Harry Moody’s page about medical model for elders

 

In case you’re wondering about the origin of this post, it is the title of a continuing legal education panel I participated in last week which was sponsored by the Boulder County Bar Association.  Other participants were elder law attorneys of diverse backgrounds including Ayo Labode, Jodi Martin and Lorenzo Trujillo and the panel was moderated by Martha Ridgway.  A focus of our conversation was about the challenges in meeting our clients where they are now, and recognizing from where they have come.  Listening carefully is an important skill in this regard.  Each of us was asked to contribute a useful document for the materials.  I chose an old favorite of mine from the University of New Mexico – the Values History: A form to assist you in making health care choices in accordance with your values.  This important document is available online in pdf format for free download here.  There are other resources from the ABA that are also helpful to start the difficult conversation about end of life choices.

For today’s post, I will focus on the health care questions in the context of the cultural and socioeconomic factors that affect each of us – whether it is from our family of origin, our family of creation or our family of choice.  I’ll start with the history of informed consent.   Informed consent has simple and more nuanced definitions that are situation dependent.  I will quote from a good overview I found from the University of Washington School of Medicine, written by bioethicist Jessica de Bord:

What are the elements of full informed consent?

The most important goal of informed consent is that the patient has an opportunity to be an informed participant in her health care decisions. It is generally accepted that informed consent includes a discussion of the following elements:

  • The nature of the decision/procedure
  • Reasonable alternatives to the proposed intervention
  • The relevant risks, benefits, and uncertainties related to each alternative
  • Assessment of patient understanding
  • The acceptance of the intervention by the patient

I have previously blogged about the tragic history of “informed consent” in the context of World War II, the Nazi doctors and the Nuremberg trials.  In this country we have the recent and shameful legacy of the Tuskegee Study, which is a legacy of the disenfranchised that informs many African-Americans’ experience of our health care system and the allocation of its resources.  I thank my friend and colleague Ayo Labode for including reference to this study in her comments at the CLE.

The Tuskegee Study took place in Macon County, Alabama, where 600 poor and illiterate African-American men were enrolled in the study.  The men were offered many things for their participation, including medical exams, meals on exam days and burial stipends.  The study was commissioned by the U.S. Public Health Service and it was called the “Tuskegee Study of Untreated Syphilis in the Negro Male.”  What the participants (and their families) didn’t know is that the study, begun in 1932 and concluded in 1972, was non-therapeutic.  This nontherapeutic study continued even after the introduction of penicillin as treatment for syphilis by 1947, but none of the participants were offered or given the treatment.  In 1972, an Associated Press journalist broke the story of the 40 year long nontherapeutic study.  In 1997, President Clinton gave an apology for the study.  Here is an excerpt from the President’s remarks that is particularly relevant to the topic of this post:

The legacy of the study at Tuskegee has reached far and deep, in ways that hurt our progress and divide our nation.  We cannot be one America when a whole segment of our nation has no trust in America.  An apology is the first step, and we take it with a commitment to rebuild that broken trust. We can begin by making sure there is never again another episode like this one.  We need to do more to ensure that medical research practices are sound and ethical, and that researchers work more closely with communities.

So in order for each of us, as people and as elder law attorneys working in a field with so much psycho-social and emotional content, to be able to respect each others’ differences – we first must recognize them.  Each of us, as adults, needs to confront the difficult questions of who we will choose to be our surrogate decision-maker (agent under a medical POA) in the event we are unable to decide, and we need to talk about what we want in end of life care.  If we are to honor our self-determination and autonomy in our dealings with the medical-industrial complex, we must take the necessary steps now.   This will be my final installment on the May is Elder Law Month theme for this year.

©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