Dementia and Memory: Out of Time, Out of Mind II

Mount Hope Angel

Mount Hope Angel

This second part of the post focuses a bit more on the qualitative aspect of memory – memory as meaningful life activity, not just a necessity of daily functioning and detail management that holds together moving parts.  I will include the quote from James Hillman I used in my first post:

Why do the dark days of the past lighten up in late recollection?  Is this a subtle hint that the soul is letting go of the weights it has been carrying, preparing to lift off more easily?  Is this a premonition of what religious traditions call heaven, this euphoric tone now coating many of the worst experiences, so that there is little left to forgive?  At the end the unforgiveables will never be forgiven, because in old age they do not need to be forgiven: they simply have been forgotten.  Forgetting, that marvel of the old mind, may actually be the truest form of forgiveness, and a blessing.

Hillman, The Force of Character at 93.  In case you’re wondering about whether I am promoting some Romantic view of memory or denying all the recent advances in neuroscience, I would unequivocally state “no.”  In fact, a favorite of mine in that discipline is Dr. Norman Doidge’s book published in 2007 entitled The Brain That Changes Itself.  Particularly instructive for purposes here is his chapter entitled “Turning Our Ghosts Into Ancestors,” about psychoanalysis as a neuroplastic therapy that helps a sixty-year-old man recover long-buried memories of the death of his mother (when he was a small child) so they could be transformed and improve his relationships and life.

I think part of what Hillman is talking about is that quality of memory, which often gets neglected in our present culture that glorifies the person as a right-bearing agent of our own destiny, valued for capacity, independence and measurable productivity.   This makes me think of Massimo Cacciari’s book The Necessary Angel.  I find intriguing what he says about our space-filling tendencies of this modern obsession  we have with chronological time, especially where he observes that “the greatest idolatry is the cult of the has-been of the irreducible it-was.”   Cacciari at 51.

If this obsession of the factual, objective or “forensic” memory is idol-worship of the “cult of the has-been,” and indeed widely and universally worshipped indeed as “chrono-latry,” then might the recognition that letting go of details that do not serve life review and accumulation of wisdom be an appropriate response to that greed, of releasing the power of the idols?  If we as human beings are more than our personalities accumulating and exchanging our experiences as a form of “currency,” then recognizing this and getting past the worship of the idols of chrono-latry would look like progress!

One very important aspect of the quality of memory for many elders is as a part of life-review, of integration and wisdom acquisition and consolidation.  Another of the qualities of memory is kairos.  It strikes me that our generation’s dependence on smartphones means that many of us need to memorize fewer of the important operational details of our lives.  This is of course liberating, but it is also a trade-off.  No, I won’t go astray here to discuss that issue!  Suffice it to say that the term “memoria” in the Western classical tradition is based on the Latin term for memory.  Memoria was one of the five canons of rhetoric, which grew out of oratory.  The classical orators used no notes, let alone Power Point slides!  I add this point to draw the connection between memoria and kairos – I’ve blogged about it previously.  Kairos being the right time, the opportunity, based on an attunement to the right time to recall memory – memory being identified in the Ad Herennium as “the treasury of things invented.”  So perhaps we might come to more closely examine and question our relatively recent and very narrow definition of what is memory and look at the historical notion of memory in its broader context.  This broader view of time in both qualitative and quantitative aspects will certainly diminish the power of the idols of chronolatry.

Yes, this reminds me of the Steely Dan song, Time Out of Mind – you can listen to it here.  This is life review, traditionally a province of poets to write about the letting go at the end of a life and there is thankfully much wisdom from that quarter.

From stanza IV of Dejection: An Ode, by Samuel Taylor Coleridge:

… we receive but what we give,

And in our life alone does Nature live:

Ours is her wedding garment, ours her shroud!

         And would we aught behold, of higher worth,

Than that inanimate cold world allowed

To the poor loveless ever-anxious crowd,

         Ah! from the soul itself must issue forth

A light, a glory, a fair luminous cloud

                Enveloping the Earth—

And from the soul itself must there be sent

         A sweet and potent voice, of its own birth,

Of all sweet sounds the life and element!

 ©Barbara Cashman  2014   www.DenverElderLaw.org

Dementia and Memory: Out of Time, Out of Mind I

Mount Hope Cemetery, Rochester NY

Mount Hope Cemetery, Rochester NY

So I’m back to that rather slippery theme of memory again – this is the first of two parts. The online Merriam-Webster defines memory as: (1) the power or process of remembering what has been learned; (2) something that is remembered; and (3) the things learned and kept in the mind.  This all sounds very quantitative and linear to me, right in line with most conventional thinking about memory as factual recall, that forensic memory which is objectively measurable.  I think the definition of memoria from the ancient Greeks is more useful and inclusive of the human experience.  Conveniently, it also encompasses the non-chronological aspect of time about which I’ve written before – kairos.  We modern Americans come to think of memory in some fairly odd contexts, like computer memory and we often liken what’s in our heads to our personal hard drive as if it were some kind of data storage system – which it is of course in a very narrow sense.  This also accounts for much of our recent “de-mentation” or offloading many of the factual details of our daily lives like calendars, phone numbers and emails to our smartphones.  So what is the nature of memory in our minds? Is the memory of our heads different from the memory of our hearts?

The Atlantic Monthly recently featured the article “Why I Hope to Die at 75,” by Ezekiel Emanuel, physician and bioethicist.  The message he states is one I have offered to clients many times: longevity has a down side, a dark side potentially in the form of a “gray area” of diminishing cognitive capacity, perceived “uselessness” and for many of us, dementia.  I think the article is an important counter point to our death-denying and youth-glorifying mainstream culture that tends to view aging as a long process of descent from some place in the prime of our adult lives, along a journey where things can only get worse.  But this article that states emphatically – 75 is long enough.  This sounds a bit like some of my Baby Boomer age mates – who having lived through a parent’s dementia – proclaim they want an advance directive that has a box which states something like “if I get dementia and need Depends, just shoot me.”  Don’t get me wrong, I applaud Dr. Emanuel’s message on several different levels in which it challenges conventional wisdom and the misplaced faith our culture has in our medical-industrial complex to keep our lives extended (not accounting for quality or purpose), but I think it misses the mark.  Because babies are delivered via scheduled Caesarean section, does that mean we can cash in our chips at a scheduled time as well?  I think not!

We are re-negotiating the tightrope of what we believe we control and what we do not control as it affects our lifespan in our old age (just as in any other stage of life, but perhaps with less baggage).  We have become used to so many answers from the medical establishment that when we have this unprecedented number of elders facing dementia and/or incapacity, we are likely to simply “declare war,” spend lots of money and turn to big Pharma for some “fix” of our “problem.”  The drug companies are more than willing to oblige and provide us with a pill to help assuage our fears, and yet another tool to interrogate the one with the slipping memory . . .  “did you remember to take your pills today?”  It often seems like an elder can’t exist as such without some kind of medical intervention!

Evident in Dr. Emanuel’s insightful article is the denial of the slowing down associated with old age (read the account of the aftermath of his father’s heart attack).  I contrast this with what the late psychologist James Hillman wrote about in The Force of Character.  In chapter nine, entitle “Leaving,” Hillman describes the conflict between his sixty-six year-old patient and her nonagenarian mother, for whom she supervised care.  The patient was continually frustrated with her mother’s inability and seeming unwillingness to be principally concerned with the factual details of forensic-based (often short term because it involves daily functioning) memory.  Hillman observes (at 88) that he saw this mother daughter conflict as exemplifying “the difference between short-term and long-term memory.  It is as if you cannot have both at once.  One has to give way to the other.”  The chapter provides useful insight into the “life review” stage of elderhood which is gaining wider acceptance as a part of life, not just a loss of the familiar ways of doing from pre-retirement adulthood.  I think it is one of the centerpieces of connected and engaged elderhood.   Hillman closes it with the following questions, so often neglected:

Why do the dark days of the past lighten up in late recollection?  Is this a subtle hint that the soul is letting go of the weights it has been carrying, preparing to lift off more easily?  Is this a premonition of what religious traditions call heaven, this euphoric tone now coating many of the worst experiences, so that there is little left to forgive?  At the end the unforgiveables will never be forgiven, because in old age they do not need to be forgiven: they simply have been forgotten.  Forgetting, that marvel of the old mind, may actually be the truest form of forgiveness, and a blessing.

Hillman, The Force of Character at 93.

This observation brings me back to the rhetorical or existential question I posed in my previous blogpost about what is remembering and what is forgetting.  Hillman weaves that question into a life’s span.  I will close this first post with a poem: Walt Whitman’s poem “Whispers of Heavenly Death”

Whispers of heavenly death, murmur’d I hear;
Labial gossip of night—sibilant chorals;
Footsteps gently ascending—mystical breezes, wafted soft and low;
Ripples of unseen rivers—tides of current, flowing, forever flowing;
(Or is it the plashing of tears? the measureless waters of human tears?)

I see, just see, skyward, great cloud-masses;
Mournfully, slowly they roll, silently swelling and mixing;
With, at times, a half-dimm’d, sadden’d, far-off star,
Appearing and disappearing.

Some parturition, rather— some solemn, immortal birth:
On the frontiers, to eyes impenetrable,
Some Soul is passing over.

The Complete Poems of Walt Whitman (1995: Wordsworth) at 328.

To be continued . . . .

©Barbara Cashman  2014   www.DenverElderLaw.org

You’re only old once or. . . mindful aging as spiritual practice?!

Swan at Lough Gur

Swan at Lough Gur

In case you’re wondering, yes, I have a copy of the Dr. Seuss book “You’re Only Old Once!” in my office waiting room. What, you say your kids have never read that one to you?  In case you’re wondering, yes Dr. S was OLD when he wrote it, and it was released in 1986 on Mr. Geisel’s 82nd birthday.  It is a fanciful “day in the life” of an elder American.  I wouldn’t say it has the same level of incisive social commentary as my Dr. S. faves including The Sneetches (about the stupidity of racial discrimination), The Zax (about the wisdom of integrative negotiation) or The Butter Battle Book (about the craziness of MAD – mutually assured destruction, that Cold War relic we somehow managed to survive). But that might just be because I haven’t read this book to my kids at least fifty times.  (Maybe they can read it to me in a couple more years, if I haven’t misplaced it by then.) My other Seuss favorites are numerous  – oh, I don’t have the space for a discussion of Yertle the Turtle or Horton Hears a Who. Maybe in another blog post though.

If you’d rather listen to someone else reading the book (with the pictures of course) check out this youtube video of it. Okay, back to the aging and April Fool’s theme . . .  I am always [as a baby-boomer] struggling with coining a term for the special form of forgetfulness, cognitive compromise, dementia, whatever[!]  that affects those of us who are elder law attorneys of a certain age.  I think I remember writing a blog post once about dementia being contagious.. . .  So here goes.  A colleague and I were recently discussing our experiences with mental health challenges.  I thought this topic would make a great blog post topic, particularly for April Fool’s.  Here are a few suggested additions I propose for the DSM-VII:

Attention Surplus Disorder (ASD) –  sometimes mistaken for OCD and often referred to as “nervous Nellie” syndrome, this occurs when a person’s quality of life is threatened when their sleep is interrupted by the looming prospect of overdue library books, and their vision is impaired by hyperfocus on the physical meaning of the dark circles under the eyes or formation of crow’s feet on the face of their partner.

De-mentation – this condition is practically reaching epic proportions as nearly all Americans have “smart phones” which means that as our phones become progressively smarter with the latest technology, we, the operators of our smart phones, get dumber all the time.  For example, when was the last time you actually remembered someone’s mobile phone number (without having to look it up on your smart phone)????

Displasia – pronounced “dis-place-yeah.”  This behavior is characteristic of the opposing spectrum of the obsessive-compulsive disorder, basically it is evidenced by a person spending exponentially more than the average forty-five minutes per day looking for a particular paper on their desk or some place in their office.

Paranoid Cybercosis —  is a 20th century and present day phenomenon, the disorder based on a vaguely formed conspiracy theory that yes, just like in all the great sci-fi movies of the last millennium,  the machines are out to get us.

Reduplicative paramnesia – the belief, delusional at least 50% of the time, that a location or place has been duplicated and exists in another place at the same time.  For older adults, this can sometimes involve time travel that is otherwise known as “déjà vieux” and sometimes confused with “déjà vu.”

Stendhal syndrome (I remember him from my French class in college) is a psychosomatic illness  that can strike when a person is exposed to a large amount of beautiful things or breathtaking scenery in a short time.  If we have spent our entire lives merely surviving and tolerating our existence, beauty can be quite upsetting!

Trichotillomania – this is exceedingly rare in those of us of a certain age, because as my grandmother once explained to me, when you get old, there isn’t as great a need to shave anymore.  This one is the urge to pull one’s hair out, basically from any area of the body that still manages to grow hair.

So, you’re maybe wondering . . .  what’s this link between humor and spirituality?  I haven’t read this book, and I didn’t know the Jesuits had a lock on this, but in 1989 James Martin, SJ, published Between Heaven and Mirth: Why Joy, Humor and Laughter Are at the Heart of the Spiritual Life.  On a similar note, here’s a link to a PBS Frontline interview with Rev. Jennifer Brower, a Unitarian minister. Her premise is that the aging process affects spiritual life as a result of the developmental process of aging.  I discovered there is even a Journal of Religion, Spirituality and Aging! Who knew?

So let’s hear it for April Fool’s Day and the glorious and pervasive myth of the fool, Loki, trickster, clown, and all those other wise fool names, mythological and archetypal.  Here’s to Coyote’s medicine, may it lighten our hearts, increase our wisdom and bring us clarity of sight.

©Barbara Cashman  2014   www.DenverElderLaw.org

 

The Durable POA: Detecting and Remedying Financial Abuse by an Agent

October 1908

October 1908

Detecting financial abuse or exploitation of an elder by their agent is not always an easy matter.  Recent studies show, however, that the vast majority of principals whose agents are misbehaving are persons who are not incapacitated.  This is good news because it means that the principal generally retains the right to “fire the agent” by revoking the agent’s authority to act.  So what are some things to look for?

Here’s a link to an interesting 2012 report from NAELA (of which I am a member) that responds to an inquiry by the Consumer Financial Protection Bureau’s request for information discusses a number of topics relating to elder financial exploitation and abuse.  The NAELA members’ responses cover several topics, including:  inadequacy of existing accountability controls to deter the misuse of senior advisor credentials; elders’ effective use of financial resources in their ability to select a financial advisor with the appropriate knowledge to address their specific financial needs (and an advisor who won’t sell them inappropriate instruments like high commission annuities) ; misuse of financial POA by family or friend was cited as the most common scenario for exploitation; maintaining eligibility for all government benefits – e.g., knowing the landscape where Veteran’s and Medicaid benefits overlap; and, fortunately one of the recommendations in the report was to establish mandatory reporting laws, which Colorado now has on the books.

Here’s a link to a recent article that cites to a major study of financial abuse. A few items worth noting from this include–

  • Bills are left unpaid and notices of eviction or discontinued utilities arrive.
  • Unexplained withdrawals from bank accounts or transfers between accounts.
  • Bank statements stop coming.
  • Care is not commensurate with the size of the estate.
  • Belongings or property goes missing.
  • Suspicious signatures appear on checks or other documents.
  • The elder or the caregiver gives implausible explanations about financial matters.

Other behaviors that are sometimes apparent in an exploiter’s behavior relative to an elder include when a new caregiver, friend, or relative distances the elder from their support system, to isolate the elder. Another scenario is where the agent convinces the principal, sometimes the agent him- or herself, and anyone else who will listen, that agent is the only one who is “looking out for” or “taking care of” the principal.  This can involve alienation of the elder principal from friends and other resources who could come to principal’s aid.  I think some of these behaviors are akin to those in the domestic violence context. Scary!

What are the options for action after sufficient evidence of abuse of the agent’s authority is uncovered?

  • Report suspected criminal activity or abuse to law enforcement authorities (keep in mind that these instances of abuse are underreported, according to law enforcement authorities)
  • Contact county adult protective services or care facility ombudsman
  • Take steps to protect and minimize continuation of damage
  • Take steps to repair exploited elder’s damaged sense of self

One of the major factors in underreporting is the shame associated with being taken advantage of by a close family member.  For further reading, here’s an interesting post from the American Banking Journal entitled “Elder Financial Exploitation Compliance Issue Matures.

Finally, there are important ways that an elder law attorney can help with assessing a situation, referring to authorities where appropriate, and taking steps to stop the continuation of the financial abuse and toward remedying the situation.  The principal-agent relationship is defined by the Colorado Probate Code in the Uniform Power of Attorney Act.  The agent is a fiduciary on behalf of the principal, which means that the agent’s ability to act on the principal’s behalf means the agent is held to a higher standard of care, to act for the principal’s benefit, and with reasonable care, among other duties.  The fiduciary duty of an agent owed to a principal is just one kind of a number of fiduciary relationships.

Agents are generally prohibit from “self-dealing” or giving the principal’s assets to themselves.  Sometimes this self-dealing is due to the agent’s ignorance of their legal duties as agent or otherwise the mistakes are inadvertent or due to sloppy bookkeeping.  In other contexts, the agent can get a bit too comfortable with using the principal’s money as their own and the actions are intentional, to steal from the principal or otherwise improperly benefit the agent.  In both of these scenarios, proceedings can be brought in probate court to review an agent’s actions.

The probate court is a court of equity, which means they will generally look at surrounding circumstances – not just the technical compliance issues.  Judicial review and relief are available in the probate court, and because the Colorado Probate Code allows for a single proceeding for related matters involving a principal and an agent, this can considerably streamline a strategy to recover money misused or misappropriated by an agent, including the return of personal property.  Actions for accounting, fraudulent misrepresentation, undue influence and theft (I’ll be writing more about a 2014 Colorado senate bill that distinguishes further the crime of “use of influence to take advantage” of individuals aged seventy and older) can also be brought against the agent.  It’s important to distinguish here that an older person can still have capacity to manage their own affairs, but that surrounding circumstances can make the person vulnerable.  Besides monetary relief and return of property, a court can impose a constructive trust to benefit the exploited elder principal and other measures. In short, there are many useful tools that a privately retained elder law attorney can use to remedy a bad situation with a misbehaving agent under a POA.

Hurray – this is my 101st post on my DenverElderLaw blog!

©Barbara Cashman  2014   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

 

The Future of Dementia Care – Renegotiating the Terms

 

I’m a baby boomer, but since both of my parents are now deceased, I’m no longer a “boomer sandwich.”  What does the future hold for boomers, many of whom still have parents?  Many of our parents are experiencing the frailties of old age and many suffer some form of dementia.  The legal issues surrounding dementia are numerous and are typically intertwined with the related medical, financial, emotional and psychosocial  issues.

I read a lovely article in the May 20, 2013 issue of The New Yorker  about the fresh approach of one nursing home (I usually refer to these as SNF – short for skilled nursing facility)  to caring for people with dementia.  In “The Sense of an Ending,” Rebecca Mead looks at the plight of many of our elders who suffer from dementia. A large number of us would rather not be reminded that this is a side effect of aging for a certain number of people in our population.  Denial or “if I can’t see it, it won’t happen to me” has not proved to be an effective strategy of coming to grips with any disease or health challenge that faces us.  This story is among other things, about one institution that offers a decidedly non-institutionalized approach to dementia care, or a person-center alternative approach.

One of the people interviewed for the article, the director of education at the Beatitudes Campus in Phoenix, refers to people with dementia as “people who have trouble thinking.”  What a contrast from the dominant theme of the medical model of our “secure units” at most SNF.

I liked the article’s focus on recognizing and honoring people’s tastes, preferences and their personal histories.  This is about the “who” of the person as opposed to the “what”  – the latter of which is focused almost exclusively on the medical problem and the loss of cognitive and other abilities.  Mead’s article also describes some of the training the staff at the Beatitudes’’  dementia facility does to better empathize and understand people with dementia, and this honors the idea that we have something to learn from people with dementia.  Seven insights we can gain are described here.

The person-centered approach was formulated by the late Tom Kitwood, a British psychologist and pioneer in the field of dementia care.  His approach focuses on the maintenance of well-being in persons affected by dementia and is concerned with psychological needs including:

  • maintaining a person’s identity
  • engaging the persons or supporting them in come meaningful tasks
  • providing comfort (seeing the human dignity in each person, expressing warmth and acceptance)
  • recognition of feelings and for relationships – past and present

Recognizing these in a person with dementia does good not only for the person with the disease but also the loved ones and family members.  I often think of dementia as “contagious” because it does not affect a single person experiencing the effects of the disease or condition, rather it has a ripple effect on others.  Dementia is often the “beginning of the end” is it is often accompanied by a host of other ailments and is often a terminal illness

In the meantime, we have a war on Alzheimer’s in this country, no doubt due in no small part to the “silver tsunami” of baby boomers who will be at risk for the disease or some form of dementia.  Our obsession with science and medical advances  to come to our rescue is readily apparent here.  I liked Professor Partha Mitra’s critique of the multibillion dollar neuroscience effort to draw up a “brain activity map.”  Read it on Scientific American online here.

Kitwood’s work has been around for many years, long enough for the ideas to be kicked around, rejected and adopted in parts in many parts of the world.  The notion of personhood is a powerful one and can help to reassess the appropriate limits of our medical model of dementia care in this country.

People with dementia challenge us to engage with them on their terms, how we can do that is up to us, what we have to learn from them.  I have once or twice joked (yes, part of my penchant for jokes about death and dying and all manner of serious topics) that many people with dementia are people who are typically better than most of us at living in the present moment.

This is not to say that we ought to give up looking for some preventive measures or a “cure” for some types of dementia, this is a reorientation of the focus of care.  Our system of protective proceedings, in Colorado known as guardianship (for an incapacitated person), focuses exclusively on what the person has lost and is no longer able to do for themselves.  The substituted judgment which is the model for decision-making is based on a vague notion of “best interests” which purports to be some standard “out there” that is general and vague enough so that it could apply to most anyone.

Some things are refreshing when examined in a different perspective.  What about applying the “golden rule” (I prefer Rabbi Hillel’s version  “what is hateful to thee, do not unto thy fellowman”) in guardianship proceedings to determine who makes decisions and what type of living arrangements are appropriate?  The person-centered approach recognizes there is still a person there, albeit one affected by the ravages of dementia, but who is often able  to be “held in their identity.”  I think this approach and others like it have much to teach us – whether we work in the legal, medical, mental health or financial worlds – about how to live and what and whom to value.

©Barbara Cashman     www.DenverElderLaw.org

Dementia, Capacity and Old Age: part II

Part I of this post began: In our death-denying and youth-glorifying culture, how does dementia figure as a disease? Is there a cause? Is there a cure?  What pills can be prescribed?  We might choose to view dementia is a dark side of longevity.  Where we have unprecedented longevity due to medical advances, isn’t it right to wonder about what our lives are for – especially if we have more length of days to ponder the meaning.   As I frequently comment to clients, we have never had so many old people on the face of the earth before.  Many of the challenges we face in supporting  elders and caring for them – the legal, financial, medical, social and emotional challenges – are new problems and require new thinking. 

How is it decided who gets to go back home, back to their independent living arrangements, after a discharge from a hospital or rehab facility?  Long term living arrangements for elders in institutions have been becoming more rare – but is this trend likely to continue as more of the baby boomers reach retirement age?  In the institutional setting, a major issue presented in this context of dementia and capacity is the “choice between” autonomy and restraint.  This is a recurrent dilemma for many elders living in facilities and the staff members charged with managing their care in these institutionalized settings.  This is “big brother” in the context of the growing number of elders.

What is it that matters about old age – why do so many people want to live longer?  When we focus on the do-ing part of our lives, extending that “active adulthood” indefinitely, or at least valuing that part of our lives as the only part worth maintaining and carrying on, we do disservice to the be-ing part of our lives.  I recognize that the vast majority of our culture is focused on the doing, the active (not contemplative), the choosing (not reflective) and the control, and that these are the hallmarks of a culture that holds choice and self-determination in high regard.  However, there is also the more fundamental backdrop of human dignity that often gets overlooked when we get caught up in our rights-bearing choice-making mindset.  This is the challenge of dementia and and other end-of-life scenarios and why we need to rethink our thinking in some fundamental ways.  For an institutionalized person with advanced dementia, that person is entitled to dignity and respect as a person, simply by reference to their being alive, and without reference to a focus on all the capacity that a person has lost.  How many times have we heard comments like “look at him now, he used to be a university professor.”  I think these comments are symptomatic of our unbalanced focus on the do-ing part of our adult lives, (which undoubtedly helps many of us maintain our sense of control over our lives) at the expense of the be-ing aspect of our lives.    We exist as people  as long as we are alive, as human beings.

Below I quote the entire poem “Tithonus,” by Alfred Lord Tennyson, a  poem about aging as told by the lover of the goddess Eos, whose immortality was granted by Zeus – but Eos forgot to ask Zeus for his eternal youth and he was thereby left in an eternal prison of old age.

The woods decay, the woods decay and fall,

The vapours weep their burthen to the ground,

Man comes and tills the field and lies beneath,

And after many a summer dies the swan.

Me only cruel immortality

Consumes; I wither slowly in thine arms,

Here at the quiet limit of the world,

A white-hair’d shadow roaming like a dream

The ever-silent spaces of the East,

Far-folded mists, and gleaming halls of morn.

Alas! for this gray shadow, once a man–

So glorious in his beauty and thy choice,

Who madest him thy chosen, that he seem’d

To his great heart none other than a God!

I ask’d thee, “Give me immortality.”

Then didst thou grant mine asking with a smile,

Like wealthy men who care not how they give.

But thy strong Hours indignant work’d their wills,

And beat me down and marr’d and wasted me,

And tho’ they could not end me, left me maim’d

To dwell in presence of immortal youth,

Immortal age beside immortal youth,

And all I was in ashes. Can thy love

Thy beauty, make amends, tho’ even now,

Close over us, the silver star, thy guide,

Shines in those tremulous eyes that fill with tears

To hear me? Let me go: take back thy gift:

Why should a man desire in any way

To vary from the kindly race of men,

Or pass beyond the goal of ordinance

Where all should pause, as is most meet for all?

A soft air fans the cloud apart; there comes

A glimpse of that dark world where I was born.

Once more the old mysterious glimmer steals

From any pure brows, and from thy shoulders pure,

And bosom beating with a heart renew’d.

Thy cheek begins to redden thro’ the gloom,

Thy sweet eyes brighten slowly close to mine,

Ere yet they blind the stars, and the wild team

Which love thee, yearning for thy yoke, arise,

And shake the darkness from their loosen’d manes,

And beat the twilight into flakes of fire.

Lo! ever thus thou growest beautiful

In silence, then before thine answer given

Departest, and thy tears are on my cheek.

Why wilt thou ever scare me with thy tears,

And make me tremble lest a saying learnt,

In days far-off, on that dark earth, be true?

“The Gods themselves cannot recall their gifts.”

Ay me! ay me! with what another heart

In days far-off, and with what other eyes

I used to watch if I be he that watch’d

The lucid outline forming round thee; saw

The dim curls kindle into sunny rings;

Changed with thy mystic change, and felt my blood

Glow with the glow that slowly crimson’d all

Thy presence and thy portals, while I lay,

Mouth, forehead, eyelids, growing dewy-warm

With kisses balmier than half-opening buds

Of April, and could hear the lips that kiss’d

Whispering I knew not what of wild and sweet,

Like that strange song I heard Apollo sing,

While Ilion like a mist rose into towers.

Yet hold me not for ever in thine East;

How can my nature longer mix with thine?

Coldly thy rosy shadows bathe me, cold

Are all thy lights, and cold my wrinkled feet

Upon thy glimmering thresholds, when the steam

Floats up from those dim fields about the homes

Of happy men that have the power to die,

And grassy barrows of the happier dead.

Release me, and restore me to the ground;

Thou seest all things, thou wilt see my grave:

Thou wilt renew thy beauty morn by morn;

I earth in earth forget these empty courts,

And thee returning on thy silver wheels.

Alfred Lord Tennyson

Does our culture’s denial of death as part of life, our glorification of youth at all costs condemn us to Tithonus’ fate?

If we cannot stop to think about the purpose of our lives during our adult years, can we abandon to hope that such meaning will somehow arrive at our doorstep, unbeckoned?  If this were to happen to us, would we even recognize its meaning?   I think not.  Elderhood is an extension of adulthood, and growing up is – quite simply – optional in our culture.

©Barbara Cashman     www.DenverElderLaw.org

Dementia, Capacity and Old Age: part I

In our death-denying and youth-glorifying culture, how does dementia figure as a disease? Is there a cause? Is there a cure?  What pills can be prescribed?  We might choose to view dementia is a dark side of longevity.  Where we have unprecedented longevity due to medical advances, isn’t it right to wonder about what our lives are for – especially if we have more length of days to ponder the meaning.   As I frequently comment to clients, we have never had so many old people on the face of the earth before.  Many of the challenges we face in supporting  elders and caring for them – the legal, financial, medical, social and emotional challenges – are new problems and require new thinking.

Self-determination is important in medical care, this is why informed consent is required.  Perhaps because medical care is more of an ongoing need in most people’s lives, health care providers seem to be much more capable of embracing the gray area (no pun intended) of self-determination regarding patients with severe mental impairment, many of whom are elders with dementia.

In the legal context, an adult person retains the ability to make decisions for himself or herself, and this capacity is presumed by our legal system and continues generally until a person is determined to be “under a disability” meaning that a probate court has adjudicated the person incapable of managing very basic requirements for themselves.   Colorado law defines an incapacitated adult as one who is “unable to effectively receive or evaluate information or both or make or communicate decisions to such an extent that the individual lack the ability to satisfy essential requirements for physical health safety, or self-care, even with appropriate and reasonably available technological assistance.  Colo. Rev. Stat. §15-14-102(5).

But there are many practical shortcomings to the legal description of “incapacitated” and the requirement that a probate court is the only court capable of determining such, thereby stripping a person’s civil rights after a legal proceeding.  In this regard, the legal system, for better or for worse recognizes individuals’ rights to self-determination, even when that right to autonomy cannot effectively be expressed or communicated.  By contrast, the medical setting allows much more flexibility and recognition of people’s fluctuating levels of capacity and variable mental states.  If you have ever known a committed coffee drinker state “don’t ask me to decide anything that matters until I’ve had my cup of coffee” then you realize that the context for these fluctuations in mental states has always been with us.  These fluctuations tend to become more pronounced for many of us as we age, and for some people who experience cognitive decline that is disease related and not “merely” a function of aging.  So what does dementia look like?  The Alzheimer’s Association has described ten warning signs:

    1. loss of memory that is life-disrupting
    2. difficulty performing familiar tasks
    3. problems with language, word finding – written or spoken
    4. confusion or disorientation as to time and place
    5. poor or declining judgment
    6. difficulty with abstract thinking, visual and spatial orientation
    7. losing or misplacing things and inability to retrace steps
    8. changes in mood or behavior
    9. loss of initiative, withdrawal from work and social activities
    10. personality changes

 

What we often overlook is that these determinations are made relative to what our life was like before some fixed period of time, some diagnosis or a tragedy.  Often there is a traumatic event that wakes family members from their slumbering denial of an elder’s difficult situation.  Notwithstanding the lifelong fluctuation of our capacities, this line of capacity/incapacity gets narrower  and more pronounced as elders in frail health or with dementia move closer to the place of incapacity.

 

When we look at institutionalization, a focus on people’s autonomy and rights may sound an alarm bell when we think about the compromises and those made into real or perceived injustices leveled at frail or demented elders.  Some of these people may be subjected to physical or chemical (pharmaceutical) restraints, so as to make them more safe and more manageable in a community.  As long as we focus on the doing part of our autonomy at the expense of the being, we necessarily focus on the past and all the losses sustained.  We are unable to really see person as they are, in the present moment.  This at the expense of meaning.  I will close this post with a portion of a poem by Walt Whitman:

Old age, calm, expanded, broad with the haughty breadth of the universe,

Old age flowing free with the delicious near-by freedom of death.

Song of the Open Road, verse 12,  Walt Whitman

to be continued…

©Barbara Cashman     www.DenverElderLaw.org

 

May 1st is Law Day – Happy Law Day!

Law Day – what is that about. . . .? I haven’t seen the greeting cards to mark the occasion! The theme for Law Day 2013 is Realizing the Dream: Equality for All. This year’s commemoration is all about civil and human rights, the American Bar Association has some great resources available here.


This year’s Law Day is a fairly patriotic event in that it marks our nation’s long history in the struggle to honor and promote people’s civil and human rights. This year is the 150th anniversary (or sesquicentennial if you prefer that) of the Emancipation Proclamation. In Denver, our local and state bar associations are co-sponsoring a screening of the 2012 film Lincoln.  The event even has a CLE (continuing legal education for lawyers) component.
On the civil rights theme, I would like to have linked to a youtube showing the historic “I Have a Dream” speech by the Rev. Dr. Martin Luther King, but there is a bit of an intellectual property right issue there.
Sometimes lawyers forget why they went to law school and what the struggle for justice, still ongoing, is about. Law day seems to be an observance primarily for lawyers and bar associations, but it also has an important component of education about our legal system as well. Our system of justice cannot effectively function when people are not educated about their rights. In most of Europe and many parts of the world, May Day is not law day but is a commemoration of workers’ rights.
I looked up the history of Law Day in the US and discovered it was the idea of Charles S. Rhyne, President Eisenhower’s legal counsel and also president (the youngest person to serve in that capacity) of the American Bar Association. My connection with Charlie Rhyne? He started the World Peace Through Law effort. I attended the 1987 Seoul Conference on the Law of the World and served as rapporteur for one if its committee meetings. The organization is now known as the World Jurist Association.  International law is grounded upon the recognition of the rule of law among nations.
So, Law day and civil rights – where’s the elder law connection? I have previously blogged about the Universal Declaration of Human Rights in the context of elders’ rights.  For their part NAELA, the National Academy of Elder Law Attorneys (of which I am a proud member) has a press release here about their efforts and elder and special needs law attorneys’ efforts to educate their community about legal options. They observe the entire month of May as Elder Law Month.
So, you may not be thinking about the civil rights and the elderly and incapacitated when you consider civil right. But make no mistake – elder law is a hotbed for civil rights – why? Guardianship proceedings (as they are known in Colorado, in most state jurisdictions protective proceedings are known as guardianship of the person and guardianship of the property – for what is known as conservatorship in Colorado). As the number of elders continues to increase, we will need to develop more appropriate legal mechanisms to manage the gray area of defining incapacity. This is where the law evolves to meet the needs (that’s the goal at any rate) of a changing demographic and society.
How will I spend law day? I will be grateful for being a citizen of this great country where the rule of law is well respected. What is “the rule of law?” Okay, I skipped the definition in my trusty Black’s law dictionary – too stuffy sounding and like the Wikipedia one better: it refers to the authority and influence of law in a society, especially as a constraint upon behavior, including behavior of government officials.  When I was studying international law back in my law school days, this was a revolutionary concept in many legal institutions. In fact, it still is in many parts of the world. One of the best parts about being a lawyer is staying on top of developments and figuring out how to tailor these to meet a particular client’s needs. Estate and elder law provide me a wonderful opportunity to advise people about their legal options and counsel them in the context of what works best from their own legal, financial, medical and emotional point of view. I am grateful for my clients and I love being a lawyer. . I wouldn’t have it any other way.
I think it’s a fitting way to observe Law Day – even if it is spent with lots of boxes and the movers who will be moving my office from southeast Denver to Centennial, two miles south of my current office.
              My new address is 7955 East Arapahoe Court, Suite 3000, Centennial, CO 80112. My new direct line is (720) 242-8133.

©Barbara Cashman www.DenverElderLaw.org

Fraying Fabric: Dementia, Depression and Loneliness

There have been some recent articles about studies relating to loneliness and dementia.  Here is a link to “Loneliness Increases Dementia Risk Among the Elderly,”  which discusses the link between loneliness (NOT living alone or other social isolation) based on a three-year long Dutch study of elders. The jury is still out about the causality of the relationship (does loneliness lead to dementia – or the other way round?), but there is a strong correlation. The authors of the study are quoted as concluding “further research is needed to investigate whether cognitive deterioration and dementia are a consequence of feelings of loneliness or whether feelings of loneliness are a behaviourial reaction to diminished cognition.”

This report doesn’t necessarily tell us anything particularly new, but several studies have used different techniques over the years to demonstrate the correlation.  Here’s a link to an article published in 2007 entitled “Link Explored Between Loneliness and Dementia.”  Is loneliness one of the risks associated with aging, or is it something that some people have all their lives (coping behaviors, approaches to life and relationships) that is exacerbated by the many trials of old age?  If you are lonely at this time in your life, could “forgetting” be a coping behavior or affect along the lines of being more trusting and more optimistic?  These latter two phenomenon have been noted by psychologists and neuroscientists.  To reiterate, we have never had this many old people on the face of the earth before, so there are more “test subjects” in this regard. . . .

This brings me back to “elderhood” and the need to forge new connections and maintain old ones in later years. In the UK there is even a campaign to end loneliness and this past year the organization aiming to reduce chronic loneliness for people over 65 launched a “Dementia Awareness Week.”

Dementia and loneliness seem to be one of the combinations that may be difficult for clinicians to study because it involves a wide range of factors, not the least of which is self-reporting by people of loneliness.  Are social activity and engagement enough for persons to stave off dementia?  Will there be an effective “prescription” in the near future for preventing the development of or  slowing the advance of dementia that involves more social engagement?  what will this look like?

The roots of elderhood begin in a person’s forties and fifties – at that sometimes imperceptible and for some of us dramatic divide between the first half of life and the second.  I just bought a new Kindle and look forward to reading Richard Rohr’s book “Falling Upward: A Spirituality for the Two Halves of Life” (Jossey-Bass 2011)  on my new toy.  In the meantime, there are the library books – my most recent find relating to this topic is “Born for Love: Why Empathy is Essential and Endangered,” by Maia Szalavitz and Bruce Perry (2010: Morrow).  The link between empathy and loneliness is profound: can we as individuals allow ourselves to see and feel another person’s loneliness and isolation?  How might that change our own lives and those of others if we were freer and more capable of reaching out to and being with another?  It might change our world.

This reminds me of a favorite Anais Nin quote:   We see the world not as it is but as we are.

If we have lived with much pain and fear in our lives and our reaction is the slow tightening of our heart, it can become difficult to open to people who come into our lives to share the world with us, in whatever way they do.   Fear of change is essentially fear of life – this makes me think of the ancient Greek Heraclitus and his observation that we can never step into the same river twice.  How do we look at our own life – do you tend to view life as a process of becoming – or perhaps more as a series of “doings” or a “bucket list” or some other forms of accomplishments?  I would submit that our youth-glorifying culture tends to focus exclusively on the doing, and when there is no more “doing” left for us, life becomes pointless.   This is not to minimize the importance of doing, rather it is to put doing in its proper context . . . .  Loneliness may simply be that fear of rejection, that sentiment of “why bother – they won’t like me anyway.”  Perhaps the forgetting, which is the dementia – is a coping mechanism for this in an aged brain.  Contrast this reaction with letting go of the fear and anxiety of pain and pain avoidance and embracing the change.

Here is another Anais Nin quote:

Each friend represents a world in us, a world not born until they arrive, and it is only by this meeting that a new world is born.

Empathy can allow our hearts to open to new people and experiences and new worlds for us if we become friends with another.  In short, it can keep us alive.

This reminds me of a favorite and very simple prayer: that I may live until I die.

Perhaps too many of us are dying prematurely, by our own hands, hearts or minds  – slowly and almost imperceptibly.

©Barbara Cashman     www.DenverElderLaw.org