Posted tagged ‘Aging’

Dementia from the Inside Out

March 21, 2011

Most depictions of dementia describe the impact of behavior and cognitive deficits from the outside – the observations of clinicians, family members, co-workers, and neighbors. It is rare to find a perspective from the inside out – the experience of the person with advanced dementia. A mystery novel is an unlikely place to look for such a portrayal, yet Walter Mosley’s recent novel, The Last Days of Ptolemy Grey creates that perspective convincingly.

A prolific writer, Mosley is best known for his Easy Rawlins mysteries, set in Los Angeles in the 1940s, and for his lively and authentic portrayal of African-American urban life. This book has Mosley’s characteristic earthy dialogue, colorful people, and plot twists. But the main character-cum-detective, Ptolemy Usher Grey, is no Easy Rawlins. He is 91 years old, suffering from dementia, and living in squalor. That is, until an unlikely caregiver, 17-year-old Robyn Small, literally gets him to clean up his act.

Mosley wrote this book after his 88-year-old mother Ella died of dementia. He was a long-distance caregiver for seven years. In an interview in the Wall Street Journal he said that one of the things he attempted to do in his book “is to show the narrative that exists inside [Ptolemy Grey’s] mind, to see those moments when someone is trying to tell you something and they still can’t do it . . .that struggle for articulation. That’s a very human struggle.”

As Mosley sees it, Ptolemy has a “place behind the door that kept many of his memories alive but mostly unavailable.” Shadows of the past keep intruding on the present, where he lives amid nonstop classical music and news on the radio, a dwindling supply of canned sardines, and fear of intruders.

The complicated plot, which involves past injustices, buried treasure, failed relationships, and violence, turns on the drive-by shooting of Ptolemy’s grandnephew Reggie, the only one of his large but uninvolved family who had helped him do some shopping and banking. At Reggie’s funeral Robyn, who has no family but has been taken in by Ptolemy’s grandniece, takes special care of Ptolemy. The family then sends her to assume Reggie’s role.

Robyn does much more than Reggie ever did, and her kind but firm presence gives Ptolemy the human connection and stability – the love – that is missing in his life. It also gives him a mission: find out who killed Reggie and take care of unfinished business before he dies.

In a Faustian twist, a physician offers Ptolemy a chance to recover his lost memory and lucidity. Dr. Ruben (henceforth called the Devil) is testing a new drug that he thinks will give Ptolemy a few months of clear-headedness but will kill him before he reaches 92. In a macabre version of informed consent, Dr. Ruben openly says the drug is dangerous and illegal in the United States but is being made in “a town in Southeast Asia where there are fewer laws governing research.” Over Robyn’s protests, Ptolemy chooses a few months of “getting his mind back” and signs a form giving his body to the doctor after he dies. No spoilers here: read the book to find out what happens.

The Last Days of Ptolemy Grey is a work that blends realism and fantasy. It is also a tribute to the powerful impact of a caregiver on the final chapter of a person’s life.


New Notions of Empathy?

March 13, 2011

Have you ever been commanded to “Put yourself in her shoes!”  Now you literally can.  Meet Agnes, which stands for The Age Gain Now Empathy System. A gadget of the Massachusetts Institute of Technology’s Agelab, Agnes is a bodysuit that has been developed by researchers for a wearer to experience the physical limitations of old(er) age.  Cords, bands, Styrofoam and tinted plastic transform what by all accounts looks like a mechanic’s jumpsuit, into the trappings of a “74 year old body” with limited mobility.  Reaching for a box of cereal in a grocery store becomes a feat when stretching an arm is restricted by a retractable cord.

Agnes is one of a number of technologies of MIT and other research centers promoting the study of the needs of aging baby boomers in the United States, 76 million of whom turned 65 in January.  Improving the “quality of life” of this demographic is a project of interest to a number of entities. Industry would like to design appealing products for this burgeoning market, and government would like to contain the soaring costs of healthcare for this typically high-user demographic.  Agelab and its peer centers are therefore hubs of development that profess a commitment to improving this next chapter of life, while also enhancing the market-value of that life.

I initially discovered Agelab in a February article in The New York Times.  It led me to the Agelab website where I perused the various techniques being developed to measure and respond to the capacities of older people.  It further linked me to the increasing coverage of Agelab in popular media, as the dapper, bowtie clad director, Joe Coughlin and his merry band of youthful suit-donners describe their gadgets on tv programs and in feature articles.

The issues are certainly timely, not only because of the pressing weight of an emergent demographic, but also in the gesture to technology’s potential for lifestyle innovation.

Let’s go back to Agnes. Putting aside the “in the year 2000” sense brought to mind by a souped-up dickie coverall and the REALLY interesting questions about enmeshed technological timescapes (such as, why choose iconic aesthetic workforce attire to represent the technological frontier?), what I want to focus on is the “e” in Agnes, the use of the term “empathy” to describe the experience of “gaining age” for a bodysuit wearer.

Empathy is a term to describe the relational capacity of one individual to access the state of being of another.   The transfer generally relies upon something forged between persons, or between person and object that stands in for a person (for example, a relation of empathy can occur when a person reading a newspaper of Japan’s earthquake feels pain for those pictured in the wreckage). It draws up, and upon emotions of the “empathized” and the “empathizer,” as well as in the matter between them.

In this light, Agnes is a departure of typical empathic rendering.  The suit serves as a substitute for a person afflicted with the syndromes of old age. Technology, in fact, fills in and reconstructs the figure who is rendered absent in these exercises.  Leaving her aside and choosing instead to simulate her experience of old age is curious because aging bodies are described as very much not absent in daily life, but in fact present in increasing numbers. What is absent, then, are older people in the research design, and in doing so, so too are their varied perspectives that accompany living when Agnes cannot be removed.   The researcher in the suit may walk slowly, but the real older person may labor to walk while also complaining of relentless aching joints, lost youth, or absent-minded folly.  How such responses bear upon movements are not necessarily obvious, and it seems to me that they would be critical to consider. Tapping into experiences of this kind would also evoke principles of empathy that are, ironically, unavailable in the Agnes model.

Now let’s explore how the Agnes technique takes empathy cultivation not as the relationship of oneself to another, but as parts of oneself in relation to other parts of oneself.  Like the suit itself, a researcher is guided to turn a part of herself “off,” and another now-enhanced part “on.”  This strategy is uniquely hitched to an idea of individuals as needing to create new experiences to access worlds that are assumed to be unfamiliar.  Is this the case?  Drawing from my own life, at the age of 27, I developed a disk bulge because I did not exercise, and sat, hunched, for hours at my computer writing graduate school essays.  When I was diagnosed, I thought, “God, I feel old.”  I had a picture of old age, and with it a foreboding anxiety that it was coming too soon.  Now, if I were to wear Agnes, I bet that I would play the role of the older person disconnected from my own archive of experiences that might be as or more powerful than the technological simulation.  In various articles, Dr. Coughlin says that baby boomers shy away from products that obviously marketed to them as “old.”   An accompanying statement might be, “I’m just like everyone else.”  Yet, Agnes may defy this statement by perpetuating difference, rather than building off of more important mercurial possibilities between people, and between points in a person’s own life that allow for the forging of connections.  These transfers are the potent stuff  embedded in dare I say more conventional technologies of empathy.

The final strangeness of this suit is that it dotes on the physical.  I  wonder, then, if the cultural constructs that have produced it back a new vision of the constitution of self.   Is a quality life achieved if the body’s needs are met on an individual basis? If we answer yes, this sums up popular thinking, it seems that we have found ourselves in a world in which ideal states of being boltser singular over social existences.  And yet: as our bodies in this world become depleted (and this is inevitable until that technology comes along), will we really be saddened if a shelf is out of range, or will we think about whether someone is with us to reach for our favorite cookies in our stead?