Archive for the ‘About Intimacy’ category

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.

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on loneliness

May 19, 2009

Dustin

I saw Last Chance Harvey on the plane to California last week.  Two icons of contemporary loneliness — the man unmoored by divorce, now just an ex bearing sorrowful witness to his former family, the woman still single after years of  skating on the very thin ice of dating noncommittal men.   Is loneliness the cost of our present-day zeitgeist?

One of my graduate students took issue with the sociology of family this past semester, arguing that the books we read seemed to assume that people need to be connected, need intimacy, need partnering.  And a battery of recent research argues that singles are just as happy, more likely to help take care of their parents, and create fulfilling lives by knitting together communities of friends.  Do we even need romantic relationships?  Do we need intimacy?  Or is that just an ideology, one that makes Cherlin’s marriage-go-round turn?

Perhaps because of my focus on dependency and need, I tend to think we need relationships that last even when they are not immediately gratifying.  As our cultural idea of intimate partnerships moves away from that model, perhaps they are better thought of as an intermittent luxury.   Meanwhile, other relationships — parent-child, sibling-sibling, even sometimes neighbor-to-neighbor, as I discovered on my trip back to my old street in Oakland — can accrue enough ballast to last the tougher moments.  What do all these have in common?  You don’t choose them, they are just what you get.  As my kids like to chant when someone is clamoring for a particular piece of birthday cake:  “you get what you get and you don’t get upset.”

So is Last Chance Harvey yet another propaganda film — albeit one with a sort of gentle elegance — about our need to couple up?  Maybe.  But still the palpable loneliness of the film rings true.  Maybe we just need to get Dustin and Emma some neighbors.

The Intersection of Care and Need

May 3, 2009

I remember a disagreement between two of my graduate faculty advisors. Should people who provide care be called caregivers or care workers? This argument reflects a longstanding debate regarding care. There are those who emphasize the work in the caring and those who emphasize the caring in the work. I’ve always interpreted this, to some extent, as debates over whose needs should be emphasized, the care providers or the care recipients?

But it hasn’t been until recently that I’ve begun to understand how closely these needs can intersect. I have yet to bear significant financial and health costs associated with raising my daughter, but the emotional price is becoming clear. Generally, I’ve defined the emotional costs of care work as higher rates of depression among long term care providers, which are triggered by the heavy demands of care. But as a parent of a child with a cognitive disability, the emotional costs are related to things I never really imagined. I’m not depressed. And while I spend an inordinate amount of time trying to hurl myself through varying bureaucracies, from hospitals to the welfare system, what causes the most pain and stress, the thing that keeps me awake most at night, is triggered by the realization that people will be cruel to my daughter as she grows up. Yes, most children have to deal with cruelty, but my daughter will have to deal with more of it.

Negative reactions to those with cognitive disabilities are often strong and seemingly unconscious. President Obama’s slip regarding the Special Olympics is a striking example. He clearly felt badly and I would guess that if he had thought about it–for even a minute–the comment never would have slipped through his lips. Indeed, he apologized profusely, without caveats. But the sentiment is lurking beneath the surface—even among the best of us. And even more concerning was the number of times I heard others excuse the comment by arguing that he was being self-deprecating. The fact that it was self deprecating is not going to make that kind of comments any less painful for my daughter.

So it is here where I’m finding that my needs and my daughter’s needs are one in the same. When she feels pain, I feel that pain. I think this blurring is part of what underlies the stress that many care providers face.

Gender trust and mistrust

April 8, 2009

We saw Duplicity last week. I was struck by the fact that, although it was ostensibly about two ex-spies who have trouble trusting each other in their love affair, it was really about partnering in a divorce culture. At each plot twist, Clive Owen and Julia Roberts circle around each other, unsure if they are actually on the same side as they keep telling each other, or if one of them is gaming the other. Who will be caught playing the fool, left behind because they actually made the mistake of keeping the faith? Clearly, under these pitched-battle circumstances, it is better, wiser, more rational, to focus on protecting yourself, and to avoid vulnerability.

Even at the climax, the effort to reach across this divide seems too great to sustain. Sample dialogue: Julia: If I told you I loved you, would it make any difference? Clive: “If you told me? Or if I believed you?

I think this sort of deep gender mistrust comes about because traditional implicit bargains between men and women about what they are supposed to do for each other have been upended, and this is a revolution that has yet to fully crest.   It is hard to figure out what we owe each other, hard to meet expectations that linger, unspoken, beneath the surface, and harder still to commit when we’re not quite sure what the other person is bringing to the table.  It can feel like leaping into a pool of uncertain depth.

Is it even possible to make long term promises without risking our own vulnerability? How can we make mutual dependence safer?  Without reaching back for patriarchy, I hope for the day when we can embrace our interdependence, when most of us find we can depend upon each other more wholly than so many seem to be able to do now.

I gain some hope from research such as that from the Cowans showing that if couples work to avoid slipping into traditional gender roles they can fend off some of the problems – the dissatisfaction, the conflict – that a new baby brings to their relationship.  This work seems to suggest there are ways to meet in the middle, even under the stress and challenge of new parenthood — a moment of extreme dependence — and even if you are forging new kinds of partnering for which the rules are not yet written.

marriage: the sound and fury

March 9, 2009

In reviewing the marriage-go-round, by Andrew Cherlin, I came away with a keen sense of the historical roots of the intensity with which Americans cherish marriage.  Cherlin’s main point is that the United States is unique in that it has a pro-marriage culture and a culture that values personal expression and self-development, and these two profound values create the unusual pattern of high marriage and high divorce rates.  Cherlin’s excellent book  compares the U.S. to countries in Europe and the UK.  He notes that marriage rights and marriage rates are hotly debated here, but not in other countries, where children — who gets to have them, through assisted reproduction or adoption, and who has kinship rights to them — are a more central concern.

Protests raged in San Francisco this past week, when the courts heard arguments about Proposition 8, which invalidated same-sex marriages when it passed on the November ballot.   Hearing about them brought to mind some pictures a friend sent last June, when the Gay Men’s Chorus set up outside City Hall, serenading the couples as they went in.

chorus

And my friend captured the delight on this bride’s face, as she watched them on her way in.

bride1

Does marriage mean something different here?  Is that why we fight over who gets to have it?

Some argue that the “soulmate” version of marriage, now ascendant, has shredded many marriages who cannot sustain that level of emotional union without other things to prop them up, institutions like churches, functions like childrearing.

But what about providing care for each other?  Why isn’t that a “function” that works in the same way?  What would it take for that to be the glue of marriage?  For inspiration, I offer this.

Does hook-up culture get in the way of care?

March 4, 2009

For my first time up at bat, I wanted to talk about hook-up culture and “normlessness.”   The very definition of hooking up (the default social scene on college campuses, they say) is a loose one — it can mean anything from kissing to sex, with someone you barely know, a good friend, or with someone you’ve been romantically involved with for a long time.  And as Kathleen Bogle says in her book Hooking Up, the very fuzziness about what everybody else is doing serves to increase the sexual pressure.

I decided to test this assertion in my class on the Sociology of Family last fall.  Using a remote clicker device which records their answers without displaying their names, I asked my students how many times a semester they thought others were “hooking up.”  Then I asked how many times a semester they hooked up.  See the results below:

times-a-semester-others-hook-up

How often do you think other students here are hooking up?

For each graph, the answer choices were 1) not at all, 2) 1-2 times a semester, 3) 3-4 times a semester, 4) once a week, 5) more than once a week.

times-a-semester-you-hook-up1

How often do you hook up per semester?

Clearly, Bogle is on to something here.  My students, most of them young women, thought most people were hooking up 3-4 times a semester, and that practically no one was refraining from hooking up altogether.  Meanwhile the bulk of them had not hooked up at all, or had hooked up 1-2 times.  When these graphs went up on the wall, my students gasped in surprise.

I’m not suggesting a knee-jerk condemnation of how others connect.  But the question I asked my students was:   does hook-up culture get in the way of people caring for each other, expressing vulnerability and need, exploring interdependence?