Posted tagged ‘eldercare’

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.


Seeing Susan Boyle as a Caregiver

April 21, 2009
Susan Boyle, before and after?

Susan Boyle, before and after?

Susan Boyle, the famous “unemployed Scottish Spinster” of “Britain’s Got Talent” fame has another story to tell.   She is also youngest daughter of eight children born to Irish immigrant parents who lived at home to care for her aging mother during the ten years following her father’s death.  Diagnosed with learning deficiencies due to a difficult birth, she may have had a hard time finding employment outside of her parents’ home, but thanks to the UK Carer’s Allowance, she probably had paid employment as her mother’s primary caregiver inside their home.  While I cannot speak to Ms. Boyle’s specific situation, it is the case that in Great Britain, as well as in Australia and several other EU countries, family members who care for a frail elderly or disabled relative on a live-in or live-out basis are eligible for income replacement from the state. 

These programs have been controversial in many ways:  conservatives worry that cash for care will erode the notion of self-sustaining families, that it might taint family relations and blur the line between “care” and “work”.   Some conservatives fear that this kind of caregiving remuneration will lead to an increase in elder abuse.  Liberals, and in particular feminists, worry that payment for family caregiving will create a pink collar ghetto of female caregivers living on subsistence wages while caring for their elderly parents.  Others worry that paying family members for care will deprive care receivers of the autonomy they might have in supervising an employee rather than a family member. 

These questions are worth considering.  However, we know that women provide the vast majority of care for the frail elderly, and in the United States, at least, the vast majority do so without any compensation.  They receive no more than the standard unpaid FMLA leave from employment, and many must choose between employment and caregiving or balancing childcare with eldercare, both of which are unpaid and socially undervalued.

This last point deserves special note: unpaid care work is accorded little or no social value.  In a recent article entitled, “Why Susan Boyle Makes Us Cry,” feminist activist Letty Cottin Pogrebin writes that Boyle’s sudden rise to stardum creates a collective lump in the throat because it makes us think of “the years of wasted talent, the career that wasn’t, the time lost…”  As if Ms. Boyle and others like her were locked in a closet. 

Don’t get me wrong.  I think it’s great that Ms. Boyle’s beautiful voice is being heard all over the world.  I listen to her sing before I start my writing workday.  But I think it’s a shame that so many of us think that the time she spent before she met Simon Cowell was wasted.