For 91-year-old Ptolemy Usher Grey, time moves not forward, but in all directions. A face, a passing siren, a clock are enough to send him backwards over the course of a century, to other chapters of his life, other people and places. The world outside his home is frightening to him, and language is an insufficient vehicle to convey his onrushing thoughts.
The fictional Ptolemy, like one in eight Americans over age 65, suffers from dementia. In his new novel The Last Days of Ptolemy Grey, Walter Mosley captures with astonishing clarity the experience of life and love filtered through the clouded lens of a man whose "mind was scattered over nearly 100 years." Mosley also conveys the profound difference the right caregiver can make in such a life.
Ptolemy lives alone at the end of a long life that took him from a volatile childhood in the deep south, up to urban Los Angeles, through two fraught marriages, deaths and estrangements, family ties forged and broken. Through it all, he remains a steadfast character in search of love and redemption.
'A Universal Human Experience'
Art has the power to generate conversation -- and I thank Walter Mosley for fueling this very important one. By giving us compassionate insight into Ptolemy's mind, body and soul -- not to mention his home in desperate need of cleaning and his days of total isolation before he meets the right caregiver -- Mosley brings us a degree closer to understanding an experience that will touch all our lives one day, in one way or another.
The illness, which currently affects 5.1 million American seniors today -- and is projected to affect 7.7 million in 2030 -- has a profound ripple effect on communities and families, as people with dementia require an ever-expanding web of support, with 10.9 million informal family caregivers looking after loved ones in homes across America today. Home health care agencies such as the Visiting Nurse Service of New York where I work, serve a rapidly increasingly number of patients with dementia who want to age as independently as possible in their own homes.
"Everybody over the age of 45 is aware of this situation," Mosley told VNSNY in a recent interview. "Either it's happening to them, to their parents, to the parents of someone close to them, or it's something they know they might face some day. It's a universal human experience -- in every culture, every moment in history. It's home in the heart of most people."
Mosley's own mother, Ella Mosley, suffered from dementia, which first manifested itself as a degeneration of her language capabilities -- an especially devastating loss for both mother and son. "My mother was the one who gave me language," says Walter Mosley, who is an acclaimed author of more than 30 books of fiction and nonfiction. "When I was a little kid, I would sit there with the dictionary and come up with the craziest word I could find. And she always knew the definition. As she was moving into dementia, as I was trying to make sure she had the life she wanted, as I was struggling to communicate with her, that taught me a whole new language. As the language shrinks, it also changes."
Living alone in her home, she fought her slipping mind every inch of the way. "Slowly, she became aware of things she couldn't do," says her son. "I can't pay my bills anymore, can't drive my car, don't know how the remote control works. These are things that she gave up bitterly." It is indeed that loss of independence -- while struggling to hold onto it -- that can make dementia such an agonizing day-in-and-day-out struggle for both the person with the illness and the family members trying to care for their loved one.
Ptolemy, too, is painfully aware of his slipping mind. Mosley, however, gives his main character a choice unavailable to the rest of us -- "a very, very tiny moment of magical realism," says the author. A charlatan doctor -- whom Ptolemy calls "the Devil" -- will give him his mind back in exchange, ultimately, for his body. "I wanna make it so that I could think good for just a couple mont's, Doc," Ptolemy says. "I got some things to remembah, and relatives to look aftah."
The Caregiver: First, Preserve Dignity
There is another plot point -- perhaps the real magic in the book -- that helps Ptolemy find order amid the chaos, and come to live safely and relatively independently in his own home. At a family funeral, he meets his young great-grandniece Robyn, who is looking for a home and for someone to care for. The two are ideally matched and treat each other with mutual honesty and respect. You can practically hear the sigh of relief in Ptolemy's voice in the following conversation with his 17-year-old niece:
Robyn is able to do what no one else could, hour by hour establishing herself in Ptolemy's life and his home, making sure she had won his trust before she began cleaning decades worth of debris and filth. "He was trying to hold onto his memories amid the dross," Mosley explains, "and he was afraid someone would throw out the good with the bad." Robyn asks his permission before removing anything, even an old toothbrush -- and, inch by inch, room by room, she wins his confidence. (For real-life tips on adapting a home for a loved one with dementia, see this post by my colleague Kathryn Haslanger.)
Mosley himself spent a lot of time looking for the right caregiver for his mother, someone who would listen to her wishes and respect her dignity -- a search complicated by distance, with her living in her Los Angeles home of 50 years and him across the country in Brooklyn. "You have to listen when somebody tells you they do or don't want something, even if their mind is slipping," he says. "You have to have respect for their wishes." Ultimately, he found the right person, who remained with his mother until she died two years ago.
An author best known for his best-selling gritty urban mysteries -- and with a new mystery, "When the Thrill is Gone," coming out in March -- Mosley finds he is making deep connections with audiences outside his usual readership, including, he says, "Midwestern, middle-aged white Republican women."
"I wasn't trying to write a book with a hot topic," he notes, "however I'm finding that a lot of people identify with it. I wanted to write a book that somehow, in its odd way, expressed and gave dignity to this experience."
Have you read a good book lately -- or seen a movie or experienced other art -- that gives insight into what it's like to live with dementia? Please share what you've gained, whether it's tips for caregiving, inspiration that helps you cope each day, or connections that help bridge the isolation.