Whenever I see the term “Alzheimer’s Disease,” I wonder how people tell the difference from, say, everyday forgetfulness and the start of senile dementia that leads to Alzheimer’s.
Most books about Alzheimer’s address this question, but rarely have I seen a more succinct description of that “different kind of losing” that begins long before anyone — family or patient — figures out what’s really happening.
“It started out as the kind of losing we all know well,” writes Doris Ober in The Alzheimer’s Years: A Mother and Daughter Reunion.
“You put (something) down somewhere and walk away from it and can’t remember where or when. But if you add some paranoia to the formula, it becomes a different kind of losing: You hide it for safekeeping and don’t at all remember having done so. The only possible explanation is a theft.
“And the more it happens, the more things disappear, the cleverer and more creative you become about your hiding places. Even if you could remember your intention to hide a particular item, which you can’t, you’ve hidden it so well, you’ll never find it.”
And so we watch as Doris searches for the things her mother Betty is convinced someone has stolen.
“Lost mail, lost glasses, lost tin in which she kept quarters for the laundry machines,” writes Doris. “Lost hearing aids, lost dishes, lost ice cream, lost poetry.” Doris finds them in the most ingenious places, like under the toilet plunger, where, of course the “blonde thief” that Betty insists has been sneaking in all along, hid them until the next time.
The most valued item — a pint of ice cream — is uncovered weeks later in a pot at the bottom of a closet where it’s hardened into the consistency of Styrofoam.
Doris is the independent book editor in Point Reyes, California, who transformed Randy Shilts’ mammoth 1000-page manuscript about AIDS, And the Band Played On, into the succinct and moving bestseller it became in 1987. (She sat by his hospital bed helping him write the last chapter of another groundbreaker, Conduct Unbecoming, about gays in the military, before he died in 1994.)
Those books, among the many dozens that Doris edited, co-wrote and ghosted from her tiny office perch in the 9-story Chinese-box house built by her partner Richard (best described in her last book, The Dogtown Chronicles), gave Doris a literary lens through which to view the stormy fading of her 90-year-old mother’s mind as Alzheimer’s set in.
“Of course (the different kind of losing) is all a metaphor for the greater loss you’re suffering,” Doris continues. “The one no one can see. The one you get intimations of, the void that’s opening up inside and seems to be enveloping you.
“My mother was able to speak of it in cryptic phrases, dropped into conversation or into silence. ‘You have no idea, how terrible it is,’ she said. ‘I so don’t want to go into the woods.’ Once she told me, ‘Soon I’ll be completely empty.’ “
The great hoodwink of Alzheimer’s in the early stages, we learn, is the way it moves everyone to deny what’s really happening, and to deny it for very legitimate reasons. In the midst of her many lapses, Betty practices and plays the piano (including duets with Richard), remembers her recipe for chopped liver perfectly (Doris includes it in the book) and accurately identifies and converses with the shopkeepers she meets on her (fewer and fewer) walks into Point Reyes.
And the great learning curve for Alzheimer’s caregivers, Doris tells us, is to accept the huge contradictions of the disease (her mother could be delightfully “clownish” yet bitterly morose at the same time;), to embrace other afflictions of the aged such as Lewy Body Disease, which causes Betty to experience terrible “night crazies” and flailing of her arms as if batting something away; to understand how deafness can be “the perfect disguise for dementia,” and to learn “how important it was,” in the midst of one painful argument after another, “for me to win.”
Along the way, though, Doris’s (now trademark) light touch often transforms the cold reality of impending death and loss. She loves to show us the humor of Betty, who at 92, after surviving several near-death experiences, announced to friends, “When you get to 91, just skip it.” At a costume party, Betty turned her fear of becoming homeless into a joke everyone could enjoy by taping grocery bags all over her body and on her head so she could come as a “bag lady.”
Still, you aren’t going to see the author’s insights coming all that easily. While
Doris follows the chronology of her mother’s six-year battle, sometimes in the midst of developing a theme or story, she takes an abrupt turn to discuss something else. This doesn’t make the writing superficial or clumsy. Rather it brings an immediacy and flow to the story that pulls us in as part of the family.
Here, for example, is Doris realizing in a letter to her brother that something remarkable is being communicated in the many thank-yous that Betty, who’s lost 45 pounds in a year and sometimes can speak only in “Da-da-da-da-dah” sentences, repeats to her daughter.
“She tells me over and over how much I mean to her, how much she loves me, how her love for me and mine for her keeps her alive. I’m sure she’s right about this and I think it’s astonishing how such a sophisticated understanding exists in a woman who knows almost nothing else.”
We’ve only been given a glimpse of the estrangement that once separated Doris and her mother for many years, and of the protracted fights that both experienced as shattering. So this core moment in what the subtitle calls “a mother and daughter reunion” comes almost without previous resolution. But what we miss in back story, we gain in the present, watching their trust develop anew, page by page, as partners in one last adventure.
So: How do people know when forgetfulness turns to dementia, then to Alzheimer’s? This book says there is no way to tell — no logic, no bridge, no step-by-step instruction. But if dealing with the changing needs of the elderly means that we make our own roadmap, it also means we might change radically — we might learn a new kind of love — by the time we get to the other end.
A Word about purchasing The Alzheimer’s Years
I used to believe that critics shouldn’t tell you where to buy books, but in the face of Amazon’s ATRW (Attempt to Rule the World), let’s bypass that route and spend our CRD (Concerned Readers’ Dollars) with independent bookstores.
You can purchase the book direct from Doris (at Villca Qutu Publishers, P.0. Box 417, Point Reyes Station CA 94956), but if you go to the website of her local bookstore, Point Reyes Books you’ll fall in love with this bookseller’s sense of community and author advocacy. There you can buy both Doris’ books as well as one of the better literary journals in the country, West Marin Review, where Doris is managing editor.
And let’s rejoice: It’s great to pay full price to independent booksellers whose very existence keeps First Amendment options and protections safe for all of us.
Finally, full disclosure: I’ve known and admired Doris as an editor for 30 years and am impressed by her choice as a self-publisher to change the rules (not her standards) by recording her experience exactly as she wants to.
For example, an Acknowledgments page exists in this book, but the author stops the narrative several times to thank friends for their help, blast a local hospital for treating her mother “shabbily” and praise another for its compassion and care. Self-publishing is a fine old tradition in the West. It’s often eccentric and never slick, which is why I’ve always liked it, and come to love it again in the publishing of The Alzheimer’s Years.
Meet Doris Ober December 8 at Book Passage
A few years ago, I had a wonderful time introducing Doris at Book Passage in Corte Madera CA when her first book, The Dogtown Chronicles, came out. Before the program began, the thoughtful staff set out about 15 chairs with a nice table in the back row to make the event look well attended if only a handful of people showed up. When, however, 20 or so arrived, the booksellers quietly set out five or six more chairs and stood back, thinking that was it as far as audience attendance was concerned.
Well, Doris and her West Marin Review are hugely respected in Marin, so it was kind of humorous as people arrived to see the staff race to the stockroom for more chairs, and then more chairs, and still more chairs, until the crowds (about 200 total) extended far back into the children’s section and almost out the door.
I say I had a great time introducing Doris because I got to mention that The Dogtown Chronicles may look like a modern version of that classic urban-couple-buys-a-farm story, The Egg and I, but since it’s about raising nearly extinct breeds of farm animals (goats and sheep) in 10 acres of lush untouched nature loaded with bobcats, weasels, hawks, skunks, raccoons and other predators roaming about, a lot of raw, everyday brutality is revealed. As a result, the book teaches us how it feels to grow up in a neighborhood of serial killers always waiting in the underbrush, and how death in the larger yet more personal sense is simply one of the many events about to befall us whether we’re animals chewing a blade of grass or humans forgetting where we put the car keys.
All this to say that I think The Alzheimer’s Story might be called a sequel to The Dogtown Chronicles and that these books could be packaged together to make a nice holiday gift for an unsuspecting friend or relative who will surely be grateful for two lessons in existentialism disguised as light end-of-life reading.
So come see Doris at Book Passage, 51 Tamal Vista Blvd., Corte Madera, this Sunday, December 8 at 7 p.m. I’ll be introducing her again and will give you my seat if the place is packed.