Artist Joan Gaustad's book "Someone's Missing ... and I Think It's Me: Our Great Adventure With Dementia"
On the front of “Someone’s Missing … and I Think It’s Me” — artist Joan Gaustad’s memoir/chronicle/advice and art book describing the mental deterioration of her husband of 37 years, artist and Virginia Commonwealth University professor Jerry Donato — is a ripped photograph of a youthful Donato. While in the grips of dementia he’d ripped the image into pieces, and she wondered if this action expressed contending with his fractured memory and tangled consciousness. Some months later, when Gaustad visited him at the latest of several care facilities, she found him sitting, hangdog, a blank sheet of paper in his lap. Gaustad asked how he felt. “He picked up the page and tore it. ‘Like this …’ ”
Forthcoming events associated with the book include a book launch at 7 p.m. on Wednesday, Sept. 8, at VCU’s Cabell Library. Gaustad engages with Sara G. Monroe, M.D., VCU professor emeritus of infectious disease, who became involved with Donato’s case. The event is live and virtual, and the limited space requires registration.
Then at The Anderson at VCU from 6 to 9 p.m. on Friday, Sept. 10, is an artist’s reception for Gaustad’s exhibition complementing the book, curated by Michael Lease and on display on the first floor of the gallery until Sept. 29. The exhibit contains work by both Gaustad and Donato, with items from their home and studio. Chop Suey Books will be present at both occasions.
The subtitle for the book is “Our Great Adventure With Dementia,” which describes the devastating slalom course with the illness that began as a diagnosis of possible attention deficit disorder or a vague notion of the “absent-minded professor” syndrome. Donato’s excellent health, quick (and often raunchy) wit and Chicago brio beguiled professionals. Gaustad knew something else was going on due to odd quirks of behavior, unusual even for Donato. Then he experienced difficulty with some cognitive tests, such as drawing a clock. He took early retirement from VCU. Eight years later, at age 68 on Valentine’s Day 2010, the advance of dementia took his life.
“After Jerry passed away I decided I needed to do this, because he was so suddenly gone,” Gaustad says. “I wanted to tell the stories of the things we went through. I wanted to describe how we met, and our life together, but not get mushy about it, to give the whole story up front and present a series of vignettes.”
She showed her work to friend and former curator Ashley Kistler, who urged Gaustad to make art from these bits and pieces. “She told me it’d be like an indie film shot on a cell phone,” Gaustad says.
1 of 3
Artist and author Joan Gaustad (Photo courtesy Joan Gaustad)
2 of 3
Art and objects from the life and work of Joan Gaustad and her husband, Jerry Donato, form the exhibition "Someone’s Missing … and I Think It’s Me." (Photo courtesy The Anderson)
3 of 3
From personal articles to art, Joan Gaustad's "Someone’s Missing … and I Think It’s Me" at The Anderson (Photo courtesy The Anderson)
Near the book’s front is a form of introduction through the use of an essay Gaustad submitted to The New York Times for its “Modern Love” column. The paper didn’t accept the piece, which is by turns darkly humorous and wrenching. “We need humor to face devastating, humiliating illness and even death,” she says.
On a pink Post-it on the essay, Gaustad inscribed, “Rejected!!” wondering if the references to unfortunate bathroom incidents proved too much for the Times’ editors. Their loss is our gain, as the piece provides an overview history of the experience.
Gaustad emphasizes that the book and exhibit are not about Donato's death, but his life, and the works he made and which remain.
She relates how, when hospitalized and deep into dementia, Donato observed while holding an apple, “Someone’s missing.” He took a bite, continuing, “and I think it’s me.”
What occurred during that period is represented in Gaustad’s book and the jumbled profusion of the gallery exhibition. Her plan for “Someone’s Missing …” interested but stymied potential agents and publishers, due to the collage of handwritten diary pages, photographs, reproduced art, narrative and notation, and its opening like a laptop rather than the standard format. Without reserve she weaves the story of Donato’s decline, his outbursts of anger and confusion, while retaining empathy for other patients and animals, the strangeness of their being separated when they rarely spent more than a few days apart, the disorienting transfers from one facility to another, the assorted prescriptions and at times use of physical restraints. Here, too, are uncomprehending professionals but also friends who come to their assistance.
Gaustad notes that through the course of Donato’s illness she ultimately collected 30 books about caring for a loved one with dementia. One in particular that she hid pertained to vascular breakdown, the cause of his deterioration, of which he was in denial. The most useful of the books, she ruefully writes, pertained to training puppies. Discovering the dog made a deposit on the meditation pillow, which he then won't remember doing, and then getting angry and trying to discipline him will likely hurt the animal and make him angry. Best to clean up the mess and move on.
But there is other practical advice: Get to know the head nurses, who really run the units. Keep things simple; simple clothes, simple food. Sleep is essential for the caregiver, but if your loved one is at home, not likely. Sleep aids for the brain-ill, even Benadryl, accelerate confusion. And don’t, as Gaustad did for some time, try to go it alone.
After the book came from Kistler’s urging, then it came to the attention of Kelly Gotschalk, director of development and major gifts for VCU Libraries, who brought the book to the attention of Sam Byrd, publishing librarian of scholarly works.
“I didn’t think VCU would be interested because they publish academic books,” says Gaustad, who also graduated from VCU.
Jimmy Ghaphery, associate dean for scholarly communications and publishing, says in a VCU press piece, “We thought it was important because of Joan’s connections to the entire VCU and Richmond artistic communities and the beautifully authentic intersection with arts and health.”
Katie Condon, digital specialist, worked closely with Gaustad in producing the final work, contributing digital dissemination, copyediting and layout.
Proceeds from the book ($35) benefit the Gerald Donato Endowed Scholarship in Painting and Printmaking at VCU, awarded to deserving undergraduate students in the painting and printmaking and sculpture departments. “Someone’s Missing” may also be downloaded for free through VCU Scholars Compass.
Gaustad reflects on her husband's illness, "To see Jerry look at a child, a tree, a fellow patient or me was to be awed by the infinite capacity for empathy we all have, and to know he was more Jerry than ever."
He was, she says, never missing.
