Aliya Saunders, 9 years old, guest post: “This is about my ouma and oupa and me”
Since Doña Quixote has had me locked up in dementia jail for many days during the past weeks, I did not have the wherewithal to do any writing. Fortunately, my granddaughter Aliya stood in for me by writing and illustrating this post. Aliya is 9, a great student, a voracious reader, a bodily-activity fanatic able to do cartwheels with a no-ground-touching cast on her foot, an artist, and a fashionista. Here is her post:
Ouma and Oupa come to see me shoot goals at my soccer game
Sometimes I play goalie I love gymnastics
I love painting and drawing. I draw most of the time that I am not playing outside with my friends, doing chores, doing homework, or paying attention in my class at school.
I made a sculpture for Reflections at school. In the middle is my ouma’s brain. I made long strings like spaghetti and twisted them on a ball of clay to make my ouma’s brain. My oupa’s hands are on the sides to protect Ouma. For Oupa’s hands,I bent my own hands and pressed the clay on top of them. Then I peeled it off and made it smooth. I wrote on the wooden board My Oupa helps my Ouma because she has dementia.
My whole family helps to take care of my Ouma when she gets tired from her dementia. Back row, left to right: My aunt Marissa, Ouma and Oupa, my dad Newton and my mom Cheryl, and my uncle Adam, Marissa’s husband. Front row, my cousin Dante and me. My brother Kanye is on the other side.
I made this portrait of Ouma when I was eight. She is happy. She loves jewelry and I do too.
A RadioWest “Staff Pick”: short film series about Gerda and her family’s life with dementia
Featured photo: The RadioWest team, Elaine Clark, Kelsie Moore, Doug Fabrizio, Benjamin Bombard
RadioWest and I go way back. In 2001, Doug Fabrizio interviewed me on his then brand-new “intelligent” show about my book of short stories that dealt with my family’s emigration from South Africa to Utah. Doug had thoroughly read my book (no, studied it), prepared thoughtful questions that brought out nuances that mattered to me, and treated me with utter respect. Little did I know then that I would eventually participate in a film project with this kind, meditative professional, and that RadioWest would play a momentous part in a life challenge more difficult for me than immigration: my diagnosis—in 2011, at age 61—with microvascular disease, after Alzheimer’s the leading cause of dementia.
Trans ī re, or The Passage, Frederick Raddum (2017). (“Powerful Bronze Sculptures Tell the Story of European Migrants in Search of Utopia“.)
As I was putting the finishing touches on my memoir, Memory’s Last Breath: Field Notes on my Dementia, Doug and his producer, Elaine Clark, invited me to participate in a series of films about how my family and I are living with my dementia. That’s how RadioWest became part of my dementia journey and advocacy. After five films and a radio interview, I count Doug, Elaine, and videographers—first Josh Weathers, then Kelsie Moore—as part of my made-in-America family. Doug’s sensitivity to my emotions allowed me to open my heart. The whole team’s preparation for hours-long interviews with me and my family was unbelievably thorough. Their knowledge of dementia went much further than the information in my book. The interviews were at times very emotional. Doug, Elaine, Josh, and Kelsie were sharp observers of my psychological state, and frequently offered to stop if the discussion was too much for me. I felt respected—and loved. Filming time was marked by deep—I can say spiritual—connection, tears (not only me), lots of laughter, and total professionalism—not easy to pull off while they filmed me in weird situations, for example, as I struggled to shower and get dressed!
From left, Gerda, Elaine Clark, Josh Weathers, Doug Fabrizio in our kitchen/dining/entrance at our Roberta Street house.
Since my diagnosis, I have learned that I have thirty thousand Utah dementia buddies. Alzheimer’s/dementia is the fourth leading cause of death in Utah, while it’s “only” the sixth leading cause of death in the U.S. Moreover, ours is among the ten states where dementia is increasing faster than in the rest of the country—a 40 percent increase of dementia patients is predicted over the next seven years in Utah. Nevertheless, my experience (and that of the Alzheimer’s organization) shows that many Utahns with dementia in the family do not talk about it.
My peers at my Utah Alzheimer’s Association support group and I have experienced the stigma and shame associated with dementia in our state. For this to change, our citizens have to know more about dementia. Because of RadioWest’s videos of me and others with brain diseases and radio interviews with experts in the field—for example, David Shenk, who wrote The Forgetting: Alzheimer’s: Portrait of and Epidemic—thousands of people have been reached in Utah and elsewhere, as is evident from the people who recognize and talk to me in the library, in Costco, in Las Vegas, as well on the Champs d’Elysées in Paris where a French citizen stopped me to ask if I were the woman in the dementia films featured in Slate.
Pierre Bachelier, who recognized me on the street in Paris after seeing a RadioWest film. He now has newly graduated as “maybe the the only cool tax lawyer ever” from the EuropaCollege in Brugge, Belgium.
My story, of course, is just one of the hundreds that RadioWest has told on radio or in film. Their programs about people who cope with mental and physical challenges have been an education for me, as they are for my fellow Utahns as well as out-of-state-ers. My goal since my diagnosis has been to make a positive difference in the lives of people with dementia and those who love them by showing that my life is still very happy. RadioWest is helping me realize my goal.
Climbing the Clouds, Fredrik Raddum (2019).
Doña Quixote gets a makeover
Featured image: Cosmopolitan: skeleton makeup tutorial
In August 2016, I signed the contract that granted Hachette Books the rights to publish Memory’s Last Breath: Field Notes on my Dementia. It came out in June 2017.
During the writing of my book, I created a character, Doña Quixote, to represent my demented alter ego. On her I heap the blame, shame, anger, frustration, and embarrassment that dementia rains on me. She is the avatar of my disease, she lives outside of me. She is the culprit of all that is wrong with my brain.
The Broken Column, Frida Kahlo (1944). “Although her whole body is supported by the corset, Frida is conveying a message of spiritual triumph. She has tears on her face but she looks straight ahead and is challenging both herself and her audience to face her situation.”
By distancing myself from my dementia in this way, I can still think of myself as the former me and thereby retain my dignity and self-confidence—sometimes.
My Nurse and I or Me Suckling 1937)
Within a week after I signed the book contract, Peter came home with a very special gift for me. He’d found her at Deseret Industries (DI), the Mormon Church’s thrift store. “This is Doña Quixote,” he said.
I was so touched and excited that Peter recognized her and brought her home! I immediately loved her rattly frame, a mobile of bones the size of a two-year-old. A day or so later, I found a hat that had her name on it. To complement her headgear, I donated some jewelry—and voila, Doña Quixote was decked out in a style of which the aesthetics resonated with my own. At first we dangled her from a ceiling hook in the kitchen, from where she presided over the chaos of spilled coffee, dropped milk bottles, oven-burned hands, dinner-preparation finger cuts, and misjudgments of where the counter ends, with its resulting splatter of glass shards.
As the months passed, she gradually outwore her welcome in the kitchen: her ghostly feet mussed my hair every time I passed by her near the back door. I could care less about my hair, but what I couldn’t bear was the anxiety-laden jumpy state that her sudden gentlings provoked. My brain interpreted them as attacks, since I continually forgot that the Doña was their unwitting source. As a result, I experienced heart-stopping frights, each accompanied by a hair-raising flight-or-fight response, more than once a day. Either she or me had to go. Since my assisted death is still far in the future, it had to be her. With mixed emotions, I banished her to our back stoep, where, in the company of the quail and squirrels—I tried to convince myself—she would be as happy as those dogs in dog heaven.
The day Maria Shriver’s film team came to our house in Roberta Street. Doña Quixote is hanging from the stoep’s rafters, right above the camera.
On the publication front, Hachette was somewhat concerned at the paucity of my presence in the electronic media world. I had, by then, been on Facebook for several years but had fewer than 100 followers, most of whom I knew personally. That, Hachette’s marketing gurus declared, would not do—they’d like me to join every electronic media outgrowth, from Pinterest to Instagram. (Haven’t quite figured out Instagram…) And I needed a website. Peter and I set out at once to remedy the situation. After a long collaboration, which often strained our conjugal bonds, we launched the first version of our site. My blog found a home there too. Thanks so much to you, my readers—whether you have followed my blog from my first post or whether you came on board later—for your loyalty and support. Especially when I’m down, receiving a comment on my blog from one of you just makes my day.
Tree of Hope, Keep Firm, Frida Kahlo (1946)
My website has been up for three years now. Through the vicissitudes of broken links, human error, and advances in technology, it has been looking increasingly threadbare the last while. Peter and I finally got started on a make-over when we returned from San Antonio the last week in June. While we’re not quite done, Peter and I thought it was far enough along to start using it. Today is my first post in the simplified design. On your computer screen you won’t see a huge difference from before, but on your cell phone it should look much less messy.
The Broken Column, Frida Kahlo (1944). “Although her whole body is supported by the corset, Frida is conveying a message of spiritual triumph. She has tears on her face but she looks straight ahead and is challenging both herself and her audience to face her situation.”
In the three years since Memory’s Last Breath’s publication, my book, too, had a number of facelifts:
Above, in April 2018, the paperback came out; Peter holding the Japanese edition that recently came out. Below, Chinese edition.
Our move from Roberta Street to Wilmington Flats prompted other changes associated with my dementia-related projects: as we frantically divested ourselves of truckloads of material possessions, the bony, dressed-up figure of Doña Quixote did not make the cut. No room to swing a skeleton inside our new apartment. And the rules prohibit hanging items on the balcony. In the context of having to give away more possessions than we could take along, giving Doña Quixote the boot was not the heart-rending dilemma one might imagine. The Doña, after all, personifies everything that’s wrong with my brain. Who wouldn’t want to ditch that?
As I was about to pack her in the DI box, though, it felt that some ceremony was required. I carried her into the living room, already stripped of paintings and chachkas. Placing her in the seat of honor on the mantle, I said my goodbyes from my half of our LaZBoy couch.
Doña Quixote was not impressed. “Might as well get used to letting things go,” she snarkily remarked.
I didn’t argue. She’s right, of course. She, after all, was the entity that day after day robbed me of my capabilities. She leaves me no choice in letting go of my math skills, my executive function, my self-confidence. Heart hardened, I dumped her into the nearest box. “Out of sight, out of mind,” I muttered.
From her box-coffin, Doña Quixote quipped, “Out of mind? Takes one to know one.”
She was right. She was in my bones. Damn bones, damn bones, damn dry bones. She was my inner shadow, always with me. Her material form is still with me, I can see her swaying in the breeze out on our stoep. Her appearances in my mind leave me some regrets, for what I do not know.
Moses, Frida Kahlo (1945)
About a month ago, while we were shopping in the Mexican market in San Antonio, she appeared not just in my mind, but actually in material form: there she was, sitting in a mandorla of light in a glass case near the entrance: a dia de los Muertes figure that looked like the back-stoep Doña might after a reality show make-over. No DI rags for this avatar!
The best part about her was that she came in the the form of “a Frida,” that is, a day-of-the-dead image created with the likeness and attributes of artist Frida Kahlo: there she was, complete with monkeys and parrots.
Frida Kahlo was born in Coyoacan, Mexico, July 6th, 1907. At age six, she contracted polio; a long recovery isolated her from other children and permanently damaged one of her legs, causing her to walk with a limp after recovery. At the age of 18, she was seriously injured in a bus accident. She spent over a year in bed recovering from fractures to her spine, collarbone and ribs, a shattered pelvis, and shoulder and foot injuries. She endured more than 30 operations in her lifetime and during her convalescence she began to paint. Her paintings, mostly self-portraits and still life, were deliberately naïve, and filled with the colors and forms of Mexican folk art. At 22 Frida married the famous Mexican muralist Diego Rivera, 20 years her senior. Their stormy, passionate relationship survived infidelities, the pressures of careers, divorce, remarriage, Frida’s bi-sexual affairs, her poor health and her inability to have children.
Left, Henry Ford Hospital (1932). Right, The Dream (The Bed) (1940)
I have long felt a deep connection to the artist, which had strengthened after I discovered my own broken parts. I particularly related to her in regard to the way she used her art and clothing style to reconcile herself with her broken body. Every morning, as if in a ritual, Frida would dress herself up like like Cinderella going to the ball, arranging her costume and jewelry so as to hide the wounds on her body. Is that why I’m so interested in weird clothes?
Left, Appearances Can Be Deceiving, Frida Kahlo. Right, Installation: Appearances Can Be Deceiving, Frida Kahlo Museum, 2012.
“With a carefully curated wardrobe, Kahlo used her sense of style to define and conceal herself at will, fashioning an iconic status and establishing herself as a Mexican pop cultural figure. She used the fact that her clothes had to be customized to fit her body and accommodate her disability to her advantage. As Kahlo noted during her time in San Francisco, in a quote displayed on the museum’s wall, ‘the gringos really like me a lot and take notice of all the dresses and rebozos that I brought with me. Their jaws drop at the sight of my jade necklaces and all the painters want me to pose for them.'”
“The gringos really like me a lot…” A Frida Kahlo inspired design at the Jean Paul Gaultier Spring/Summer 1998 fashion week.
During her lifetime, Frida created some 200 paintings, drawings and sketches related to her experiences in life, her physical and emotional pain, and her turbulent relationship with Diego. Out of her 151 paintings, 55 are self-portraits. When asked why she painted so many self-portraits, Frida replied: “Because I am so often alone….because I am the subject I know best.” A Mexican critic noted that “her paintings are her biography.” (See a slide show about Frida’s life.)
Self-portrait with a Necklace, 1933.
In early July 1954, Frida made her last public appearance, when she participated in a Communist street demonstration. Soon after, on July 13th, 1954, at the age of 47, she died. Many mourners gathered at the crematorium to say goodbye. As the coffin was slid into the incinerator, her admirers’ lamentations and weeping filled the room. Legend has it that a sudden blast of heat from the open incinerator doors caused her body to bolt upright. Her hair, now on fire, blazed around her head like a halo. Her lips seemed to break into a bewitching grin just as the doors closed.
Funeral de Frida by Mark Bautch aka Satyarthi aka Marc DeBauch.
Such were my memories in the Mexican market as I stood at the display case lusting after Frida/ Doña Quixote. After tearing myself away to check out the rest of the market, I tried to remember the exact words of a quote of Frida’s I had copied down on a card and stuck to my computer at home. As I cycled back to the figure every now and then, my ear rang with three remembered words: “I heaven you.” I approached the owner of the booth and asked how much she cost. The price was enough to extinguish the candle I was burning for her. (It was not millionaire expensive, but it was extravagant for seniors-on-a-fixed-income.)
Memory, the Heart, Frida Kahlo (1937). This self-portrait expresses Frida’s heartbreak over one of Diego Riviera’s affairs. It shows her hair cropped, indicating the distance between her “real” (Mexican) self and the self wearing European-style clothes. Her Mexican clothes—her schoolgirl outfit and Tijuana costume—each has one arm only. Her unloved self has no arms. One foot is on the ground, the other hovers above the sea. The foot over the sea wears an apparatus that suggests her recent foot surgery.
At some stage during our visit to the market, Peter noticed my eternal return to the same display box. I pointed to the object of my avarice. He immediately recognized her as Doña Quixote. He asked if I wanted to get her, but I said no—she was expensive and we had no room for her in our new place.
Doña Frida, still homeless while I am still feng shui-ing for a perfect spot
Peter didn’t take no for an answer, though. He bought her. I was ecstatic. The third-generation booth owner wrapped her in enough bubble wrap to land her on the moon! We carried her with us on the plane. She made it home safely, but we are still looking for a good place to house her in our living room… Watch these pages for the outcome!
Rolling my eyes at Peter’s smart-ass remark that “she could live in our storage room,” I cradle her on my lap. But where is the Doña? See how she and I blend into one another?
After arriving home in one piece, Doña Quixote/Frida has not had much to say. The other day, though, when I moved her from the Victorian cupboard to the table to our bedroom and back again she muttered, “Poor thing, she’s crazy!”
To which DI Doña replied, “Told you so. Been there, done that.”
The Gerda part of me sighed, Be careful what you wish for. Oh, I am fortune’s fool!
Leaving the two sister-wives to trade their repartee, I went to my computer to look up the half-remembered quote from the Mexican market. Here it is:
“Can verbs be made up? I’ll tell you one. I heaven you, so my wings will open wide to love you boundlessly. I am not sick. I am broken. But I am happy to be alive as long as I can paint.”
Frida in the hospital painting her body-cast
Peter and Gerda at work and play in San Antonio
Last Saturday, June 15th, Peter and I participated in the “Building Partnerships for Geriatric Care: Patient-Centered Outcomes Research Symposium” in San Antonio.
The main organizer of the conference—and the person who invited me to speak— was Carole White, a professor in Nursing at the University of Texas at San Antonio. Her research focus is to improve outcomes for those with chronic neurological disorders and their family caregivers. She leads the Caring for the Caregiver program at the School of Nursing, UT Health San Antonio. The program supports the health and quality of life of families caring for their loved ones with Alzheimer’s and other dementias. By working with the community to identify the strengths and gaps in care, they have developed a program geared to the needs of caregivers in South Texas, through practice, education, research, and community engagement.
The dynamic Professor Carole White gives away copies of my book that were raffled at the conference.
Partly as a result of Prof. White’s work, The University of Texas at San Antonio was able to declare San Antonio a dementia-friendly city during the conference (Dementia friendly cities). It means that the Caring for the Caregiver program trains volunteers of all stripes to raise awareness of resources in the city, educate the public about dementia, welcome people with dementia in the community, and support family caretakers. (According to the Alzheimer’s Association, family caretakers provide 18.5 billion hours of care in the US, valued at nearly $234 billion dollars.) What really struck me about the announcement was that the Sherrif’s office is involved in the dementia-friendly program and training. The Sherrif said that people with conditions such as autism, diabetes shock, or dementia can sometimes appear to be hostile in ways similar to suspects who are uncooperative or resist arrest. They believe that training will equip officers with information that will prevent the kinds of tragedies that have happened to people with those conditions during interactions with the police.
Fox News video: announcement of San Antonio’s status as a dementia-friendly city. I am the speck on the left of the orange board at the back!
Another very exciting event at the conference was an announcement that my newest dementia-advocacy buddy, prof. Carol White, had received one of the US’s most prestigious nursing recognitions: she had been selected as a Fellow of the American Academy of Nursing “for [her] extraordinary commitment to the promotion of the public’s health through evidence and innovation.” She joins the Academy’s approximately 2,700 members, known as Fellows, as “nursing’s most accomplished leaders in education management, practice and research.”
Peter and I were so spoiled by Carole and her team: not only did they fly us both there, but they also paid for our accommodation on the two conference days. We met many of the team members on Friday night at a wonderful dinner they hosted in an Italian restaurant. Peter said that this was the most fun academic dinner he’d ever attended! Although I cannot remember all your names, dear dinner attendees, I want to say thank you for your hospitality and love. After the dinner, I felt that I had gained another whole made-in-America family. Thank you for the work you do to educate your and other communities about dementia, thereby helping lift the secrecy and shame that is unfortunately still associated with dementia.
On Saturday morning, Peter and I both attended a workshop focused on creating standards to engage people with dementia, their families, and their communities in research on dementia care.
Among the many lovely people we met were attendees Bill and Janet Zinsmeyer. Janet has Alzheimer’s and Bill has been her caretaker since she was diagnosed 2-3 years ago. Bill is also on the board of the Caring for the Caregiver program and was instrumental in the efforts to have San Antonio qualify as a dementia-friendly city.
Carole White speaks with Bill and Janet Zinsmeyer. Like me, Janet—who has dementia—has some bad days during which she does not have the energy and courage to leave the house. She said that the day of the conference started out badly, and that she thought she would not be able to make it. Bill encouraged her to just get up and get dressed. After she had done so, she felt better and was able to come.
In the afternoon, I gave a presentation on living with dementia, PowerPoint and all. I cannot do this by myself, so Peter is up front with me, throughout my talk.
The first thing I talk about in my presentation is why I need Peter’s help. The problem is my broken working memory. Here is the image on the Powerpoint that I use to explain the situation.
Here is my explanation to the conference participants:
“Working memory is the ability to hold the information to perform a multi-step task in one’s mind long enough to complete the task, while also filtering the stream of various inputs (as shown on the screen) and retaining only the relevant bits while suppressing the distracting ones. When I stay in my head, such as in writing, I can still do the filtering. However, when bombarded with input—like now—I cannot manage to read my talk on a computer screen AND advance the PowerPoint. So I read from paper, holding the line I’m on with my finger. Peter coordinates what I read and what you see on the screen. But even managing papers has many steps: when a page is done, I have to put it behind the unread ones or make a “completed” stack on the podium. Doing so would make me shift my finger, lose my place, and cause me extreme anxiety. Accordingly, I rather drop it to the floor.”
As some of you who have attended recent talks and readings will know, I now always do the shtick of dropping my papers—although it isn’t a shtick. I really get totally confused if there is more than one paper before my face on the podium. Even when I drop the ones with which I’m done, I still get confused: This time I accidentally tossed a paper that I had not yet read. Peter sees the panic on my face. He stops advancing the slides. Presentation comes to a halt. Sara Masoud, Community Outreach Coordinator at Caring for the Caregiver—and instant family—rushes up to help me find the paper from the chaotic spread on the floor. Paper found, I manage to continue.
Sara Masoud, who not only introduced me, but later crawled on the floor to retrieve a page I mistakenly dropped
When my presentation was done, I was exhausted and really out of it. Although I inferred from the enthusiastic clapping that it had gone well, I had only one thought in my mind. I just ran toward Peter.
Peter told me later that the audience gave a standing ovation! I’m just so happy that they liked it and found it helpful.
Once Peter’s hug had somewhat restored me, we answered questions from the audience. In this photo Peter is telling what it is like for him to live with me. He lied. He said it was easy!
Then there was a book signing. I was so out of it, I more than once wrote a note in somebody’s book and then forgot to sign my name. Several people trooped back so I could do it properly…
When the goodbyes were over, we went back to the hotel and I slept for 3 hours. After we had dinner, I went to bed again and slept until almost 10 the next morning. At last I was ready for the vacation part of our trip! Peter and I had a wonderful vacation—both of us experienced our time together as sheer bliss!
Peter booked us into the Contessa Hotel, which is right on the River Walk.
Peter sweet-talked the manager at the front desk, and we ended up getting a whole suite overlooking the river. (It seems that mentioning we’d been married for 48 years gets you the wedding suite!)
Above, “the bar” in our living room in the hotel suite
Above, communal outdoor deck overlooking the river
Above, as seen from the deck
Above and below, we visit the Japanese Gardens
Along the river walk right by our hotel, we stop at “Wedding Island.” One day we saw a wedding in progress as we walked by.
Peter and I had such a lovely time in San Antonio, it felt—as Ishmael says in Moby Dick—as though “we were in our hearts’ honeymoon.” I think another slide from my Powerpoint illustrates both the nostalgia and the joy I experienced during—and after—this get-away with Peter:
This is what I read from my book and, at the end, the lullaby that I sang while the slide was up:
“At our red front door, I alone cross the threshold, look for my dear, naughty little sweetheart. He is asleep in his half of our his-and-her La-Z-Boy couch, his head drooping toward the arm rest. His computer lies closed on his lap. I have known him since I was seventeen and he nineteen; we met in physics class. When he was a baby, his mother used to lick his hair into a curl on his forehead. I know what he will say, voice blurry with tenderness, when I tell him about the statistically meaningful downward migration of my IQ on the bell curve: “A table, a meat pie, a glass of wine, a hand to hold: what else does a man need to be happy?”
“I let myself down gently, lever up the footrest, spoon up beside him. His shoulder pushes up a wave of his mother’s crotcheted blanket, and that is where I rest my head.
“Thula thul, thula baba,
Morevroeg kom Daddy troos.
Thula thul, thula sana.
Morevroeg, kom Mamma terug.”