Dementia Field Notes: How shallow lies the anger in my bosom

Why did the arrival of this package at our front door make me so angry?

Because of what it looked like on the outside, I was angry enough not to want to open the box.

These were my runaway THOUGHTS when I saw the images and words printed on it:

Oh no, someone is sending me an activity toy. Vehicles I have to cut out so I can slot the accompanying characters in them. Or maybe the illustrations are just a “prize” to go with whatever was inside: one of those puzzles or toys that are supposed to improve my dementia brain by keeping my anxiety down and providing neurological stimulation?

Puzzle toy to help relieve that anxiety of severe dementia

Montessori Busy Board

Or maybe one of those fidget objects to relieve my anxiety like a senior fidget cube ?

While I have received all kinds of advice of how to slow down, reverse, or cure my dementia, no-one has ever suggested that I use toys designed for people with advanced dementia keep to their hands busy. I am happy that such toys exist to reduce the stress and boredom of people with advanced dementia. I have a friend in Canada, Ingrid, who’d been the best caretaker anyone could ever hope for to her mother, Edith (a creative and otherwise remarkable woman), who had Alzheimer’s.  Ingrid sewed busy-hands cuddle toys for Edith before you could buy them: muffs or other soft objects that consisted of various textures and colors, and included small activity objects. They helped to bring her mother’s anxiety down, in the same way that the toys pictured above do for many people with close-to-end-stage dementia.

Above: My relative Ingrid said, “When I visited my mother [who had advanced dementia], we read the few letters she got from friends and relatives in Germany, we played music, but very little seemed to animate her anymore… To give her some tactile stimulation and to distract her, I made a hand muff with an inside lined on one side with velvet and silk on the other, with all manner of trinkets attached.”

Above: One of the hand muffs Ingrid made for her mother sported a stuffed toy bird that plays a genuine recorded bird call.

Above: Ingrid made, a “jean shorts” confection with tactually and auditory stimulating objects in the pockets—check out that whoopee cushion! As Edith’s dementia became worse, Ingrid’s tactile toys were the only “play” objects that her mother still seemed to recognize and want near her person. Edith died this past spring, with her hospice’s night nurse playing guitar and singing for her, and Ingrid touching and holding her.

With the BOX STILL UNOPENED, I googled the company that makes the toys on the box: Noggin makes computer learning games for children. Science shows that educational  screen games in moderation are fine for children, as long as they aren’t ignoring all other aspects of life. As I read on, though, I found out Noggin had also jumped on the bandwagon of companies such as Lumosity that claim their products can prevent, slow down, reverse, or cure dementia: SuperNoggin is “a brain fitness program designed to maintain and even improve cognitive functions in adults, including those with normal aging memory problems (“senior moments”). Elements of the program have been identified as Alzheimer’s prevention strategies.” This discovery amped up my anger even higher. I have long followed scientific reports showing that the claims of this billion dollar plus industry are false: the article “Do Brain Training Games Actually Do Anything?” concludes that the skills for which the programs train older brains do not translate to the real world. Scientists concluded  that “if you want to improve your performance on a task that’s important to you, practice that task. Playing brain games may only make you better at playing brain games.” As a result of such studies, the Federal Trade Commission (FTC) fined Lumosity to the tune of $2 million for “false advertising” in 2016.

 Niki de Saint Phalle, Dragon/Monster (1996)

My runaway  thoughts caused my anger to reach monstrous proportions. I felt extremely upset, anxious, and unsettled. I have come to recognize my angry and anxious states and as soon as I realize I’m in one, I have to get out of it as fast as possible. It eats my energy and sense of self. Time for a self-intervention: fortunately I was  at home alone.  I can calm my agitation through pacing inside our apartment while listening to my audiobook, walking outside when it is not too hot, or just sitting in the La-Z-Girl half of our La-Z-Boy couch while listening to an audiobook. (Knitting works too, but not when I was this upset.) I chose sitting down with my audiobook.

Niki de Saint Phalle, The Serpent Tree (1970). The image featured at the start of this post is a detail of this drawing.

My anger had tapped my energy so much that I fell asleep in my chair within minutes of sitting down, my audiobook continuing to play a chapter or two into my unhearing ears. I woke up feeling much better. So much better that I understood my earlier paranoia was overly dramatic and far exceeded any normal reaction to an image on a box.

I knew I had to open the box to see if Schrödinger’s cat was dead or alive. As soon as I did so, it came to light that the content had nothing to do with the outside of the box.( Later the same day, Peter, too, received a similar Noggin box that contained an item he’d ordered.) I had wound myself up about an Amazon advertising campaign. I’d been fighting non-existent dragons. But they’d been very real in my head. Inside my box was a book I’d ordered: What Is Now Known Was Once Only Imagined, Nicole Rudick’s biography of Niki de Saint Phalle (1930-2002), a French-American sculptor, painter, filmmaker, and author of colorful hand-illustrated books. On the cover, Rudick calls the book an “(auto)biography” because it consists of nothing but the artist’s own words and images.

That the package contained What Is Now Known Was Once Only Imagined turned out to be particularly apropos to my anger: Niki de Saint Phalle’s art was, to a great measure, a response to her own life-pervading anger and pain that had a real cause: her father sexually molested her when she was 11 years old.

Niki de Saint Phalle, Untitled, 1961

Starting in the early 1960s, De Phalle started to express her anger in performance pieces that consisted of fraught and haunted figures (matriarchal and patriarchal) that carried centuries’ worth of unhappy obligation and limitations by gender and other societal roles—figures that she embedded with pockets of paint in many colors, painted white, and used as a target that she shot at with a rifle.

Niki de Saint Phalle wearing her “Shooting Suit” for a 1962 “Shooting Action” in Los Angeles. Pointing a rifle at her work, she would shoot at the canvases, which released the colors she had loaded inside the work as a symbolic conflation of her personal rage and her expanded concept of performative painting. “The weight of that unspoken truth was terrible,” de Saint Phalle said, “Incest must be spoken about openly so that victims are no longer afraid and can express themselves” (“Sculptor finally exorcises her rapist father”).

In 1964, de Sanit Phalle started to draw, paint, and sculpt her so-called Nana figures. “Nana” is French slang women, more or less the equivalent for “girls” or “chicks.” Similar to words such as “queer” or the n-word, it originated as a derogatory epithet. Like other formerly unacceptable word, “Chicks” and “girls” have become acceptable in certain circumstances when used by women themselves, as in “chic lit,” “chick flicks,” “Dixie Chicks,” or “Go Girl.” Niki de Saint Phalle first used nana in relation to a series of empowered female figures that she called Les Nanas au Pouvoir, or Girls in Power. However, De Phalle’s initial figures took the form of monstrous archetypes—Brides, Mothers, or Goddesses—made from amalgamations of plastic toys, fake flowers, dismembered baby dolls, and more.

 White Birth or Ghea. “Ghea” is an Indonesian version of the Greek “Gaia,” the Earth Mother that is associated with the mothering, caring role of women. De Saint Phalle rejects this revered, expected, and compulsory role as one of the very few options that society imposes on women.

White Birth or Ghea. “Ghea” is an Indonesian version of the Greek “Gaia,” the Earth Mother that is associated with the mothering, caring role of women. De Saint Phalle rejects this revered, expected, and compulsory role as one of the very few options that society imposes on women.

Pink Birth, a different figure from the white one above, in which the colors pocketed inside it had been released through de Phalle’s shooting it with a rifle.

Niki de Saint Phalle, Kennedy-Khruschchev. In 1962, De Saint Phalle started the frieze that she would then paint white. She completed it with a shoot-out in June 1963. In retrospect, she thought, it seemed an uncanny premonition of the assassination of President Kennedy in November that year.

The shooting paintings helped greatly in de Saint Phalle’s exorcism of the anger and pain caused by her father. Her drawings, paintings, and sculptures started taking on  a different mode: in 1964, the radically joyful Nana was born. Saint Phalle explained this dramatic shift in her life and her work: “After the shooting paintings the anger was gone, but pain remained, then the pain left and I found myself in the studio, making joyous creatures to the glory of women.” From then on, the Nanas became positive counterexamples of the oppressed reality of most women. For example, in 1965 in France women were not allowed to open a bank account or apply for a job without the approval of their husbands. This was still the case in relation to opening a shop account in South Africa in the early 1970, just after Peter and I got married.

Niki de Saint Phalle, Nana, 1971.

Niki de Saint Phalle, Tarot Garden, Tuscany, Italy. Opened in 1998

In 1983, Niki de Saint Phalle moved into the huge sculpture The Empress, designed in the form of a sphinx, which served as her studio and home for seven years during a period of intense work to complete the Tarot Garden. She used ceramics in addition to mirrors and glass for the sculptures.

To get back to the box: 1) It took me to about this point in the constructing of my post to figure out why I was so angry: for months, years before the arrival of the box, I have become aware that I will probably never succeed in conveying my most important insight: if you know one person with dementia or have read one case study of a person of dementia, you still know only what that person’s dementia is like. Although diagnosed by neurologists as having the same disease, each person’s dementia takes its own path.  My paranoia about the box grew from the false presupposition I detect among people I talk to or read in advice columns about dementia: that everyone with the disease should appear and look like their grandmother or neighbor or aunt who is at the end stage of dementia. That every dementer should not be able to talk or walk around or write. If they do, they cannot possibly really have dementia. I am, however, in touch—via their blogs or videos or personal communication—with a number of people with dementias that are far more advanced than mine: they may have full-time caretakers to help with their daily activities of living, can barely walk, can no longer socialize, or have difficulty speaking at all, yet they still take photos or write accounts of their daily doings and feelings or make videos and post them. They look as if the only activity they still might be capable of would be playing with the comfort toys of late-stage dementia. They are ore than that. They still have rich inner lives that some of them can still project outwards. Dementia does not necessarily shut someone off right at the time of their diagnosis. In retrospect, I believe that the box triggered my subconscious knowledge and fear that my dementia is catching up to the ultimately correct image that so many people have of the disease: a drooly person clutching her stress-reducing toy while retreating into the thought-stripped silence of her mind.

Niki de Saint Phalle, Psychedelic Brain Dream

2), I am by no means equating my anger and anxiety to the rage and pain of Niki de Saint Phalle after her father rape her when she was 11 years old. For 58 years, she was unable to rid herself of the injury to the extent that she did no longer frequently suffer from it. Only when her father died in 1999 did she feel liberated from the effects of his abuse. Three years later she died. My half-hour of distress was built on “events” that took place only in my head and did not come from a long-suffered psychic scar. While I have dwelled on my anger and anxiety during the 10 days or so that it took me to write this post, it did not mark me with the pain of a betrayal by someone I loved.  It has, however left  a bruise: I will keep on having imagined perceptions that people/companies misunderstand me and are against me in some way.  My periods of anxiety-to-the-point-of-exhaustion are getting more frequent. If I stay alive long enough to let my dementia develop to the final stages, I would probably—like almost all of my dementia buddies—come to a point when I no longer trust the people I love the most in the world. I would believe that Peter, too, is out to harm me. This thought fills me with pain and anxiety.

Niki de Saint Phalle, The Red Dragon, 1964

What still wards off my monsters is that I still have more hours each day of living peacefully rather than being wracked with anxiety. I also have many moments of joy every day. And I have Peter, who has loved me for 55 years and children and grandchildren who have loved me (most of the time!) since they were born. Friends who have loved me since I met them shortly after we immigrated to Salt Lake City. I have you, my blog readers, who support and encourage me. I have a safe and comfortable space to which I can retreat when the anger and anxiety overwhelms me. I can still get things out of my system by writing, even if it takes me days or weeks. I have access to art on the internet and, now and then, in person. I’m very lucky and very grateful. On good days I fantasize that the thought-stripped silence of my mind will resemble the psychedelic haven of Niki de Saint Phalle’s bedroom in her Empress house:

Niki de Saint Phalle’s bedroom in the Empress house