Family

Who Am I Wearing?

Fashion adventures, and misadventures, while living with dementia.

Gerda Saunders.

Photo illustration by Lisa Larson-Walker. Photo by Peter Saunders.

On her 61st birthday in 2010, Gerda Saunders was diagnosed with microvascular disease, a leading cause of dementia. She first wrote about her dementia in the George Review, in an essay later republished in Slate as “My Dementia.” This essay is adapted from her book, Memory’s Last Breath: Field Notes on My Dementia, to be published this month by Hachette Books.

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On Aug. 19, 2013—a day so warm that the notion of fall seemed unimaginable—I took the bus downtown to City Creek Center. It is adjacent to the Mormon church’s world headquarters at Temple Square, spans three blocks in the heart of downtown, and incorporates upscale stores as well as residential buildings. A river runs through it, albeit a simulated one. It boasts two waterfalls, three fountains, and a number of trout pools. The stores are connected by foliage-lined walkways and a skyway across Main Street. A retractable roof opens up to the springtide; in summer and winter, it unfurls into a glass-paneled cathedral ceiling that alternately cocoons air-conditioned coolness or furnace-rendered warmth.

My shopping expedition that day to City Creek Center was not geared toward gawking at its pleasing architectural features or supporting the local economy, other than maybe through the purchase of a cup of coffee. My hope was rather to attain a state of relaxed mindfulness that had eluded me for several weeks of being bogged in a malaise bordering on depression.

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The endorphin-upping exercise I’d had in mind for my mall outing combined three of my usually successful stimuli: (1) do something you’re scared of, in this case take the bus, a formerly simple task I now dreaded after lately botching it once or twice, (2) engage in a physical activity you like (walk), and (3) stimulate the senses you frequently override with too much thinking (imbibe the murmur of the brook and redolence of wet rocks and plants; ingest the colors and compositions of the store displays).

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Dementia Field Notes

8-6-2013

I got dressed all the way to my shoes and earrings before I noticed that I had not put on a crucial piece of underwear.

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On this Monday afternoon, no amount of nature or commerce succeeded in penetrating my slump. While I traversed the walkways, neither fish ponds nor fountains set my thoughts in free flow; inside the stores, neither fashions nor fads took me to a place beyond words. Unless I were willing to admit defeat and catch the bus home, I would have to exert tougher pressure on those ornery anodyne dispensers. So I devised a plan B: Search for a more definite goal. Stage an opportunity for rapid gratification. Go on a specific quest rather than allowing “God’s water to flow across God’s acre,” as an Afrikaans expression has it.

The goal I settled on was to find something “grown-up” to wear in the mall’s anchor stores, Nordstrom and Macy’s. Something other than the riotously colorful clothing rainbowing my closet. My task did not include having to buy anything. I merely had to locate an object outside the range of my usual eccentric taste, an outfit in which I could blend in a room of smartly dressed people and that I would love to own. For the next two hours, I would be free from price constraints. Also, I would ignore dry-clean-only considerations or such practicalities as whether my life in Utah involved many rooms of smartly dressed people.

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Dementia Field Notes

9-23-2013

Last week I was shopping in Nordstrom and decided to try on
a gorgeous gray-with-a-lilac-cast sweater. Since Peter was about to pick me up, I thought I would just try it on in front of one of 
the store mirrors rather than go into a dressing room. I found a mirror, put all my stuff down, and when I next looked at myself in the mirror with proper awareness, I saw that I had taken off my shirtdress and was standing there in my underwear from the waist up. I quickly put my shirtdress on again and then tried the sweater over it, as I had originally intended. I was shaken. I don’t think anyone noticed. I could have been arrested for indecent exposure!

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An hour or so into my quest, nothing had jumped out at me. Our state’s designer market, at least as interpreted by Nordstrom, appeared to be geared toward classical elegance in the manner of, say, Isabella Rossellini instead of creative dressers like Paloma Picasso.

In Nordstrom, the most promising of my two options, my pace petered into a desultory amble when I finally laid my eyes on an item I desired: a Marc by Marc Jacobs dress in “Persian purple,” with a design of saucer-size red and white tulips coupled with liliaceous leaves in the same colors.

A spurt of endorphins gave my mood a boost. With a lift in my step, I crossed the sky bridge to try my luck at Macy’s as well. Half an hour later, I’d had no luck in the designer or any other clothing section, but I was determined to not let go of the perk the Persian purple dress had given me. I decided to have a quick look at the jewelry downstairs on my way out. My bus home was due soon.

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One of my favorite pieces of jewelry is a memento mori (“remember that you will die”) pendant that I wear on a chain together with a same-length string of pearls. The pendant, made by American designer Betsey Johnson—known for her over-the-top and embellished work and her performance of a cartwheel at her fashion shows—is a 5-inch-long by 1 1⁄2-inch-wide white-enameled and bejeweled skeleton that declares itself as female with a red-yellow-orange fringy skirt and a hat made out of multicolored enameled fruit and rhinestones in primary colors. Her heart is represented with a glittering costume ruby fixed to the left of her sternum so that it sits lightly atop one of her ribs.

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The other day when I was wearing the pendant, the skeleton’s sternum and heart clicked out of the clasps that attach them to the rest of her. Fortunately, jewelry is among the wide variety of items that Peter alters and repairs for me. I put the broken-hearted skeleton on Peter’s red toolbox in his study, meaning to ask him to fix it, but then forgot. The next morning, I found my skeleton-girl on the kitchen counter, still in two parts, and neatly laid out in a paper coffin that Peter had made for her—complete with a headstone enjoining her to RIP. After we had hooted about his joke, he fixed her heart, as he always does mine.

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Macy’s designer section is on the second floor, the jewelry at street level. Even though I was in a hurry, I glanced about for stairs rather than opting for the escalator—I had made a habit of expending energy as part of my daily routine rather than counting on going to the gym, which I skipped at every excuse. Amid the many red exit signs on the floor, I spotted a green one at the shoe section. I wandered over, opened the door, and entered the stairwell. Once I reached the ground floor, I saw that I had arrived at a street door rather than one I had expected would let me directly back into the store. Uttering an expletive, I pushed the release bar. It did not budge. I tried a few more times, pushing harder with my hands and then resorted to a thrust with my hip. All in vain.

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I had by now wasted the time I’d had left for the jewelry, so I took the stairs back up to reenter the store by the door through which I had landed in the stairwell. Back at the second store landing, my annoyance about missing out on the jewelry changed to panic: there was no door handle. The door through which I had exited was a fire door—once you were in the stairwell you could not go back in.

This place has only three exits, Sir: Madness, and Death.

Dementia Field Notes

3-2-2014

I am trying to change from my winter to my spring wardrobe. I have been working on this for several days, but just can’t seem to get my closet organized. When I try to arrange my clothes
in the same logical order as I have always done—hanging the major components of an outfit side-by-side—it does not seem to work anymore because there are a few tops and long T-shirts I wear under short tops that I mix and match in different ways for different outfits. In the olden days it didn’t matter, because I could remember the different combinations. I have lately found that I get very confused if I start mixing outfits around: I forget some possibilities—even my favorites—for weeks on end. So the decision I had to make was: outfits together or pants, shirts, skirts, etc. grouped together “each according to their kind” like the animals in Noah’s ark. I have tried working on it today, but as I tried to implement the “each according to their kind” option,

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I knew that on a daily basis I would never be able to remember what to put together with what to create the mixes I really love.
I had earlier written down some winter outfits in my journal to remember them, but that seems impossibly complicated to do for all my clothes.

I ran up the stairs to the third floor, just in case that door was different. It was not. I went down again to the landing where I had earlier entered the stairwell and sat down on the steps. I noticed how hot it was. Sweat was beading on my forehead and starting to drip through my eyebrows. The exit into which I had bumbled was apparently in an outside corner of the store and both of the outside walls must have baked in the sun all day.

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I felt dehydrated, craved water. I decided to put my bodily discomforts from my mind. I needed every bit of thinking energy to figure my way out. A serenity came over me. I stepped through my options:

1. Bang on the door and shout. Failure. The door is solid metal and the dull sound from my banging fists does not carry. 


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2. Lie down on the floor to shout through the quarter-inch crack where the door meets the floor. Con, floor covered in oily-looking grime. Worse, if someone suddenly opened the door, it would smash into my face. Too dangerous to try. 


3. Phone mall security. Not possible—I don’t have a smartphone (too complex to operate with my memory) to Google the number. 


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4. Call Peter. Con, one of my afternoon’s goals was to spare him the chauffeuring that he has been doing since I gave up driving. Try to avoid this one. 


5. Marissa and Adam? M takes after me and doesn’t lightly answer her cellphone unless she is away from Dante; A usually answers. Possibility. 


6. Newton or Cheryl? Usually answer, but live a half-hour away. 


7. 911? Seems overly dramatic. 


I opted for calling Peter. “I’m really in trouble,” I said. I told him the story. His response was that he was going to jump in the car and come let me out. I suggested that he instead call the Macy’s office and ask that security rescue me. He ostensibly agreed. I described my location, he phoned, and about five minutes later I received a call from a security guard. He was on his way.

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By the time the guard—a young man named Junior who had the shape of a bodybuilder—found me, I had been in the stairwell for about 20 minutes. I felt lightheaded from the heat and asked for water. I also asked to see the store manager. Junior delivered me to the management office. While I waited for the manager, an apparently second-in-charge administrator, Todd, offered me lots of water and a halfhearted apology. By the time I’d had two bottles of water, Peter walked in. He was very concerned and hugged me several times to make sure I was OK. The store manager, Wendy, showed up, demonstrating solicitude and offering apologies with an HR workshop–honed competence. She sent Todd and Junior to investigate how I got stuck behind an emergency door to the street that was supposed to remain open at all times and listened to my concerns.

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When the investigators returned, their first news was apologetic. Someone had neglected to arm the door, which would have turned the red light red and set off an alarm when I used it. Their next words, though not an accusation, underhandedly turned the blame back on me. There was a warning on the door, they said, informing customers not to use it and stating that an alarm would go off if the door were opened. I could not argue that. I had seen those warnings many times before. Peter and I later checked that it had indeed been in place. In my hurry to see the jewelry, though, I had not noticed it at all.

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I could forgive myself my failure to read the notice. When I had looked for an exit, the large green LED sign above the door had trumped the small black letters of the notice in vying for my attention. The next part of Todd’s account, however, floored me. The street door had not been locked, he said, “You just have to push a bit hard.”

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Dementia Field Notes

3-7-2014

I had an idea of how the “each according to their kind” clothing arrangement could work: I’m going to take my time, put together all the various outfits I can think of, and take photos. So I have launched the huge project of setting out each outfit on
the bed and taking pictures. Peter took me to Walmart to get a mini-photo album to keep the photos together so I could easily consult them. I’ve been taking photos for days now and have printed the daily batches as I go along. This morning I got the last of the photos taken and printed and looked forward to putting the clothes guide together. However, the photos I had printed in daily batches were utterly lost. I could not find them anywhere
in the house. So I printed them again, and now finally have my mnemonic device ready for use.

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Though Peter later told me that he thought their story was a butt-covering ploy, I right away believed it possible that I had not pushed the door hard enough or in the right place. Hadn’t I experienced failures to take note of relevant sensory information for months? Weren’t my Dementia Field Notes blotted with accounts of me not noticing that the toilet lid was closed until I had peed all over it? Or needed Peter’s help to find my radio, which was in its usual place on the kitchen windowsill? I have learned the truth of the idea that one sees with your brain, not your eyes.

As is often the case in situations where different observers have different accounts, the matter of whether the door had actually been secured—against homeless wanderers, entering through the store, looking for shelter?—with a pin that could be pulled out in an emergency by Macy’s cognoscenti (as Peter suspected) or whether it had been just a bit hard to open (as the employees reported and I feared) was never resolved.

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That night I called my friend Kirstin to bewail the ignominy of having been swallowed whole by a stairwell.

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“You poor thing,” she said. “You are trapped in a metaphor.”

My good laugh, coming after the adrenaline-doling drama of the Macy’s lockup, distracted me from my deep blue blahs for a few hours into the night. The fog, which murked my mood again the next morning, only lifted after I gave in and visited my doctor, who adjusted my medication.

For my birthday a month later, Kirstin gave me a Macy’s gift certificate with a drawing on the envelope of me in a locked stairwell. I was not alone. I was companionably surrounded by her and her family. My mind swerved. The vehicle of the metaphor was no longer a barren trap but had metamorphosed into a congenial cocoon, like a station wagon traveling across the country with a family belting out road trip songs all along the way.

With the gift card I bought myself a pair of jeans the color of crushed blueberries. They have skinny legs and an overall fit snugger than what most Utah women my age who aspire to dress well would wear in public. Nothing grown-up about them.

Adapted from Memory’s Last Breath: Field Notes on My Dementia, to be published this month by Hachette Books.

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