In Las Vegas my dementia wins, I lose

Lonely Girl Room 315, detail. Sculpture from Constance McBride’s The Lonely Girls project (2011-2014).

My frequent failures in what used to be easy daily tasks constantly remind me that my days of still having some life-of-the-mind and relative independence are running out. No wonder, then, that I was deeply moved by Constant McBride’s Lonely Girls sculpture collection. The first sculpture in this series, which constitutes this post’s featured image, portrays the artist’s mother after she had been diagnosed with Alzheimer’s and moved to an assistant living facility. What started as a portrait of her mother became a collection of portraits of the other women she lived with in the care center, each of whom had some form of dementia. Each of them had outlived her spouse or partner—and most of their friends. Like many contemporary families with children and two jobs, their children weren’t in a position to take care of them. They were the Lonely. “Once vibrant and accomplished women were reduced to mere shells of their former selves.”

The Lonely Girls, Constant McBride.

Any of the” lonely girls” in the image above, tangled wires popping from their cranial cavities, are apt images of what I feel like  a dozen times a day when I botch a formerly easy task essential to my independence, which means I require Peter’s help for a clean-up (like a broken glass) or a do-over. To me, McBrides’ choice of jack-jumped-out-of-the-box electrical wiring as a metaphor for kinked and snarled dementia-brain pathways is brilliant: the jumbled, disconnected wires reflect my feelings of being broken and useless in daily life. And I know I’m progressively appearing more damaged to observers’ eyes.

Lonely Girl Room 6018, Constance McBride

These images are particularly a propos to a distressing, albeit self-inflicted, episode that occurred in Las Vegas during our most recent visit. As my long-term friends—and that includes many of you, my readers—know only too well, Las Vegas has in my younger years struck me, in the words of Scott Cunningham, as

(from  “16 Haiku About Las Vegas“).

Yet, now I consider the Shallow City as the best place for both Peter and I to have the kind of getaway that restores us. Here is the reason why: my and Peter’s far-afield trips to South Africa and Europe proved to be too stressful: the pleasure of seeing old friends and new places was no longer worth the anxiety, confusion, and exhaustion. Even visiting friends in other states no longer worked—I was constantly too tired to be a good guest: I had to sleep until noon in order to have a few hours of pleasant conversation, and even so could not focus on the topics or activities at hand. During a sight-seeing outing, I slowed everyone down and dampened their enjoyment (though they kindly denied that). Peter on his own was left to be the functional good guest. As far as the great outdoors, of which Utah offers in so much abundance, I can no longer do the walking ON MY OWN that used to be the staple of my love of the outdoors when I was a child on our farm in South Africa. By contrast, our twice-a-year visits to Las Vegas as soon as the temperatures there hovered between 60 and 90 degrees, which happened shortly after my birthday in September and our wedding anniversary in March, are the kind of getaway where Peter and I both have the opportunity to each independently do our own thing. This relieves him of his caretaking and gives me some autonomy.

On our way to Las Vegas, second week of October 2022

So, why is Las Vegas our desired destination? Let me count the ways: 1), It’s just over an hour’s plane ride away from Salt Lake City; 2) as long as we stay at the seen-better-days Treasure Island hotel, I can walk independently, ON MY OWN, to the neighboring hotels and the big Fashion Show Mall WITHOUT HAVING TO CROSS A SINGLE ROAD and therefore without the need for Peter’s constant (and, if there is no other way, much appreciated!) help: as long as I stay on one of the walkways with a direct sightline to either our hotel or the Fashion Show Mall, I can always find my way back “home”; 3), while I succumb to my wanderlust within my designated territory, Peter does things that relax him, such as gambling or sitting in a coffee shop reading/doing something fun on his computer (all the while keeping an eye on me via GPS); 4), since Peter won a large sum of money at Treasure Island many years ago, they somehow still send us offers for free nights, which at least halves the cost of our accommodation; 5) Staying there gives me the opportunity walk around wherever my eyes direct me: I enjoy the colors and textures around me, listen to the wild white noise of commerce and “fun” or shut out the sound with my audiobook; or I just think my own thoughts; 6), I can go back to the hotel whenever I want to, to read or nap, without Peter having to provide transportation or an escort. 7) All of this enables me to follow my own inner time clock, to come and go as I please. The same goes for Peter. We frequently meet for coffee or a meal or to show each other something interesting that we have come across. As a change from my constant bothering of Peter at home to help with computer or other tasks, or to take me somewhere, we each find our individual activities extremely enjoyable and restorative.

Lovers, porcelain and ceramic, 10″ high. Shelley Buonaiuto lives and works in Fayetteville, Arkansas, where she sculpts in porcelain, ceramics, resin, and bronze. Her sculptures range from the size of a hand span to 36 inches. She hand-paints them after firing.

This time, on our first full day, Tuesday, I saw a vest that I liked at one of the 5 big department stores in the mall and bought it. By then I needed a break, so I called Peter to meet me for a take-away meal to have in our hotel room so I could put up my feet. When I wanted to pay, I discovered that I had lost my wallet. While Peter got the food, I immediately went back to the nearby store, but there was no sign of my wallet either at the counter, the lost and found, or the security office. When I got back with Peter, he decided that we should call my bank right there in the mall before any damage was done: he had by then checked my account and verified that there were no new charges on it. He helped me call the bank (an onerous process in which I cannot remember my birthday or any other identifying information because I’m pretty stressed (see the opening scene in The Gerda That Remains) and cancel the cards, three of them—although I am supposed to (my own rule) carry only one credit card and one debit card in my wallet, on that day I mistakenly happened to have a third card… Fortunately my Utah Identity card, the document I carry since I don’t have a driver’s license any more, was still in the side pocked of the travel bag I had with me on the plane, so I did not lose that. But I also lost my Medicare and Dental insurance cards, with which we decided to deal when we got back home. I kept my cool until we’d made our way back to the hotel, then just fell apart in tears. I had lost another credit card only a month or two before Vegas. It became clear to me that I was approaching the time when I should not carry money or other valuables like my phone or house keys any more. It was another step toward my even greater dependence on Peter to take care of financial stuff. A huge blow to my already battered identity.

One of the things I have most appreciated over the years about Peter is that he has always taken in stride any material damage I have visited upon a number of our valuable possessions during our lifetime together. During our third or fourth year of marriage (1973-4), I caused our only car to be totaled because I did not “see” a red traffic light at an intersection and drove straight through. Very fortunately, neither I nor the man in the other car or HIS TWO PRE-SCHOOL CHILDREN were hurt, though the kids cried forlornly. Both cars, however, were total losses. The other car ended up across the road. There were no cell phones in those days, but someone called the police and they called Peter at work and someone drove him to the accident site where everybody was still gathered. By then I’d given my statement and insurance information, and was shakily watching the tow trucks arrive. When Peter got out of his ride, he came up to me, verified that I was fine, and hugged me. He noticed the car across the road. Its back wheels had fallen off and were lying flat on either side like Dumbo ears. He roared with laughter, I laugh-cried along.

A bronze laughing bronze Buddha at the north entrance of Aria Resort and Casino in Las Vegas. According to Chinese tradition, “laughing Buddhas” are representations of an eccentric Chinese Zen monk who lived during the later Liang dynasty (907-923 AD) of China. Some Buddhist traditions consider him as the actual Siddharta Gautama, who started out as a man (not a god) who lived 2,600 years ago and attained Buddhahood through his own efforts and insight, that is, without a teacher. He is traditionally depicted as an obese, bald man wearing a robe and wearing or otherwise carrying prayer beads. He was know as “Budai” after the cloth sack in which he carried his few possessions. Given that he was poor but content, this sculpture is a rather ironic emblem of happiness in a city that promises contentment through winning the jackpot…

For the day after my car crash, we had a train trip booked to the Kalahari to visit my grandparents. I felt too guilty to go, but Peter  insisted that we not miss our vacation. My brother Carel, in his twenties was to go along. We went, of course. Those were the days when the South African Railways ran trains almost as fancy as the Orient Express, but financially accessible to white middle-class people like us. The compartments we lined with mahogany wood, the seats covered in dark green leather. Cylindrical bolsters saved as arm- or head rests during the day. We had our own little hand-wash basin inside. While we had a three-course meal in the in the dining compartment—white tablecloths, silverware, wine glasses—the staff prepared our beds with bottom and top sheets, the works. My brother shared our compartment, taking a top bunk, while Peter and I had the lower ones. While we were still up reading and talking, I started weeping over the accident and did not stop until bedtime. It took me the rest of the 20 hr trip to (more-or-less) accept my disastrous mistake and get back to being my (then) usually calm self.

  

South African Railways (S.A.R.) passenger compartments during the 1970s. They were made of—and the interior beautifully lined and finished with—mahogony wood. The underside of the fold-out sleeper bunks displayed photos of stations along the wide network of train routes that crisscrossed South Africa; when folded back during the day, the photos served as decorative elements above the lower bunks. Peter’s father, Dudley Newton Saunders, a carpenter at the Railways, helped build these sleeper cars, except during WW II when his workshop was commissioned to make bomb boxes for the war. Thanks to being flagged by his dad that SAR were opening a computer department, Peter applied for a job there after teaching science at a high school for 6 months after graduating from the University of Pretoria. That was his first computer job in a life-long career in the field.

After my wallet loss in Las Vegas, by contrast to the car-crash-guilt aftermath, it was only a matter of an hour or two (including a nap) before I was calm enough to be out wandering the nearby hotels and mall agains, armed with Peter’s ApplePay that he quickly installed on my phone so I could at least buy my own coffee. How soon she without short-term memory forget, how callous can she be! A characteristic of my phase of dementia is that bad feelings, even toward yourself, are easily forgotten. As I write this three weeks after we left for Las Vegas, I remember the incident of losing my wallet, but I no longer relive the self-annihilating emotion that I felt in its aftermath. I recall it, but my shame and pain has disappeared down the rabbit hole of my mind.

Elissa Farrow Savage, she had a lot on her mind

My loss or destruction of material objects—and subsequent forgetting of the related emotions—is paralleled by a larger loss: that of my former deep desire to connect with people. In the past, really, almost any people. I used to love just talking to people, hearing about their lives, wondering during even short, one-time interactions what made them tick. With people I liked or loved, I experienced connections with deep emotions, feelings that foretold seemingly life-long effortless kinship. Now, though, my capacity for being with people has shrunk to just my close blood- and made-in-America family. Even with them, my brain just gets overwhelmed and tired after a short while and I just want to go home and be alone to digest and absorb the time I’d spent with them. The emotions of love that my brain experienced when I interacted with people used caused my brain to release endorphins that makes a person feel secure and happy. These emotions have now been blunted. Interactions with an ever-growing number of people drain me more than refuel me as it used to. Peter is the only one with whom I can be all day long. We don’t necessarily interact all the time, of course, but I just love knowing he’s nearby. After 56 years of loving him, he is an extension of myself. Sometimes I have to be away from him too, for his sake as much as my own. I get exhausted by that part of myself that NEEDS him all the time; he gets exhausted (though he doesn’t admit it) by always being “on” for me and never attending to his own self. Being alone—whether for a nap at home or hours of wandering in a getting-lost-proof environment—enables me to gather the remaining pieces of my non-Peter self until I have a vestige of self to give to him rather than just take and take huge chunks of his.

I have not been able to find where these two side-by-side Buddhas are located or who to credit for the image. The photographer’s central placing of the distance between the two figures, the black area between them, intrigues me. Doesn’t Buddhism say that distance from other people, from material possessions, from thoughts, from the easy distractions of the world—isn’t this what is required to attain the constant calm contentment of a Buddha?

In Letters to a Young Poet, Rainer Marie Rilke recognizes distance as an essential element of life-long affection: “Once the realization is accepted that even between the closest human beings infinite distances continue, a wonderful living side-by-side can grow, if they succeed in loving the distance between them that makes it possible for each to see the other whole against the sky.” While I am extremely grateful to have experienced a lifetime of “side-by-side grow[ing],” I also know that the kind of separation I now seek is a diseased version of the Rilkean distance that engenders, in the words of John Keats, “the holiness of the heart’s affections.” The distance that my dementia wants is a retreat into my inner world that wants to exclude even those who love me most.

Per the brain of a late-stage dementer, the title of this 2017 Tommy Hart painting Humanity is a Waste of Time is true. I feel that my growing need to retreat from people will suggest to those I love that I, too, think it is true. This is totally contrary what I want. It is the opposite of what I have regarded as one of the highest ethical goals of my life. But my deteriorating emotional capacity will make it true for me too. It won’t hurt me, but it will be very hard for those who love me.

Even though I often use my blog to work through—and thereby come to a greater understanding of—the upsetting things that dementia visits upon me and everyone who loves me, I also want to leave a sense that life is still mostly wonderful and that I do still at times enjoy being with people. Just tonight, we had a lovely family gathering at Newton and Cheryl’s house to celebrate Newton’s birthday. Sadly Marissa had to miss it because she (and several co-workers) got Covid on a business trip. (She’s feeling a lot better, but has lost her sense of smell. Still testing positive, so she’s staying in her upstairs cave while Adam and Dante are bach-ing it downstairs—for the second week, including the time she was away for her San Francisco trip…)

  

Dante and Kanye with Newton as he reads a card; Cheryl lighting a candle on a small piece of cake for Newton. (Though we no longer wear masks with our family, we still guard against Covid by keeping other people’s breath off communal food…) Dante and I had a wonderful time helping Aliya make a South African dessert for a school project while everyone else played poker.

Also, the loss of my stuff in Las Vegas has set Peter and me off on an interesting project: how many things can I tie to my body, or at least to my handbag, to make material losses a less regular part of my life? Peter is helping me research and acquire chains, retractable tethers, lanyards, and whatever else might keep my stuff more firmly connected to my physical body. (Notice how I have now made even more work for Peter….)

 

What’s in my Bag?

I’ll end with a Brian Andreas print that my made-in-America sister-friends gave to me many years ago, and which now hangs in my bathroom, together with other meditations on love, relationships, and being alive, as well as photos that I love. At the time they gave it to me, during the 1990s, I—and they—read it metaphorically, that is, as a funny, gracious, whimsical characterization of the kind of person we’d all like to be: someone who interacts with others and the world in ways that leave a positive mark on them. The author and sketcher/painter calls them “short stories”:

She let pieces of/ her life behind her/ everywhere/ she/went./

It’s easier to feel the/ sunlight without them,/ she said.

Oddly, even if one takes the lines as literally referring to the pieces of my mind that I now leave behind me, the last line is still true: sadly, even though it is wanna-be empathetic and caring parts that I leave behind, it still makes it easier “to feel the/sunlight.” The unexpected survival of the truth makes me smile!