The vanished dongle and other more dire losses, or, Why Doña Quixote Abandoned All Hope for a Makeover

Featured image: Wire-mesh reconstruction of the Basilica Siponta—a 6th century christian structure—by Italian sculptor Edoardo Tresoldi.

The view of the Venetian hotel and its Grande Canal Shoppes from our hotel window. In photo #1, the Venetian is the building behind the cranes on its roof. Photo #2 is an enlargement of the bottom right corner of photo #1 and shows the Walgreens sign at street level and “GRAND CANAL SHOPPES” on the second level; below that, and entry into the shopping area. Piece of (cheese?)cake.

I had a pleasant walk along the the indoor part of the canal, watching the gondolas glide past the shops and under the bridges.Then, though I knew the designer stores were far too expensive for me to buy anything, I wandered through them, shopping with my eyes, feeling the stunning fabric textures and checking the prices just because. In some stores, however—Burberry, for example—the clothes don’t have prices on them. The assumption, apparently, is that if you’re there for the clothing you don’t care how much it costs anyway. When a salesperson saw me looking for a price ticket on a lovely cape, he came over, scanned a code for the secret price, and then revealed that it was $1,050. Despite the snobbishness implied by the hidden prices, I love seeing and touching these beautifully designed and carefully made items.

Despite Peter’s help and our careful planning before setting out for the Shoppes, I got very lost after about an hour of looking at the merchandise. I could no longer see the canal, nor find my way back to it. I called Peter to tell him I did not know how to get to our meeting point. We decided that—like when I’d been lost before—to follow the same plan as we’d taught our children when they were toddlers for when they might be separated from us in a busy store or on a sidewalk: stay put and we would find you. Given the invention of the cell phone since our kids’ toddler time, I was  able let him know that I had somehow ended up in the casino.  I gave him landmarks to look out for: “RESTROOMS”  in large letters above the horizon line of the tallest gambling machines, as well as “GRAND LUX CAFE,” a restaurant marked in huge pink letters way up, close to the casino ceiling. Fortunately, due to my moods that nowadays hardly ever matched my situation, I was not in any panic. I took the opportunity to pace from the cafe to the restrooms to increase the steps on my step counter. On his end, Peter set out on his rescue mission to recover the lost entity that was me.

This is where I was waiting for Peter to find me: by the pink letters

He found the electronic disk tracker that he’d given me to keep in my handbag for an occasion just like this. This works even if I might have lost my phone. However, this tracker had trouble finding me in the casino because of all their electronic gear. Since, this time, I was not missing my phone, he tracked me by GPS, but for the same reason it ws not working accurately. After about twenty minutes and several to and fro calls, he told me that he had reached the Grand Lux Cafe and could also see the restrooms, but that he could not see me. I said I would stand right at the entrance to the restaurant and positioned myself there. I asked him if he could see the pink restaurant sign. He said he could see it, but it was red. Since he was somewhat color blind and often asked me to help find a shirt and pants that go well together, we just laughed since the same color-thing had happend just the previous day. When he had gone all the way to the restaurant entrance, though, he still maintained that I wasn’t there.

Lost Vegas, Matt Kaye

Peter asked me for another landmark. I told him I could see the PALAZZO THEATER. To Peter with the intact brain, of course it immediately revealed that I had somehow ended up in the Palazzo casino, and not the Venetian as I had assumed. I would be blissfully unaware of my the implication of the new landmark until he’d later explained it. While trying to find his way to the Palazzo, Peter came across a cop with a dog. He asked the cop if his dog could possible help him find his wife. The dog turned to out be a sniffer, but of drugs rather than people. Nevertheless, officer Friendly listened to Peter ‘s dilemma and gave him directions. After another fifteen minutes or so, Peter called to say he could see the Grand Lux Cafe letters. He soon found me under them.

This is where the landmark I’d first given Peter on the phone had led him: the red letters in the Venetian. I, however, had unwittingly spent my lost time in the Palazzo, where the letters were pink.

He found me almost an hour after I had first called him.  The minute I saw him, the needle of my unpredictable emotions immediately swung to maximum stress. I felt agitated and completely empty at the same time. I was trembling, I could barely stand.

I told Peter I needed coffee, sugar, something. He steered me into the pink-lettered Grand Lux where we shared an order of fish and chips with coleslaw (his choice) as well as coffee and a slice of Godiva chocolate cheesecake (my choice). As he pecked at the dessert and I ate the lumpen portion of the 1,400 unconscionably calories, I remembered my friend Gratia, my coworker at the Atomic Energy research labs in South Africa, who was diabetic. Like other people with diabetes, because of the unreliable pre-hightech monitoring available in the 1970s, her blood sugar sometimes dropped too low. Rather than immediately eat some of the candy or fruit her mother kept by for such episodes, she would swoon on the couch while her sister ran to the cafe to get her an ice cream. In those days people did not usually have ice cream at home, even in Pretoria where they lived—it was a special-occasion treat. (In Marikana, the village near our farm, ice cream was available only on certain Thursdays when a truck brought some from Rustenburg. Refrigeration was iffy in farm country.)

We’d arranged a trip to Las Vegas trip to get a break from of a series of apartment-refurbishing disruptions, necessary and welcome, but nevertheless exhausting.  (See Doña Quixote balks at being in two places at the same time.) We would return to another disarrangement, namely the laying of new carpets in our bedroom and Peter’s study. So our get-away could not be better timed: on our first morning in Vegas, both of us slept until almost noon. Despite my getting lost under the pink letters and other less disconcerting confusions in the mall, we had a wonderfully restful time. When we returned home, we would have to clear all the furniture (and take the books off the shelves) from the two to-be-carpeted rooms. I had to empty my closet as well. We had movers come to move our large posessions and park them in one of the bathrooms, the living room, and the kitchen. We stayed in a B&B for the duration of the work. I spent a great deal of it sleeping. Even though our movers would not carry the furniture into place for another 2 days, we went back home as soon as the carpets were in. We slept on our mattress on the floor. In the living room, my bedroom easy chair was fortunately within reach and we both made good use of it. Home was where we wanted to be.

Peter’s first concern about returning our clothes and other items back to their normal places was to get the computer network back up. He made good progress until he started putting my computer back together. When attempting to hook up my keyboard, he found to his consternation that the dongle was missing. For my fellow technology luddites, a dongle is “a small device that plugs into a computer and serves as an adapter or as a security measure to enable the use of certain software” or “any small module that plugs in and sticks out of a socket.” An article in the Atlantic about the origins of the world “dongle” helps explain why reference to this tech device has always made me giggle: “The word is most likely a blend of dong and dangle, as it can resemble a penis that hangs off a computer.” A missing dongle, however, is not a laughing matter: Peter and I looked for it in every pocket, box, drawer, nook, and cranny in our apartment. I still has not shown itself. The missing dongle evoked the old poem

Dementia experts such as neuropsychiatrists, nurses, and partner-caregivers would most probably ascribe the symptoms I have noted above as those of depression. Some more recent studies, though, found evidence that “depression” in someone with dementia is often the result of damage to the emotion-processing parts of the brain, also known as the Social Brain. Social cognition – the ability to think about the minds and mental states of others – is essential for interaction and communication amongst human beings. (“Does Dementia Impact the Brain’s Emotional Center?“) The ability to direct feelings at oneself is necessary for empathy. This requires perceiving the emotion of another and co-registering and self-referring it to one’s own emotional system. The brain areas involved in both empathy and self-referential- or self-conscious emotions greatly overlap in the brain. When the social brain is damaged, the dementer shows symptoms of emotional/motivational apathy and has difficulty in decision-making tasks.

I checked with Peter, and he said the signs on the graphic were very recognizable.

Todd Feinberg, M.D., a professor of clinical neurology and psychiatry at Beth Israel Medical Center in New York, says that “one important implication of this work is that when [a person with dementia] appears emotionally blunted, the clinician or caregiver should not assume the patient is depressed and automatically treat with antidepressants [as neuropathological factors, or damage to brain cells] could be at work.”

The Social Brain.

Feinberg adds, “So far, pharmacological and nonpharmacological interventions have shown limited or no efficacy for managing the apathy associated with depression.” To summarize, people with dementia that includes damage to the social brain experience losses that threaten our autonomy and ability to contribute to society. We  often have difficulties with orientation, fear about the future, and need help from others. (Upon editing this blog for me, Peter also said that he recognizes my difficulties with orientation, the future, and the conflict between my asking for help and wanting to be independent.) To summarize, it destroys our ability to act toward others in healthy ways, ruins our sense of self, and thereby our confidence for living in the world.(“The psychological and emotional impact of dementia.”) The above information strengthens Doña Quixote’s original insight upon her dementia diagnosis: for me-the-dementer there is no hope for a make-over. Things are only going to get worse. Suck it up.

Left, Statue of a woman on the facade of a bank in Palencia, Spain. Black-an-white photos on the right, the woman’s face after a bad make-over. She is a 2012 victim in a series of nonprofessional art rehabs in Spain. The Palencia statue once depicted a smiling woman carved among a pastoral scene of livestock. After a botched restoration by an 81-year-old member, she now has “a melted face with two round cavities standing in for eyes, a misshapen lump approximating a nose, and an agape maw of a mouth.”

The deficits of my brain that had grown and grown since my diagnosis have convinced me to “drain the cup of the wine of wrath and drink it to the dregs” and go on with my life in the best way I can manage. My resolution is supported by an increasing body of literature that the best way forward is to keep on searching for meaning and quality of life in the HERE AND NOW and to keep on finding strategies to live with my dementia, in whatever phase it is. In a paper titled “Balancing the struggle to live with dementia: a systematic metasynthesis of coping,” the authors identified two main resources of coping: (1) Humour and (2) Practical and emotional support as well as four overall strategies that have helped people with dementia cope with the challenges they experience: (i) Keep going and holding on to life as usual (Doña Q: or as best you can); (ii) Adapting and adjusting to the demands from the situation (Doña Q: rest when you get confused, leave gatherings if you get agitated with not understanding topics); (iii) Accepting the situation (Doña Q: ask for help with things at which you have repeatedly failed, thereby not putting someone in the situation of cleaning up—emotionally and physically—after you); and (iv) Avoiding some situations (Doña Q: don’t go to social gatherings if they confuse or otherwise upset you; take things from moment to moment so that you don’t panic as you go about your day, ask someone else to choose between two menu options that you like if you can’t decide yourself; ask your caregiver to give you a time warning before you go anywhere so that you don’t have to rush to get ready—you both know you are very slow with everything you do. Prevent last-minute stress by packing/getting your handbag with money, apartment key, tissues; clean eye-glasses and put them on, put in hearing aids, find walking stick, etc. together way ahead of the time to leave).

In the Archaeological Park of Siponto an ethereal wire-mesh reconstruction of a 6th century christian basilica rises 46 ft tall from the foundations of its predecessor, which was destroyed in a 13th century earthquake. After the natural disaster, the site was abandoned for several centuries, until a Romanesque church (still-standing) was built next to the original’s ruins between the 11th and 12th century. In 1916, Italian wire-mesh sculptor Edoardo Tresoldi, then only 26 years old, was commissioned by Italy’s Ministry of Tourism to erect a structure on the 16th century foundations, in other words, right next to the still existing Romanesque building. Tresoldi interpreted the commission as undertaking to (in his words) “frame the emptiness” while at the same time calling forth the “absent matter” of what used to be. By updating “the relationship between the ancient and the contemporary,” Tresoldi incorporated a fourth dimension, melancholy.

By accepting the ruins of my brain, I don’t have to spend time mourning for what was but can rather “frame the emptiness” by seeing my diminishing mental resources as the friendly ghost of a capability I used to have but can no longer command. Most importantly, in the night-photo of the Siponto basilica below, I see the edifice of Peter’s never-ending—daily, hourly, minute-by-minute—glowing love, a love that keeps my head together even while its insides is becoming more and more transparent by the day.