Military metaphors vs Stockholm Syndrome: fighting Doña Quixote, aka my dementia, or cozying up to her?

It’s been a while since I last posted a blog. Blame Doña Quixote. Afrikaans has a crass but apt expression when it comes to how I feel toward the Doña lately: more than once during the past months I’ve told her,  “Jy maak my tiete lam,” or, “You make my tits droop.” So what has she done to make my Grand Tetons slump?

Grand TetonsSal Marino.

ITEM: Among the errands Peter and I ran the other day, was the purchase of oatmeal for my breakfast. It was the only item we needed from the grocery store, so Peter stayed in the car while I was supposed to quickly run in and accomplish my mission. Ten minutes later—after trying to locate the cereal aisle in a store I have visited frequently for more than 10 years and, after a considerable hunt, then walking up and down amid the fruit loops and raisin bran multiple times without locating the oats—I called Peter. “I can’t find it,” I said. As always, he rushed to the rescue and found me Eeyore-slumped by the ungenerous shelves. As he was still walking toward me, he said, “Turn around.” And there it was, a cornucopia of oatmeal flavors and styles. ALL THE TIME I WAS HUNTING, DOÑA QUIXOTE TRANSMOGRIFIED MY MIND IN SUCH A WAY THAT IT NEVER OCCURRED TO ME TO TURN AROUND TO SCRUTINIZE THE OTHER SIDE OF THE AISLE.

Gerda back home with her hard-earned box of oatmeal

ITEM: One morning last week, it took three attempts before I managed to get dressed, even though I had laid out my clothes on the bed before I started putting them on. The shoes I wore with the chosen outfit were high-tops and one has to loosen their laces all the way down for my step-sister foot to slip in. I managed just fine, got them on without incident. I then discovered that I had not yet put my pants on. My skinny jeans with their yellow side-stripes cannot be pulled over any shoes, never mind high-tops. So off come the shoes, on go the pants, and on go the shoes again. But the Doña was not done: when I started to belt the jeans, I noticed that I had omitted my underwear. So off everything came again, on with the underwear, and so on. (By then I felt frustrated and anxious about the whole day that lay ahead. Fortunately, while I was in the bathroom before putting on my shirt, Peter struck with a practical joke: by the time I returned to the shirt on the bed, it had mysteriously grown boobs. When I lifted it, there, strategically placed, were two rolled-up pairs of Peter’s socks. I laughed out loud, Peter came from his study to say, “Gotcha,” and we hooted together until my mood was substantially restored and my shirt successfully put on, up to its difficult top buttons.)

My shirt had mysteriously grown its own Grand Tetons…

ITEM: I mostly don’t manage to complete all the steps of buying something. The other day in the mall, I was paying for a black Madewell top I scored for 70% off on a sale at Macy’s. I have a Macy’s loyalty card, the only problem being that I have long ago lost it. I can still access the card by typing in my social security number on the paying device. Some days I remember my Soc Sec #, some days I don’t. This time I did not. So while the line behind me gets longer, I call Peter and he finds it for me. Mindful of security, he says it to me over the phone in Afrikaans. Turns out I can no longer type a number in Afrikaans. He tries in English—no go. I hand the phone to the sales lady, he says it to her, she successfully types it in. After so much stress and under the impression that I have done the job, I start walking away. The sales lady, alarmed, calls me back. I had to sign. I sign, walk away again. She calls me back to take my bag with the purchase. I would blame my confusion on the forgotten Soc Sec # if it weren’t that I did the same trick at Barnes & Noble the next day, and at Whole Foods last night.

In other words, Doña Quixote sucks. Or—to employ an intensifier verb that Urban Dictionary suggests—she hoovers. So you can see why I am ready to take up arms against the Doña on the metaphorical battlefields on which physicians have met, and hopefully defeated, their enemies since the 17th century. Military metaphors in Western medicine date back at least to the writing of John Donne (1572–1631) and the English physician Thomas Sydenham (1624–89). For example, Donne described his illness as “a canon shot” and “a siege,” and the physician Thomas Sydenham noted that “[a] murderous array of disease has to be fought against, and the battle is not a battle for the sluggard.” Today—despite efforts toward more positive comparisons in certain branches of medicine—medical treatments are still referred to as “eradicating,” “annihilating,” “battling,” “destroying,” and “attacking ” the symptoms, or, preferably, the origins of disease.

 

Cala De Don Quixote, or The Creek of Don Quixote. José Guadalupe Posada (1852–1913) 

While military metaphors are late to the field of dementia, you will nevertheless get at least 38 million results when you google “fight dementia,” among them these titles:

  • “Strategies to Fight Dementia”
  • “Harnessing the immune system to battle Alzheimer’s disease”
  • “Developing the framework for the international battle against Alzheimer’s disease”
  • “Dementia in Lewy body syndromes: A battle between hearts and minds”
  • “Fight Dementia with Brain exercises”
  • Fighting Dementia With Food

 

Vertumnus. In 1590, Giuseppe Arcimboldo painted his royal patron, the Holy Roman Emperor Rudolf II, as a composition of fruits and vegetables. In Roman mythology, Vertumnus is the god of seasons, change and plant growth, as well as gardens and fruit trees. (Smithsonian

If, for the moment, I embrace these military metaphors, what do do to fight dementia? How do I fight it? What do the articles I found above tell me? Collectively, these how-to articles focus on maintaining physical, intellectual, and/or social wellness for as long as possible through a stratagem of exercise, nutrition, cognitive training (brain games), socialization, and/or management of heart health risk factors. Activities for engaging in the fight include:

  • Connect with friends weekly
  • Meditate, relax, take a yoga class.
  • Volunteer or join a club.
  • Take a class where you can connect with others who share your interests.
  • Explore your neighborhood, and meet your neighbors.

So, what’s to argue? Sounds like healthy, logical steps to take. Good idea for everybody, in fact, not only those of us with dementia. So why do these suggestions awake the Grinch in me so uncomfortably near Christmas?

The problem is that people with dementia—if not all of us, then definitely me—have a root problem that militates against successfully engaging in any activity: our executive function is broken. Executive function is the ability to plan, list, and methodically execute a number of steps toward a goal.  Like dressing yourself. Or remembering that the aisles in a grocery store have two facing sides. At some point, we get the steps muddled, forget why we are doing a step and drift off, or are otherwise unable to complete the task. 

If something like dressing myself of buying an item in a supermarket is difficult, just imagine what it would take me to locate, enroll for, and get myself transported to a yoga class. To extrapolate, I cannot do a single one of the suggestions listed above without asking the time and help of other people. For starters, unless these activities are available within walking distance, I would need transportation. Some days I am able to take Uber by myself, on rare days even the bus. There are many days, however, when I am so overwhelmed with the idea of calling Uber that I don’t go through with a planned activity.

Thanks to marvelous friends, I do “connect with friends weekly”: lunch with Shen on Thursdays, breakfast with Kirstin on Fridays, and other ad hoc socializations.  My friends pick me up or meet me at a place in my neighborhood that I can walk to. All of the listed activities involve Peter’s help: he helps me find things like my glasses, keys, and handbag, helps me keep on time, including reminding me to allow time for going downstairs or walking to the meeting place; sometimes he takes me by car or talks up my confidence about using Uber. Just getting me out the door takes a lumpen time of his day.

Luis Jiménez, Baile con la talaca, or Dance with the Skeleton (1984), lithograph.

It there are any fights against dementia, they are, on the whole, not fought by those of us who have dementia. They are fought by our lovers, our friends, our children, our grandchildren, our caretakers. They happen only for those of us who are privileged enough to have people who love us nearby and who have the financial and social means to engage in the war. As we lead up to Christmas or Hannuka or Kwanza or the Winter Solstice—or whatever reason each of us has for reflection in this time of shortening days and lengthening nights—I cannot help but ask:

#1: How many of my 5.7 million dementia buddies (2018) in the USA—never mind the 50 million of us worldwide (2017)—have the wherewithal to engage in the defensive tactics umbrella’d under “the war against dementia?” Since I am very much aware of how difficult it is to stay focused enough to follow through all by myself on even a day’s worth of action items, the question arises of how many helpers/caretakers/blessed souls it would take to help those of us with dementia engage in such a fight. Given that currently about 15.7 million adult family caregivers in the US care for someone who has Alzheimer’s disease or another dementia, we already need about 3.6 people per dementer to give their love and time—all the while risking financial security—just to keep persons with dementia in our country more-or-less fed, clothed, and clean.

 

   

In a world rife with elder abuse—where those annoying old people with dementia (who cannot tell) are prime targets —it seems that we are an evolutionary leap away from providing even the most basic care that both old and young people need. 

In the battle with dementia, then, who are the actual “warriors” in the field? Certainly not those of us with advanced dementia—we are the beneficiaries of the fight, “we” being that very small subset of people with dementia—the lucky ones—who have the family structures and financial resources that enable an environment where we can do best.

Don Quixote and the Windmills, Salvador Dali, 1945.

#2 Whenever I reflect on my dementia in writing, it is still astonishing to me that I can still write. But it is much harder now. I have been working on this post for over a month. That is, the writing part. I have been wanting to do it since my last post at the end of August (2018). I could not get up the motivation—call it “courage”—to start. The “fight” to maintain the maximum independence in my “activities of daily living” (ADLs) takes so much brain energy that there is no creative energy left. I am grateful for the sparks that still occur in my formerly ceaseless desire to write. I am not suggesting that one can only write when inspired. I am talking, rather, about the discipline of sitting down at your computer whether you have inspiration or not. That discipline, for me, is greatly stymied by the afflictions of my executive function. I have found a trick that sometimes works: if I think of something I want to write, I start looking online for art images on the topic. After a week or so of that, I can sometimes get going. 

Melencolia, Alessandro Sicioldr Bianchi (2015). The main picture at the start of the post, Daimon, is also by Bianchi (2016).

#3. The field in which I can still be creative has shrunk to a very small domain. This shrinking is, of course, part of getting older as you scale down your possessions and activities to a more liveable pace than when you held a job and many household responsibilities. For those of us with dementia, though, that shrinking is intensified by the disease itself: apathy sets in.

Encounter with the Shade, Alessandro Sicioldr Bianchi (2018). 

“Apathy,” says the Psychiatric Times, “which refers to a loss of motivation, is marked by such characteristics as diminished initiation, poor persistence, lack of interest, indifference, low social engagement, blunted emotional response, and lack of insight….Apathy is linked to executive cognitive dysfunction. ‘Without interest or initiative, it’s difficult for these patients to use their remaining cognitive function, said Philippe Robert, MD”.

L’Attesa o Il Risveglio, or Awaiting the Awakening.  Alessandro Sicioldr Bianchi (2018).

#4. Other than writing—which I mercifully can still sometimes do—I have one creative fight left: the management of my clothes. I don’t actually perceive my efforts as a fight, but rather as an accommodation. Like someone afflicted with Stockholm Syndrome, a condition that occurs when hostages develop a psychological alliance with their captors as a survival strategy during captivity, I huddle ever closer to Doña Quixote, work ever harder to please her. Like others who have succumbed to Stockholm Syndrome, my need to survive is stronger than my impulse to hate the person who created the dilemma. Psychologically speaking, a positive emotional bond between captor and captive is a “defense mechanism of the ego under stress.” Like Patty Hearst loved her captors, I cozy up to my need to keep my clothes in order, no matter the irrational-seeming lengths I have to go to. 

 

Patty Hearst  or, if you prefer, Beauty and the Beast

As you denizens of my book and blog know, I have written in Memory’s Last Breath, as well as here, about the efforts I have expended to organize my closet to match my shrinking “search and find” power. Losing my way in my closet has been the bane of my life even before my dementia diagnosis 8 years ago. 

  Like many people, I used to organize my closet by hanging tops on the one side, and stacking bottoms on shelves or hanging them on the other side. In this way, I could easily mix and match tops and bottoms. Photo approx. 2009.

At least a decade ago, my method of tops to the one side and bottoms to the other stopped working well. This is why: despite the fact that I don’t have all that many clothes (friends close enough to enter my closet now and then have remarked on that) it looked like a lot because I made up many different combinations. As my microvascular disease destroyed more areas of my brain, I started to forget the constituents of what had been a pleasing outfit a week before; while I remembered that I had hit upon a great combination with, say, my pink evil  roses jeans the last time I wore them, I could no longer remember what the combination was. 

A previous incarnation of an outfit I had figured out for my pink evil roses jeans

To recreate an outfit I had particularly liked could take me hours of mixing and matching before I got it again. If it didn’t come back soon and I was really stubborn about reconstituting it, it could take me many hours, even days. Sometimes I just gave up. My remedy, eventually, was to write down which items go together on a white card and hang it on the hanger of the main item, say the evil roses pants. At the same time, I also arranged the components of an outfit together in a group and placed various outfit adjacent to each other in my closet.

Each bottom and its matching top(s) together in my closet, with different outfits next to each other. 

This ordering did not work all that well for outfits with shared components: for example, I also wore the purple-grey sweater that matched my evil roses jeans with my tulip jeans. But I also wore my tulip jeans with a cream top and different jewelry. It turned out to be impossible to order outfits that share components in an easily visually decipherable order. Therefore my main tool in functioning sartorially during this time were the cards I created that stipulate all the components of each outfit.

 

Soon the cards alone were not quite sufficient. I had to take photos to accompany the cards. To keep them in order, I put them in an album. 

 

Note the card on the above the pants where I jotted down all the components of the outfit. In the album I placed a photo of the outfit together with a photo of me wearing the outfit.

During our last year in Roberta Street and now that we live in Wilmington Flats, this system alone no longer works. Even when an outfit hangs in my closet, items together, I often cannot find it. I just don’t “see” it. Nothing wrong with my vision, just the part of my brain the does the recognition. 

Francesca Woodman, Untitled, New York, 1979-80 © 2012 George and Betty Woodman

The remedy for my ongoing confusion was “Swedish death cleaning,” or getting rid of all the stuff that’s not essential to your functioning, so that no one else has to do it for you after you die. Starting in Roberta Street, I drastically culled the clothes that did not make it to my top ten list of outfits or those hard to wear because they needed dry cleaning, ironing, or too many accoutrements for me to keep track of. Once we moved into our flat in Wilmington Ave, the culling continued. I threw out all but one combination of each outfit (sometimes I kept 2, if they served different functions, eg, a cool top for summer and a warmer one for winter for the same bottom.) In other words, instead of mixing and matching, I have reduced  my clothes to a collection of single outfits that do not share components. Needless to say, I kept only my very favorite ones. Now it was easy to hang all the items of one outfit together. I hang them adjacent in this order: top, including jewelry, then the bottom, with the shoes placed nearby on the shoe rack below.

 

 Francesca Woodman, “Untitled,” New York, New York (1979-80) 

During the last few months, though,I started having trouble mentally separating adjacent outfits: I would stare at a top that goes with the outfit on the left and try to match it up with the pants of the following outfit. I could see it did not work, but—analogous to the supermarket—it did not occur to me to look to the other side. Also, my thoughts would drift away and I could no longer remember what I was trying to do in my closet.

 

Francesca Woodman House #4, Providence, Rhode Island, 1976 © 2012 George and Betty Woodman

My latest creative foray—and I insist on the adjective “creative,” because for me it is—was to separate the outfits with in-between hangers draped with my larger scarves. This solution does make the clothes-locating process easier, but sometimes I get confused and interpret the hanger-scarf as part of an outfit. So I declared additional love for Doña Quixote, and have enabled her by buying a dozen white pillowcases in which I cut holes to fit on a hanger and hanging them as dividers. I kept only one scarf—my red one—as a bookmark for easily finding the place to which I must return the clothes after taking them off. When an item has to go in the wash, that creates a whole nother kettle of fish!

 

    

Other than unmistakably separating outfits, the white pillowcases serve as white flags that represent my surrender. 

Writing about my closet wars has given me this insight: my executive function apparently still works well in my head or on paper. I can devise endless solutions for my ever-growing difficulties, but the trouble comes when I have to execute a solution in the real world: in the real word, my actions are ruled by what I see–or don’t see rather than by the logic I used to live by. My real world feels as if I’m walking about in an Escher lithograph.

 

Relativity, M.C. Escher, 1953

By raising my white flags, I echo a new trend in disease management, namely the abandonment of military metaphors as described in an article titled “Healing Without Waging War.” This trend resonates with my philosophy of life: accepting my microvascular disease/my dementia/Doña Quixote/my closets spontaneous un-orderedness as a part of my life, a part of me, until it is time to go to a place where I won’t need a wardrobe!

 

  

  

All images above by Francesca Woodman. Clockwise, from top left, “Untitled,”(1975-1978);“Untitled,”(1975-1978); “About Being My Model” (1976); House #3 (1976). 

But I hope to go out with Aretha Franklin’s  flair, sartorially anyway. Unlike her, though, I won’t be sporting—among other outfits—”a sparkling full-length gold dress with sequined heels, a rose gold custom knit gown with pink beaded lace accompanied by a custom-made pink South Seas pearl necklace and earrings and rose gold sequin Christian Louboutin heels.”

  

 

Instead, I will be swallowing my hemlock wearing my best glittery tracksuit—with matching jewelry!

Kate Moss (left) with Matt Lucas as Vicky Pollard in the comedy sketch show Little Britain. In this photo, I am most definitely NOT Kate Moss.

Until then, here and now, I will keep on playing with my clothes, because that produces the most creative fun I experience every day!

And I will keep jacking up my Grand Tetons, until time and tide have worn them down to a grand canyon. Eat your heart out, Aretha Franklin!

New Yorker cartoon.