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At the start of winter, Doña Quixote moved in from the cold on the back stoep into the kitchen, where she is dangling from a hook in the ceiling. I shouldn’t have been such a push-over in letting her in. Give her a pinky…

These last two weeks—since the start of the new year—the Doña has really been acting up. Even before Peter dislocated his shoulder on January 8, she was already messing with my head. However, she really shocked me when she tagged along to the hospital and sat heavily on my shoulder while my daughter Marissa and I took him to the Emergency Room: I was unable to fill out the medical information forms and find the right insurance cards to get him checked in. If it had not been for Marissa, I would have had a very hard time coping in a situation the likes of which I had managed (or could have managed) on my own all my life before: Marissa’s emergency room visits during severe asthma attacks and her broken arm, Newton’s broken collarbone and wrist, and Peter’s bladder cancer, prostate cancer, and kidney stones. But not this time.

Newton and Cheryl cheer Peter up with Starbucks coffee after his cancer surgery in 2004.

On Sunday January 8^th, Peter was holding my arm in support as we stepped out from our garage onto the driveway. On our first step, he slipped and, still holding my arm, pulled me on top of him. My fall was broken, his injury probably made much worse than it would have been if he’d only borne his own weight. Once we got ourselves upright, it was clear to me that his injury merited a trip to the Emergency Room. He was as pale as the snow and his arm hung strangely askew by his side. I thought it was broken. As I helped him into the house, he looked as if he were going to faint, so I pulled up a chair to the kitchen counter for him so I could watch him while I phoned our kids. I had my usual confusions with dialing wrong numbers—it took about three tries before I got it right (I forgot how to get to the list of stored numbers), but otherwise I was calm.

After phoning both Newton and Marissa without success, I was going to call an ambulance, but just then they called back—Marissa first, and, when she was on her way across the block-and-a-half between our houses, Newton too from his house a few minutes away by car. By then Marissa was at out house, and we managed to get Peter into the car and drove to nearby Saint Marks Hospital, which I knew was in our insurance network. Why not call the ambulance directly? First, I did not know if an ambulance would necessarily take one to a hospital of your choice. Second, and most important, I wanted someone from my support system by my side. And just as well…

Peter and Marissa in 2006

After Marissa had helped me do the paperwork and find the correct cards from my and Peter’s wallets, I turned out to be a hindrance in helping Peter take off his shoes and belt and so on—I got confused about how to undo the knots in his laces and worse, I kept forgetting which was his injured arm, touching it and hurting him. Fortunately I was together enough to know that I was in the way and moved to a chair against the wall so that Marissa could help him instead. It was clear that my confusion was not just in my mind—Marissa acknowledged it and started taking care of me too, hugging and reassuring me, and fetching me coffee—on top of taking charge of the communication with the medical personnel. She became, among other things, Peter’s advocate for more pain medication after two shots of morphine had barely taken the edge off the pain. After two hours of unrelenting pain—even a medication the nurse had administered after the morphine gave hardly any relief—Peter’s X-rays confirmed that he had dislocated his shoulder, as the doctor and nurse had suspected from the beginning. At last, pain relief came when he was anaesthetized so that his arm could be “reduced”—that is, manipulated in order to get the humerus back into the shoulder socket. When he woke up after only a few minutes, the pain was virtually gone. Even though the hospital discharged him with a Lortab prescription, he has not had to take anything other than Ibuprofen since getting home—which does not mean that he hadn’t had pain, though: for the first week he slept no more than two hours at a stretch because of persistent pain through the night.

One of the things about having dementia that most people might not know is that even the slightest change in routine—especially those involving sleep and the timing of medications—can launch a person into a madwoman-in-the-attic state. Given that I got up at night with Peter most of the time for the first few days at home to help him to the bathroom and get his pain tablets, I soon became as sleep-deprived as I had twice been with a newborn at home. In those days, however, I could function almost as well as usual the next day. This time, though, I was completely nutty.

First, I got confused about taking my medications: I took the morning medication in the evenings or vice versa; sometimes I took both batches at the same time. Some days I skipped. I would realize my mistakes after the fact. Even when Peter helped me remember, I would come back later and forgot that I had taken them and swallow another batch. Or I would forget that he reminded me and not take them. I just could not keep things straight.

Second, while helping Peter to shower and get dressed in my sleep-deprived and over- or underdrugged state, I was totally confused and could not figure out what the next step was in a routine task—such as what to do after I’d buttoned his shirt—without him telling me: tuck it in. One time when I was helping him put on his shoes and socks, I accidentally fetched an unmatched pair of socks and had to go back to his closet to find a mate. A few minutes later, he called me. “Have you found the socks yet?” I actually had. However, I had forgotten what I was going to do with them and had started putting them—plus another bunch of laundry—into the washing machine.

In this quixotic manner, we somehow got through the first week. Both Newton and Marissa offered food and help and driving—after the first day, we mostly managed with what we had at home; we took Uber cars to doctor- and other appointments. Our sleep-deprivation continued the second week, that is, until Peter started physical therapy with a veteran reliever of joint-related maladies, who told him to get one of those long, soft body pillows to hug at night, like you would hug a tree/or your wife? if you weren’t too scared to go near her because she constantly hurt your arm? From the first night with the pillow onward, we’ve both had many-hour stretches of deep, sound sleep.

Unlike Peter’s two remarkable instant pain relief experiences—after the shoulder reduction and the adoption of the pillow—my confused state did not immediately clear up. It is only now—after almost a whole week of good sleep—that I have returned to my “ordinary” craziness.

There is a maxim among caretakers of older people that every time the old person gets an injury, he or she will almost never recover to the same level of health as before—you may get better enough to resume your life to a large extent, but the damage done by a broken bone or a bout of pneumonia, together with the anaesthetics and other medications used in fixing it, puts you a step behind where you were on the health curve before your mishap. So it will be with Peter’s shoulder injury—which, we tell ourselves, is okay, because he has no desire to play racket ball or take up rock climbing. It seems to me that the same maxim holds for an injured brain. My experience has shown that every time I have a Doña Quixote episode, I get better again to some state of “normal.” Normal, in this context however, is a downward-trending state of being. Six years ago when Peter lay curled in the fetal position on the floor of his study with what we would learn were kidney stones, Marissa took us to the hospital too—already then I could no longer drive. Then, though, she functioned mainly as the driver. I was the one comforting Peter and communicating with the doctors. The difference in my coping skills between that time and this past January Sunday is big enough that everyone in our family noticed it. I may be the one who has spent the most hours brooding on it, though: I have seen a bit deeper into my future.

Tonight I am very glad that I am functioning better. I am grateful to have been granted another interval of self-reflection, of a mind that works well enough so I can write. Someone else can always help Peter with his socks—it is only I, though, who can tell about the joy of having a vacation from dementia, of being well enough again to write—and about the crowning bliss of being able to love people better this week than the last.

When Doug Fabrizio, curator of the VideoWest series about my dementia, interviewed me for the first film, he asked how dementia affected my state of being. “I feel like I am not well-balanced on the earth,” I replied. “I feel I could stumble. It’s like when you go to a Halloween haunted house and they make the floor under your feet tilt. It’s a little bit of a feeling like that. Maybe not that physical, but a mental tilting of my world.”

Sometimes this tilting of my world is indeed physical. Last week for example, I lost my balance and my left leg got a scraped against a coffee table from my thigh down to my ankle. I was sitting on the downstairs couch, folding laundry at the low craft table our grandchildren use for drawing, coloring, cutting, and pasting. When I got up to put away a stack of towels and kitchen cloths, I stumbled in the narrow space between the couch and table. The only way to go was sideways, folded cloths frizbee-ing everywhere. I swore so loudly that Peter came running down the stairs. He helped me up and commiserated about the faint red stripe running down the side of my leg like the side-strip on tuxedo pants—just wider. It was only when my tuxedo stripe had turned the shade of dark grapes the next morning that we both realized how damaging my fall had been. Ouma’s chain of bruises really impressed my grandkids when I showed them off that evening.

Doña Quixote, aka my dementia, thought they looked like the beginning of an interesting tattoo. I agreed, thinking that with a little bit of help from a creative friend like Erna or Corrine the markings harbored great decorative possibilities.

Photo credit: Pinterest

The ego bruises I received a few days later are not as visible: they resulted from a mental tilt. Moreover, they haven’t yet shown any possibility of productive consequences.

Kirstin and Gerda in South Africa, 2007

Last Friday morning, my BFF Kirstin and I had a sad and sobering experience. While walking from the restaurant where we had breakfast back to the car, we saw a young man lying on the sidewalk under a tree. He lay on his back, writhing and moaning. He had lifted up his tee shirt and was vehemently scratching his torso as if trying to rip off the skin. As apparently uncontrollable spasms racked his frame, his limbs involuntarily jerked around. His eyes were squeezed tight. We stopped, Kirstin asked, “Are you okay, Buddy?” He opened his eyes, said he was fine, but his body negated his statement with jerks so violent that he shifted along the curb uncomfortably (to us) close to the rushing traffic.

Dayne—we would later learn his name—was clearly not fine. Drug overdose, we thought. After hesitating for a moment—Kirstin had to be at work urgently and my starved-for-her-company dallying over a third cup of coffee had already made her late—we decided to call 911. While Kirstin explained our whereabouts to the emergency dispatcher, Dayne got up. For a heart-stopping moment he lurched almost into the street, but then took off in the opposite direction, ending up fifty yards or so away in a driveway that functioned as a temporary entrance to a construction site. I hurried after him, caught up when he slid to sitting position against one of the waist-high concrete barriers that demarcated the edges of the make-shift road. He was pale and sweating. Fortunately the barrier cast a bit of shade. After asking his permission, I sat down by his side.

Dayne was again twitching, crying out in pain every few seconds. When he pushed his hands against the ground in an attempt to get up, I asked if it was okay to touch him. He said yes, and I put my hand on his shoulder. That stayed him and seemed to calm him somewhat. It was not long before we were holding hands. He was crying and I murmured comforting lies. “You’re okay,” I said. “Everything is going to be better soon.”

The spectacle of a grey-haired woman with a funny haircut and a short young man with an afro-style halo of hair and a fuzzy beard attracted attention from the construction crew. A woman speaking into a walkie-talkie and a tall man wielding a long-handled spade came by to check if we were allright. I nodded yes, pointed to Kirstin who was pacing the side-walk to flag down the police and speaking to the dispatcher on and off. In the half-an-hour it took the police to reach us—a down-and-out druggie apparently not topping their priority list that morning—I kept up a nonsensical monologue about the beauty of the mountains around our city and the hot weather we’d been having. When my words dried up, I sang nursery rhymes in Afrikaans. Dayne waggled his feet in rhythm to my out-of-tune songs, cried now and then, and mumbled incomprehensible phrases about his mother and brother.

At last the cops arrived. When Dayne saw them, he cried some more, but became purposeful for the first time since we had met. “That is my friend,” he said, pointing to an officer. “I have something for him.” He addressed me directly for the first time: “You and I must get up together so I can give it to him.” And so we did.

The cops could not be nicer. Given several recent protests against police for the fortunately non-fatal shooting of a black teen on a February weekend, Kirstin and I later cynically wondered if our presence might have had some effect on their impeccable curb-side manner and the pointed reading of his Miranda rights to Dayne from a laminated card. Or maybe the cops in Salt Lake City are really always that polite and letter-of-the-law abiding?

Several hundred protesters march in the streets of Salt Lake City in support of Abdullahi Mohamed, a teen shot by the police over the weekend. Monday, Feb. 29, 2016. (Photo: Scott G Winterton, Deseret News)

The officer who spoke to Dayne and me took my and my protégées details, while another officer spoke to Kirstin. Dayne did not show much interest in giving his name or address (he was homeless) or information about relatives—he had more important business to attend to: “I have something for you,” he reiterated.

“What is it?” OurCop asked.

“A gun.”

OurCop remained polite, but his attitude had become steely. Whipping out a pair of handcuffs, he said, “Just going to put you in these for now, Buddy.”

I had to let go of Dayne’s hand. He cried.

While OurCop, now assisted by Kirstin’sCop, unbuttoned and unzipped Dayne’s pants to get to the large lump tucked under his waist band on his right, Kirstin and I each put a hand on one of Dayne’s shoulders and told him he was a good guy and he had done the right thing to mention the gun and that his mother would be proud of him. That is the last communication we had with him before he was led to the police car and put in the back seat.

A Salt Lake City police officer speaks to homeless people in the Pioneer Park area. 2014.

The gun turned out to have been loaded—it had two bullets in the chamber. In Dayne’s other pocket, OurCop found a syringe, a packet of heroin, and a thick wad of money. There had been burglaries in the area the last day or two, OurCop disclosed. Then Kirstin and I were taken aside to each separately give our accounts of the events. OurCop questioned me. Or rather, he verified my name and address and then gave me talking-to—all very respectfully, as I imagine he might have done with his mother or grandmother—about the balance between compassion and safety. I listened to his admonishments, saw his point, and said I would be more careful in future. In my heart, though, I felt that I had never been in danger from Dayne. No matter how mean or vicious he might have become in other situations, at this stage of his drug aftermath he had the demeanor of a 4-year-old who had done something forbidden and got an owie as a result and just wanted his mom to love it better. I also knew that I would trust my people-instincts again in a similar situation, though I would be more deliberately on alert for signs of a mood-change in someone under the sway of a strong psychotic. When we debriefed our adventure on the way to my house Kirstin, too, noted that she had at no time felt the situation to be dangerous.

Earlier while we were waiting for the police, Kirstin had alerted Peter by phone that I was going to be late for our appointment to run errands. He was of course concerned about the cause of my delay, but was persuaded by Kirstin’s matter-of-fact phone demeanor that we were not in need of rescue.

Back home, while learning the detail about the loaded gun, my beloved husband became deeply perturbed about what might have happened. “I want you to be alive here with me,” he said, tears in his eyes. But he also said that the incident sounded like one of the many “rescues” I had done before in my life and that he did trust my instincts when it came to people.

“I want you to be alive here with me.”

Peter’s gentle expression of his fear of what might have happened spared me from having to defend my behavior even as I started doubting the wisdom of my act. Doña Quixote was not so kind: for days now she has subjected me to an intense self-examination. Was the “rescue” effort a case of Doña Quixote taking over? Had my judgment been off? After all, hadn’t I been demonstrating a lack of judgment in where the edge of a counter is when I put down a glass, or the time it would take me to catch the bus, or the purchase of a heavy winter coat while shopping for a light raincoat, or a blunt answer where a friendly one was required, or where to put my foot when getting up to put away a stack of laundry? I am not the person whom, just this morning, Peter had to steer in the right direction multiple times as we used to do with my mother? When we were at the mall on an errand, didn’t I get confused about whether we had to go up or down in the elevator after I myself had pressed the “up” button? Am I not the one whom Peter had to elbow to get out of the elevator once we reached the right floor? Hadn’t I forgotten where we had agreed to meet so that I had to call him? Had my “decision” on Friday to “look after” Dayne even been a decision, or was it—like so many of my actions in the past weeks—an un-thought-through impulse that never passed the checks of rationality? How could I, with my tilting mind, ever tell if a decision had been “correct?”

I still don’t know the answers. I do know that the thought of Peter telling our children and grandchildren that I had been killed in an accidental—I hold on to the belief that it would have been accidental—shooting by a drug-addled man has filled me with dread ever since my talk with Peter when I got home.

The thought of my own non-being is not the source of my angst—it is the grief of those who love me that makes me fearful.

Damien Hearst. The Physical Impossibility of Death in the Mind of Someone Living, 1991.

In the meantime, life goes on. For long parts of the day my mind rises above the maudlin underscore of self-doubt. Peter and I go out for coffee, play with our grandkids, visit with our kids and neighbors and friends, make dinner, hold hands on the couch every night as we watch the nth rerun of the BBC’s geriatric comedy As Time Goes By.

The bruises on my leg are yellowing. Soon they will have faded. Even Doña Quixote is coming around. Today she informed Peter that it has proven to be more dangerous physically to fold laundry downstairs than to assist the cops in taking an armed drug-addict off the street.

As for me, I often wonder how Dayne is doing.