Mrs. Rayhons died in August 2014 at the age of seventy-eight. The New York Times reports that “her husband was arrested soon after her funeral.”
Mr. Rayhons’s lawyer, backed by medical and psychiatric professionals, questioned the validity of the assessment used to deprive the Rayhonses of their right to have sex, since “no widely used method exists for assessing the ability to consent to intimate relations. One obstacle: Dementia’s symptoms fluctuate. Patients may be relatively lucid in the morning and significantly impaired in the afternoon.” Mr. Rayhons’s legal team also contended that “physical intimacy can benefit dementia patients… calming agitation, easing loneliness and possibly aiding physical health.” Daniel Reingold, chief executive of the Hebrew Home at Riverdale, in the Bronx, which pioneered a “sexual rights policy” for residents in 1995, says that “touch is one of the last pleasures we lose.” Given that aging and restriction to a long-term care facility cause “loss of independence, loss of friends, loss of ability to use your body, why would we want to diminish [physical intimacy]?”
These experts do not dispute the inability of a person in a vegetative state to consent to sex. However, dementia patients often retain considerable awareness even though they are unable to manage money, discern time, or recognize children. Gayle Doll, director of the Center on Aging at Kansas State University, believes that though “persons with dementia might not assent with words,” they can still indicate a desire for touch and other sexual activity “with body language or facial expression.” Mr. Rayhons’s team therefore argued that people with dementia should not be deprived of “the capacity for self-determination and intimate relationships.”
Dementia Field Notes
7-10-2012
When I went to a precheck for my colon surgery, I parked between an SUV and a shoulder-high wall. When I returned, someone was waiting for my parking spot, but I thought she was too close. I waved her back, and she retreated, but it wasn’t enough. I motioned again, and she moved another inch. Still feeling cramped, I reversed, but when I turned I banged into the SUV. I got such a fright that I reversed and hit the concrete wall.
I wrote the SUV owner a note, called Peter. I told him our car was okay and I would drive back.
Bottomless dread.
Back home, I told Peter I was no longer going to drive. Since it was the day I usually took our elderly neighbors shopping, I went over to tell them I would not be taking them that day or again in the future. I could not bring myself to tell anyone else. It wasn’t so much the driving, but rather the change in what I think of as a core of my self: helping other people.
7-16-2012
On Saturday morning I made a statement about not driving: I went shopping. By bus. At Fashion Place Mall. An hour there and an hour back. Nothing like being one of the elite on the bus who are not toothless, homeless, in a wheelchair, or on oxygen to take my mind off myself. Nothing to make my troubles seem trivial like the disproportionately large number of African Americans, Native Americans, and Hispanics awakening my racial privilege.
12-31-2012
Returning by bus from Fashion Place in the late afternoon, I inadvertently got off twelve blocks too soon, a mistake I realized only after I had crossed the street. Since the temperature was nineteen degrees and the next bus due in half an hour and there was no shelter, I swallowed my pride and called Peter to come get me.
After Peter and I were married, we each added a year or so of post-bachelor study. Then followed six years of acquiring professional jobs, a house, furniture, a sound system, and a six-week trip to Asia. Our first child, Marissa, was born during the seventh year of our marriage. After a day of hard labor, she slid into the world, and I impatiently strained to get a glimpse of her while she was still tied to me. Peter described her as “a beautiful little girl with red lips.” Since she was distressed and cold after the umbilical cord wrapped around her neck toward the end of a long labor, I only got to hold her for a few moments before she was taken away to be warmed in a covered, heated crib. I had planned to put her to my breast within the first minutes after her birth—as the books said—and had a sense of something far worse than disappointment when I was denied the chance. Giving her back to the nurse was like giving up an arm.
Fortunately our daughter soon rallied, and I was able to hold and nurse her. When I wasn’t holding her, Peter was. In between, she slept in a crib beside my bed. Although I was exhausted, I fought sleep because closing my eyes would mean I could not see her. I was in love. All I wanted to do was hold her against my naked body, stroke her face and tummy, kiss the top of her head and her little pink hands, lick her toes.
I was headlong, hoplessly, ecstatically in love.
Two and a half years after Marissa’s birth, Newton burst into our lives, his scrunched-up face yelling annoyance that it took us so long to get him out. I was able to put him to my breast and hold him and love him, as besotted as I was with my firstborn, with his warmth against my skin, his greedy rooting for my nipple, and his feisty, “masculine” way of thrusting his little arms and legs into my torso and lap when I held him. He, too, stayed in a crib by my bed. Since my labor with him was even longer and harder than with Marissa, I drifted off into sleep soon after Peter had gone home to tell Marissa and Ouma Raaitjie about our little boy. Before I had fallen into a deep sleep, I was awakened by a choking sound. When I pulled Newton from his crib, he was blue, not breathing.
What friends would later call my “hyena mommy mode” kicked in. I shouted for help, all the while wobbling to the nurse’s station as fast as someone with episiotomy stitches could hope to do. The nurse on duty rushed toward me, reaching me not a second too soon. I put my baby in her outstretched hands, fainted, and crumpled to the floor. The next time I knew what was going on, Peter was telling me that Newton was okay. He had aspirated some fluids during the labor, the nurses had cleaned out his airways, and they would be observing him in the baby room for the night, though they would still bring him to me to nurse. My doctor took my fainting spell as an indication that the transfusion he had been considering in light of my blood loss was now inevitable. I would be transfused the next day.
As it sadly sometimes goes in medical situations, the intended cure proved worse than what led to it. I turned out to be one of the approximately 0.003 percent of people who suffer anaphylactic shock from a plasma protein in the blood component. About ten minutes into the transfusion, I told the nurse by my side that my feet felt funny. I had never in my life been the object of a flurry of activity of the magnitude that followed. The last thing I remember was a circle of faces around my bed. After the loss of consciousness, after the antihistamines, the oxygen, the adrenaline, and the steroids, I needed additional blood even more than at the outset. The next day, I was again transfused, this time starting with an antihistamine. Despite my restored blood volume, I was really sick. It took an additional three days before I could take my baby home. The worst effect of the dramatic episode, though, is that I did not feel any love for my son. I might as well have been holding the baby of a neighbor’s niece from Windhoek.
Whatever happened to my brain after the anaphylactic shock must have affected my facial recognition pathway—fortunately only temporarily. When I discovered the Capgras phenomenon, the descriptions of patient responses sounded eerily like my own when I felt a big blank about Newton. He sure looked like the baby I loved right after he was born, but why, then, did I feel nothing?
In what I think of as an example of one of the central claims of existentialism, “existence precedes essence”—the idea that a human life does not have meaning in itself but that we create our own significance through our conscious acts—I went through the motions of caring for my son once we were home. In the same way that faking a smile can improve one’s mood—as shown by psychologist Paul Ekman—my faking of loving maternal behavior started upping my oxytocin levels and within a few weeks I was romancing my son in the same way I had his sister before him.
To this d
ay, my son has never stopped lighting my life. Whenever I see him or talk to him, I still feel the awe-filled openness of the love that slowly blossomed for him in my soul, a love that, to my feminist chagrin, warrants Freud’s statement that a mother’s relation to her son “is altogether the most free from ambivalence of all human relationships.” My redemption as a feminist lies in the fact that Freud’s words also perfectly match my feelings for my daughter.
In a letter he wrote for my sixty-fourth birthday Peter says,
I want you to be there when anything important happens to me to say some of those beautiful words of yours. Although I really hope we die together at the same moment and in the same place, if I am the one to die first I want you to speak some of your words to our family and friends. My nitrogen, carbon, oxygen, and hydrogen molecules will vibrate just a little faster when the energy of your words reach them while they burn furiously in the furnace.
Although Peter and I are not queasy about talking, joking, and sometimes being sad about a time when one or both of us will no longer be, it is not death we have on our minds most of the time. We are really into living. And living for older people, much more so than younger people might imagine or even want to know, includes sex. For you voyeurs out there—and I count myself in your company—I refer you to articles such as “Sex and the Seniors: Survey Shows Many Elderly People Remain Frisky” or “Sex and the Senior Citizen: How the Elderly Get It On” for summaries of “the most comprehensive sex survey ever done among 57-to 85-year-olds in the United States.” The results show that Peter and I are by no means the only sexagenerians who follow the prescription “use it or lose it.”
As far as telling tales out of the bedroom goes, I will reveal only two things: (1) as in the days when we were trying to make babies, we have to have sex by the calendar—one of us has to be off certain medications and the other on additional ones to jump-start those hoary neurons into squirting their dopamine; and (2) to achieve the jouissance that was there for the taking half a century ago whenever one of us was hot to trot, now, like many of our peers, we “have to work harder at it.” But we’re retired; we have time.
There really isn’t an age limit to having sex. As long as people have access to sex partners (or whatever else turns them on), they will keep on having sex. In the absence of partners, they will pleasure themselves—a practice cheered on health websites for seniors. In keeping sexually active until a great age, people in long-term relationships have an edge—they are most likely to have someone around to have sex with when the hormones start to “vibrate just a little faster.” Interestingly, “people who stay in their first marriages instead of getting divorced and remarried, often have more sex,” says an article titled “Married Couples’ Sex Lives Rebound—After 50 Years, Study Finds.”
In a Daily Beast section titled “In the Sheets,” Barbie Nadeau writes that “if the thought of two nude octogenarians tangled up in the sheets doesn’t make you cringe, chances are you have reached a level of maturity when sex after a certain age seems like a pretty good idea.” I, now, am “mature” enough to hope that my Ouma Truia and Oupa Carel had sex throughout their sixty-three years of marriage.
Dementia Field Notes
04-24-2014
Last week Diane took her annual break to visit her sisters in Mesquite, Nevada—a five-hour drive. Ahead of time, she had booked Bob into a care center—the VA pays for it. Their son Bobbie would take him there as soon as Diane had left. The previous year Bob got very anxious when she left, so this time Bobbie lured him for a ride in his truck so she could sneak away. Their destination: the care center.
The next evening, Bob walked away from the center—his wristband failed to set off the door alarm. The night staff discovered his absence at midnight, called 911. Peter and I heard about it through a missing person’s call in the morning. By then there were cops at their house, about to do a door-to-door search. They organized the neighbors who had shown up to search in different directions. Peter and I drove and walked our assigned area, but no luck. Bob was found seventeen hours after he escaped, six miles from the center. The person who spotted him thought he was dead: He was completely still, leaning semi-upright on an electrical box. The paramedics established that he had merely fallen into an exhausted sleep.
In the afternoon, Bob arrived home in an ambulance, followed by Bobbie in his truck. Bob was too weak to walk, so two paramedics walked him up the porch stairs. He immediately started calling for Diane. However, she was still on the road—her sister could only start driving home in daylight, because she had lost her night vision. When Diane arrived an hour or two after Bobbie had tucked Bob into bed, she vowed never to leave him again.
On March 26, 1971, Peter’s and my wedding day, I rose at first light. I had slept at my parents’ house. So had my friend Bettie, who was famous in our hostel for her flair with hair. When the alarm went off at five a.m., we both awakened tired and bedraggled after a night on the living room carpet with only a pillow and a blanket as bedding. My parents’ house was bursting with relatives who had not come for the wedding, but came to assist my ninety-something Kalahari oupa, who was staying with my parents while Ouma Truia was in a hospital in Pretoria after a serious car accident. Bettie and I, being the halest and heartiest of the guests, were the best candidates for the living room floor. To make matters worse, I had gone to sleep with rollers in my hair.
I had arrived at my parents’ house later than planned the night before, and I still had to finish sewing my wedding veil. The Henning family had come over from Iowa and were staying in our apartment. While stitching a lace edging onto the gossamer white fabric of my headpiece—the same material out of which I had made my wedding dress—I chatted with Al, Dorothy, and my American sisters. Distracted and in a hurry to get to my parents’ place, I accidentally cut a slit near the edge of the veil. Dorothy immediately became my mom again, as she had been during the year in Iowa. She talked me out of the panic that made me wring my hands, took the sewing from my lap, and completed not only the edging, but also darned the slash. The next morning, before I had even washed my bleary eyes, I quickly reassured myself that the veil and the rest of my wedding regalia were in good order and that what we would today call a “wardrobe malfunction” had only been the stuff of my floor-sleeping nightmares. Everything was in order. I was ready for my makeover.
During the hour or so it took Bettie to pile my shoulder-length hair on top of my head, she remained as unperturbed as if she were merely calculating the Fourier coefficients of a non-harmonic equation. When she was done, she coaxed a few tendrils from the massed curls to frame my face. Then it was time to step into my dress: a high-waisted style with a softly gathered skirt falling to the floor, its bottom eighteen inches adorned with lace insets. Its unlined sleeves were full on the upper arm and, from the elbow to the wrist, as skin-hugging as long evening gloves. Once I had twirled around in front of the mirror to Bettie’s approving oohs and ahs, all that remained was for Bettie to fix my veil, somewhere at the back among the poufy curls, with a spray of frangipani. Since I had decided to be a “modern” bride, the veil was merely decorative and would not cover my face. Today there was to be no screen, no matter how fine, between me and the wondrous world.
After a seven a.m. solo photo shoot at a park where Peter and I had made many memories since we had met, I headed for the church. My father was waiting at the main door. When the wedding march started, we followed the flowergirls (eight-year-old Tertia and a cousin) and maids of honor (Lana and my American sister Joyce) down the aisle. My father kissed me, shook Peter’s hand, and held on to my shoulder until Peter pulled me toward him. My almost-husband’s look of awe and tenderness when I was close enough for our eyes to meet was poetry made flesh: “i carry your heart with me (i carry it in / my heart).”
The Afrikaans Dutch Reformed ceremony that followed was canonical, the words so familiar that they took on the calming tone of a benificent incantation. The only nontraditional aspect of our chu
rch union would be Peter’s ringing “Ja” to the requisite questions, a response that would draw suppressed laughter from the participants, breaking the tight-lipped silence that usually reigned in Afrikaans churches.
After a family and couples photo session, Peter and I finally arrived at our reception. The already assembled guests waved and smiled as we strolled hand-in-hand across the Mulders’ green lake of lawn, interspersed with islands of native trees. On a jungle gym along our path, the young guests were doing gravity-defying, legs-in-the-air topsy-turvies so that my flowergirls’ lilac dresses folded like jacaranda bells over their heads. On the patio, where the guests were already at their tables, the trellised bougainvillea radiated purple-red joy onto everyting. Nodding and waving like royalty, Peter and I walked among family and friends to our seats, admiring our host Tant Lettie’s—a longtime friend of Peter’s family—golden touch.
Each table flaunted a bowl of freshly squeezed orange juice at the center, a yellow sun surrounded by an asteroid belt of pineapples, grapes, bananas, and apples. Behind the main table, where Peter and I would sit with our parents, a buffet table was stacked with egg dishes, bacon platters, loaves of bread, bowls of fruit salad, and a tureen of coffee. Towering over the food was one of my mother’s trademark giant flower arrangements, a cascade of rusty chrysanthemums, dark yellow Afrikaners, and light yellow carnations, all embedded in greenery Susanna had harvested from her own and her neighbors’ gardens.
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