When I Have Dementia

Lynn Casteel Harper

Or what woman, having ten silver coins, if she loses one coin, does not light a lamp and sweep the house and seek diligently until she finds it?
     —Luke 15:8

Margaret reaches out from her reclining wheelchair as I pass by. Always she is reaching, extending her good arm and not the contracted one curled up against her breast. When I stop long enough, when I come close enough to her, she touches my face. She brushes my cheeks, running her fingers tenderly down my jawline. I reach back: her cheeks are soft, smooth, and ruddy, like halves of a pomegranate. Her eyes meet mine. She often looks searchingly. Eyes wide open, she seems perpetually surprised. She can no longer talk, walk, or swallow. Once a professional singer, she melodically moans when she hears “Ave Maria” or “Pie Jesu.” I call her bella; I am embarrassed I do not know more of her native tongue. She smiles. Many times she has received the sacrament of the sick; she’s been anointed with oil, sprinkled with holy water, and blessed by words said over her.

She is long widowed. She has one son who is too overwhelmed, sad, guilty, or maybe just self-absorbed, to visit his old mother. Perhaps he is afraid to be orphaned—what I’ve lately understood as an adulthood fear, too. He makes decisions over the phone and often in opposition to what the clinical team recommends. Although Margaret can no longer swallow, she has a peg tube inserted in her abdomen for artificial nutrition feedings. She chokes on her own saliva—her face turning red as she coughs violently until a nurse can suction her throat. Despite the staff’s best efforts to protect the feeding tube, she regularly pulls it out and must go by ambulance to the hospital to have it reinserted. She contracts infections from this hole in her stomach, from hospitalizations that expose her to all manner of bugs, and from general frailty. She remains a Code A, which means if her heart stops, the staff must administer compressions and electric shocks to her chest, among other invasive procedures, to attempt to revive her.

In this state, she blesses those who pass by her and likely those who pass over her, too. She draws us in and blesses us, covering our heads in the sacrament of her touch. She is a prophet, anointing us reluctant luminaries, baptizing us into the passion of all flesh, all suffering. She is a church elder: Are any among you sick? Call for her to pray over you and anoint you in the name of the Lord. She is the woman at Bethany pouring her alabaster jar of ointment on us, preparing us for our own burials. I promise to keep telling what she has done in remembrance of her.

 

“I hope you’ll still laugh at my jokes when I have dementia,” I said to my husband Ryan on an evening walk not long after my thirty-fourth birthday. It was the first time I had tried out my new resolution to stop saying “if I get dementia” and to start referring to the time “when I have dementia.” I felt the catch in my throat, a node of reluctance, but I was committed now. I had heard of this turn of phrase from a fifty-something nursing home administrator who said she uses “when I have dementia” to reflect a calculation of her odds, given her particular family history and the fact that mental decline is probable as we age. I appreciate her tough-minded devotion to naming her probabilities. All of my dad’s dad’s siblings died with Alzheimer’s, except the one who was killed in North Africa during WWII. I sweep the thin, spiral bound Casteel Cousins, a family history written by a genealogist cousin, and uncover the ubiquity of dementia:

Esther’s mind, which had been so competently organized and managed everything, was fading.

In Bobby’s last few years, the gradual and terrible debilitations of Alzheimer’s disease forced her to withdraw, first, to a homebound existence, and then to a dependent life in a specialized care facility.

Apparently he had Alzheimer’s disease, which has afflicted other members of the family. Being physically strong, Richard survived for several years, but eventually this disease caused his death.

For over a decade my mom’s dad lived with dementia, and apparently his dad had exhibited the same sort of progressive forgetfulness in his old age. Particular bloodlines aside, the chance of getting Alzheimer’s disease, the most common form of dementia, is one in nine after age sixty-five and one in three after age eighty-five. Women are disproportionately affected. I am preparing.

My syntactical conversion from if to when reflects not only my statistical realities but also my devotion to closing the psychological distance between those who have dementia now (“them”) and those who do not have dementia yet (“us”). It reflects a larger life project to embrace persons who have dementia, to deconstruct negative and stigmatizing attitudes toward brain disease, and to construct a more excellent way through dementia’s snares. It reminds me that dementia is the story I am inside, now. Dementia is not my future disease; it is my present healing. Dementia is forming my unformed moral substance; it is uncovering my hidden frame; it is testing me and knowing my meager thoughts; it is telling a new tale of old senses; it is resurrecting the neglected poetry of bodies; it is dislodging the supremacy of little gods of little reason. Dementia is teaching me to love (others, myself) beyond measure—that is, transrationally.

I choose to incorporate “when I have dementia” into my lexicon, which means I have a choice not to, which means I still hold a privileged distance. I can say “when” and proceed with my daily life, by all practical measures, without dementia. Nevertheless, I hope it opens portals of empathy and passes into a spiritual practice—and by repetition, pushes wider the walls of my small heart. By bloodlines, dementia may circulate within me. By the discipline of attention, I may circulate within dementia. I am preparing and practicing for narrow passages now.

 

At a workshop I facilitated on dementia and spirituality, in which I introduced the if-to-when switch, a woman angrily approached me at the break. “I refuse to say ‘when I have dementia,’” she declared. “I will not claim dementia as inevitable for my life!” When I tried to explain the purpose as lowering psychological barriers and increasing compassion, rather than expressing an actual desire to have the disease, she cut me off: “You claim what you name, and I will NOT claim dementia!” Her language struck me as vaguely familiar, as words from some vocabulary I had once known more intimately but could no longer readily recall. When I recounted the episode to a friend, he responded, “She sounds like Joel Osteen!” Ah, yes. That was it. She was preaching a version of the prosperity gospel: if your personal faith is strong enough, you can triumph over all manner of human shortcomings; any negativity—that is, any concession to human finitude or limitations—reveals a lack of faith and thus invites negative consequences; the power of positive thinking can redeem any predicament. The particular permutation on the prosperity gospel she espoused reflects the Word of Faith movement and its emphasis on the power of the word, spoken by the faithful, to claim personal blessings of health and wealth. In my estimation, this gospel fails to take into full account one central fact: dying, in all its manifold forms.

I suppose I have decided to name and claim dementia—or, more truthfully, dementia has named and claimed me. I was not seeking such a tangled trajectory. It pursued me like a tireless lover, beckoning me to arise and come away. I simply came close enough, for long enough, for it to touch me and anoint me into a different order—placing its crooked seal upon my crooked heart. For the seven years I served as the chaplain at a nursing home, the residents in the dementia unit kept drawing and redrawing me, kept searching me and knowing me. Their honesty and affection, their desire to connect in a place beyond words, captivated me. Stripped of their powers to name their reality with the precision of finely spoken words, they claimed me another way—through the astonishing transmissions from their inscrutable hearts. The growing awareness of their afflictions, what they too-often endure—talked over, treated like children, rushed passed, no longer accounted as individuals but discounted as Alzheimer’s “victims”—pierced my soul. A hot coal began to burn with a raging love, singeing my heart, my lips, the tips of my fingers, as I tried to arrive at a true word. The closer I came to dementia, the more convinced I grew that the social response to dementia creates as much suffering as the disease itself. Persons with dementia and their care partners often find themselves forgotten at the exact time when they need the most care. Friends and family stop calling; faith communities quietly withdraw; physicians offer little support outside prescriptions; public policy turns a blind eye to care needs, opting for sexier spending on research for ever-elusive cures. Pastoral theologian John Swinton says the problem is not so much that people forget, it is that they are forgotten. The problem isn’t simply their deficits—it is our distance. Not only do they miss the gift of our presence; we miss the gift of theirs.

So here I am. Contemplating, I attend to what is before me.

 

When I have dementia, will I be like Helen, who asks repeatedly where she lives and if she belongs here? Will I be like Rita, who possesses an easy laugh and prays ceaselessly? Will I possess the unflappable self-assurance of Lilly, who remains convinced she will walk again even though she has been wheelchair-bound for years, and who says she could have pursued a romantic relationship with Paul but decided to spurn his advances? (Paul is the family member of another resident, and Paul is gay.) Will I recount a fixed story that seems both fundamental to who I am and also slightly off-kilter, like Di, who tells over and over of her kindly, petite mother who once slapped a woman on the street for making a racist remark? Will I be like James and write poetry? Will I be like Rachel and weep in my hands, mourning the losses too many and too fractured to name? Will I be like Joe and tuck my head in my shirt to retreat from a world that does not recognize me? Will I summon the compassion of Suzanne, who holds the hand of her neighbor when she cries? Will I be like Regina and grow angry and violent, falling down again and again, because I refuse for anyone to touch me while I am walking? Will my perversions become apparent like Grace, who sings “God Bless America” in one breath and in the next, shares the size of dick she prefers (a pornographic 18 inches)? Will I be like Joanne and sleep the day away? Will I be like Eileen and grind my teeth? Will I be like Freddy and drink too much and think others are entirely beneath me? Will I have strange and powerful delusions like Virginia, who sometimes believes she is a lioness? Or will I be like Margaret, always reaching, always searching for warm skin to bless?

I attempt accuracy in my descriptions of each person, knowing all people are more than, different from, and irreducible to the signifiers assigned them. Maybe I will be (and am) like all of them in some way—in the way we carry a heavy accumulation of little things from those we encounter. Perhaps even now I surge with the universal charge of the Whitmanian vision—“I am large, I contain multitudes.” From my multitudes, I wonder what distinctive marks will emerge when I have dementia. And who will note them, who will reckon them significant? Who wishes to walk with me? I am preparing now. I am trying to float as many messages of love down the dark well of my spirit—trusting they may accumulate in the cavernous places I cannot see yet and one day reach my lonesome soul. I am priming my husband for my attempts at wit. They can only land, after all, if I have a receptive audience. I wonder which of my words will come out all wrong, and which will come out shockingly right and offensively honest. (Please do not dismiss, out of hand, the truth in the latter. When Tim saw me coming down the dementia unit hallway, he dropped his head into his hands. “Oh no, not you again!” he blurted. “Are you here to ask me a million questions again?” I had met him the day before and had asked him many questions in an attempt to get to know him. While his rebuff hurt my feelings, he was absolutely right. I had needlessly taxed him, depleting his limited mental resources and energy, by my inquisition.) Which words will get stuck somewhere in neural transit? What if my emotional palate is not large enough to name what I am feeling? And what if your emotional palate is too small to understand my strain and the many meanings of silence? I suppose writing carries the same hazards.

 

When the time comes when I have dementia, I ask you to become the woman who lights a lamp and sweeps the house, searching tirelessly for her one lost coin until she finds it. Plunge into the tiny cracks and dark corners. Rummage through forgotten spaces. You must upend the entire house. Only if you ask, shall it be given; only if you seek, shall you find; only if you knock, shall the door open. Missing me one place, search another. I am waiting somewhere for you. My treasures are hidden, and what you unearth may strike you as at once exquisite and terrible. Handle them all as valuables. This will be your tallest task: not to lose heart, to launch a search party and never call it back, to live consumed by a parable, to stalk the small movements of another’s heart as if the integrity of some ancient vow were at stake. I do not know which coin will be lost when; it does not matter. I do not know what can be retrieved. I will play the searching woman while I can, and soon I will be the coin.

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