“Sit down, Dad, just let yourself relax,” I urged. He was going to miss the bowl but cleaning up pee didn’t worry me. Finally, he sat.
The Puppy Parade was still on my mind, whether as entertainment for Dad or a social obligation, I cannot tell you why. So I hurried him. Peeled off his shoes, socks, sweatpants, and diaper. Worked soothing cream into his pressure sore. Slid a clean pull up over his ankles, followed by fresh socks, soft sweatpants, and dry Hush Puppies. I persuaded him to stand at the bar again, so that I could push a towel around the floor with the toe of my shoe, to absorb the sheet of urine that hadn’t made it into the pot.
Helping Dad at this stage of his disease was like dressing the Patty Playpal dolls my sister and I had begged for and received from our parents when we were nine and ten years old. The dolls were tall, the size of large toddlers, molded from hard plastic. Mine had shoulder-length brown acrylic hair. Like Dad, her joints didn’t flex.
Dad has one up on Patty Playpal, I thought to myself. At least his knees can bend. Sometimes.
I coached my father back into the wheelchair.
“Do you want to catch the end of the Puppy Parade?”
“Sure.” He was always a sport.
Back to the living room we rolled. The show was over, except for the final scoring. Biscuits had been dispensed to each resident to reward the dogs, whether they had “won” or not. I watched Miss Annie take a bite out of one of the treats she held. Dad didn’t try to eat his doggy stick but neither did he reach down and feed it to one of the contenders. Nor did he pet a dog.
Ashley asked if we’d like her to run through the script again, just for us.
“No thanks,” Dad said.
Back in the room, I set up cheese and crackers and some cider on my father’s tray, but he was too exhausted to eat.
I hailed the young, kind Hispanic caregiver passing in the hall. “Hey Jackie, can you give us a hand?”
“We don’t need help,” said Dad. “I just want to dive into my bed.” That was an old trick that had trapped him on his hands and knees in the past. I insisted. At my signal, Jackie lifted his legs onto the bed.
“Now we are going to turn you over,” I said. We logrolled him onto his side. Then I perched next to my father on the bed, both of us worn, and to what end? Even I felt stiff and frustrated, but I was able-bodied and could freely choose anything I desired that moment: to move in and out of the patch of sun shining in on Dad’s comforter; to reach for a handful of almonds on the bedside table; and later, to slice and stir vegetables for my dinner with Jeff.
“I could just weep,” my father said, and I noticed his cheek was wet. I wiped it dry with a tissue. “I don’t see how my head can process all my tears,” he said.
I had wronged him with all that forcing. I stroked his head, realizing that while it was hard to be in the position of caregiver, it was nowhere near as challenging as being conscious inside a body whose brain is unable to direct its own movements. My job wasn’t to simply manipulate my father’s limbs, his clothes, his caloric intake, his caregiver schedule. Entertainment shouldn’t be my highest priority.
I understood the pattern better when I watched other people overdo. On a Wednesday morning, I dropped by the Landing to deliver supplies to Dad’s room.
My father was balanced on the very edge of his bed, his eyes tightly squeezed shut. He was flanked by two caregivers, who looked as if they were holding up a 140-pound sack of flour between them. He had that little muscle tone. He was far, far away inside his head and would not respond to my greeting.
The two women were flushed and damp with effort, both wearing disposable neoprene gloves. One was trying to wrestle a blue denim shirt over his T-shirt. My father’s elbow was bent like a chicken’s wing, and it seemed to me that unless he either relaxed or woke up and participated, that shirt would never go on his body.
“Why not try a stretchy cardigan sweater,” I suggested, and so they did. Then he was hoisted into his wheelchair, and from there to his recliner.
That was another thing: when I wasn’t in the room as much, the caregivers squabbled, some of them. About trading shifts, about who should take out the trash, or shave my father—or not. About who stayed too long after her shift ends, just to boss and annoy the next. About whose blood pressure had shot to 170/129 from the stress of it all. Was it my job to care for them too? In this room, with this impossible task, we were all laid bare—our essential selves—by the slow duty of caring for this man as he inevitably declined. Each woman tried, I knew, to match my expectation to give Dad as much dignity and quality of life as possible. Each one of them shone like the purely minted love they were, each in their own way, some of the time.
And me, I kept wrestling with: how do I know what is enough? Dad’s illness was a puzzle I believed I must solve.
I said to my friend Norine: “It’s just that I know that I have the power to make Dad’s life so much better!”
She replied: “But this is your father’s life, Susan. There is no way you can make it all right for him. Your dad will have to negotiate this bleak landscape, what looks like a moonscape, himself.”
Another friend told me how her demented father had become needy and frightened, even though he still lived independently in an apartment. He had begged her to take over his care. She traveled periodically to see him, but she told him bluntly: “Dad, I am not your caregiver, or your mother or your wife. I want to remain in relationship with you as your adult child.”
The following week, I requested—and was granted—hospice care for my dad. At that time, the hospice industry was growing steadily and I knew many people who had benefited from its services. We didn’t believe he was close to death, but he’d lost significant weight and muscle mass, and the extra attention would help. A hospice music therapist serenaded him, and a home health aide helped with bathing. And others: clergy, nurse, social worker, each one so very kind.
A healthy red knot in fine breeding condition. Photo by David Moynahan.
Dad was deeply startled: “I thought hospice was for people who are dying?” he said. The caregivers were uneasy too. Beulah said she felt like the buzzards were circling. Jill noticed that when hospice personnel were in the room, the Landing staff vanished, leaving him in wet clothes in bed. Had I made a mistake? Had I misjudged how the balance of what we had in place might be thrown off by bringing on more help, especially people attuned to the dying process?
The next Saturday, buoyed by Dad’s extra resources, and therefore, our freedom, Jeff and I launched our boat in Apalachicola to walk a remote outer stretch of St. Vincent Island.
A red knot hunkered down at the water’s edge, a bundle of feather and bone pressed against the sand. We’d been admiring the knots as they moved through north Florida on their migration, five to ten at a time, mostly. They fed voraciously, plunging their bills over and over into the wet sand at the water’s edge, reminding me of a host of paper doll birds, so alike was one to the next. But this one had been stopped short in her unimaginably long travels (at least six nonstop days and nights of flight) from the high Arctic to the tip of South America. She had been unable to find and gorge on horseshoe crab eggs and other foods that would allow her to recover and regain weight. This bird wasn’t going to make it.
Her eyes slitted shut, and her bill opened and closed rhythmically. I crouched at a distance that wouldn’t add to her distress, watching her sip the last breaths of air she would ever inhale. Now and again she trembled.
But she was not dying alone.
A sanderling, feisty loner of the winter beach, had nestled in the sand near the knot’s head. I’d never seen a sanderling assume such a position, though surely they do when they incubate their own eggs. Then a second red knot took up a post at the rear flank of the downed bird. Two lesser yellowlegs (tall shorebirds uncommon on this beach) moved in, intervening between the small sheeting waves of the Gulf and the knot. They tilted their heads sideways, ascertaining the knot’s situation, and then
simply stood close.
The four vigil birds—only one a conspecific—were companioning the rare red knot as she died. My human mind ran through its paces. First, as a citizen scientist, I thought I should look for identifying color flags or bands, because red knots are so highly endangered. But her feet were tucked under her body, and I was not going to pick up this bird during her dying. That would be extraordinarily stressful and disrespectful, as well. Then I wondered for just a moment if we should try to take the bird to a wildlife rehabilitator. Considering the eight bumpy miles we had to travel by back to the ramp and then who knows how far by car to find help—that trauma was out of the question, as well. My impulse to rescue was contradicted by the impossibility of capturing and stressing the bird in its final hours.
After a few minutes, I didn’t stare at the bird anymore. I relieved it of my fierce attention and replaced that with love and compassion. The four vigil birds showed me what to do: simply be with. Simply offer tender presence to the incapacitated one. They taught me how to bear witness, and their bodies blurred through my tears. As I sat quietly on the sand, I watched the sun glimmer on the yolky limbs of the yellowlegs. The wind lifted the delicately barred back feathers of the downed and dying knot. The tide continued its rise. We all continued to breathe. Silently, I renewed my vow to work on the behalf of all the shorebirds still tying our planet together with their journeys.
In the same way, even with hospice in place, decisions regarding Dad’s care and treatment weren’t always clear. Death by dementia, we were learning, was a very slow process, even if you’d finally accepted its inevitability.
On a cold afternoon in February, the Landing called: “Your dad has fallen, significant face wound, you may want to come in.” I traded out my exercise clothes for warm hospital layers and entered a chaotic scene in Dad’s room. The space was crowded. Luke, the handyman, was there with his rug shampooer and a bottle of OxiClean; several Landing caregivers and the bus driver stood by. Our caregiver had turned her back on Dad briefly, just as a stray impulse propelled him out of his wheelchair onto the floor, by way of a sharp-cornered hospital table.
Blood was pooling into Dad’s left eye, but he squinted at me through the right, very happy I’d arrived. “Could we take care of this with butterfly bandages and avoid another hospital ordeal?” I wondered out loud.
“No,” said Danny the nurse. He wiped away the blood and showed me two impressive gashes. Band-Aids wouldn’t suffice.
An ambulance was summoned. I called a retired doctor friend to help me practice saying no to unnecessary tests or procedures in the emergency room. Just as I’d feared, the emergency room doctor wanted to prescribe a CT scan to check for bleeding under the skull, a subdural hematoma. What would they do if there was one, I asked? “We’d perform surgery to drain out the blood,” the doctor said. “Which would require a brief hospital stay for your father.”
I edged my body so I could block Dad from a necessary conversation I needed to have with the doctor. “My father has been on and off hospice three times, and we have a do-not-resuscitate order,” I said. “I do not want to seem irresponsible or cause his death, but my dad has just turned eighty-eight, and he doesn’t do well with anesthesia or overnight stays in hospitals. We’ll take just the stitches, please.” A woman known as the “sew ’em up” nurse agreed to add Dad to her queue before her dinner break.
Dad’s gashes zigged across his forehead, zagged down the bridge of his nose. But he didn’t flinch when the nurse stuck a needle of Novocain right into the pink flesh parting his brow—it was at least three quarters of an inch deep. “That was painless,” he said.
The nurse was a tender wizard. She showed me how she decided where to place each suture. “You can’t sew a continuous straight line as if you were hemming a dress, because then if it fails in one place you lose the whole line,” she explained.
When she had packed up her gear and left, our spate of good luck came to a halt. It took another hour and a half to nudge someone to apply a line of antibiotic to Dad’s stitches, do the paperwork to release us, and help us figure out how to return Dad to his facility. We hadn’t taken him outside the facility in more than a year because he had so little body tone. Jeff and I simply couldn’t manage his physical transfer into one of our cars. I learned that although ambulances will bring you to the hospital, they will not take you back home.
“Your nursing home is required to figure this out for you,” said the unhelpful girl in the nurses’ station. I called the Landing and left a message on the answering machine. “We are helping other patients, please leave a message,” the recording said.
Jeff brought us take-out dinner, but as the hours passed, Dad became more and more restless and was losing coherence. I called the nursing home director twice at her home. Over the phone, I could hear her baby screaming—it was her bedtime too. “This time of night,” said Ashley, “we have no one on staff who can bring Bob back home. I’m so sorry.”
Like flies on tarpaper, we were trapped.
The unhelpful girl at the nurses’ station said: “If you have $150 in cash, one of those freelance stretcher transport companies will probably take him home.” Finally, Jeff cajoled a male nurse to help him lift Dad into my car. When I pulled out of the brightly lit parking garage, Dad said, “It looks like the Newark airport terminal!” He hadn’t been out in the nighttime streets in several years. It was 10:00 p.m. before we managed one final heroic lift to get Dad out of the car and into his wheelchair, finally, his own bed.
Back in our own home, I watched my husband pack his duffel for a three-day sampling trip in North Carolina. Jeff was near tears, telling me about the new Florida governor’s proposal to cut growth management in Florida. We had planned a cozy fireside night together over a leftover chili supper and Netflix. At least we had those options and dreams.
The outcome of my father’s life was clear, but not the timing of the end. Despite the stitches Dad had just endured, we had begun to see that death by dementia was not a death by a thousand cuts but, as David Shenk writes in The Forgetting, “by a thousand subtractions.” Here is another way the catastrophe of human dementia parallels the incomprehensible losses we are perpetrating on the biosphere that is our only home. In both cases, a universe is smothered: living fibers and cells in the human brain, and millions of species on the Earth—of which the red knot and the American oystercatcher and the snowy plover are only a few. As we plow the rainforests and heat the oceans and the air, we destroy (subtract) incalculably complicated webs of interdependent connections. We unravel the world at our certain peril.
CHAPTER 16
Pear Mudra
When you pushed through the Landing’s enormous double doors on a lonely Sunday, a gauntlet of residents lined the foyer to greet you. This day, a great wedge of man with one eye patched, the other squinting (a pirate come to the nursing home), stood watch. He fixed his good eye on the square bakery box I carried. “Cookies?” he guessed. “Cake?” It was my birthday, and I’d brought treats for Esmine and Dad.
In a nearby chair sat Miss Annie. A white pop-bead necklace circled her throat. I squeezed her hand and she took my mine and turned it between her own two palms. “My land!” she said, and then she studied my hand some more and then she said, “My gracious! My goodness gracious!” The words caught a little on her dentures. Miss Annie was always ready for delight, this time the simple fact of my warm hand in hers. Not so much that I paused to greet her but that this thing—my hand—had passed suddenly into her world. But I had to keep walking toward my own father, down the long halls and around two corners. “Goodbye, Miss Annie, I’ll see you soon,” I said, withdrawing my hand.
“Sue!” My father cried. “You came home!” From his recliner, Dad, dressed in a sleeveless wool vest over a flannel shirt, opened his arms, inviting me to come close and hug him. I’d noticed how he physically reached for what he wanted now, stretched his arms out slowly, first his right, then his left to meet the desired objec
t, whether a navel orange or a daughter.
I inhaled the familiar aroma of his neck. A friend had asked me: “Don’t you miss your father the way he was before his illness, the person you knew as your father?” But no: his physical diminishment had not altered his essence, nor the big love in his heart.
Dad’s last birthday, 2011. Photo by Jeff Chanton.
“Your dad, he was just telling me how sad he is,” Esmine said.
“Why are you sad, Dad?” I backed away from his embrace so that I could look into his eyes.
“He says he is homesick,” Esmine replied. “He was wishing his children were here. I told him I was sure you would come today.” And there I was, with pastries, to celebrate my birthday with my father.
“Pick which dessert you’d like,” I said.
Dad pointed to the red velvet chocolate cupcake with sugar butter icing and tiny red sprinkles. Esmine selected a square of carrot cake.
“We were singing before you came in.” She passed us each a napkin.
“Ahhhh . . . Ohhhhh . . . Ahhhh . . .” Dad broke into a kind of chant, just as natural and unnatural as could be.
“Before that one, we were singing the amen song,” Esmine said.
Dad fell into his cupcake, a total sensory experience. I knew he couldn’t eat something that delicious and focus on conversation at the same time, so I unpacked groceries (four boxes of Kleenex, cheese crackers, and dish soap) and checked his bowel movement chart (X-large, loose, 1/28). Even on a holiday or birthday, my visits were always a combination of scanning his supplies, health, the caregiver log, and being as present as possible with Dad, the man himself.
I reached for Dad’s empty plate, and then Esmine’s.
“Many nights as I gather and stack the supper plates to return to the kitchen, your father will ask me where I’m going,” Esmine told me. “He’ll say, ‘Don’t bother, I’ll take care of the clean up tonight.’” Dad’s lifelong habit was to be of service. Now he could do almost nothing for himself. But he still owned the impulse to help.
I Have Been Assigned the Single Bird Page 16