Issue: Fall 2016
I went to the woods for respite care. It was the woods of my mid-twentieth century childhood, my roots in the trees of Forestville, New York. Our house sat on a nine-acre parcel of land along one of its main streets. Cedar trees hugged the house’s east side; sugar maple trees its front, and a black tupelo, tulip tree, red oak, sugar maple, and black walnut tree flanked its west side. Lilac trees and an ancient spreading horse chestnut guarded its back. Behind the horse chestnut, a grove of willow trees cycled through birth, death, and rebirth. The tumbled down trunks of an earlier generation of willows served as our playground. Clambering over rough-barked trunks, we became bough-grasping, limb-hanging arboreal gymnasts. We called it “The Favorite Tree,” uniting all the willows past and present into one.
There throughout the 1960s our ponies sought shelter from the summer sun and we joined them lying on their backs under the willow’s canopy.
Nearby, plum, cherry, and apple trees planted in 1949 awaited our feats. Amidst the branches, we each became the ruler of her own domain, our currency the fruit in our hands, cherries our gold standard. Storytelling occurred in the midst of a nearby stream dotted with child-sized rocks for sitting and listening.
The ponies broke through the orchard’s barbed wire fence for fruit from the forbidden apple trees. Johnny Appleseed-like, they sowed seeds throughout the pasture via their droppings. Behind this pasture, stood the woods of my childhood, the premiere location for hide and go seek played bareback on ponies.
In 1969, the Favorite Tree was photographed. Those four feet trees pictured are now logs on the ground. The six-inch wide willows on the border have grown to be six feet across, inheriting the role of being the Favorite Tree. In that same time, the ponies died and a new-growth woods of hawthorns, locus, pin cherry, black cherry, and black walnut trees joined the pony-seeded apple trees in taking over the pasture. A pond replaced the magical story creek and children who once sat midstream became adults and moved away.
During the first decade of the twenty-first century, I frequently returned home to share the care of my mother who had Alzheimer’s. My parents lived in our childhood home, and I walked in the old and new woods, the orchard, and under the Favorite Tree—now both places and memories.
I arrived in Forestville one April to help my 91-year-old hospitalized mother. She was in the middle stages of Alzheimer’s and had suffered a mild heart attack. My sister Nancy transferred caregiving to me, commissioning me to convince the doctor that Mom was discharge-worthy, and to work with physical therapists in reclaiming her strength. A weight gain (to 165 pounds) required new clothes for her. I hurried up and down the back steps of the house: to and from the hospital, the pharmacy, the grocery store, J. C. Penney’s, the neighbor’s house, the compost pile. In my determined frame of mind, I never noticed the cone-shaped blossoms of the horse chestnut tree. I never lifted my head to see, or seeing, didn’t register the pink buds beginning to appear fifteen feet away.
My sister Jane arrived the following week. I stepped outside, without a to-do list, without a timer going in my mind. The swallows swooped out of the barn, the cardinal rushed away from the bird feeder, the frogs berrupped at the pond’s edge, flinging themselves in as I came near. Muskrats scooted back down their holes into the water. If the ghost of my carefree and spontaneous younger self ran alongside toward the orchard, I could not say. To my journal: So much I haven’t noticed caught in the drama of a sick, elderly person.
Reaching the woods behind the Favorite Tree, I stopped, soaking in the sounds of bird songs. I knew I’d have to return inside, and slowly turned full circle recording the moments. Later my son created three sound tracks from my brief videos.
The morning of my departure, Mom asked, “I’ve been sick. How long have I been sick?” Pointing to a calendar, I traced the long stay in the hospital, her release, her recuperation. I choked up saying goodbye.
“Did you come because I was sick or were you already coming?” she asked.
“No. I came because you were sick.”
“That was nice.”
I cried on the plane. It was very, very hard. Not alot of time to be self-reflective. One doesn’t want to sit still in the middle of a cold stream; just keep moving. There is a certain unrelenting nature to helping. It’s exhausting and no one was there to spell me.
What was the gift of this week? That Mom indeed did get better.
During the last year and a half of my mother’s life, as Alzheimer’s colonized more of her brain, my yearning for the woods was in direct proportion to my inability to escape the caregiving duties within our house. I suffered the doubling of loss, both of mother and woods—a present loss mimicked the past primal loss of the child’s experience of the outside, unmediated by consciousness of being “outside” or “playing.” Parenting a parent, the grown child became the responsible one; she couldn’t run off after supper for one last climb in the Favorite Tree.
On a Saturday in August, I was en route to Buffalo on a rare direct flight in a tight-quartered American Eagle plane. Before take off, a flight attendant asked the exit row passengers if one of us would give up our seat. Behind her stood a man at least 6’5”. I surrendered mine, thinking “Oh well, it’s a hell of a trip anyway.” I was returning home to help my now 94-year-old mother, whose Alzheimer’s—or something else—caused her suddenly to become very weak and unable to climb stairs.
Both flight attendants thanked me as I moved to a different seat on the plane. I told them I picked the exit row because of my claustrophobia. Once in the air, their thanks continued; before serving anyone else, they brought me a margarita. Relaxed, I turned to my journal wondering, what does my humanity ask in relationship to my mother? Whatever my mother needed, I would try to provide, but an anxious alarm about her current condition thrummed along with the airplane’s engine. Writing in my journal prepared me to turn my mind toward caregiving as the plane headed north from Dallas.
Remember why I am there –
the I-thou relationships of caregiving
the connecting – through touch & attention.
During college, I read Martin Buber’s I-Thou. In the crowded space of the American Eagle, without the book, I recalled that Buber suggested there were two types of relationships, I-It and I-Thou. The I-It relationship is one of goal-directed verbs, of activities with an object. Buber argued that grace is found in the I-You relationship. The “You” (the translator felt this was more appropriate for Buber’s ideas) established the world of relation. I wondered, Is this caregiving?
To make her life better
(I-It : It’s just a job. Can’t relate to the care receiver).
the care-giver’s choices –
I – thou
the I-thou relationship as one of grace
Long-distance caregiving is like that flight in a small plane: giving up one’s space for another. My father greeted me saying, “Your mother had tears in her eyes. She knows there’s something wrong and that nothing can be done about it. She doesn’t have long to live and neither do I!”
Physically weak, my mother could not articulate anything about how she felt except “Different.” I loaded each piece of food on a fork and placed it at the edge of her plate, prompting her to reach for it and move it to her mouth. I slept downstairs on the couch to be near her. At 1:45 a.m., new responsibilities with no clear guidance woke me in a panic: Should I get my mother up to urinate during the night? Should I change her Depends? What mistakes am I making that I don’t know I am making?
In the morning, I dashed outside to greet the familiar space behind the house: past my father’s garden, the wild blackberries, the old orchard, and the Favorite Tree. Then as a beautiful day tempted me to follow the path into the woods, I turned back toward the house. – a beautiful day & I was trapped inside – brief forays out – tethered – tethered through responsibility.
Nursing my mother at home, we avoided dealing with the institution of the hospital; instead, we confronted the institution that was my father, her main caregiver and emotional anchor. He was attentive to her, but often impatient and angry with his daughters. “Why did you leave the door open?” he barked. Or, after a mistaken attempt to jazz up the food, “We don’t like exotic foods!” (My mother had, but I wasn’t going to argue the point.) I suspected that sometimes he said, “Your mother doesn’t like such and such” when it was he who did not like it. These were all a part of a regular caregiving visit. But when she became so weak she could not climb into bed, he began to lift her. The new hospital bed we brought in was several inches higher than their previous shared bed. He failed to recognize the challenges of the new height.
I helped Mom get ready for bed, brushing teeth, changing clothes, and then called to my father who wanted to say goodnight. A transfer chair helped her get from the bathroom to the new downstairs bedroom. My father bent to help her transfer but did not understand she was too weak to push herself out of the chair and pivot. I reached out to help as he tried to lift her up. But the wheels on the hospital bed were not locked and the bed started to move away. I grabbed Mom to keep her from falling and lifted her onto the bed. My father, in turn, collapsed on the transfer chair saying, “I have so much to learn.”
The next morning, before heading downstairs, I wrote:
my father yelling at me because I had left the door open & I thought – “he has no control – but anxiety about Mom going to her [medical] tests”
& so what can he do
he can yell at me
I simply looked at him & said “father”
He is upset that she is fading.
He is invaded.
He is losing control.
Mom’s rapid deterioration concerned the doctor. She’d lost ten pounds—from 106 to 96. Her blood pressure was 140/64. In this age group, the doctor said, if they have a set back, they usually don’t come back to where they were. Three possibilities could explain her weakness: an infection, a small stroke, or medication problems. He recommended a nursing home. My reply that we wanted Mom to stay home prompted him to suggest transferring her medical care and oversight to hospice.
Two days later, before hospice arrived, I grabbed an early morning walk in the new-growth woods, foraging blackberries cold from the night air. A raccoon swished away, the back of a white-tailed deer hopped through the many-colored wildflowers along the wood’s edge. I once again turned to go inside.
The hospice social worker stayed with Mom while in another room the hospice nurse completed a four-page admission form with Mom’s caregiver and friend, Freddie and me. Possible scores ranged from 0-60; 40 was needed for hospice care. The questions sought to determine whether her diseases were life limiting: Is she unable to feed herself? Does she refuse to eat? Is she completely incontinent of bowels and bladder? Is she unable to walk or talk? Does she wander? Is she belligerent? She received a 36. Stay in touch, they urged, as they left with no offers of help. Their questions frightened me, like a movie preview offering forthcoming scenarios.
I helped Mom eat her lunch, then cleaned up the kitchen and washed clothes. Once she was resting, I took the baby monitor for listening to her movements to the apple orchard, sat down on an apple tree trunk, and called my sisters. Outside embraced me, amongst the old apples trees. My trunk throne brought me near the earth, absorbing the cider smells of the apples scattered on the ground. Tears dropped onto my notes. I tried to keep the panic out of my voice, to be practical, focused, as I told them that Mom flunked hospice eligibility and that we needed to add additional caregivers. We identified co-morbidities with Mom’s Alzheimer’s: heart disease, pre-diabetes, weight loss, old age, and legally blind with her macular degeneration. Would these bring her hospice score to 40?
We agreed to hire additional caregivers, with Nancy coming to help. Nancy warned that discussing these ideas with our father would be hard. “He wants to be powerful enough to take care of all of it and it is very hard not to be.”
In the evening with Mom in bed, I introduced to my father our plans to hire more caregivers as we tried to get Mom under home hospice care. Tears and anger mixed as we argued about whether Mom would accept care from “strangers.” Once he agreed to our plan, he cried out, “Why are you taking your mother away from me?”
“We aren’t taking her away from you. We are trying to make it so that you have quality time with her at home.”
He corrected my misunderstanding. “Why don’t you let me get her ready for bed? That’s what I had been doing.”
What a misunderstanding. I thought he wanted me to take on those tasks. Overwhelmed by Mom’s needs, I missed the clues of the I-Thou relationship already in place.
Upstairs, lying down on my bed for a few minutes, I turned to my journal.
Trying to tamp down the upsetment at the changes in Mom.
What Mom can do:
She pretends she has understood when she hasn’t.
She does understand some things.
She knows Daddy is joking with her. “You are my favorite wife.” And he is hoping to elicit her response, “I hope I am your only one.”
That shows she has heard him and processed the information.
Not letting Daddy have to face this on his own even though he would prefer to.
The diagnosis came on Thursday: a urinary track infection and I drove to the pharmacy to collect an antibiotic. The UTI explained some of the downhill progress, though the nurse warned that a UTI often exposes a problem rather than causing it. Before the antibiotic took effect, I felt my caregiving constricting to I-It.
The weight of it all. When I see Mom as antagonistic to my goals (I want her to finish eating so I can clean up)… (finishing the meal versus eating the meal, completing the task versus the process of enjoying the entirety of the task), is not the kind of caregiving we want for ourselves or our loved ones. Yet how great the temptation to do precisely that. I want to get on with something and am interrupted by the task of caregiving. When did I hurry Mom, or take over something that she could do herself such as putting on her socks. Is this what happens in nursing homes? The tasks must be done rather than the people interacted with?
Each sunny and beautiful day I wanted to be in the woods, but each day I stayed indoors: changing diapers, helping Mom stay clean, transitions in and out of the transfer chair, trying to help her eat, calling possible caregivers to set up interviews.
She began to regain some strength. When she used her shoehorn to put on her shoes I celebrated. We used a walker to walk through the downstairs. I note, Daddy’s love for Mom has been great – large hearted – but he is tired.
Mom and I went for a car ride. We headed lakeward, to the edge, lake and shore, mother and daughter. So tired, I watched the churning waves claim the land. We sat quietly for a few minutes. Then, my mother turned to me, “Can we go now? I’m tired.”
“Of course,” I said. Though I wanted to stay, let my mind merge with the roil of the water, not be responsible for shoring anything up. I started the car.
Friday morning, I took Mom outside in her transfer chair. I commented on the breeze. She said, “It rhymes with Louise.” And sang, “Every little breeze seems to whisper Louise…”
I join in, “The birds on the trees…:
Whether I want to or not – the necessity with my mother is to slow down.
notice things to talk about
Saturday I started seeing my father as my enemy for his “your mother likes this – your mother wants this” which seemed motivated more by his needs. Fox news blaring their interpretation of the Democratic Convention did not help. I could not encounter my father’s humanity as mine was sucked into caregiving. “But do you have to do that?” I complained when he once again turned the television to Fox News.
“She reads the tickers.”
“How do you know?”
“She asks me questions about it.”
“How recently has she done that?”
“A couple of days ago.”
I did not believe it and walked away. Behind the barn, the constant chorus of crickets greeted me. I hiked past deep scarlet hollyhocks, vines heavy with ripening tomatoes, big-leaved squash plants sheltering their fruit, and the pumpkin patch. One squash blossom announced itself, this late in the year. Deer scat lay between the sweet apple tree and the peach tree. The late afternoon summer sun lit up the willow. The old apple trees, half the height of the willow tree, beckoned. Carrying the full weight of my parents’ world, including their window on the world (Fox), was more than I could stomach. I wanted someone to rescue me, but I was the rescuer. I sat down against an old apple tree in the orchard. It took my weight and held me upright as I wept.
When I returned to the sunroom, my father turned the sound lower.
Sunday night, my father helped Mom get ready for bed. “Such quiet,” I thought, and then, “I better check on them.” I found him starting to lift her into bed.
About to be yelled at, I act first, and yell at him: “Daddy, you MUST let me do this.”
He walked out but then came back and watched. A previous caregiving experience equipped me with the skills in helping someone transfer from a wheelchair to a bed. I explained to him the steps involved.
Once Mom slept, I asked him, “Do you think you would enjoy rehab if you broke your hip?”
“I just lifted her two weeks ago. I’ve been lifting her for years.”
“Mom has changed. Her movement is less predictable. We cannot afford for you to break something. What would Mom think? You wouldn’t be here to give her the support she needs. Promise me, YOU CANNOT LIFT MOM ANY MORE.”
He laughed, uncomfortably, ”Okay, I promise. But I AM strong.”
On Labor Day, my sister arrived. Listening to Nancy interact with Daddy – so low key – so respectful – I thought – I tried to be that – tried to help with meals.
I have survived this, but sometimes it feels – barely – barely survived. So, so stressful. Daddy makes it so much more than it needs to be.
I’m just so tired, so worn out.
Nancy sparkling with Mom, making jokes, vivacious, caring, interacting with both of them on their levels.
In the morning, Nancy and I discussed their situation. Nancy saw Mom and Dad as one organism. “By increasing his ability to take care of Mom, you increase the likelihood of his own better health.” She offered the analogy of a newborn: you do better caring for the newborn by equipping and increasing the ability of the mother to care for the newborn. I added, “Daddy’s happiness and relaxation equals Mom’s improved state of health.”
During the past week Daddy could not provide the care for Mom on his own, but my doing it separated him from Mom, creating a fundamental crisis. I’d been wrong in my thinking: The I-Thou relationship was Mom and Dad, one organism. I ruptured it when my concern for safety in transferring Mom took away one of Daddy’s acts of love, helping her go to bed.
The shock of this realization propelled me outside. The sun lit up the majestic willow as I walked by, pulled once more to the apple orchard. The thud of falling apples echoed throughout the woods. I bent down to examine them. The freshly fallen apples on the ground felt like hard small rocks as I walked on them. I stepped around the soft, rotting ones.
Every minute another apple fell. I tried to catch the sight of an apple falling as I walked through the orchard. By the time I heard it, it was too late to see it. How amazing the number of apples growing on one unpruned tree. Pulling on a dead limb unleashed apples on the tree next to it. The sound of the apples being released—a cracking, then a swish into and through the leaves, until thumping, bumping, the apples hit the ground with a thud followed by a lighter thud from their bounce.
Pulling on the branches became a game of apple marbles, especially when two fell together and collided as they landed. Some apple clusters did not want to budge. I pulled and pulled, giving the apples a ride. The tree returned the play: big shakes of the tree and no apples fell, but when I turned my back, the telltale thud.
Once more, I sat down in the apple orchard. Once more, I felt the old apple tree support me. To my journal: Caregiving is lonely. Whatever the circumstance, to pick up and leave your own surroundings to become a caregiver, to provide caregiving, is lonely. One thing about taking care of an elderly parent, I’m homesick even tho’ I’m at home.
Freed from being focused on one ailing person, I experienced the grace of the orchard and its inhabitants: the cricket choir accompanied my scratchy pen’s marks as a few frogs sang nearby. Before closing my journal, I added, When I have had too much of life for one day, the apple orchard is a good place to go. Once more, against an apple tree, I wept.
I left for the airport the next day, but first apologized to my father for getting upset with him. In my customary exit row seat on the airplane, my journal pages absorbed ink and tears. I thought “Seat 13A should be equipped not with a vomit bag but a Kleenex box.”
All last week I could not think clearly about Daddy because his needs seemed antagonistic to my goals: Mom’s health and safety. He was my antagonist. I am only now surfacing from that. Long time caregiver – care receivers, especially if they are partners, often act as though one organism. The care receiver becomes ill, the “well” partner is shaken, anxious, besides him or herself, upset and yet called to provide more intensive care.
I’d come back to the thoughts of the I-Thou relationship with the knowledge of how illness, stress, and a daughter ruptured it.
At home, I searched for my copy of Buber’s I and Thou and found in it something surprising: “It can also happen, if will and grace are joined, that as I contemplate the tree I am drawn into a relation, and the tree ceases to be an It. . . .This does not require me to forego any of the modes of contemplation. There is nothing that I must not see in order to see, and there is no knowledge that I must forget. Rather is everything, picture and movement, species and instance, law and number included and inseparably fused….What I encounter is neither the soul of a tree nor a dyad, but the tree itself.”
Through naïveté, anxiety, and a drive to help, I interrupted one I-Thou relationship. Yet another drew me in. Not the soul of the tree, not a dyad, but the apple tree itself.
Fifteen months later in early December, I returned home to be with my dying mother. As I flew toward Forestville, my sisters and parents gathered for supper in our dining room. “Carol’s coming,” my sisters told my mother. “When’s the wedding?” she asked. Her last words.
Each day, we took turns, each sister, one holding her hands, and one reading, and one sitting in a rocking chair. We wanted Mom to be comfortable and surrounded by love. Tuesday night to my journal: Sad — letting go of Mom – the physical body. It isn’t anything more than that, though the anything means everything — the world through Mom.
Wednesday, Mom stopped eating and drinking. I did not know, physiologically how death happened. I asked Freddie. She said, “Your Mom is definitely telling us each day as she stops eating and drinking, ‘I don’t need this any more. I am getting closer to the end. I don’t need my body anymore.’ Those are her decisions. There is nothing we need to do about it. We have to accept this. She has the right to make this decision.”
“Will it be a steady decline?”
“You lose your strength all throughout your body. Each muscle loses its strength; each organ loses its strength. Our bodies are pretty miraculous. Initially when one part of the body slacks, another one picks up the slack. But for your Mom every organ has expelled all its energy. Every muscle has expelled all its energy. Each thing is shutting down and for each of these there is nothing to pick up the slack.”
On Thursday, a blizzard dumped three feet of snow on our village. When I lay next to Mom, holding her hands in mine, I said, “I love you.” I felt her squeeze my hand.
Friday morning, I awoke before dawn. The snow tumbled out of the sky like confectioner’s sugar sifted onto cake. Freddie arrived to replace the nighttime caregiver, Linda, and I offered to help her clean her car of two feet of snow. As Linda pulled down the driveway, the woods called to me bright from the snow and reflected light. My pre-dawn steps broke a path through the deep snow. It is easier to move through a denuded winter woods, though the hawthorns grabbed at me as though saying “stay.” I freed myself, and in a small clearing in the new growth woods, a calm joy filled me. I understood that the work of responding to emerging needs over the years, of being committed to our parents living an old age of dignity, of hiring caregivers–all that we did to hold them in their house safely–led here: Mom dying at home. In all the fervent and focused work of each visit, the strategizing of sisters, the fights with doctors and hospitals, and often our father, I never recognized the point where our caregiving led: Our care made her gentle dying with her family possible.
In the grove of trees, I found peace with Mom’s dying. Our gift to her for Christmas was a good death, and all I had to do was my part, loving her to her death.
I walked further into the snowy woods. The crust of snow crunched beneath my Moon Boots. My worries all week long were that I would make a mistake. Death’s imminence frightened me, and I was scared about my role. I felt inadequate. My thoughts wandered along with my steps. Could I love Mom into her death?
Buber wrote, “All actual life is encounter.” He said, “The relation to You is unmediated.” I turned toward one of the large willows in the outer perimeter of the Favorite Tree and leaned into its trunk. “Help me,” I begged. “Give me strength,” I petitioned.
Buber continues, “The You encounters me by Grace—it cannot be found by seeking. But that I speak the basic word to it is a deed of my whole being, is my essential deed.”
We stood there for several minutes: Tree and me, You and I. Then I followed my steps out of the woods into the dawning day, the last full day of my mother’s life.