If I was to write the first sentence of the first page of our caregiving story it would go like this, “Donna you have six months to live.”
It never became a story, only a formless narrative of disparate memories. No character development or dramatic structure. No first person or other persons. No plot. No meticulously crafted descriptions of places or moments. Terminal illness has its own plot and clearly no happy ending. It just moves forward and stops. It is desire without fiction.
For three plus years I never thought what I was doing was caregiving. Dragging a razor across my lathered cheeks the face in the mirror never whisper ‘caregiver’. The image I wanted to be was a Marine who does not leave the dead or wounded behind. I would make that final march holding Donna to the Medevac helicopter that would carry her away.
Caregiving is checklists, todo’s, chores, and scenes from a disjointed screen play, hands making pill packs, covering Donna in the winter with an electric blanket, then cut to black.
Do you really want to know about caregiving? It’s a Mobius strip of tasks on repeat, played out in a 4/4 time signature. The rhythmic tap tap tap tap carries you to the next task. Each task ignites OCD, loyalty, and love. The tasks of caregiving were in reality just gnats of achievement and success. They projected the persona of caregiving for all who noticed.
The ugly truth about caregiving is that it screams failure. Donna would die. Caregiving tasks silenced the words echoing off the walls inside my skull, Dead Donna for the time being.
I would hear this in my mind, “Mark you are doing so much for Donna. What about you? Are you running away from the fact that her illness means she is going to die? You need to care for you.”
Then my head would snap and I would respond, “Stop! You are not allowed to hint that what I am doing is denial. I am not running away. Call me a caregiver giving care. Each task creates a memory that I can run my fingers over like a bas relief forever.
Memories After Death
“One day arm in arm
We left home and closed the door
You never returned”
Caregiving tasks suddenly and forever ended when Donna died three and half years after being told she would only live for six months. Caregiving tasks were the markers and check boxes for purpose during her treatment. That was all. Never meaning.
They were memories of moments. After her death I carried them with me. Moments in memory became transactional. I exchanged the moment of a memory for the pain of today.
Little by little the true value of memories reveled themselves as bare spindly twigs signing in ASL on a moonless night. Signing to me to remember how deeply I loved, we loved. Each day I would remember more and more of these memories. Over time they became vivid full color scenes in my head. My life.
Caregiving tasks were sewn into a quilt of memories. That I wrapped over my shoulders like a nomad moving between the dark moments of grief.
It Begins
Dr. B., head of oncology at a teaching hospital was our first visit after Donna was diagnosed. Before Dr. B. pulled out her chart Donna asked,
“Am I going to die in six months?”
“Well not so fast let’s take a look.”
I sat on one of the hard plastic chairs. My hands folded watching and listening. Donna sat on the exam table which was more like a lounge chair on stilts. The paper covering the seat rustled as she hung her legs over the end. Dr. B began a physical exam, reviewed her charts, notes, and films. Scribing notes as he went through the exam to capture bits of knowledge about another patient.
When he finished he helped Donna off the exam table and guided her to the other plastic chair next to his desk. He looked at Donna and touched her hand. His massive thick white mane of hair and the bright light from his eyes gave an aura of trust and belief.
“Donna, your tumors are small but inoperable. The tumor in the brain is not absorbing contrast, which is good. I have a neurosurgeon who wants to remove it. You are asymptomatic and healthy. So six months is not the plan, but this is Stage IV and we’ll do the best we can.”
He placed a blank sheet of paper on the desk and drew a horizontal line on it. Over the left end, he wrote “Dr. B.” Over the right, he wrote “Donna.” He drew a straight line between the two. He turned the paper toward her.
“Donna, make a check on this line for how you want us to work together. On the left, I make all the decisions based on the best evidence, my experience, your disease, and you. On the right, you make all the decisions and I will follow that. Of course I will do no harm.”
Donna checked the middle of the line. She trusted herself and Dr. B equally. A faith that allowed her to be Donna.
We left the building to catch a cab. My thoughts would never be in the here and now. Ever again. They would forever look forward to death. Even after death they looked back at death.
A week ago I was making dinner I heard the keys in the door. Donna was home.
She put her bag on the stainless steel island. Softly, “We need to talk.”
We went and sat in the studio. I on the black leather Butterfly Chair Donna said on the lime green puffy footrest. Her face was drawn and tired.
“Dr. S. called and left a voicemail at work. He said I have Stage IV cancer and six months to live.” Spoken in a clear concise cadence.
I looked at her not surprised as much a numb and cold at the shrill words that trumpeted a finality and closing of the life we have, had, will have. I could not find the tense since there was none.
She dried her eyes. I’ve never seen her cry in 28 years. When she spoke again it was adamant. “I don’t want to go through treatment or die a painful death. Let’s move to Oregon so I can be put down on my terms. I will leave you everything.”
It was simple for her: her death managed her way on her terms and her timeline.
In the cab after Dr. B and heading home Donna turned to me with a small crooked smile, “I think Oregon can wait for now you have a lot to do.” I smiled then and now. Such a smart ass.
That was the moment Donna gave me her cancer. She turned it over to me. This was not an exercise in denial or an abdication from life. It was her way of finding her dignity so she could continue to work and live without being annoyed by the cancer. Retain her dignity in the face of fear. Isn’t that courage? She wasn’t fighting the cancer. She was having it trafficked like a job jacket for a 12-page sales aid. Donna retained authorship of her death. Death by Donna was the title.
I heard, “Bring me the job jacket when I need to meet a due date or review it or make a decision. Otherwise, don’t bother me with it.”
Her job was managing her life, whatever might be left of it. My job was logistics and details. I was the traffic manager of tasks. Even when I failed at some I had purpose. I had caregiving tasks.
Caregiving Tasks & Found Memories
Her steroids needed to be picked up at the pharmacy for this weeks’ pre-chemo treatment. My task is to place them into tiny dated envelopes and ensure they were consumed in the order, dosages, and dates prescribed.
Walking to the pharmacy I pass a window displaying brightly colored sweaters and remember sitting with Donna for years as she unwraps a birthday gifts. First carefully untying a ribbon. Then the slow and deliberate peeling of tape and unwrapping the paper. Her slim skilled perfectly manicured art director fingers holds my attention. She puts aside each item for another use and opens the box to revel a sweater. I relive this moment with an intensity that takes my breath away. I shake my head look up.
“I am here to pick up a prescription for Donna.” I am walking home wondering if Donna would want a new sweater now.
Three years after she died I find myself aimlessly walking the streets of Soho. It’s a week or so prior to her birthday which does not happen any longer except in my mind. I am not walking the crowed mall like streets of Soho. These are the back streets, the ones faintly visited and dotted with tiny stores of well styled items. A window display stops me. I look at the sweater on a mannequin. It is black wool with a wide weave knit. The neckline is cowl with a shirt tail hem. Next to the mannequin is small black leather bag with a simple chrome clasp. The bag shaped like tiny doctors bag. Perfect I think. I walk into the store and find the shelf with the sweater. I lightly touch the wool.
“That is a beautiful sweater. Isn’t it?”
“I know, I saw it in the window and wanted to see it a little closer. It feels so delicious.” I say without any emotion. Just fact.
The sales person smiles, “Are you looking for a gift perhaps?”
“Yes a birthday gift.” I whisper. “What size do you need?” I take a deep breath “0”.
“Let me check I think we have that. The color?”
“That’s okay I am still looking. It”s lovely and Donna would so love it.” I turn and walk out the door. My pretend moment has passed into a memory.
Three months after her three and half years. I am thinking about chicken soup. Chicken soup is about all she can eat during one treatment cycle. I walk through the double doors into the infusion room with her soup and a slice of bread. Donna is about half way down the semi-circle of recliners attached to a pump. The room is large and filled with sun light. The windows are facing Union Square Park and the classic NYC skyline of assorted buildings.
These fifteen infusion loungers were arrayed like a counsel of elders discussing matters of importance before giving guidance to the the villagers about life and death matters.
The infusion chairs were actually recliners, since it’s important to be comfortable when you’re being poisoned. Looming over the recliners are stainless steel stands on spindly legs. They hold chemicals in clear bags as a computerized pump with soft beeps push fluids to the needles and into the arms of those hoping against hope. Most bags held clear fluid; others had various colors Christmas ornaments. The stands and bags looked like the staff had sculpted them like totems or prayers for life. Donna and I were sitting in this sculpture garden. Around us were people in various states of age, health, or death. Some were curled up under blankets, trying to rest or escape where they were and why.
I look at the woman in the next recliner. A pink bandana with images of stars pulled snugly over her head. For warmth or shame? I can’t remember. Her eye catches mine and she smiles.
“Hi, I’m Nancy this is my husband Bob. I guess we are all living the reality of our lives played on this stage, right now right out in the open. There is not a chorus, or costumes, or lighting, or marks on the stage we hit that can mask what is right here now.” She chuckles a little. Bob looks like I feel, he wants to puke.
I nod, “I’m Mark” I turn and look at Donna who is having her soup and piece of bread while looking at her phone. “This is Donna.” She looks up half heartedly and smiles weakly. I know that look. She does not tolerate fools gladly and I can her her inner dialogue. “What the fuck are you doing? I want be here only to get this over with and get the fuck home. Chatty friends I don’t need. No roots to sink here. No connection other than to Dr. B and the nurses.” Her pump beats again and I look up.
Robert is holding Nancy’s hand. His thumb is caressing here forehand while she squeezed his. They are not looking at each other but at some distant spot on an imagined map showing a destination .
A memory erupts. For thirty years Donna and I walked together holding hands. Donna would say with a joy, “Our hands fit so perfectly in each others. Why?” I reach and touch Donna’s hand. She grips back. The pump is not heard.
Saturdays were movie nights even during treatment. Life and all that. We’d walk to Battery Park City cinema. Walking was painful for Donna. My caregiving task was to hold her and help her step up curbs. Once in the theater not just now but forever Donna insisted we be centered up and down left and right in our row. She was an art director and her visual field was critical.
“I am going to get some popcorn. Do want any?”
“Are you kidding me. My getting any popcorn is slim to none with your mutt like paws in the tub. Just get me a club soda. Don’t forget the napkins, you always do.” she’d say with a smile.
I would come back to my seat and hand Donna her club soda. She would look up at me, “Napkins?” Oh fuck. She’d raise an index finger make three twirls and point to the exit.
The theater would darken and the trailers appear, and they stabbed me in the heart every time. That damn smooth voice telling us the plot of a film coming soon—would it be soon enough? Would Donna be here to see it? You know what’s coming? Pain. More chemo, more fear, more gnawing of grief on my heart, soul, and memories. I lost hope every Saturday night before the feature even started. Donna never noticed. Or at least, if she did, she didn’t say a word. Was it her denial or her respect for me? My mental reel wouldn’t shut up: our movie was not going to have a happy ending. Cut to black.
But those nights did have a happy ending. After the film we’d get home by 10:30 or so and then it was time to take Nina out. Our first Westie had been Willy and he was my dog or, more to the point, he was the dog for me—a big lug who wanted nothing more than to chase skateboards and look adorable. Nina, our second, was Donna’s joy and love and eager recipient of hugs, kisses, and treats. The perfect white prop. As lovely as Donna, Nina was always freshly groomed with a traditional Westie cut. Nina was an art installation. In fact when we first discussed getting a dog Donna said that a Westie is the perfect shape for a loft with high ceilings and sharp right angles. Always an art director.
I’d head upstairs to get Nina. Donna would wait by the door for the two of us to join her. In the apartment I would harness up Nina saying. “Mommy is waiting for you.” Her tail would wag like a baton leading a philharmonic. When we got off the elevator Nina would drag me to the glass doors and scratch and scratch to get out. Once outside Donna would kneel and Nina would shower her with kissed and they would be one.
Two months after her death I went to my first movie alone. I found our favorite seats put my coat down and went to the concession stand.
“May I have a small popcorn. No butter. A small coke and a club soda. Thank you”
“Wait, Sorry, I don’t need the club soda any more.”
I took the popcorn, coke, and remembered to grab napkins. The trailers came on and I sat there, lost and broke. She will never see this film. I may. Do I deserve to see it?
When I came home I would walk Nina and for a year she expected to see Donna outside the doors.
“I’m sorry Nina me too.”
After Donna’s death the wound of grief allowed the light of memories to enter. I am now the caregiver for our memories. I craft and share those memories to keep Donna alive until my expiration date. Closure is indifference. Closure is denial said pretty.
My caregiving tasks did not keep Donna alive. I did not keep Donna alive. Being the caregiver of our memories achieved meaning and life within my life.