December 2018 a friend forwarded me an email she received from the NJ Theater Alliance. The email was a call for essays etc. on caregiving. I couldn't suss out what or why. I just did it. The piece I wrote was titled “Love is Watching Someone Die” the title is taken from Death Cab For Cutie song "What Sarah Said".
In January I got an email from The George Street Playhouse inviting me to a playwriting workshop. Still clueless AF. I went and in attendance were about 12 others who had also submitted works on caregiving. Those of us there were selected from about 70 or so. The deal was the artistic director and the director would take what we wrote, all of us, put it into a play and do the play with actors etc. That day the workshop was to get our heads wrapped around writing. We all got one-on-one to edit what we wrote and resubmit. Then the play would be written. Which is the flyer. My rewrite is below drawn from Donna, A Photo Memoir of Love and Loss.
The wheels of the gurney beat a rhythmic ‘whack whack whack’ as Donna was wheeled toward the hospice. In a perfectly choreographed move the orderly reached across Donna and slapped a metal plate. Slowly and quietly the double doors opened -- welcome. Once across the threshold the doors closed again with a soft decisive thud. Was anyone was going to make a break?
The word hospice echoed in my mind, whispering its plaintive call to Donna. Three and half year’s earlier Donna’s terminal diagnosis submerged us. To return buoyancy to her life Donna gave me her disease. I became the captain of the disease, her caregiver and now the docent for her death. Being a caregiver is an escape into routine and OCD.
When you hear the word hospice our minds adopt preconceived notions and attitudes. Observation obscures hope we feel ever-present death. Any magical unicorn rainbow fantasies found in a Disney happy ending are downed out by the ringing of HOSPICE in my mind.
There is overwhelming silence in hospice. Moving past rooms with the nearly dead lying motionless while loved ones stood next to the bed or sat in a chair. Some spoke; all looked broken. In the family waiting area a few people were speaking quietly, while others just sat and stared. Unlike the medical surgical unit this wing had no beeping machines. No rushing of staff to administer meds, check on IVs, measure blood pressure, or prepare discharge instructions. No one was discharged here. They were released.
Hospice was not a safe harbor for hope. Hope inextricably entwined into hospice is not the magic of compounds, machines, or science. Hope is the beating hearts of those who care for the dying and their loved ones.
It’s all about the staff, people, and the human condition because the magic of medicine is gone, supplanted by the caring and support of the people who make this horrific tragic sad painful end-of-life for both of us bearable, surprisingly hopeful and comforting. At diagnosis you find hope in medicine delivered by people. In hospice you find hope in people managing death.
Caregiver to Loved One
Donna you have terminal cancer and six months to live was the message left on her work voice mail. That was the moment I started to grieve. We knew this story would have no happy ending.
Donna gave me her disease so she could live her life on her terms. My caregiving gave her life free of burden. Caregiving replaced my grief with purpose, meaning, and a role.
Caregiving is crushing. Each task whispers the truth.
Caregiving is comforting. Each task connects us to every moment of our 27 years.
A caregiver hails a cab to take Donna to her medical appointments. We stand on the corner straining to find cab. Straining to see that beacon of light on top of the cab hidden in a roiling sea of cars, trucks, and buses. That beacon offers passage around the shoals of fear. I’d make sure Donna is safe and have her stand on the curb
while I scanned near and far. She being an art director trained to read 6pt type would see a far off beacon. Her hand would touch back and push me into traffic saying, “There! Get that one.” And my response was “Are you trying to kill me?’ She’d say, “Got one didn't we.”
The hospice doors closed with a low thud. The ivy tendrils of caregiving that held us together for three and half years fell on the other side. Was I abandoning Donna? Had I placed her in a teal blue rowboat named Hospice with her teddy bear Ruggle’s and pushed her onto a calm lake at sunset.
Once Donna was settled into her room the charge nurse came and spoke with us. We were introduced to other members of the staff, Donna’s PCA (Patient Care Assistant), the physicians, the social workers, and clergy. I was relieved of my caregiving duties. I didn't need to cook, get Donna to an appointment, help her walk, etc. I could focus on being with Donna being a loved one.
Caregiving slowly molted away replaced by the familiar rhythm of a loved one. Before the voice mail we would drive to Maine. Sit in tender silence like starlings on telephone line feeling the wind from open windows waiting to lift and fly. In hospice it was the same, without wind. I’d sit with Donna and do nothing, hold her hand, read ‘McDuff Saves the Day’ or play music. Find her glasses, unlock her phone, bring milkshakes, and sleep in a chair.
My heart broke daily witnessing the horizon of death rushing toward Donna. Sharing a death is the ultimate act of being a loved one. As she was slipping away so was my caregiving. The hospice Sherpa’s lifted my caregiving, restored loved one and carried me. And me.
The Take Away
Take away? Simple. You cannot reason with death.
Writing about his grief CS Lewis said in “A Grief Observed” ‘To some I’m worse than and embarrassment. I am a deaths head. Whenever I meet a happily married pair I can feel them both thinking. ‘One or other of us must some day be as he is now.’
Death is the unyielding end for all.
As simple as death is the caregiver’s journey is complex, painful, and fraught with obstacles. Caregivers are given a 1,001-piece jigsaw puzzle with no box top to guide us. And the puzzle when completed is different for each of us.
Caregiving is helping a loved one live well. The price we pay is shuttling between our life and their death. We exchange life’s water with the wilting of the loved one, nourishing them over and over while our life erodes. Yet our spirit sings the joy of giving hope and succor.
Our internal Greek chorus shouts its commentary “You failed as a caregiver”. This is life’s failure not ours. Hospice returns us to being loved ones. Hospice lifts our hearts above the suffocating ocean of death. The staff is there not only for the dying but for the loved ones as well. Say, help. Scream help. Speak, they will not just hear but listen and act in the loved ones and your best interest.
Donna’s primary care physician and her oncologist would stop by to review her chats speak with the clinical team and speak to me. I just accepted that as what happens but it wasn’t until a year after that I learned that NEVER happens. The rule is sent to hospice and forgotten. This is neither Donna nor I. They knew us not from a chart but as Mark and Donna with fears and emotions. We established a relationship with the team. We respected the team and worked with them but we spoke up, participated, and engaged.
In hospice the needs of the loved one, the family, and the spouse come to the forefront. They want our memories of a loved one to flourish after death. Not long after Donna’s death the brightly colored ribbons were loosened on the gift of memories as a loved one and one who loved.
Donna’s death and her memories are the gifts we’ve given each other because of hospice.
*”What Sarah Said” By Death Cab For Cutie