My mother was moved to hospice a few weeks ago. We wanted her to be comfortable with all palliative interventions available. For the past year, my mother has been declining in cognitive functioning, in and out of the hospital for sepsis and multiple urinary tract infections. After several stints at home with caregivers, we decided to finally move her to an adult family home.
Conversation with her were a mix of paranoia, delusions and hallucinations with brief moments of clarity. She often lived in fear of people under her bed or outside her window. She talked about a family that lived outside her window. Jerry, the father, was fired from Amazon and was homeless. Her mind still filtered in the contemporary issues she heard around her. She continually asked my father for money to help Jerry. Sometimes she heard Jerry knocking at the door. When Jerry died in a violent shooting, she started talking about Jerry 2.
Susurrous voices continually occupy her attention. She sees and hears things in a realm we cannot see. A far-off gaze is towards the ceiling and beyond. The TV is always on an inoccuous cooking show chosen by caregivers. The thinking is that a cooking show is less likely to trigger agitation than CNN. I agree, but would have chosen Bob Ross.
She has not eaten in 6 days. Nurses are giving her Lorazapam patches and topical gel to reduce her agitation. Mom is uncomfortable and talks about pain she can not describe or locate. We are told it is terminal agitation, a cluster of symptoms such as discomfort, confusion, aggressiveness and labored breathing. Mom moans quietly and says things we cannot understand. We often hear statements about the death of celebrities and the famous: “He died peacefully surrounded by family and friends.” So far, I have yet to see any peace except for short fitful moments of sleep.
Her organs are slowly shutting down, like lights going out room by room in a house. I tell her it is ok to let go. Everyone is ok and she doesn’t have to worry. She nods “yes.” My dad breaks down after a year of holding in his emotions. “I cannot live without her.” My sister, Ellie and I comfort him.
As a child, I always feared the passing of my parents, but today it can’t come soon enough. Our healthcare system could easily offer a more compassionate and less painful way to depart, but instead we play out years of decline devoid of quality and happiness and create financial crises for so many people. Mom often joked about driving to Portland for physician assisted suicide. When she was being more poetic, she said, Socratically, “I’ll have a Hemlock on the rocks.”
She slipped into a coma. Her lower extremities are cold as her circulation and oxygen levels conserve for her heart and brain functioning. Her breathing is intermittent with longer pauses between breathes. The nurse tells us that her hearing and touch are the last senses to shut down so talking to her is of great comfort. My sister puts cream on her dry lips. A nurse washes her hair with a no rinse cap. The family chatters around her telling stories from her life. We cry and laugh and forget about the void her death will leave in its wake. Mom was always there, in every way.
Even on her death bed, my mind plays through the Kubler Ross stages of death. She will wake up and start eating again. Today , I bargain and deny.
3 respirations per minute. The next inhale never comes. A threshold is crossed.