THE CENTER FOR DYING & LIVING

It didn’t dawn on me until my father was dying that he taught me some of my most valuable lessons. I don’t think it dawned on him either. His lessons were osmotic and evolving until the second he died. Never concrete nor disciplined nor learned. Ever so kind and gentle, he navigated life with thoughtful prose, introspection, and a keen pensiveness. My father was raised, or rather not raised, by a present yet absent, alcoholic father figure. He never spoke of this. He kept his silence. He would gain that voice, that courage, as death approached. That courage would free him to soar and fly!

 

At 50 he suffered his first heart attack and by the time he died at 78 he presented with the following alphabet of medical acronyms:

 

History of MI (myocardial infarction) x2 requiring CA (coronary artery) stents, inguinal hernia repair, knee surgery, former smoker, benign essential HTN (hypertension), hyperlipemia, DM (diabetes mellitus) type 2, uncontrolled and controlled, PAD (peripheral artery disease), syncope, SDH (subdural hematoma), osteoporotic kyphosis, compression fracture of thoracic vertebra, Compression fracture of lumbar sacral spine, segmental and somatic dysfunction of rib cage, elevated PSA (prostate specific antigen), urinary retention, neurogenic bladder, acute UTI’s (urinary tract infection), fracture of rib, atelectasis, pleural effusion, saphenous femoral venous reflux, GERD (gastro esophageal reflux disease), fecal urgency, enterococcus faecalis infection, dehydration, anemia, dementia

 

In a word, overwhelming, as a daughter and a pediatric nurse! Note to self and others: create or hack into the patient portal associated with the insurance or medical group. It’s a treasure of collective information that includes timelines, diagnoses, physicians, and medications. This trove helps piece together the medical map of a system that tethers and un-tethers patients.

 

This vivid realization of a dying father hit me like a sucker punch. It was a technical knockout for my mom. Enter the powers of denial and anxiety. Forces that grip, stifle, and paralyze; it makes people run away…it made my mom run away and robbed her of the here and now. I became caregiver to two parents and would fly 11 times in a year, back and forth from Northern California to Southern California, where each time I schooled myself in the dying, yet still living, process. Unencumbered by life’s demands and pressures, inhibitions diminished, my father spoke the truth, cleared his head, and told heart wrenching stories of his father that I had never heard before. I simply listened.

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With reality changing, physicality diminishing, and cognition fleeting, we found solace and beauty in the “taken for granted” mundane. Music, flowers, red wine, lasagna, tortilla chips, popcorn, sunshine, and reading. Anything that appealed to his senses and tactile dexterity. His favorite task became emptying the contents of his wallet, thoroughly inspecting each card, old receipts, and counting cash, all the while meticulously placing everything back in its original slot. One warmly lit afternoon, while I read from one of his favorite books, my father briefly interjected, “I’m JL (Jonathan Livingston) too you know,” likening himself to the elegant, soaring bird. He was transitioning himself from earthly to ethereal school, enthralled with the language of speed and flying.

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These were the memorable times so easily shrouded in the struggles of an anxiety ridden wife and mother, a merry go round of aesthetically unpleasing rehab centers, apathetic physicians bored by an unfixable patient, advocacy for pain medication, tears, indecision, and exhaustion. Because rehab physicians assume comprehensive care of a patient while in their centers they are not aligned with established primary care physicians and specialists. Protocols unwind and continuity of care misses the mark.

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I would call the rehab physicians exchange directly with questions, find out the days they rounded, and make my presence.  As a nurse I spoke their language but I also appealed to their human connectedness grounding them back to a creative process. Medicine is, after all, a science and an art.

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Relying on a bounty of social workers, case managers, and physical therapists, who enlightened my mom to accept the inevitable, bridged the growing chasm between us. She was angry and upset with me for telling her the truth. Thank goodness for the laughter and wit of my sidekick of a brother. He supported me through this journey!

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We have birth centers but no death centers. Medicare cuts the cord after 90 days if a patient is deemed beyond the scope of rehabilitation and private pay by the day billing initiates. 

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We would bring him home via the miracle of hospice. In the end there was a tangible, comfortable silence. It reminded me of the inscription in the Krishnamurti book he had given to me: Think on these things…. Annie, for your quiet moments. Love, Dad

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Covered in red rose petals symbolic of his romantic spirit, we read a poem, a prayer, and the page from Jonathan Livingston Seagull entitled “So this is heaven”. He was loved…we are all loved. And if we embrace the courage and strength of those who came before us, those who are with us, and those who have schooled us, we complete the circle. Pain, suffering, forgiveness, grief, love and ultimately flying. For this is life itself.