grief | Danny van Leeuwen Health Hats - Part 4

Closing the loop – the last P – Parting

By Caregiver, ePatient, Family man No Comments
Closing the loop with grief. The P’s of dying pile up – the first six P’s from my mom, the last two from others: Pillow, pills, pee, poop, pain, phone + pistol and peace. Now we deal with Parting. As an experienced observing participant, parting offers a re-entry atmosphere of connection, exhaustion, awkwardness, ambivalence, busyness, reminiscence, and loneliness. I’m hoping next week to focus on a different  topic in my post. Thanks to those of you who have shared this journey with us and commented. Living and parting go together. Oh, ma.

The end – not alone

By Caregiver, ePatient, Clinician, Consumer, Family man 8 Comments
Journey’s end – team effort – for ender, family and family caregivers. This post is for the family caregivers, caring for the ender, the family and each other. A raw and primal passage for the whole team. The ender in the eye of the storm with spiraling waves buffeting family and  caregivers, seeding their own spirals. Mom died well. As a holocaust survivor she was determined to control her demise like she couldn’t control her teen years in hiding . She was selfish and fearful, imperiously choreographing her demise.  She had childlike grace, aching love, and overflowing appreciation.  My mom found humor in the six P’s of dying: pillow, pills, piss, poop, pain and phone. Comfort, basic body functions, medication, and communication.   P for phone was her last joke. We can add a seventh: P is for peace. But wait, this post is about the caregivers. Those of us who tolerated her and marveled at her while caring for her and each other. She could not have staged this pageant without the caregivers who loved her because of and in spite of her strengths and foibles. They were present, put upon, testing their own limits, letting their love, skill, kindness, and generosity wash in as her life evaporated out. Especially, Loretta, a midwife for the end of life. Mom had many regrets in her life, some small and some whoppers. She did not regret the community she nurtured and watered all around her. That community came through. I felt appreciated and supported by her community as they folded me in. I was listened to, bolstered, and loved. Everyone brought their best self for her. Phew. No one was alone.  My mom was about not being alone. I thank that community with all my heart and soul for pulling that off for her.  Oh ma, you did good – we all did good.

Last days – a bittersweet journey

By Caregiver, ePatient, Clinician, Family man 11 Comments

She’s walking on a people mover. You know, the moving sidewalk in an airport. My mom finds herself going from blue to the sunlight. A few days ago she was alone, yesterday she saw her Opa, her father, and a beloved minister, who died decades ago, on the people mover. Wonder when or if she’ll see her husbands. She says she’s been forgiven for her worst transgression. Thank you, Lord. Today she speaks about furling. Furling?! Like a flag, I ask? Yes. Who will I be given to after I’m furled. She doesn’t want me to hurt. From you dying, I ask?  No, that’s life. You can handle life.  Then she drifts off. Her phrases have gaps of 30-90 seconds. She usually picks up where she left off. This takes listening to a new dimension. She doesn’t ask. how will I know that I’ve died? anymore. Her eyes are always closed. She’s gaunt. Her brow is smooth. Breathing regular. I’ve known this woman all my life. Oh, ma.

Humor in a Once in a Lifetime Experience

By Caregiver, ePatient, Family man 7 Comments

Today my mother said this was a once in a lifetime experience. Ha. What a sense of humor.  Last week she talked about the 5 P’s of her life – Pillow. Pee, Poop. Pill, and Pain. I’m laughing and crying.  Six weeks ago she went to the orthopedic doc wondering about her sore knee.  She didn’t want surgery.  He wrote her a prescription: You can dance. Then he told her if it hurts too much, do less the next time.  This morning I asked her what she was doing for fun. She said talking to me and my sisters. When I reminded her about the ortho prescription, she said, I could still dance with Loretta-a few steps anyway. Once in a lifetime experience.

Journey’s end – Goodbyes

By Caregiver, ePatient, Family man 12 Comments
My mom is saying goodbye. Goodbye to family, friends, and now peripheral health team members. She hates goodbyes, more than dogs. She’s been mortally afraid of dogs since a german shepherd jumped on her when she was in hiding more than 70 years ago. A deliberate end to the journey. She’s giving away her possessions, too. Mind sharp, energy flagging, pain surging. Yen for everything, yet eating mere morsels. The 8-year-old in her 62-year-old boy tells her to finish everything on her plate. Heart wrenching to hear her say goodbye to immediate family especially the guttural sobbing when they leave. I just left, going home across country, returning in 3 weeks when my oldest son comes.  She’s waiting for him. Then, she says, she’ll have had enough. I couldn’t say goodbye. I’m not ready. Makes sense that this fighter throws in the towel. A holocaust survivor, my mom was an expert denier. No denial now.  “I’m old. I wouldn’t survive chemo or surgery. Let’s call it a life.” Some end the journey suddenly – heart attack, trauma, aneurysm. Some fade with dementia. Mom is going to call it a life after her goodbyes.

Fear on the Health Journey

By Caregiver, ePatient, Clinician, Informaticist, Consumer, Family man No Comments
Fear – an unwelcome, yet familiar, occasional companion on the health journey. A sinking feeling in the pit of your stomach. Your mind racing, reliving dreaded possibilities. Anxious panting with dreams of careening out of control. What helps? A certain companion, prayer, a drug, meditation, comedy, music, time. When I’m afraid, my family’s reassurance, a loving, lingering embrace, belly laughs, imagining my son, Mike, his arm around me, sitting with our feet dangling on the bridge to our WV home, listening to the creek rush below. The human condition contains fear – it’s inevitable. Knowing what works and what doesn’t when scared is more likely needed than your blood type or diagnoses. Why doesn’t the health team routinely keep track of this? It should be on a card in your wallet.

People at the Center -> Person at the Center = Gaps

By Caregiver, ePatient 2 Comments
A dear friend, Vern Schmaltz, died this week of ALS. He had so looked forward to retirement. His wife, full-time caregiver, faces a considerable gap in her life. “What will I do in the morning?” For the past months they’ve worked together to manage the daily routines of his life and navigate the medical system. She was committed to this more than full-time labor and labor of love.  Now the gap. Winding down, feeling lost, unmoored, exhausted, alone. She knew to take care of herself these past months-but easier said than done. Whatever reserves dried up in the intense last weeks. We spoke for a few minutes about reducing manageable stress – grief is not manageable stress nor is right sizing her home nor rebalancing finances. No stress seems manageable now. All of a sudden the people at the center is the person at the center. Gaps from losing a person at the center fades slowly. Filled in by life. It’s been more than 10 years since my son, Mike died.  Freaks me out that the gaps have faded so much. I treasure those gaps. 

Honor the caregivers, help the helpers

Grief in passing

By Family man 5 Comments
My son, Mike Funk, would have been 38 yesterday. I miss him. Mike had a hard young life and came into our lives wounded with spirit, charisma, determination, and wackiness. The terminal diagnosis came shortly after finding love in his life. So thrilling, so sad. I’ve been blessed with an appreciation and curiosity about death and dying, so we explored the mysterious adventure together for almost a year.  Breath taking stuff. Yes, he suffered from pain and grief watching his carefully cultivated physique melt into a prednisone balloon. He was disappointed that he’d never have kids. He never said, why me? Rather, I wasn’t born with a tattoo on my ass telling me how long I’d live. Lord, I miss that guy!  Monster hugs, prodded me into the music world, If you want to be a musician,you gotta play. 

Mike shared his soul with us, still shares his soul with us. Bittersweet, bittersweet. To get a taste of someone’s soul, you need an open, receptive heart. The challenge of an open heart is that anything/everything passes through-the joy, lust, humor, pain, fear, disappointment. Not just of the moment, but of all stored history. Scary and exhilarating. Oh, Mike, we feel it all, we love you.
Grief is an inevitable lever of health.