Gero-Punk Reconciliation: The Invisible Cost (and Gift) of Caregiving, Part 1

Part one of a two-part essay

From guest Gero-Punk

G. Wilder

 Glenna W 2

Today I cleaned up messes – piles of papers covered in dust. These were not piles of papers that were on my top ten list of highest priorities. They were piles that have waited for me for years, some since March 2003. That was the date, remembered as clearly as being hit full force in the face with an icy blast of winter wind, that I listened to my Mom’s voice on the other end of the phone line: “I have cancer.” Life as I knew it stopped and would never go back to the way it was. I held the phone, closed my eyes, fought nausea, and tried to process what I had just heard. Her world and mine shifted as if from an earthquake that moves rock formations that have held safe and solid for eons. We both sat in silence, phone receivers to our ears, reaching out to each other across the atmosphere that had carried her voice to me. We ran out of things to say and hung up the phone. I began to do what I always do – plan for the unknown journey ahead.

Thus began a dramatic redirection of my life’s plans, and life itself. I had just entered the world of the family caregiver. Even though I had helped my Mom care for both of my grandmothers, I had always been in “second seat” and didn’t feel responsible. This was different – I was now fully in charge of supporting my Mom as she entered the world of cancer. At the time of her diagnosis, Mom was caregiver to my Dad, who denied and struggled with frightening cognitive changes. My mind raced into the battlefield ahead: Mom would undoubtedly undergo some kind of treatment and Dad would need someone else to be his caregiver. Everything pointed to me, as my brothers were not involved in any aspect of our parents’ needs.

As I predicted, Mom was immediately scheduled for exploratory surgery and began her pre-surgery bowel preparation. She was already debilitated from the cancer, and the bowel prep increased her weakness. She fainted and fell in the bathroom. I received a call from her neighbor while I was cooking dinner. When I answered the phone, he prefaced by saying “the ambulance is on its way.” I nearly passed out and listened as he explained what had happened. I shut the burners off on the stove as my husband tried to grasp what was happening, and I was out the door on my way to the Emanuel Hospital Trauma Unit. Life shifted again.

After all of the hospital diagnostics produced their findings, we entered new territory – Mom had a severe traumatic brain injury and would need specialized interventions and care. Cancer would have to wait. My brain catapulted down the log flume of issues I was faced with: managing and advocating for my Mom’s care and caregiving for my Dad. My own life was no longer on my radar. Except that I was in the middle of a year-long sequence of three cervical spinal surgeries. But I didn’t have time to think about that – I would deal with that as a lower priority.

As the weeks passed, Mom discharged from rehab to home and I essentially went to live there so I could provide the intensive rehabilitative coaching she needed and transport her to physical, occupation, and speech therapy. Dad was at best passive and at worst obstructive, even stating at one point that we just needed to “let nature run its course.” His obstructions and belligerence increased so my husband and I decided to move Mom to our farm, to get away from his negativity and in part so I could try to take care of things at home. Life shifted yet again.

Mom’s brain injury affected many things, including her balance and her bladder control. This translated to getting up with her three or four times every night to provide standby assistance to the bathroom so she would not fall (again). She had therapy appointments three days per week, as well as frequent neurology, oncology, and primary care appointments. She had constant therapy exercises to perform at home, and required 24/7 care with all of her activities of daily living. I made frequent trips to help my Dad and try to meet his caregiving needs. In my peripheral vision I could see everything in my life that was stacking up – a kind of awareness that was quickly dismissed as not being feasible to get on my list of “front burner” priorities. After several months of very slow progress, and my own impending third surgery looming, Mom moved to an assisted living facility.   This provided me with the respite I needed to attend to my surgery and recovery. At home, my life continued to sort itself into piles that would have to wait “until later” as I continued a high level of caregiving responsibilities.

Approximately sixteen months after that first gut-wrenching phone call, my Mom passed away. My Dad reacted in unexpected ways. Unlike his response to her injury and decline, he was devastated by her loss. My caregiving role ratcheted up considerably. The on-hold “piles” of my life grew ever larger, deeper, and dustier. This continued for four and a half years, until my Dad passed away in January of 2009. Suddenly the motion stopped: I was no longer a caregiver to my parents. It was as if I had arrived at the bottom of the log flume and been spit out on the shore. I tentatively began to examine my life and was massively overwhelmed by what I saw staring at me. I didn’t know where to start so mentally shut the door and focused on damage control. Only the highest priority issues would be addressed. Everything else would wait until I “caught up.”

Five years later, I realized that I would never catch up. The piles and issues that were always superseded by higher priority issues would never rise to the top.

That is why today something in me snapped and I put life on hold. I sat down to the first of many piles of papers and began to wipe the dust off and examine many-years-old documents. I felt as if I had just walked through the door in the back of the wardrobe and found myself in Narnia. Each paper took me a step at a time back into a journey full of memories. Some of the papers were about unpursued ideas and unfulfilled action plans. Some were about unexplored dreams. Some were about expired opportunities. Very few held any promise of resumptions of plans. Some were about things that were insignificant and some were heart-wrenching realizations of irreversibly lost opportunities.

In many ways it felt like dealing with more death and bereavement. It was also the genesis of this essay.

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G. Wilder is a native Oregonian and Marylhurst Master of Arts in Interdisciplinary Studies/Gerontology student.  She holds a BS in Social Science/Gerontology from Marylhurst and works as an elder advocate with a look to the future in creating innovative elder social and residential models.

About Jenny Sasser, Ph.D.

I am a freelance educational gerontologist, writer, community activist and facilitator. As of 12/21/15, I am former Chair of the Department of Human Sciences and Director of Gerontology at Marylhurst University. I joined the faculty as an adjunct member of the Master of Arts in Interdisciplinary Studies program in 1997 and since that time, I've been involved in designing many on-campus and web-based courses and programs for adult learners, including in Gerontology. As an undergraduate I attended Willamette University, graduating Cum Laude in Psychology and Music; my interdisciplinary graduate studies at University of Oregon and Oregon State University focused on the Human Sciences, with specialization areas in adult development and aging, women’s studies, and critical social theory and alternative research methodologies. My dissertation became part of a book published in 1996 and co-authored with Dr. Janet Lee--Blood Stories: Menarche and the Politics of the Female Body in Contemporary US Society. Over the past fifteen years I have been involved in inquiry in the areas of creativity in later life; older women's embodiment; sexuality and aging; critical Gerontological theory; transformational adult learning practices; and cross-generational collaborative inquiry. I am co-author, with Dr. Harry R. Moody of Aging: Concepts and Controversies (8th edition). I live in Portland, Oregon with my dog Happy. My daughter Isobel is a Sophomore at Bard College in New York state. I have been on the planet 49 years.
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One Response to Gero-Punk Reconciliation: The Invisible Cost (and Gift) of Caregiving, Part 1

  1. Reblogged this on Loss, Grief, Transitions and Relationship Support and commented:
    The Invisible Cost (and Gift) of Caregiving

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