It was after my dad died six years ago that I understood I had joined a new club, one whose entry requirements are unfathomable until a parent dies. Late last month I made another transition, one carrying its own membership criteria: adult children caring full time for a parent with dementia. Before the move I remarked to friends how I was going into it with my eyes wide open. True. Did I know every detail and step and challenge? No. Was I prepared for the moments Mom would tell me to leave the room or that I wasn’t her daughter or she would sleep all day or when she was constipated? No. Did I know how dear the sweetness of so many other moments might be – eight months into the pandemic – as I lie on Mom’s bed, mask free, to watch a musical, read aloud old and new stories as she listens captivated, or hold her hand –not a soul to command six foot distancing – and say nightly prayers? Not even close.
It is true that nobody can fully prepare us for providing care around the clock for someone we love with dementia. And this, my friends, is where creativity enters. Yes, caring is creative. Does it tap into the same part of my brain that nudges my writing? Beyond the basic chores of human needs, imagining what more might touch her heart: a song, story or memory …or, as requested, a scoop of ice cream? Accepting as the ultimate gift, her gorgeous unchanging smile and laugh. In this moment it is all that matters. And the power of gratitude. I am grateful I have been given this gift of caring for my mom at this time in her life.
Those who know Patty remember her adventurous spirit. She’s the one who, several years after completing a master’s degree in special education, moved out of state to complete her doctorate in something seeming so esoteric then: East West Psychology. She is the one who told our dad after their remarriage that she was backpacking the Pacific Crest Trail, and if he didn’t want to come along she’d find another man to hike with so Dad would worry less. She’s the one who adores her children and grandchildren, honoring their pursuits and accomplishments, encouraging all of us to explore. She is the one who now some moments tells me to leave her alone and others laughs as we reminisce on stories from our past, giggle at the humor of E.B. White and marvel at the crafting of Andrew Lloyd Webber and Rogers and Hammerstein. And she is the one who has cared for me throughout our lives together.
In 2002 our car was totaled as my family foursome descended Mt. Hood’s Timberline Road on an icy Saturday morning. Our two daughters and I were transported by ambulance to Mt. Hood Medical Center, and I was re-transported by ambulance to Emanuel Hospital’s Critical Care floor. I spent more than 24 hours on a backboard, pumped with morphine as we awaited the on-call surgeon who would determine if nerve involvement might require surgery. It did not, and I was blessed to make a mostly full recovery. I traveled home to six weeks of no work where co-workers donated sick leave and families from Cedaroak Primary brought meals nightly for so many weeks that I began to feel guilty. And Mom–newly retired as an adjunct professor at Marylhurst– helped care for me. Today I read her own memoir to learn how traumatic it was for her to visit her daughter and granddaughters in the emergency room– me, strapped to a backboard with a temporarily disfigured face. She would take our daughters home for the evening, comfort them into the unknowns of what the future might bring. For weeks after she drove from her home in Sellwood to ours in West Linn, providing care that she hoped would help mend our family. She brought me books, movies, food and unconditional love. As I now provide to her.
During the past eight months as COVID-19 has rocked our lives, I have learned so much. Ironically, it is because of this pandemic that we decided to have Mom move in with our family and because of it that I was able to keep my job, mandated to telework. During these times so many of us are learning that family and dearest friends are what matters above all else, we hunker close as the rain drizzles and clouds block out the sun. We are filled with sadness as we, or those around us, struggle with loss of friends and family, loneliness, housing and finances.
In all of this I recognize how fortunate I am to have a job requiring me to be home, leadership supporting me to do so, and the seeming “privilege” of work-provided benefits such as banked sick leave and intermittent Oregon Family Leave: something few essential workers have. All this allows me to care for Mom without worrying that my paycheck will be cut. It is a reminder that fairness, respect, decent pay and benefits for all workers must continue to be our underlying goal. Yes, I can attest that my work is better and I am more productive because worries about my mom being inaccessible to me are not haunting my subconscious. Mom’s presence in our home, and the caring tasks take me away from the things that were consuming my minutes and exacerbating my worries. I am more relaxed and at peace with wherever this journey takes us. Although I might regret that I did not move Mom in sooner, she has declined physically and mentally during the 8 months of limited visits of the pandemic, it is the now that matters.
It has rained relentlessly for much of the past week. I love rain, and am relieved I no longer need to assess if the weather might allow an outdoor visit with Mom. More than a full week gone by that I would not have been able to see her if she wasn’t in our home. I am ever so thankful she is here now, in this moment. For as many moments as we have together.