While end of life caregiving is filled with everyday miracles large and small, there is no escaping reality. As a single grain of sand is to the beach; so too the physical, mental, emotional, and spiritual demands of caregiving are to exhaustion. Or as IJ summed it up so well in an email this morning, “Each day caregiving seemed to be like a month for me towards the end.”
Contained in the truth, of portions and pieces of days when mom is not suffering or in pain, is another. There are still good times filled with events and people she loves. Yet, the times when she is struggling and unable to access comfort to ease her suffering are increasing in intensity, frequency, and duration. We will continue to work with her doctor and nurses to find solutions, but the process of departure is gaining momentum.
Time, which is internally focussed for mom, correlates to my in-ability to participate fully with the outside world. Friends and loved ones remain neglected, and even when we are together by phone I am most often mildly distracted, listening for sounds in-house. Don’t get me wrong, the other day I heard myself say without hesitation, “Right now, in this moment, there is no where else on earth I’d rather be and nothing else I would rather be doing.”
Mom sleeps less restfully in smaller increments at night. I too am awake, checking, offering meds, or simply being present when she becomes agitated or disoriented and can’t accept more. While she dozes off and on throughout the day, I attempt to keep up with housekeeping, recycling/garbage, laundry, a staggering amount of trips to the drugstore or library, lawn mowing, yard work, and checking tasks off ‘the list’. .
For a number of years, I have considered myself a being who is physically active and sensuously aware of my figure. Now, my body feels waterlogged with the weight of unshed tears and barely functional. More days than I care to admit, my brain is also cloudy and the dosage of Ultra Dark Roast Sumatra required to snap the tray table into the upright and locked position, is increasing. I am easily distracted and often sad
I am someone who enjoys keeping up with current events, trends, and movies. Now, small piles of books from New Media and the BEA lay unread throughout the house. I watch the movie pages and take note of what I would like to see, yet attend little. I listen to friends, family, and neighbors describe summer travel plans. While happy to hear of their impending adventures, it has been a few months now since the tendency to imagine those destinations, and wish I was going too was relinquished.
We spend a lot of time watching ‘Perry Mason’ and ‘Murder She Wrote’ when she is too tired for anything more. Mom enjoys the ritual of identifying who did it so much – especially if it’s an episode I haven’t seen. I don’t want to miss a second of these comfortable times. Yet it is difficult by moments resisting the strong impulse to work on my computer, or otherwise distract myself, when occasionally the personal subtext reads ‘bored out of mind’.
On good days, my commitment to ‘living present moment’ allows me to tune back in to her playful voice that won’t share the secret, look closer at her animated face, with eyes that still sparkle, and the whole of my being becomes engaged in an attempt to imprint the entirety of experience. Will every detail of these gifts remain to comfort me when she does not?
During care-free time I take great pleasure in reading inspiring blogs written by talented young authors and other adept caregivers from all over the world. They fuel my delight and excitement about what is happening here on middlescapes. I am busy helping beloveds write resumes and cover letters to pursue their dreams, and exploring collaborative writing efforts with IJ holds great promise somewhere just beyond the horizon. Yet admitting this, brings traitorous abandonment issues to the fore.
I know in some ways, this journey is no different from single parents everywhere, who do all this AND more, while temporarily deferring their dreams. There is one key difference. While I long for time and income, to return to rowing, Pilates, my work, friendships, travel, wonderment, reading, cooking fresh ethnic cuisines, a pre-occupation with my own physical wellbeing, and adventures hiking or beach combing, doing so will mean a permanent and complete absence in the day to day physical world of the woman it has taken me 57 years to fully appreciate, admire, and love.
Maybe it will be a relief to be fully in mourning rather than existing in the half life of grief. The purgatory of day to day losses, enormous by inference, counter balanced only by the need for relief, respite, a break – that when it comes, will be irrevocably permanent. So for now, you’ll have to forgive me this preoccupation. Please, go on without me into the land of celebrity gossip, fashion tips, restaurants, travel and social media trends. I’ll do my best to catch up later.
This past week, mom spent time dictating as I wrote at a frantic rate, some of the things she wants others to know after she is gone. This was inspired by experiencing her film debut in the trailer for NO EQUAL, The Trials of America’s Female Soldier and realizing she may not be around when the full documentary airs.
On Wednesday, God willing, mom will be celebrating July 4rth by riding along with her fellow WWII veterans in the 57th annual Fourth of July Parade in Natick. I just realized, that means – this particular parade began the year I was born. See what I mean? Full circle. Gifts and miracles every day – oh baby, oh baby. Ya just can’t make this stuff up!!!!