Remember the bushy-haired, bespectacled comedian from Saturday Night Live who was certain the world revolved around him? He sat at the sardonic news desk; ever interested in how current events would affect him (dramatic pause), Al Franken. He declared the 1980s the Al Franken Decade and drolly imparted tips on what viewers could do for him.
Being a care recipient is a little … no a lot … like being Al Franken. Your needs come before anyone else in the family. Your routine dictates everyone’s schedule. Your crises, medical or otherwise, each become a crisis for the entire household. As appealing as it may sound to be the focus of attention, I’m fairly certain most care recipients don’t revel in driving the “Frankenbus.” The route is fraught with tricky twists and turns that could tip that big, unwieldy thing on its side at any time. There are no seatbelts, no power steering and, worst of all, no power brakes to bring the crazy ride to a screeching halt.
On dozens of occasions during the years my mother drove that bus, she voiced the concern that she was a burden. One day she would worry that she was tiring me out and ruining my health. Another day she fretted about keeping me from participating in activities with friends and family outside the four walls of our home. She apologized repeatedly because we couldn’t go out to eat without sitting in the restaurant parking lot for 15 minutes while she carefully tested her blood sugar and injected insulin to counteract the meal she was about to order. She was troubled that I was whittling away at my sick leave to take her to medical appointments and missing work to tend to her when she was ailing. As many times as she verbalized her worries, I’m sure she silently turned the same thoughts over in her head hundreds more.
Farewell Christmas Card 2013
Our modus operandi was generally to find humor in otherwise dismal situations, so eventually her concerns turned into one of the coded messages I’ve often referenced in these columns. If one of us was fussing about something and began to lose sight of the big picture, the other would interrupt and say,
“It’s all about me, Al Franken.”
It was always good for a chuckle and a quick reality check. Once in a while, we would add Al’s simple reasoning to this narcissistic phrase. “I’m good enough, I’m smart enough, and dog-gone it, people like me.”
Mom commemorated this coded message in the Christmas card my family was entrusted to deliver after she passed away last year. She died just a couple of weeks before the holiday, so there was little decorating or celebrating in our household. The best gift I received was that card, the first in a secret series of posthumous missives. Some I’ve already shared with you; others will make appearances as this continuing saga unfolds.
Vacation – 2003
“It’s all about me, Al Franken,” was not a signal reserved exclusively for Mom’s low moments. She was known in our family as “the only one,” but she was not the only one to periodically feel trapped by our circumstances. I was never tired of her; just tired and, as the years passed, it began to show. As Sarah Ban Breathnach wrote in her 1995 daybook, “Simple Abundance,” it is not the temporary pressure of work (or caregiving) that causes burnout. That, she says, “comes from living unbalanced for years; when what was supposed to be a temporary situation becomes a lifestyle.”
It wasn’t until the last few years of Mom’s life that the feeling of being constantly tired erupted into full-blown caregiver burnout; the kind that Ms. Ban Breathnach calls the “soul snuffer.” Thankfully, I remained fairly skillful at exposing only surface frustrations in Mom’s presence and censoring my deepest feelings of anguish. As far as I know, she was unaware that occasionally the weight of our arrangement overpowered me, and I would pour my heart out to anyone who would listen in person, on the telephone or in an email.
When I worried, aloud or silently, it was about many of the same things Mom did. The culture at my workplace was genuinely “family first,” but I still felt anxious about my dwindling sick leave and postponed projects. Sometimes I imagined what it would be like to go on an outing and not have to heft a wheelchair in and out of the trunk and patiently help Mom slowly transfer back and forth. I wondered how long God expected me to go on, especially since I was approaching my 60s and couldn’t help noticing that the time to pursue my own lingering dreams was slipping away. Worse yet, I watched my two grandsons’ childhood racing past, and I couldn’t be present for milestones like holiday pageants or Cub Scout ceremonies.
Every time I lapsed into self-pity about our circumstances, I would inevitably feel guilty for my selfishness. My paternal grandmother’s admonishment, “Don’t be ugly,” would drift through my head and I would, indeed, feel ugly all the way through. My sister, my daughter and my closest friends would reassure me that it was natural to feel frustrated when holding down a full-time job, caring for someone who was completely dependent on others, and trying to capture a moment now and then with the rest of my family. At the time, their kind words didn’t make me feel any less ugly, but as with so many things in life, the image in the rearview mirror is crystal clear. Just looking at the photos posted with this column — from 2003, 2008 and 2012 — I can see the physical changes in both Mom and me, and I can truly understand the multiplying pressures of our years-long journey.
New House – 2008
Indeed, caregiving and care receiving is a journey … and it’s not for the fainthearted. It is the most advanced course of study anyone will ever take on earth, regardless of whether you are the one providing care or the one receiving it. The highest level of trust, commitment, patience, compassion, love and forgiveness are prerequisites for both parties. How else could one get through the ugly moments and gladly return to the arduous path?
Somewhere in Mom’s last year of life, I realized that our time together was growing short. My periodic pity parties came to a halt. I knew what I had always known — that the only way I was ever going to be released from my caregiving obligations was to lose Mom. The finality of that solution was no longer an abstract idea in some distant, foggy future. Suddenly I felt like Diana Prince spinning into Wonder Woman or Popeye consuming a can of fortifying spinach in one gulp. I heard myself saying repeatedly, “I would take care of Mom forever if she would just stay.” And I meant it. The price of freedom was far too high.
In the end, there was no way to pause the journey or avoid the divergence of our paths. Mom was headed to an ethereal destination, and my name was not on the guest list. Instead, I was advancing toward a new beginning here on mortal ground. Our separation was inevitable and heart-wrenching.
So many months later, I am no longer constantly tired, my accrued sick leave is growing, and I have the freedom to go just about anywhere I please, anytime I please. Yes, it’s nice, but I would give it all up if I could have Mom back here with me. As I write this, I can hear her whispering the double-edged truth … that today and every day … whether I like it or not, it is now …
“… all about me, Al Franken.”
Al Franken left Saturday Night Live and went on to become a U.S. Senator from Minnesota. I probably will not pursue politics (the thought makes me shudder) but I am confident that I can do anything I want. I can become the person I was always meant to be because, just like Al Franken, I am “good enough, I’m smart enough, and dog-gone it, people like me.” More than that, I’ve got my invincible gold bracelets, my can of body-building spinach and Mom’s enduring love in my heart. Nothing is more powerful than that.