It has been about three seasons since I’ve come here to write on the topic of caregiving and “the road home.” A recent and mercifully short trip to the hospital with my mother has me once again pondering the paradox of her fragility and tenacity. Her spirit clings like the last colorful leaf on her autumnal body.
The heavy, panicky weight on her chest she felt was diagnosed as angina, a general term for heart pain. She has had congestive heart failure for many years, a slowly progressive weakening of the heart. Her new treatment is more frequent use of a wheelchair, and a nitroglycerin patch worn at night to prevent discomfort. Oddly, nitroglycerin was first discovered in the mid-nineteenth century and used as a powerful, and often catastrophic, explosive. Alfred Nobel, of Nobel Prize fame, in an attempt to make this highly volatile compound safer and more practical to use, developed and patented what we know as dynamite. It was decades later that nitro’s medical uses as a vasodilator were discovered. In an interesting twist of fate not lost on him, Nobel himself was treated with ingested nitroglycerin towards the end of his life. I ponder how nitroglycerin seems suited to my fiery mother. Of course it is well diluted in medical use, but its explosive history feels philosophically apt in her case—treating fire with fire! It is her most abundant element.
Every time I walk through the doors at her assisted living home, I am struck by the myriad paths the road home takes. Sudden loss is common—the lady down the hall with whom I just had a lively chat the other day has passed away quietly in her sleep. My mother’s dear friend across the hall now sits dozing in her chair, no longer very conversant, and my mom cuts up her meat for her at mealtime. More commonly, you witness the jagged ups and downs that eventually give way to release. And then there is my mom, along with many others, who putter along into their nineties, with occasional dips below the health horizon and ever-reducing function, but resilience triumphing repeatedly until the beginning of the inevitable end.
Resilience is a quality required of caregivers as well; at least those who will maintain their own health and well-being. Each little crisis summons adrenalin in preparation for any and all outcomes. Will it be a lengthy hospital stay? Will the nurses/doctors on duty be kind and inspire confidence? What kinds of tests will they order? What questions do I need to ask? Will she rebound? Or will she persevere but in a further declined state? Or—will she die soon? If she is approaching her death, will I be able to be present, with presence? Will she be conscious? Afraid? Or as ready and peaceful as she often claims to be? Will my family be okay while I devote my time to her in her hours, days, of critical need? What decisions will I need to make this time?
When I am at my most whole, and rested, none of these questions is unmanageable. Especially since I have a supportive husband and a long-distance but close sister who is always available by phone if not immediately in person—as well as access to healthcare for my mother. I am always aware that I have much more support than so many people in a caregiving role. Even so, the questions above draw on one’s deepest resources repeatedly along the road. One thing I know for sure, for all of us, is that filling our own cup regularly is essential to being able to juggle the needs of aging parents as they arise. As a massage therapist, I am always beating the drum of self-care with my clients—and friends—most of whom are caregivers of one kind or another. It reminds me to walk my talk, and I am grateful for both giving and receiving in this way.
Returning to the idea of paradox that began this reflection…. There are endless contrasts that intermingle on this journey of caregiving, for everyone. Love and fear, wholeness and brokenness, healing and pain, strength and weakness, joy and despair, vitality and exhaustion, duty and service—and an occasional desire to utterly flee responsibility. These may appear to be simple opposites at the ends of a spectrum, but it seems they can be experienced in such close proximity that the relationship feels more paradoxical… I believe how each person manages these complex dualities is in parts a result of what is written in their soul’s purpose, the circumstances and influences we have met along the way, and how we have used our gift of free will to learn and grow into what life asks of us. We will all fall short, in one way or another, but that is not the point. For that we are forgiven, if only we will forgive ourselves. Again and again, I come back to the power of presence. There will inevitably be times of distraction, and times when the ego and its wounds are in the driver’s seat, but it is when we are in mindful awareness of the whole of our messy human experience that we experience moments of grace, and that is what makes the suffering bearable and the joy so heart-opening.
I have been visiting more frequently with my mother since this last hospital stay, a renewed tenderness welling up in me. As her sharply hewn edges are worn softer by the transformative waves of aging, it becomes easier to exhale in her presence, leaving room to experience moments borne of genuine feeling, not just duty. I speak to our particular relationship—each parent and child have their own emotional kaleidoscope through which to view the end of this part of your journey together. For caregiver and parent, whatever palette your experience is painted from, the truth in the brushstrokes is what gives your picture enduring meaning, and a beauty all its own.