by Matt
In my first YES! care partners call, the sarcastic greeting “welcome to the lonely hearts club” triggered a smile/smirk response. The club that nobody wants to join, right?! It took me several calls to appreciate the importance of togetherness, and why our group focuses on how we are doing on our caregiving journey, rather than “how is my LO doing”? It took me several calls before I opened up. I now know that when I feel most vulnerable, I have the best potential for gain. I’m doing better on my journey, alone and together.
We caregivers confront a gradual onslaught of changes manifested by the evolving etiologies of neuro degenerative conditions. No two situations are identical, but there are many days that feel like “Groundhog Day” all over again. In my own caregiving experience one of the cruelest challenges has been having the possibility of conversation stripped away. Monthly YES! calls do a good job filling a very real void: They create a sense of togetherness wherein we each benefit from one another in spite of our seclusion.
I am no Nietzschean, but I find kinship in the German philosopher’s idea that a person needs solitude and hardship to “become who you are.” It is all well and good to pursue a career and build a home and find love, but life is also about doing things you don’t completely understand. I have my cross to bear; we all do at some point. But suffering in silence is a dreadful existence, where neither patient nor caregiver benefits. With YES! partners I feel better connected, and I’m so grateful for the love and support that breathes life into this caregiving journey.
A posture for caregiving, or a philosophy of care is abstract and hard for me to grasp. I’m more inclined to lean on science to help explain or at least identify trends in my caregiving journey. Recently I’ve drawn parallels to a term “punctuated equilibrium” that was coined by evolutionary paleontologist, Stephen J. Gould, Ph.D. A loose definition of punctuated equilibrium is: Long periods of stability (equilibrium) are interrupted by snap events (punctuations), but over the course of time an evenness fits between highs and lows, hopes and the desperations. A correlation graph would help to visualize and understand the strength and direction of datapoints and generally depict the cumulative impacts amidst point-in-time stressors. As I grapple with good and bad days, I think about evenness, stability and in my mind’s eye a depiction of a punctuated equilibrium graph sometimes steadies me.
What kinds of things breathe life into your caregiving journey? And what sucks the wind out of you? These are the blips, the punctuation points that can psychologically move a trendline upward or downward. Can mindset bias our thoughts toward the high points in our caregiving? If so, it’s possible to urge the trendline, the correlation line ever so slightly oriented upward. But it takes focus and commitment to attain optimism.
Critical events can be punctuation points; they can improve on existing norms and routines, or they can create a sense of urgency for reassessment or change. Some examples:
Highs
- Humor shared by your LO
- Visits or calls from family and friends
- Respite care by others
- Constructive outcomes with medical teams and social workers
Lows
- Behavioral changes and mood swings
- Unanticipated triggering events
- Confronting the realities of transition
- “ghosting” experiences by friends/relatives/neighbors
With a mindset that contemplates the stable times and focuses on positive punctuation points, we may find steadiness and a favorable equilibrium line. Shake-ups are bound to confront us; that’s the nature of neuro-cognitive decline. But viewing these anticipated changes with a mindset that favors the positive aspects might just be enough to carry us forward. Things happen all the time in our caregiving, and they prompt us to adapt to new ways of doing things, new rules, and reassessment of goals. After a while, seemingly “big changes” begin to calm down and settle into a new routine. Conjuring up an admittedly contrived sense of stability, the cumulative impacts might be endurable, thinking about what we’ve been through and giving us hope going forward.
Having faith or hope doesn’t always mean that we will feel good. For me, the truest faithfulness (hope) emerges when I wrestle deeply with my doubts, questions and struggles. I feel that the second and third (questions, struggles) are coequals that can exist together once the doubts are settled. Frankly I’m not there yet, but I’m doing my best. The experiences shared by YES! care partners are authentic, sometimes heart-wrenching attestations that reveal what we can do, and how we can do it. Together we get through another hour, another day, another week. And because of that, maybe we aren’t so lonely after all.
