Art & Parkinson’s
More artwork and writing on the theme of “Fear & Calm”
The S.S. Hope
Some days, it feels like we’re both sinking – or, that there will be a man overboard.
Hal came up with a name for our boat: the S.S. Hope.
What would it look like? What would we patch it with? What would be our compass? (Love and forgiveness?) How to not worry when the compass momentarily doesn’t work and we’re blown off course?
The Perfect Caregiver
I seem to have this image of the perfect caregiver in my mind. Someone forever self-sacrificing, attentive, focused, never saying the wrong thing, making the wrong move, revealing her stress, her sadness, her anger. Always relaxed, graceful, gentle, maintaining balance and equilibrium. Thinking of the next thing that needs doing, acting on it immediately, anticipating, preparing for, fixing all problems. And magically finding time for herself, for her friends and family.
Who is this person? Or, more to the point, who does she think she is? Where does she live? What does she look like? If she’s such a good caregiver, she can take care of me too!
What’s New?
“What’s new,” people ask me often, meaning, what’s new with Hal? How is he doing? What changes have you noticed? How are you both coping with Parkinson's lately?
It’s hard to know what to say. Luckily, there’s usually no obvious answer. No new falls, no new medical events, no new signs of decline.
And yet, things often feel new – a new day where we wake up to a new thought about the future, a new subtle physical symptom that requires a new approach, new problem solving. A new understanding of our plight and where this is headed, a new sense of love and connection, a new team member who is helping shore up our household, a new insight about loss.
All of this is imperceptible to outsiders. So I say, “Nothing much is new. Things are status quo,” although that doesn’t even begin to capture the truth. And then, if I have someone with a willing ear – and if I can find the energy to do the hard work of explaining it, I begin to pick on the various threads and attempt to express Parkinson’s impact on our lives.
Early Morning Moments
Every once in a while, I wake up early in the morning feeling that something is wrong. It might be a sharp stomach ache, a pang in my chest or leg. Nothing serious, but my mind will go down a sudden rabbit hole of worry. What if I have some awful disease? There is a sense of dread, or terror almost. It doesn’t last long and the rationality of day quickly takes over.
But I realize how lucky I am - and that Hal is not so lucky. That he has no “rationality of day.” that he never gets to wake up from that feeling that something is wrong.
In these moments, I think I feel a visceral understanding of what he is going through. A sensation of merging with him – like a Venn diagram, but one where our circles are almost entirely overlapping. But soon comes a slipping away of one circle from the other, until only a sliver of intersection is left. That is how I go through most of our days - slipping and sliding back and forth.
Binary Thoughts
Hal and I were talking yesterday about my responsibilities as his caregiver. When do I act on my concerns about his safety vs. when do I support his need for independence?
My feelings on any given day tend to be binary: Worry. Not Worry.
I can go from one to the other in an instant. One minute I can be carefully watching him rise from his chair, find his way to his walker, and begin to inch along. I hold my breath, feeling as if my being right there is crucial to his safety and, failing that, he will certainly fall.
But then, a few minutes later, I go off to do something and forget to worry. With a kind of magical thinking, I’m confident that everything will be ok.
I’m Scared
This started off to be a gratitude list, but became a list of things I am scared of.
I’m scared that I will stop caring. I already have moments where I just let go of details (worrying about that missed meds dose, etc.) because I feel like I can’t or won’t care anymore. But something always brings me back – and I start caring again. It’s getting the right balance that is so hard.
I’m scared of facing Hal’s decline side-by-side with him. Walking him up to the cliff. What if I get too close? Scared of being weakened – having my survival threatened – in the process of caregiving.
I’m scared of writing him off too soon.
And on and on.
I finally got around to the things I’m grateful for – such as the many moments of joy that I still do have with Hal, despite my fears.
A Dream
Hal and I were visiting some people on vacation. I was in charge of driving the two of us somewhere in a jeep. We spent time cleaning it out and getting it ready, but then I realized that it had no brake or gas pedal, just an ON button. We started looking for the manual to figure out how the brakes and acceleration worked, to no avail.
Morning Sketches
