Ten Tangible Things
Actual, physical stuff to help with the Parkinson's/caregiving scene
One side-effect of losing my dad is that I still have problem-solving thoughts about Parkinson’s. My first impulse is to run them by him. It’s reminiscent of my recurring dream, the one where he isn’t actually dead: I just need to go find him. Of course, yeah, why didn’t I think of that.
Except! These Parkinson’s-thoughts are not haunting for haunting’s sake. They’re pragmatic, possibly important?
Maybe. I’ve pulled them from inside the pillowcase out and into daylight for judgment. As of now, I see Ten Tangible Things for Families & Parkinson’s.
Before I forget these hopeful ideas—some tested, some theoretical—I’m sharing them here:
silk sheets
automated medication dispenser
ubiquitous grab-bars
walking aids (including good slip-on shoes)
the phone number of a good social worker
updated DBS charging equipment
a separate, physical space that allows for calm
electronic dental care
walk-in shower
viable forms of Vitamin D
Although these don’t each need their own, separate essay, I frankly won’t get this writing done unless I break them up. First week of pre-school. You get it.
Silk Sheets
My dear friend, Terry, once told me: “Do yourself a favor and start a fund for linen sheets.” Eternal wisdom was her usual.
However, like my dad did, Terry has Parkinson’s. The sleeping/not sleeping body of such a person doesn’t stand a chance against a flaxen bed. She hasn’t given them up, but my dad and I opted for another luxurious fabric: silk.
(Okay, we ordered satin. Same effect, different budget).
While satin and silk lack the thermal/cooling abilities of linen, they do allow for movement, and that went far—it’s no small feat to grease the wheels of Parkinson’s.
I assume my dad was a night owl from the beginning (bless you, Grandma Bette). Karaoke, hijinks, beer, movies, ice cream: the nightlife was for him. As time went on, so did the TV.
Bleary-eyed and sighful, he made a reluctant, nightly ascent from his electric recliner to bed—only to wake frequently to vivid dreams and restless legs, fighting comforter and sheets like a spook from Scooby Doo.
I wonder how rare it is to genuinely solve a chronic health problem with a physical item. Surely we are better off with the countless medical interventions and tools available than the alternatives of nothing. But many helpful things, even as significant as deep-brain stimulation, had dramatic draw-backs or even temporary improvement for my dad. Silk sheets? Not so.
After I helped him make his bed—a challenge for anyone, though much easier with spritely satin—he tried them out. The slippery pillowcases allowed him to turn his neck and head comfortably; the sheets carried his limited momentum, so he could change sides as needed. He was able to sit up and exit the bed with less overall angst. A success.
This memory itself is tangible to me, the look on his face when he opened the package to violet-colored satin sheets (limited supply!). His improved rest, his renewed motivation to hang dry them on the line with me. I only wish we’d thought of it sooner.
And I only hope it’s a useful recommendation to someone else. The quality of life of a family member, your spouse, your friend, or neighbor, really does rebound with our own. Caregiving or not, I suppose.
As always, thanks for being here,
Bette Jane