It's 3AM, Can We Talk? (Part One)
It is 3:15 a.m., again...and I am finding it difficult to fall back to sleep for yet another night. So, just in case the love of your life also has Parkinson’s disease, maybe you’re awake too? My day was crazy, and tomorrow is filled with another trip to the neurologist (or maybe another something-ologist, work meeting, or school activity, who knows!). Tell me about your loved one with Parkinson’s, and I’ll tell you all about mine.
Might as well, right? Because I’m not falling back to sleep anytime soon! Are you? This 53-year-old-completely-gray-all-too-soon-hott-mama-of-four finds herself awake contemplating the many hats I wear of which the best role of all is being, and this may surprise you, a care partner.
Parkinson’s disease care partner
My hott-hubby was diagnosed 10 years ago with a chronic neurological illness for which there is no cure: Parkinson’s disease. While although that sounds devastating, don’t get me wrong because it really does suck...it’s not the end of the world. What it is, though...is a never-ending daily dose of: “What can I do for you today?” or “How can I help you at this moment?”
And, do you want to know what is really, really hard? There are days when the answer to that question “How can I care for you right now?”, is this:
Take last night, for instance. My Hott-hubby was looking for his last dose of levodopa from the medicine cabinet. His daily routine includes counting out a dozen plus pills that assist him with his physical needs throughout any given day. As he prepares for bed, I hear a crash and the sound of a plastic bottle pop off the bathroom counter, roll across the tile, and tiny pills scatter like rain on the bathroom floor.
Yikes! He’s dropped his pills...again. What do I do? As I wait for the steady stream of curse words to erupt, The care partner in me wants to run to the rescue and shield him from yet another frustration. Many times he will call for assistance, while other times he just grumbles a bit and rounds up another dose.
For the life of me, I can’t figure out why prescription bottles aren’t more Parkinson’s person friendly! You try opening a tiny pill bottle with a frozen arm or trembling hand and just see how many pills fall on the floor, right?! I get that they need to be tamper resistant and safe and all that, but; Gheez-Louise...how hard would it be to invent a prescription bottle that dials out the drugs easily and conveniently for folks with physical handicaps? (Oh wait, that's my job.)
Normally, I jump up to help
As his Parkinson’s progresses, my role as aare partner has evolved to becoming his left hand. Ok, I'll admit it..., car repairs and home maintenance are among my least favorite tasks I have often been required to perform, and unfortunately, it seems never to his liking. My left had often is literally an extension of his; and for some reason...I still can’t quite connect it to his brain. Other times, it’s easy tiny tasks, like picking up a roaming pill or retrieving his glasses. And, for the most part, my help is met with kind appreciation; yet, I can see the frustration on his face that simple little activities are hard to conquer with his PD.
This time, seeing that I have already crawled into our warm bed, set the alarm for morning, and tuned in to our recent Netflix binge of Shameless, I decide to call out from the other room:
“Need some help, honey?”
After all, why get up and run barefoot across that cold tile bathroom floor if I don’t have too? Because you can rest assured, when Parkinson’s Disease wants to wake us both up,...
Good night, (or "Good Morning!"), my PD care partner friend! Let's try to get some sleep now.
Read part two here.
Do you or a loved one use smartphone apps to help with PD management?