“Oh, I love it when you come home from your parents’ with pills,” Don said, eyeing the prescription bottles on the dining room table. “It means there’s a story.”
There’s a story.
Indy’s Parkinson’s diagnosis added several new medications to his day. That’s hard for Indy. Before the Parkinson’s, Indy took three prescription drugs – two in the morning, one at bedtime.
The Parkinson’s diagnosis tacked on three medications to his morning and two to his evening. It also meant Indy needed pills at lunch and another round in the late afternoon.
Well, it was supposed to go that way. It didn’t. But we’ll get to that.
Even worse, one of Indy’s Parkinson’s medications required him to take two-and-a-half tablets three times a day to get his required milligram dosage.
Complicating things even further was Indy’s October hospitalization. His doctors suspended the pill he takes in the morning and late afternoon. It’s meant to increase his blood pressure so he doesn’t get dizzy.
He tends to do that when he stands up. His blood pressure drops, then he drops.
The medication was working a little too well, thanks to the infection Indy had at the time. His blood pressure was astronomical. We were told to hold the medication and to periodically check Indy’s blood pressure. A low blood pressure was fine as long as Indy wasn’t dizzy.
Willie dutifully and periodically checked Indy’s blood pressure once he was home.
Well, dutifully after I reminded her.
Indy’s blood pressure would be low. Not a good low. A significant low. But he never got dizzy.
Remember – low is fine. Dizzy is not fine.
Willie, however, is a retired cardiac nurse. When you’re an old cardiac nurse, low is always bad. Low needs to be fixed. So even though Indy’s doctors said to hold the medication as long as Indy wasn’t dizzy, Willie wanted to give Indy the medication.
Not to make Indy feel better. To make Willie feel better.
Because that’s how practicing medicine usually works.
I knew Willie would want to give Indy that medication. I knew Willie would never remember Indy had gone to the hospital with blood in his urine but needlessly became a stroke workup. I knew the fact that Indy was not symptomatic would mean nothing to Willie.
So the day the doctors stopped Indy’s medication, I took it from the Temple of Doom. I was like June Carter taking all the pills from Johnny Cash’s house. I was Karen Hill, dumping drugs into my purse instead of the toilet. I was Andrew McCarthy, cramming RDJ into my convertible to whisk away to some drug-free Ivy League school.
Remember the cough syrup? Remember when Indy and Willie became Sid and Nancy? Remember when they were doing shots of prescription cough syrup like teenagers at a frat party?
I do. Everyday.
Willie called me one day to say she couldn’t stand to see Indy’s pressure so low, even though he felt fine. She wanted to give him that pill but couldn’t find any. “I thought I still had some left over,” Willie told me. “I guess I don’t.”
Willie is just the worst drug dealer.
I didn’t remind Willie that I had the medication. I did remind her how dangerous giving Indy a pill just to satisfy Willie could be.
Willie agreed. Reluctantly. Because Willie is not good at refraining from doing things that Willie wants to do. The consequences are, to Willie, inconsequential. Largely because she always makes those consequences someone else’s problem.
Hi. Someone Else here. Nice to meet you.
Almost a year later, Indy is still off that medication. That’s just an indication of how far-reaching one urinary tract infection can be in an octogenarian suffering from Parkinson’s.
And speaking of that Parkinson’s, Indy had an appointment with his Parkinson’s neurologist a few weeks ago. She was excited to tell us that Indy’s one medication – the one that is two-and-a-half pills three times a day – now comes in a formulation that would make it one pill three times a day. Would we want that formulation?
“Yes!” Willie exclaimed immediately. She is the chief pill cutter and dispenser. Less pills to cut made her day.
But when the pills arrived a week later, Willie was furious.
With me.
I sauntered into the Temple of Doom, dropping into a seat at the dining room table. Indy and I chatted as I set up my laptop for his telehealth speech appointment.
I refuse to use Willie’s laptop. It’s slow. And has some kind of large print thing going on. And it’s sticky.
Probably from cough syrup.
Abruptly, Willie stalked over to me with a handful of pill bottles. She slammed the bottles down in front of me.
The new bottle Willie had been so enthusiastic for now had her incensed. And – as with all things in Willie’s world – I was to blame.
The problem? Even though this formulation was an easier one pill than two-and-a-half, it was still three times a day.
Willie loves to tell me how “all the research” shows people are more compliant with medication if it’s given less times per day. Indy’s three-times-a-day medication regimen is a burden. Sometimes, he and Willie forget a dose. If “they” can make this medication from two-and-a-half pills into one, why can’t “they’ make it less times per day?
Just to be clear, when Wille says “they”, she means me. She means why can’t I make Indy’s pills less times per day.
I can’t tell you how many times we’ve had this conversation. This isn’t an antibiotic or blood pressure medication with loads of options to choose from. Parkinson’s has one drug. One.
That one drug usually has to be given three times a day.
I’m pretty great, but I can’t change the pharmacology of a pill. Or the nature of a disease.
I took a deep breath to quell my frustration as I launched into the explanation. Again.
I was about two sentences in when Willie cut me off.
“Don’t condescend to me!” Willie snarled. “I’m a nurse too!”
Yikes.
Well, you guys know I wasn’t being condescending. When you’ve had a discussion multiple times, when you’ve been blamed for things that could not possibly be your fault, when you know this dynamic will play out again and again, it’s hard to keep your frustration from slipping into your voice. Your face. Your body.
It’s also hard to not want some sharesies on that cough syrup.
So I told Willie that.
Well, not the cough syrup part.
I also called her out. Indy, too, which was hard since he’s so awesome. But Willie and Indy, three years into Indy’s Parkinson’s diagnosis, have not reckoned with it. They act like it’s a bad flu – find the right combination of treatments and we’ll banish it forever.
There is no combination. There will be no banishment. We’re not talking Napoleon here. We’re talking Putin. It’s pretty much a permanent situation.
Parkinson’s is chronic and progressive. I told Willie and Indy their days of Indy taking three pills twice a day are over. For the rest of Indy’s life, his medications will only become more complex.
It took me so much Starbucks to recover from that conversation.
“Fine!” Willie grunted.
I was already in trouble so I decided to go for broke. I told Willie she should give me the old formulation of Indy’s pills. I reminded her of how forgetful she is. I explained if she ran out of the new formulation of medication – the one pill three times a day – and used an old bottle, she’d dramatically cut Indy’s dose. That’s potentially disastrous in Parkinson’s.
“I’m a nurse too!” Willie reminded me.
Again.
“I read the directions before I dispense the medication! That’s basic nursing! I’m not giving you those pills!”
Right.
“And explain THIS to me!” She dumped another round of pill bottles in my lap. This time, she was angry because the three pill bottles – all containing the same drug – had different directions. The first bottle instructed that the medication be given three times a day. The other bottles said to give it just once a day.
“Why?” Willie demanded, the implication clear that I had caused the medication change, mysteriously offending Willie in the process.
“Well,” I began, “Indy was supposed to take this medicine three times a day. But you – the nurse – read the directions wrong and only gave it once a day. The once daily dosing worked, so Indy’s doctors decided to keep it at once a day.”
Indy laughed.
Willie made a face. Then she brought me the pill bottles of the old formulation, the ones she told me I wasn’t getting. I could take them from the Temple of Doom.
I didn’t like winning that way. Except I kind of liked winning that way.
Yesterday, I found out Indy has to go back on the pill for his dizziness – the one he takes in the morning then again in late afternoon. Worse, Willie will have to check his blood pressure regularly for a bit. Worse still, the pill needs to be cut in half.
I’m headed over shortly to tell Indy and Willie.
I might need something stronger than Starbucks.
If only they’d share their cough syrup.