Some days the planets align and you have what one of my coworkers calls a bluebird day. A day when everything goes so perfectly, so clearly in your favor that you can’t help but hum a little “Zip-A-Dee-Do-Da” on your way out the door into clear skies,
Other days they do not. On those days you may find yourself fighting to keep from driving your own head through the nearest closed window. Or looking for the nearest clock tower.
When you’re dealing with the raising of a small child and the support of a parent in a nursing home, you can swing wildly between those extremes so quickly that at the end of the day you’re exhausted and making friends with dryer lint, just for the soft, gentle tones with which it speaks.
Not only is Mom in a nursing home, dragged out of her home of 20 years in the same year that she lost her husband and her brother within a month of each other, but she also won the no-one-has-ever-heard-of-that-disease lottery. Progressive Supranuclear Palsy. Screw you, spell check. It is too a word.
As I’m already engaging in an argument with inanimate objects, you can be pretty sure there are no bluebirds fluttering about today.
The day stared with some sort of plague complete with fever and migraine. And since I left before God woke up, I forgot my sunglasses. Forty-five minutes later, after 20 minutes of heaving and pulling, Mom was in the car, along with the wheelchair, pack of paperwork and change of clothes for the 3 hour haul to Boston to see a specialist. Or four.
Ten minutes later, I pulled off at the first exit to load in my helper for the day. My muscle was having a bad day too – he’d recently lost both his job and his girlfriend.
So my muscle sulked, my mother cried and I swore like a Tourette’s stricken pirate as traffic pissed me off, my muscle pissed me off and the morning sun mocked my misery by rising in the East just so it could glare directly into my migraine sensitive eyes.
One pit stop at a rest area for sunglasses.
$30? Are you kidding? Keep the damn things.
Ten minutes later, pit stop number two, so my muscle could use the bathroom. Ten minutes later. He is not four, so Eric has no excuse for this and deserved the barrage of mockery and harassment that resulted from that. Even my mother stopped crying long enough to give him his due ration of shit.
It should be noted at this point, less than a third of the way into the trip, that my mother is a terrible back seat driver. So much so that in the winter, when we used to car pool, I literally stuck a brown paper bag in the console and would pull it out and threaten to make her wear it if she didn’t stop telling me the roads were icy. Or there’s a slick spot. Or there’s a person walking 8 miles down the road. It might also help to know that in 20 years of driving the only accident I have ever been in was when a kamikaze deer launched off a cliff and landed on top of my car.
It might also be good to note that one of the symptoms of my Mom’s disease is deteriorating eye sight. Not going blind. No, no – that’s too easy – she is just going plain old visually bonkers – hallucinations, double vision, motion where there is none.
It didn’t take too long before her desire to drive overtook the tears.
“No, Mom they’re not. It’s the sun reflecting off their tail lights.”
“Stay in your own lane unless you want to get us killed!”
“Mom. I’m in my lane. I think it’s your eyes.”
“Where’s your bag?” This from the peanut gallery in the backseat.
“He’s coming over!”
This one got me, as I was passing a big rig and reflexively moved to the left a bit more before glancing over.
“Jeeze, Mom. He’s fine. You’ve got to stop, you’re freaking me out.”
A few moments of blissful silence.
“Look out, there’s a cow.”
“Jesus, Mom! Stop — COW! Cowww! Whatthefuckisthatcowdoinghere?”
My words all ran together as all my brain power engaged in evasive maneuvers in a brand new vehicle. Quick jerk to the left lane, then a quicker yank back to the right as I realized the cow – a full-grown black and white Holstein, wasn’t slowing or changing her path. A little heart palpitation moment when the wheels skidded a bit on the shoulder gravel, then regrouped.
Vehicle righted, I glanced in the rearview to see the car behind me recovering from a similar maneuver and the cow standing placidly next to the median, calmly grazing like it was her favorite spot in the pasture.
“I told you there was a cow.”
“Mom. Please. My head hurts. I just don’t want to talk, okay?”
“Want me to drive?”
“No, Mom. It’s not safe. You know that.”
And of course, that made her cry.
“Want me to drive?” from the backseat.
“No. Dude, you don’t have a license.”
“I can still drive.” This was in stereo.
“No. Look. I’m fine. Just no more talking. Please.”
The next two hours were relatively quiet, and on familiar enough terrain that I didn’t need any navigation assistance.
Boston exit, then I began to wonder. Exit 32B or 33B?
I called into the backseat to get some help from the directions I’d handed over.
“There’s a sign. Lahey Clinic.”
“We’re not going that way, Mom. There’s heavy construction. I got new directions this trip.”
“But it’s back there.”
“Mom it’s not a labyrinth, it’s Boston. There are many ways to get anywhere. Eric, which exit?”
“We missed it.”
“Mom, we’re not going that way this time.”
“Exit 44 onto Rt. 196.”
“You dumbass, that’s the directions to get home. I know how to get home. Dude you live off 196. Get the other page.
“Exit right at 32B onto the Mass Turnpike.”
“I have to pee.”
“I have to pee.”
“Mom, I know. We’ll be there in two minutes.”
“If you hit Lexington, you’ve gone too far. We need to go only for .3 miles.”
“Point 3? We’ve already gone at least half a mile.”
“Well, we haven’t hit Lexington.”
“Well, Magellan, you didn’t mention that part until we’d gone the half mile. I wasn’t looking for Lexington. Did you see it?”
“No, I was reading the directions.”
A quick pull off into a parking lot. “We missed a step. Give me those directions.”
“Come on there are two rights here. You missed the one to turn us onto the road with the clinic on it. We have to backtrack.”
“We’re going to be late.”
“We’re fine Mom, we have nearly an hour to travel 6 blocks.”
“I need to pee.”
“I didn’t see Lexington.”
“Enough. Nobody talks until we see the parking garage.”
As soon as I can get out of this parking lot.
Somewhere in the ballpark of 23 left hand turns later, I finally managed to get out of the parking lot and back onto the main road. Two more turns and we mercifully pulled into the cool dark of the parking garage.
Conscious of my mother’s bladder, in part because of her constant reminders, I popped the doors and ordered everybody out. You – get the chair and the walker from the back. I grabbed the paperwork. Spun Mom out and began the excruciatingly slow task of getting her up and far enough away from the car to move the chair up behind her.
Once she was seated, I slammed the door and we took off at a run, remotely locking the car as we ran, the toll money in the console and our lunch money in the glove box safe.
“Do you have any cigarettes?”
“In my bag. Wait. Mom needs to pee.”
“I can smoke while you’re in there.”
Flailing of giant yellow bag, one-handed wheelchair steering and a few choice words later, I threw them and the keys back.
“Go smoke in the car. Not out front.”
Whoever designed the restroom at the Lahey Clinic in the Main Lobby is a moron. There is no other word for it. Left turn out of the lobby into a short hall, another quick left, then a right turn in the hall to a door that is not automatic. Open door by crashing into it, immediate right turn crash into trash can, then an immediate right turn to open into a spacious bathroom.
For those of you who don’t visualize, here’s a snapshot from three separate moments in that process:
This is a high-tech medical facility. There will be wheelchairs!!!
Three assists from random strangers later, and finally I got my Mom on her feet and into. . .
Too late. I yank down her drawers and park her on the toilet anyway.
Exhaustion and migraine kick in. Gag. Don’t puke on Mom. Bend down, deep breaths and hyperventilate. Ooooo-kaaaaay.
Change of clothes is in the car. Call Eric. No cell service in the bathroom.
Exit the stall, prop wheelchair against the door so no one barges in on Mom, rush back out, across the lot, up to the 3rd level of the parking garage, across to the far side in time to hear Eric swearing.
Gag. “What’s wrong?”
“You left your driver’s door open.”
I scrambled around to the front…money in the console? Gone. Money in the glove box? Gone. Cell phone charger also gone.
Without a doubt, I am an idiot.
At least the plastic bag with mom Mom’s clothes is still there. I grabbed a clean pair of Adult pullups, tell Eric to lock up (not really sure why) and race back to the bathroom.
More huffing and puffing to get her out of her duds and into clean ones, then it’s time to get her up.
Ummmm. It’s a handicapped stall. I could put a Mariachi band to the left of the toilet. But the space between Mom’s knees and the door is hardly large enough for me to squeeze in, not a chance there is enough room to brace myself for leverage.
I try it, because I have to get her up. Instead of her rising up, my boots skidded on the wet floor, snapping me backwards to slide down the stall door, one foot to the left of Mom, the other foot stretched out into the adjacent stall. And I banged my damn head. I’ll try to pretend that I am not sitting in what is likely a stranger’s pee.
I caved, for just a moment, head back against the door, fighting off tears, the pulsing head pain and the desire to scream. And then, because there was no choice, I got up.
But the time we reversed the Austin Powers driving maneuvers and made it out into the lobby, we had three minutes.
Don’t care, he’s on his own. I race across the lobby to the West wing, snag an elevator and check in exactly on time. Point for me.
Stop number one was to get Mom established with a clinical trail in hopes that mega-doses of CoQ10 will have a positive impact on her disease. Clinical trials come with a lot of set up. Lots of questions, some video taping, lots of instructions, lots of lab work.
It also comes with lots of crying. This is magnified, or maybe entirely produced by the fact that Progressive Supranuclear Palsy comes complete with random, untriggered emotional extremes. Nothing like unexpected rage or hysteria.
Armed with a gigantic bag of new meds, we head off to stop 2. Downstairs on the East Wing.
Walking past Eric in the lobby, I just tell him to come, no time for talking if we want to hit this EKG appointment on time.
We work out a brief lunch plan on the way up to the fifth floor of the East wing and he heads back to the car to smoke again. Why didn’t I give him this giant bag of medicine?
Mom’s parked, waiting on the EKG and I decide to take the bag down myself while she waits. I need a quick smoke too, plus this bag is awkward.
Rush back out, down the elevator, across the lot, up to the 3rd level of the parking garage, across to the far side in time to hear Eric laughing.
I toss the bag in the back. “What’s so funny?”
He’d found the app for that. And was busy recording himself swearing into his device and playing it back in the voice of the cat. Oh, and just so that you know – Eric is 40.
Three quick drags, and another quick search of the console. Still no toll money.
Back across, down, over, through, up and down to sit next to Mom, who was exactly where I had left her.
Waiting. . .
“They’d better hurry, if we’re going to make the Rheumatologist appointment.”
“Hurry? I’m done.”
Wait – what?
On my feet, back to the elevator, down through the lobby and back up to 4 West.
This was a new doctor, we were here because of an unusual Rheumatology marker in some lab work the neurologist had ordered a couple of months ago.
He cut right to the chase. “So you’re here because of some lab results. But what’s here about recent surgery? What was that for?”
A quick recap, ending with a remark about a failure in follow through from that surgery that left Mom with no physical therapy. He clearly didn’t approve of that.
“Who did this? I’m going to call and see what happened there.”
Mom named her doctor and a puzzled frown drew the doctors eyebrows together.
“He’s not one of ours. Where is he from?”
“Augusta? Augusta, Maine?”
“I fucking hate neurology.”
What? Did he just say fuck?
“Neurology runs all these tests and sees even one small thing that, to me, doesn’t mean shit, and now she’s got you coming all the way down here from Maine. That’s just retarded.”
Did he just say shit? Did he just say retarded??? Wasn’t that put on the no-no list back in the late 80’s?
“Well, if it makes you feel any better, you are stop number three of four.”
“Well, Jesus, at least there’s that. And since you’re here I may as well be thorough, since there is some swelling in her hands. I’ll order an x-ray, just to check those.”
There was more, a brief explanation of why sending Mom to him was retarded, but it kind of got lost in the pure wonder of a doctor, under the age of 40, hitting so very many politically incorrect utterances in a professional environment in less than 5 minutes.
We just bumbled our way out and on to the lab, with a brief stop to collect a urine sample.
Oh, and somewhere in that Rheumatologist mess, a nurse and I heaved Mom out of the chair, onto the scale, which promptly broke. More crying ensued.
But back to the urine samples.
They gave us the cup at our first stop and I’d been toting it around in its little plastic biohazard bag since then, tucked into the giant yellow carryall with everything else. I’d put off the collection, since I didn’t really want to tote along the biohazard itself any longer than necessary. And really, I didn’t want to collect another person’s urine in a small cup. That’s just asking to be peed on.
We used the restroom in the Rheumatology wing – nice big one there. Still no door assist, but at least the stall had room enough for me, my mom, her chair and the baggage. And room for me to brace for leverage.
Cup out and ready, knickers down, hold on to her with one hand to keep her up enough to reach through, one hand on the cup.
Yup. On my hand. But the cup was full so I pulled it back to let Mom down to finish on the pot.
But you know how if you squeeze a wet, slippery thing it will shoot through your fingers?
Yeah. I squeezed. And the little cup shot out of my grasp to upend on Mom, draining most of the urine down the front of her pants to pool in the tops of her socks.
I snatched it back, capping it and placing the few precious remaining drops safely in the biohazard bag, stowed that in my purse.
And then I just looked. Thankfully, Mom was laughing.
But the idea of going back out and making the schlep to the car nearly broke me.
“It’s okay, Mom. There’s a full change of clothes in the car.”
I exited the stall and propped the wheelchair in front of the door and watched as the door slowly swung inward so I could see my Mom on the john, her wet knickers pooled around her ankles.
I moved the chair into the stall and backed out, pulling one handle with me as I went until I could barely snake my arm back out. Not closed, but Mom wasn’t hanging out for the world to see.
So I hurried.
Rush back out, down the elevator, across the lot, up to the 3rd level of the parking garage, across to the far side. Eric was sleeping.
I rapped on the window and waited until he unlocked the door. Grabbed the clothes, back across, down, over, through, up and back to Mom, who was exactly where I had left her.
Except when I pushed on the door, the chair didn’t roll forward as I’d expected. I just kind of swung around and jammed harder up against the door.
You have got to be kidding me. I had visions of a very uncomfortable maintenance man scaling the stall with a ladder to climb inside to rescue my more uncomfortable mother.
I sank me head against the door and slithered my arm in through the crack, tugging and wiggling on the chair; sliding the bolt back and forth.
Finally the world granted me one small mercy – the chair swung free and the door snapped open to tumble me into the stall.
Lock the door, sit in Mom’s chair, scooting it forward so I could at least sit for a few moments while I tugged off her pants and pull up, her shoes and her socks – compression hose, actually, which fit like they are painted on.
A bit more migraine gagging.
New stuff on, bare feet stuffed back into slightly damp shoes. I wrapped the wet clothes and deposited them into the carry sack slung on the back of Mom’s chair.
Then I stood. All that was left was to get her on her feet, her drawers up, then back in the chair. After that, I wouldn’t have to move her again until we got into the car 2 appointments down the road.
Had we really only just passed the half way mark in this day?
I gathered my reserves and my mother’s hands and heaved. She didn’t budge at all, and I was swept with a fever flash. Deep breath and again. Again, nothing. My strength was gone.
I caved again, slumping back in the chair. Except I didn’t so much slump as fall back into the chair, defeated. Except I only hit the front edge of the seat, so the chair shot out from under me to slam me down onto the urine covered floor. The chair rocketed backwards to slam into the sink, ricocheted back to strike me in the head.
Had my mother not found this hysterical, I likely would have let this be my trigger to melt into a crying, gagging, pulsing pile of misery.
Instead, I sat on the floor, this time in my mother’s pee, and laughed, my head back against the chair seat while tears just poured down.
I won’t discuss the indignity of my attempts to rise on the slick floor, or how many tries it ultimately took for me to get her up, properly covered, and back into her seat.
Likewise, I’ll leave the trip home for later too. That app – the one with the swearing cat? Yeah that was relevant. So was the stolen toll money. And Magellan there in the back brought a new set of fun on the way home.
But right now, I’m tired. And I badly need a shower. Maybe two.
And tomorrow, I’m just going to go hunt for bluebirds.