The Great White Hurricane: Following the yellow rope to make it home safely

snow1978

I remember my dad leaning out the door — one boot on linoleum, the other on a snow-covered step — knotting a thick yellow rope around a lantern attached to the back of our house.

My mom, sobbing, clung to his belt as a screeching gust of wind unfurled a curtain of snow over our kitchen, swirling, swirling until it wrapped around him like icy fingers trying to lift him up and into the storm.

“It’s not safe,” mom cried. “You’re going to die if you go out there.”

It was January 26, 1978 and I was 12-years-old.

Local TV weathermen had predicted snow, but nothing like this.

The barometric pressure plummeted to 958 millibars, the lowest ever recorded in the United States outside a tropical region.

And we were trapped in what would become known as The Great White Hurricane.

Our rural Ohio home, built in 1843, sat in the middle of flat, open farm fields at the highest point in Medina County, a stair-step plot of 270,000 acres about 30 miles south of Cleveland.

The one-bathroom house was a humble man’s project. The beams and boards were held together by hand-hammered square nails, the walls insulated with nothing but ground-up corn cobs.

Unaccustomed to 100 mph gusts, the house snapped and popped in the whipping winds, but dad was certain it would hold.

His worry was the animals in the barn.

Our goat, Nanny, needed milked and my hand-me-down pony, Star — who had already been brushed, fed and ridden for 25 years by a dozen of my older cousins before arriving at our stable — needed fed. And both animals needed water because the troughs were almost certainly frozen solid by wind chills of -50 degrees.

The barn — three stories high and painted red — was only 90 yards from our back door, yet through the falling and blowing snow, we couldn’t spy a clue of its existence.

Dad had a plan: Tie one end of the yellow rope — the same rope he used to hang my swing from a black walnut tree the summer before — to the lantern on the back of the house and tie the other around his waist.

If he made it to the barn, he’d remove the rope from his waist and knot it around a beam, creating a sort of rope life line he could hold onto and safely journey back and forth in the blinding snow. If he couldn’t find the barn, he could at least follow the rope back home.

It seemed reasonable.

But dad wasn’t a farmer. He was a banker.

He had indulged my mother’s “Little House on the Prairie” phase during this time of their lives and agreed, more or less, that our family of three — mom, dad and me — should live off the land. He worked outside every morning and every evening. And in between, he wore uncomfortable suits and sat behind a behind a desk he never liked at the local bank.

His white-collar colleagues would hardly recognize him — the yellow rope wrapped around his barn coat, a ski mask over his face, a cigarette between his lips.

Mom and I watched from the window over the kitchen sink as dad disappeared into the whiteout after only a few steps.

It was the first time I considered life without dad.

And now, 36 years later, during the coldest February in local history, I am facing it.

You’d think a 48-year-old woman would be ready for such a passing.

Dad — who survived his trip to the barn that day and later watched, along with me and my mother, the National Guard in a full-size war tank smash through the 8- and 10-foot snow drifts that blocked our road for a week — is 83 now. He is a life-long smoker who spent decades consuming my mother’s not-so-haute cuisine, a witch’s brew of processed food she’d mix together on a whim, inspired by recipes she proudly never followed.

But I find myself ill-prepared for his death.

Dad was diagnosed a couple of weeks ago with esophageal cancer and yesterday we learned it is in his lungs.

I can hear him downstairs coughing now — a tight, unfamiliar hack — even as I type this at 2:26 a.m., a time when both of us should be sleeping.

He’s in week three of radiation now, daily treatments not aimed at slowing his disease, but at stemming the bleeding from his tumor, which robbed him of half his blood supply earlier this month.

The radiation has made it painful for him to swallow. Even soft food — like eating mashed potatoes — hurts.

Oncologists initially planned daily radiation treatments to last four weeks, but changed course when dad complained he was short of breath. A CAT scan revealed spots on his lungs and swollen lymph nodes in his chest. The esophageal cancer is spreading.

Next week, dad switches to chemotherapy in pill form. The drug, Xeloda, will attack the cancer wherever it is in dad’s body, doctors say. But the chemo won’t prolong dad’s life. It will merely help doctors manage his cancer symptoms.

Dad never complains

Today, my husband took dad to radiation and afterward, they went out for beers. Tomorrow, they plan to do the same.

When I was a girl, I thought dad was brave the day he blindly headed into the snowstorm with nothing to guide him back but a yellow rope.

Now I’m witnessing a different kind of bravery and wondering if I have inherited it like I have my father’s hazel eyes and hammer toes.

The key to coping with his death, I think, is finding my own yellow rope — an imaginary tether I can knot around the memory of my father, the love of my husband and myself, allowing me to wander bravely and blindly into the future knowing that I can forever find my way safely home again, if only in my mind.

Please remember: © Amanda Garrett and Mom and Dad Move In — from 2015 until present: Unauthorized use and/or duplication of this written material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Amanda Garrett and Mom and Dad Move In with appropriate and specific direction to the original content. Feel free to re-blog on WordPress.

Is it better to be tied to a tree than squashed on the freeway? Caregiver angst

boytree

Baby Walter — that’s what everyone called him since his dad was also named Walter and no one much liked the sound of “junior” — spent most of his single-digit years tethered to one heavy object or another.

His older sister Tina was one of my closest friends. We grew up in the 1970s and 1980s at different ends of the same rural road in Ohio, an unlined swath of blacktop connecting old farmhouses to the fields of green soybeans and sweet corn planted in between.

Baby Walter and Tina lived in the last house on the right before our road crossed over Interstate 71, the busy freeway connecting Cleveland to Columbus to Cincinnati.

And Tina’s mom — not overly protective of Tina or her older brother — worried constantly that Baby Walter would run down the slope of their side yard and onto I-71 where he would almost certainly be smashed by a semi-truck hauling automobiles or steel or some other heavy thing manufactured in Cleveland and destined for points south unknown.

Today, a doctor would likely diagnose Baby Walter with ADD and scribble out a prescription for a medication to calm him. But at that time, our patch of Ohio was stuck somewhere between “Hee Haw” and “Jesus Christ Superstar.”

We rarely questioned our fate and, if we did, we asked God via Jesus to help us, not some stranger in a lab coat. On rare occasions — like those Sundays when our preacher wrapped up his sermon in time to catch Browns kickoff — we knew God kicked in. But mostly, we fended for ourselves and worked with what we had.

That meant it was Tina’s job — and my job, too, when I was at her house — to keep Baby Walter safe by following instructions from Tina’s mom:

Tie Baby Walter to his bed for his nap.

Tie Baby Walter to the barn ladder while you’re in the loft so he doesn’t fall.

Tie Baby Walter to the tree so you all can play outside.

I know it sounds wretched now and certainly there were many what-ifs — like what if the house caught fire and Baby Walter was trapped, unable to leave his bed. But nothing bad ever happened.

Baby Walter would inevitably wrap himself around the tree like a tether ball to a pole, but it was fun — for him and for us — to unwind him until he wrapped himself around again.

He was happy, well-loved and well-fed and seemed to grow accustomed to the ritual, often waiting for someone to tie him, as if he, too, didn’t trust himself not to run into I-71’s siren song.

I’ve been thinking about Baby Walter — who must be 40 by now — all day.

This morning, before sunrise, before anyone else in our house was awake, when the temperature hovered at -16 degrees, my 83-year-old mother crept outside with her walker — wearing only a t-shirt, tennis shoes and a coat — and smoked a cigarette.

She made it back to the couch safely and we only discovered her crime when my father, who has cancer, went out for his first cigarette of the day and found an overturned coffee cup and a half pack of red Pall Malls scattered on the snow.

It frightened me, but it enraged me just as much.

How long does it take a 104-pound woman to freeze to death if she falls in the snow when its 16-below? Or how about our dog or two cats that always hover around the front door?

My mother has a combination of Alzheimer’s and vascular dementia (caused by smoking). She also has spinal stenosis and scoliosis that leaves her bent at a 50-degree angle, unable to straighten, unsteady on her feet and challenged to hobble on a walker more than a dozen feet without sitting down.

Her physical frailty has in some ways made her mental frailty easier to deal with. I can almost always catch her before she runs amok. But it’s done nothing to temper her bullheadedness or nicotine craving (yes, I’ve tried and failed to convert her to patches and gum and e-cigarettes).

From the first week mom and dad moved in, there has been a single rule that has dominated our lives: Mom must never go outside — or even open the door — unless someone is at her side.

Her dementia has stolen much of her left brain, always her weakest side. She doesn’t know $5,000 from $5. But even now she knows the door rule and knowingly broke it for a cigarette.

Nursing home was my first thought. I’m nearing the end of my caregiver rope.

Standing by my dad as he negotiates cancer — an oncologist today decided to end his radiation a week early so he can go on chemo because the tumors in his lungs are leaving him short of breath — is exhausting. And it’s sad.

Lassoing my mother’s wants and needs at the same time is nearly impossible.

But here’s the thing: My dad’s final chapter is closing.

And even though my mom isn’t the woman she was — and both OG mom and dementia mom make dad bats — I know he’d rather have her close as he fades away.

So I’ve got myself a Baby Walter dilemma: How do you prevent someone you love from running into traffic and getting killed?

I have a tree, but I’m unwilling to use a tether.

Please remember: © Amanda Garrett and Mom and Dad Move In — from 2015 until present: Unauthorized use and/or duplication of this written material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Amanda Garrett and Mom and Dad Move In with appropriate and specific direction to the original content. Feel free to re-blog on WordPress.

Would you let a nursing home kitchen assistant negotiate medical care for your mom and dad? Some are.

nursinghomeladies

When my dad and I were waiting for his daily cancer radiation treatment yesterday, a gangly, good-natured kid wheeled a woman into the room and parked next to us.

He was in his early 20s and could have passed for the woman’s grandson the way he doted on her, tucking a hand-crocheted blanket around her shoulders, making sure she had enough water to drink because a medical condition dried out her mouth.

But he was an employee at the nursing home where the woman lived — the highest-rated facility in our county and one of the best in all of Greater Cleveland. Hopeful residents each fork over about $5,000 to get on the facility’s waiting list and often spend years elsewhere before a space opens in independent, assisted-living, nursing or memory care units.

After a nurse wheeled the woman away for radiation, the young man told us he started working in the nursing home’s kitchen in 2009. A few months ago, one of the nursing home’s two transportation jobs opened up and he landed it.

He figured it would be a simple job, driving the residents — about 300 — to places they needed to go. But it has turned out to be much more complicated.

All of residents have lots of medical appointments and besides the transport obstacles — safely getting people on walkers, canes and in wheelchairs into and out of offices through ice and snow — most need help handling their insurance and medical questions and answers with doctors and nurses.

What? My face froze.

So you not only drive them, you act as their representative at doctors’ appointments, I asked, just to make sure I understood.

Yes, he said, shaking his head. It’s a shame, he said, how so many families absolve themselves of all responsibilities once a loved one is ensconced at a nursing facility.

A few minutes later, dad and I were sitting in another room with his oncologist. Dad told her he had started having pain in his esophagus near where his tumor is. She said she would write a prescription for a soothing serum to coat his throat that contained Benadryl as one of its main ingredients.

Wait, I interrupted, dad already takes one Benadryl pill every night before bed to help him sleep. Couldn’t that be a problem?

Yes, she said. Dad should stop taking the nighttime Benadryl because taken together, the serum and the Benadryl, could cause him to fall.

A fall — even though dad’s cancer is at Stage 3 and only being treated palliatively — is more likely to kill dad than his cancer, another oncologist told us after dad asked him how he would likely die (the other most likely way is aspiration).

So this seemingly simply Benadryl mix-up couple have been an early death sentence.

Would the good-natured nursing home transport driver have caught this potential medical mistake if he took dad to this radiation appointment? Doubtful.

I’m a veteran newspaper reporter — trained in both reporting facts and asking tough questions — and I have a difficult time managing medical care for my parents, two people I love.

How would a kitchen assistant turned driver manage this for strangers? And why should anyone expect him to?

No matter how good his intentions are — and they seemed exceedingly good — the nursing home driver has no medical training and far too many residents to know each of their medical needs and vulnerabilities.

Later, on our drive home, I asked dad if he was surprised how that nursing home depended on its drivers. No, he said, but he thought it sad, especially considering how much people pay for their care.

The nursing home driver told us the woman he brought to radiation that day shells out more than $8,000 a month. More skilled nursing care or the memory unit — a separate, locked-down facility for dementia patients — costs residents much more, he said.

What do residents get for that money? Some were on a field trip to nearby Harry London Chocolates that day to see how bon bond and chocolate-covered pretzels are made. Tonight, a group of residents is putting on a stage show open to the public.

And one day a week — the day many residents live for — the lobby is filled with therapy dogs who wag and lick away loneliness and fear.

All of that is fantastic. It’s also a clean, well-run facility where many residents feel a kinship with staff. I know. My aunt was a resident and I’ve been a visitor.

Yet none of this makes up for a kitchen assistant being promoted to a driver whose job also includes negotiating residents’ off-site medical care.