American Greetings: Cleveland Greeting Card Maker’s Class Act and My Hunt for the Perfect Card

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A couple of weeks ago, I wrote about my failed quest to find appropriate greeting cards for the old, the sick, the dying and their caregivers.

Someone from American Greetings reached out to me a few days later on Twitter. I was hoping the card maker wanted my advice — I am a writer with insight into these topics, after all —  but alas, the company only wanted my mailing address.

This week, a box, shipped priority mail, arrived at my home with scores of greeting cards the company thought I might find useful, along with a card addressed to me with a hand-written note.

“We know the path you are traveling is difficult, but the work you are doing is so important,” someone at American Greetings penned to me in blue ink. “May you continue to find strength as you care for your parents, as well as many moments of love and peace.”

What a class act. Thank you American Greetings. Makes me proud to be a Clevelander (American Greetings is based in suburban Cleveland) and, I concede, your generosity makes me more likely to choose the American Greetings label.

Inside the box, there were a mix of greeting cards — birthday, encouragement, get well (designed for those who may never fully get well from whatever ails them) and sympathy.

All were appropriate. Most were generous and kind. But none was funny — something that many may appreciate, especially in not-so-happy times (not an easy card-writing assignment, to be sure).

My favorite cards inside the package — and I didn’t know American Greetings was behind this line of cards — were the Papyrus brand, the cards that use a hummingbird as their symbol.

The covers of Papyrus cards are usually tactile — with intricate beading or multiple layers of paper or other adornments. And each is wrapped in a clear, cellophane-type envelope, so there’s no danger of the card getting ruined on a grocery-store conveyor belt.

But the true beauty, to me, is that many Papyrus cards are blank inside, leaving you to be as sentimental, sardonic or supportive as you dare.

If only my handwriting — misshapen, haphazard and coded from years of newspaper reporting in the snow, on doorsteps and in front of unpleasant  crowds — was clear enough to read.

—————————-

Here’s a copy of my blog posting that led American Greetings to send me the cards: 

My mom’s cousin, Dorothy, turns 84 this month and I can’t find a birthday card.

Dorothy, like my mom, grew up poor.

(How poor? Dorothy likes to tell a story about coffee grounds: Her mom used them once for a fresh pot, then a second time for a not-so-fresh pot. Afterward, she carefully packed up the grounds and gave them to my grandmother, who squeezed out whatever caffeine was left for a third pot, thankful that her family had coffee at all.)

But like so many of that generation, Dorothy climbed into the middle class, working a good-paying factory job, marrying a man who did the same and frugally saving until they could buy a tidy ranch in a rural swath of Northeast Ohio where they lived for 50 years.

Life was good until last summer when Dorothy fell over picking strawberries in her garden and bonked her head on a stone.

She ended up in the hospital and shortly after, her husband, Lou, fell and broke his ankle.

Dorothy is home now, isolated, unable to drive because her fickle heart sometimes frolics causing her to faint. And Lou is in a nursing home 12 miles away, confused and calling daily, begging her to pick him up, unsure what he’s done to be sent away from his wife and the home he loves.

Happy Birthday? That, to me, implies Dorothy’s past year was swell and her next year — if there is a next year — will be better.

Nevertheless, a birthday card is necessary. If mom doesn’t send one, it’s more than a slight. It’s an invisible white flag conceding life has ended for both mom and Dorothy even though each continues to breathe.

So, as a pharmacist bagged up 28 prescription refills for mom and dad yesterday, I pawed through racks of birthday cards.

I first gravitated toward a slew of funny, acerbic old lady cards that mom and Dorothy would have happily picked for one another just a decade ago. But jokes about diapers or forgetting your name aren’t funny when they’re true.

Next I discovered a whole birthday genre dedicated to: “We’re both so busy, I never tell you how special you are.” Inappropriate when life turns into a series of medical appointments with naps and tv in between.

The rest were a hodge-podge encouraging the birthday girl to party, to swill wine until drunk or to do something special or naughty just for herself. No. No. And double no.

At least 80 cards into my card safari, I abandoned the hunt. I paid the pharmacy clerk $500-plus for drugs extending my own parents’ not-so-pleasant lives and hauled my mini-drugstore home, hundreds of pills in bottles rattling like tiny, sad maracas.

This isn’t the first time I’ve had this card problem. Since my parents moved in, I have been their personal shopper for all cards and gifts they give to each other and anyone else (including me).

Anniversary, Christmas, Sweetest Day (an Ohio tradition concocted generations ago by a clever local chocolatier): Each holiday is filled with land mines and chasms of time that neither candy nor warm bathrobes can cross.

Even buying cards for them is impossible. Most cards grown children give their parents involve “thanks”– thank you for all that you do, thank you for supporting me, thank you for bringing joy to our lives.

I’ve given scores of these sorts of thank-you cards to mom and dad over the years. And I thank them now for being the parents they have been. But the sad truth is, they should be giving me and my husband these thank-you cards now.

And that’s impossible because I would have to buy them. And I wouldn’t, fearing that such a move would trigger a weird psychological echo chamber, maybe even a worm hole for unplanned traveling through time.

But picking out sympathy cards is the worst. And I buy a lot of sympathy cards. Being in your 80s — like my parents are — is not unlike being in your 20s. But you’re sending sympathy cards and attending funerals instead of buying shower gifts and toasting with bad wedding champagne.

Of course it’s sad when anyone loses someone they love. But what is the appropriate sentiment when someone’s body dies years after their brain withered, leaving them a shell? Or when a person, who has longed for the Grim Reaper’s visit, dies after years of suffering, pain and loneliness?

Those passings, I always think to myself, should be celebrated (even if bittersweet).

Unlike so many birthdays, which now seem better off mourned.

Poor Dorothy.

I don’t know what we’re going to drop in the mail this year.

Maybe a blank card, scrawled with words of love and an old photo of better times, a snapshot of her and Lou smiling alongside mom and dad, martinis raised in jubilation.

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.

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

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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

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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.

Dancing behind — and in front of — the Grim Reaper

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The night before I started my first newspaper reporting job in 1990, my grandfather died.

I didn’t mention it to my new colleagues. And they may have never known, but this was my hometown newspaper and my first assignment was obituary duty.

When the funeral director — the only one in town — called, I carefully jotted down the information about my 91-year-old grandfather’s services and quickly puddled into tears a few minutes later when I pulled a photo from newspaper archives to run with the story of his death.

And so began my newspaper career, much of it an awkward and uncomfortable dance behind the Grim Reaper.

I never wrote many obituaries — although I always enjoyed it.

When a reporter calls family and friends of a dead person for an obit, people usually welcome the interest, rattling off tales of heroism, humor and generosity.

If you can keep the conversation going long enough to cut through the worthless surface platitudes, you’ll find that everyone — from prostitute to priest — has at least one moment (or more likely, many moments) of his/her life that’s worth reporting.

Lost love, found treasures, unshakeable secrets or a double-life exposed.

But much of my reporting career has been devoted to a different kind of death story: The aftermath of violent or other newsworthy passings — homicides, terrorist attacks, horrific accidents — and the people who are to blame.

Reporters mostly dread these stories because no one wants to talk. People hang up on and slam doors in their faces.

That aspect wears on me, too, but I had unconventional training that so calloused me, I can push forward when other reporters sometimes give up. In college, I worked as both a telemarketer and door-to-door fundraiser. I was cussed out, chased off property by people and dogs and once, threatened by a woman who said she had a gun.

Hang-ups and slammed doors are nothing.

I’ve written about the foreign terrorists and those they killed on 9/11; and the domestic terrorists and those they killed bombing the Oklahoma City federal building in 1995.

I’ve covered men hunting down and killing their wives in front of their children. And teens not yet old enough to drive killing others at random.

In Cincinnati, I wrote the story of a Holocaust survivor impaled on her own femurs when the elevator she and her weekly card group were riding in plunged into the basement of an apartment building.

In North Carolina, I unfurled the story of a mentally ill World War II veteran who killed his bunkmate with a machete in the 1940s and then used a metal walker to beat to death a World War I veteran at a Veterans Administration nursing facility in the 1990s.

And in Ohio, I helped piece together the horrific story of a woman — pretending to be pregnant — kidnapping and killing her pregnant neighbor so she could pass off the nearly full-term baby as her own.

You’d think I would have learned something about death, grieving or human nature over 25 years.

But I haven’t.

Every conversation about these kinds of deaths is uncomfortable and awkward.

Every word written a chore.

Now, for the first time I find myself dancing in front of the Grim Reaper — caring for my dad with cancer and my mom with dementia before they die.

Obituaries are supposed to be the easy kind of death stories to write.

My parents are in their 80s. They have lots of life moments worth sharing.

There are no calls to make, no doors to knock on.

I am both the reporter and the source for their death stories.

Yet I can’t figure out the first word to write.

Caregiver gripe of the day: Doctors who scribble prescriptions for drugs patients need the same day

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Today dad received his first of 20 daily radiation treatments.

But before the technologist even wheeled him back to the giant machine, she handed me a prescription an oncologist had written for an anti-nausea medicine dad is supposed to take 30 minutes before each appointment.

Two questions:

A) Why wasn’t this prescription provided earlier so dad could have taken the pill before his first treatment?

B) Why didn’t the doctor phone/fax/email the pharmacy so I wouldn’t have to stop twice — once to drop off the prescription and once to pick it up?

Doctors: Patients who don’t feel well and family caregivers — who often are juggling so many responsibilities that one more seemingly simple task could break them — need your help streamlining every aspect of medical care, including prescriptions.

There is no reason to write a prescription and hand it to a patient. Doctors should make sure their staffs submit prescriptions to the pharmacies of their patients’ choice for easy pick up.

This especially holds true for doctors prescribing medications to hospital patients in the hours before a patient’s  release. Trying to get a hospital patient home comfortably is difficult enough without having to stop at a pharmacy on the way. Or perhaps even worse, a caregiver must abandon the patient at home alone while he runs back to the pharmacy and waits on the medication.

In my case, dad is already weak from his cancer. And after today’s radiation, he is especially wobbly. Yet I left the poor guy in the car — not yet warmed up, when it was 18 degrees outside — while I dropped off the prescription.

Why? I — like so many other caregivers — have few choices.

I’m straddling caring for my mom, who has dementia, and my dad, who has cancer and other health issues. But others are juggling kids and jobs and the needs of others’ too.

So now, as I type this, my dad is sleeping in his recliner and my mom is planted on the couch nearby. I’m running out to pick up the prescription, hoping that nothing goes wrong while I’m gone.

This all could have been avoided if the oncologist would have submitted the prescription to the pharmacy herself — and maybe even done so a few days before it was needed.

Life, as George Carlin used to say, is a series of dogs…

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My husband is at the veterinarian’s office with my parents to euthanize their elderly dog, Missy.

Missy has full-blown doggy dementia — yes, that’s a thing (I wrote about it last month on this blog).

We likely would have tried to care for Missy a few more weeks, but my dad decided it was time.

He begins palliative radiation treatments for esophageal cancer Tuesday and, in many ways, I’m thankful Missy will be gone so we can concentrate on dad’s care.

But this is the first time my parents haven’t had at least one dog of their own since they married nearly 60 years ago.

It’s also the first time they haven’t lived in their own house, haven’t handled their own medical appointments and haven’t paid their own bills.

It’s an awkward, painful and unnerving time straddling the end of this life and whatever comes next.

I watch from a distance and wait to be infused with new wisdom I can carry with me from my 40s into old age. But none ever comes.

So as I pack up Missy’s food and water bowls for the SPCA, I pet my own mutt and wonder how many more dogs my husband and I have left.

Should I pass the unlawful Dutchie to my dad? Some may call me the gangster of love

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I started a shopping list today for all the things dad will need when his palliative radiation therapy begins.

–Aloe vera gel to soothe the burned skin on his chest where the radiation will be aimed

–A couple of pairs of sweat pants – as foreign to my khakis-wearing father as leather chaps or a Speedo – to slip into and out of before and after daily treatments

–A new blender to churn high-calorie smoothies if the low-dose radiation makes it too painful for dad to swallow food

And then, before the thought clearly formed in my mind, I jotted down the word “Marijuana,” followed by a question mark.

Pot, medical or otherwise, is illegal in Ohio.

Come November, competing proposals will be on  a statewide ballot and one will likely pass  — 87 percent of Ohio voters favor legalizing medical marijuana, a Quinnipiac University poll shows, and 51 percent favor of legalizing pot for recreational use.

But that is far too late for dad, whose radiation treatments will likely begin next week.

I’m usually a pretty tough law-and-order gal. I believe that our society works best when we agree on a set of rules (laws) and abide by them (or work to change them).

But like many otherwise law-and-order types, I’ve strayed when it comes to the ganja and I understand why others do, too.

The first time, not surprisingly, was in college. It was pretty random — a puff or two at a party — until I started dating a musician whose basement was a high-tech hydroponic wonderland of jungle-green experimentation.

It was a short-lived weed phase that ended happily, along with the romance.

I never thought much about smoking pot again for 20 years until surgeons, pain management specialists, acupuncturists, Reiki masters, yoga instructors and God all failed to ease my mother’s chronic back pain.

Pot was worth a chance , I figured, since all else failed and I turned to a friend of a friend and bought three joints — pre-rolled because I don’t know how.

My husband gave two joints to my mom and kept one for himself to smoke on vacation (I have asthma, so smoking’s not an option).

The great pot experiment of 2010 was a failure. Mom, a 60-year cigarette smoker, said the pot provided no back pain relief. And worse, it made her throat sore.

And my husband – who also hadn’t toked since college — smoked and then inadvertently stepped into a backyard pool and up to his neck in water while walking and talking on his mobile phone in Florida. I witnessed this.

Shortly afterward, as we ate dinner poolside, hubby insisted the neighbors weren’t humans, but animatronics figures.

He later concluded that pot today — or at least the pot we found — packs a much more powerful wallop than the mellow, giggly weed of our Nirvana and The Pretenders days gone by.

We haven’t bought pot since, but I’m thinking now that today’s super pot might be just what dad needs.

If he smokes, I won’t let him near a pool. He won’t be operating heavy machinery. He’ll likely be sitting in his favorite chair — a sway-back, green leather recliner — reading Tom Clancy novels and trying to ignore my mother.

He’s 83. There is no cure. He’s in palliative care to control his symptoms. And weed seems like a better first option than the morphine, oxycodone and other crazy legal drugs that will be available legally.

If a dime bag might relieve some of dad’s symptoms, I say it’s worth a try — even if it is illegal.

Who wouldn’t go misdemeanor gangster to help someone they love?

What patients don’t have, but need: A qualified counselor to fill in the blanks of “Here’s what I would do…and here’s why”

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My 83-year-old dad this week was diagnosed with squamous cell esophageal cancer, Stage 3.

There are no options to cure it. So now dad must decide whether to do nothing or to seek palliative treatment with radiation, chemotherapy, or a combo of radiation/chemo.

Doing nothing means he will probably die this year. Treating it means he’ll likely live longer, but each option brings its own complications. Radiation, for example, will likely inflame his esophagus so much that dad won’t be able to eat, necessitating a feeding tube.

There’s no good estimate on how much longer dad may live with treatment or how long treatment could stave off some symptoms of the disease, like pain or internal bleeding.

So how do you choose what is best?

Thirty years ago, my dad’s father (my grandfather) faced the same cancer and needed a feeding tube to keep him alive.

Grandpa — in a nursing home at that time — couldn’t make his own decisions, so dad, at the strong urging of a physician, agreed to the feeding tube.

It has been one of the biggest regrets of dad’s life. Dad believes he unnecessarily prolonged my grandfather’s suffering for nothing.

But that was a different time: Physicians often told patients what to do and patients followed their advice without question.

Now, the medical pendulum is stuck on the opposite side.

Physicians often lay out the options and let patients sort it out for themselves — without any guidance at all.

I vastly prefer patients making their own informed decisions, but there are pitfalls.

These are often technical, multi-dimensional choices and patients might not consider everything they should: What will their quality of life be? What will their insurance cover? Are they more likely to die in an emergency room or at home?

Here’s what patients and their families need: An objective, battle-tested medical professional who understands their physical, emotional, financial and spiritual needs and then fill in the blanks — “Here’s what I would do…..and here’s why…..”

I don’t think practicing doctors have time for this holistic approach. And I’m not sure I would trust all of them since the medical system has built-in financial incentives that don’t benefit patients.

So then who? I wish retired doctors and nurses (and even those still working) would volunteer for this duty. And maybe this is a profession all its own, provided insurance would cover this service.

Last night, after dad got home from the hospital, my husband stood in the snow during a freezing rain and cooked dad a steak on the grill.

Tonight, in the comfort of my kitchen, I’m making dad’s other favorite: Pan-fried perch from Lake Erie.

I don’t how dad will choose to handle his cancer.

I’m researching and we’re still talking. We meet with the oncologist again Monday.

But I will stand by his choice, whatever it is.

P.S. Here’s a link to a great essay by a Boston doc…who uses her experience as both doc and, in the end, as family of patient….wrestling with this question: “Doc, what would you do?”

http://tinyurl.com/pngbcr4

In 1947, two 16-year-old boys rode to Washington, D.C., on scooters and U.S. Sen. Robert A. Taft gave them an extraordinary gift

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My dad doesn’t remember who came up with the idea, but when he and his buddy, Ronnie Morse, were 16 years old, they decided to ride their scooters to Washington, D.C.

It was the summer of 1947, two years after World War II ended, and almost anything seemed possible to boys who grew up with ration books, Victory Gardens and news reels about battles they may some day have to fight for their country.

Dad and Ronnie spent about about a week mapping out their journey and then headed south out of Medina, Ohio — population of about 4,500 at the time — toward the Pennsylvania Turnpike for the 370-mile journey to the nation’s capital.

Dad was riding a used orange Salsbury scooter he bought from a relative with money he saved from his paper route. And Ronnie had a red Cushman. Neither wore a helmet. Neither considered it.

Everything was going fine until they reached the turnpike, where a toll booth operator turned them away, saying scooters were not permitted on the roadway.

They scrambled and found an alternative — U.S. Route 30, which roughly parallels much of the turnpike — and kept moving until they hit the mountains.

Ronnie’s Cushman wasn’t powerful enough. On the first few climbs, he blew his clutch. The boys could fix it themselves, but it took too much time.

So they improvised again.

They bought a clothes line. Every time there was a major climb approaching, they’d stop and tie Ronnie’s Cushman to dad’s Salsbury so dad could tow Ronnie and his scooter up the incline.

It took a couple of days — they stopped at tourist houses (what we might call bare-bones bed and breakfasts today) — but they finally reached the power base of the world.

Without CNN, the Internet or even a daily hometown newspaper, the boys didn’t recognize many of the Washington, D.C. touchstones we now take for granted.

When they pulled up in front of the U.S. Capital, dad at first wondered if it was the White House.

As the boys sat their talking about their next move, a man in a suit approached and handed them his card: U.S. Senator Robert A. Taft.

taft

Taft stopped, he said, because he saw the Ohio license plates on their scooters. Neither boy recognized the Ohio Republican — who historians would later call one of the most powerful senators of the 20th century.

But Taft gave the boys an extraordinary gift, one that anyone visiting or living in D.C. would treasure but couldn’t have today — the use of a Senate parking space.

Taft said he never used his space and thought it might come in handy for the boys’ scooters.

It did. Dad and Ronnie only planned for a day in D.C. and the space gave them easy access to watch a session of Congress.

Dad doesn’t remember now what lawmakers were talking about that day, but he vividly remembers looking down and seeing this: A congressman reading a comic book hidden behind what appeared to be some sort of law book.

As darkness fell, the boys motored out of the city, with the clothes line, and began the long journey home.

Dad told me bits of this story before, but I heard the whole thing yesterday at the hospital.

When I asked him why his parents let him go, he said Ronnie asked the same thing — including his own parents in the question — a couple of months ago.

Dad said he figures it’s because he and Ronnie made it safely back and forth to Knoxville, Tenn., the year before on their scooters when they were only 15 years old.

He hasn’t told me the Knoxville story yet.

I told my dad today he has cancer. Why me? Because the doc who found it apparently didn’t think my father was worth his time

Esophagus

Dad has a tumor on his esophagus that is almost certainly cancer.

Esophageal cancer killed my dad’s father at age 91. It killed my mom’s mother at age 83, which is how old my dad is now.

This cancer, my family knows, is an ugly way to die.

Yet the doctor who discovered the tumor didn’t talk to my dad about it, didn’t look him in the eye and answer his questions.

The doctor instead foisted that burden on me — by phone.

Before I started writing this blog about my outrage, I spoke with four R.N.s — three who work in different departments at the hospital where my dad is, plus an oncology nurse at another facility. I told each how my dad’s diagnosis unfolded today because I wanted to make sure my anger is justified, not just fueled by my fear and grief over the cancer.

Each assured me that my ire was righteous. Three called the doctor’s behavior unprofessional. I call it cold.

Judge for yourself. Here’s what happened:

I wheeled mom into dad’s hospital room just after 2 p.m. He had just returned from having an endoscopy, a procedure in which a doctor inserts a flexible tube with a light and camera attached to scope the digestive track.

This test, we hoped, would reveal the source of dad’s acute blood loss  — which had become so severe the test was pushed back a couple of hours so dad could receive a blood transfusion.

I told the nurse helping my dad I wanted to be there when the doctor came to the room with the results and asked her to get an approximate time because I had to run my mother one-floor up for a scheduled iron infusion at 2:45 p.m. and didn’t want to miss him.

The nurse, who was very helpful, hadn’t been able to reach the doctor by 2:40 p.m., so I scurried upstairs with mom and then rushed back downstairs to wait with dad.

When the nurse saw me, she assured me she was still trying track down the doctor. A few minutes later, the phone in dad’s room rang and the nurse bolted in saying it was the doctor on the line.

The doctor — whom I have never met, but who is part of the gastro practice that both my mother and father use — never asked to speak with my father, nor did he offer an explanation about why he didn’t stop to see us before leaving the hospital.

He instead told me he discovered a tumor that was almost certainly cancerous on my dad’s esophagus. The doctor didn’t have the results of the biopsies yet, but he already called in two oncologists to consult.

I was stunned. I figured a phone call was good news, or at least neutral news — maybe he wanted to run more tests. But not this. A doctor doesn’t drop the cancer bomb by phone.

So I slipped into my most comfortable suit of emotional armor — my newspaper reporter facade — and grabbed a nub of broken pencil from my dad’s bed tray and started asking questions.

The doctor spelled the names of the oncologists for me and told me what would likely happen next — a CAT scan, the assigning a “stage” to the cancer and a treatment plan.

All of this, of course, is happening at the bedside of my dad, who is listening to my side of the conversation and trying to figure out what was going on.

Was this the source of dad’s blood loss, I asked, trying not to say the word cancer until I could talk to dad.

The tumor he found was covered in dried blood, but wasn’t actively bleeding, the doctor said.

Tumors, he told me, bleed intermittently.

The phone call lasted less than three minutes.

When I hung up, I told dad he had cancer.

Dad asked a couple of questions that I had no answers for.

A few minutes later, I picked up mom from her iron infusion on the floor above and told her dad has cancer.

She, too, had questions I had no answers for.

Is this the way medicine is supposed to work?

P.S. I haven’t yet decided whether to post the doctor’s name. I most certainly will write letters to his medical partners and the president of the hospital where this happened. We are not using the oncologists this doctor brought in for consultation.