Morphine: No Cure for Pain

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Just before 6 a.m., my dad’s voice floats through my dreams, a distant call echoing through a warm, nighttime fog.

“Amanda, I can’t breathe.”

My eyes open and before I hear the second syllable of my name a second time, my feet are on the carpet, running, running, down, down, down toward my father who is standing with his walker at the bottom of the stairs, his oxygen cord a tangle at his feet.

“I’m sorry,” he says,  but I can’t breathe.”

He isn’t gasping. He isn’t blue. But he is upset, confused.

I shepherd him through the darkness toward his saggy, lopsided recliner, a green leather monster that moved into our house a few years ago when mom and dad did.

In the kitchen, a few feet away, I reach for morphine, a tiny square bottle packaged like it’s a precious cologne, Chanel No. 5  for the dying. A high school health teacher warned us so many times about the dangers of morphine that even now, 30 years later, it’s counter-intuitive to give this drug to someone I love.

The morphine is the same pine green of NyQuil and no thicker than water. I insert a syringe thinner than a pencil into the bottle and fill it about 1/4 full, only a few drops, less than an 1/8 of a teaspoon, the prescribed dose dad can take once each hour.

When I turn on the light by dad’s recliner, I’m startled. My father is there, but he seems to have turned into my grandfather, his own father who died in 1990.

Until this moment, dad never resembled my grandfather, a self-righteous, blue-eyed Irishman, red hair gone to frost.

We, my father and I, have always been Schneebergers, taller versions of my German grandmother, with hazel eyes, a dimple in our right cheeks, almost always harder on ourselves than we are on others.

“Dad, I’ve got something that is going to help,” I say, holding the syringe where he can see it.

Until now, I’ve only given dad morphine twice a day — once at breakfast and once before bed. Hospice prescribed the opiate after his esophageal cancer and chemotherapy combined to cause weeks of diarrhea, leaving him so weak he couldn’t stand.

Morphine causes constipation, so the diarrhea ended. And I know it can also slow the respiratory system so dad, whose cancer has spread to his lungs, won’t feel like he’s gasping for air.

Dad tilts back his head and opens his mouth, his gums pink and wet, naked without his dentures. And like a mama bird feeding a hatchling, I insert the syringe and plunge the morphine down his throat.

This change, this sudden morphing from Schneeberger to Garrett unnerves me. So does this increasingly unfamiliar and traumatic family drama.

A room away, my mother sleeps, oblivious to her husband’s struggles. More and more she’s living in her own bizarre  dementialand.

Most days she insists she can’t go to the bathroom without eating cheesecake and smoking cigarettes. Other days she says she can’t stop going to the bathroom unless she eats cheesecake and smokes cigarettes.

The television remote control, for her, might as well be a martian spaceship.

She’s can’t figure it out.

Fifteen minutes after I give dad the morphine, he’s still having a tough time breathing.

I worry this is the first of many such episodes to come. No one from Hospice has yet told me what to do.

Maybe dad is having a panic attack, I wonder.

The day before, when I was taking a shower, my dad sobbed to the aide who visited for an hour to give him a bath. Stacie, who’s helped mom bathe for nearly four years and who took care of my aunt with Alzheimer’s before that, is part of our family now and dad trusts her.

He’s been unwaveringly brave in front of me, but he confided his deepest fear to Stacie — suffocation — and she wisely passed that on to me.

I go back to the kitchen and reach for dad’s other new prescription — a generic form of the anti-anxiety drug Xanax.

For a moment, I think about popping one of the tiny yellow pills myself, but I have never taken anything like that and decide it’s too big of a risk. If I have some sort of weird reaction, my husband is saddled with this mess.

So I half-fill a glass — well, really a plastic tumbler with textured sides that old, feeble hands can easily grip — with water and carry the Xanax in to dad. He swallows it, thanks me and closes his eyes.

Eleven days before, dad entered Hospice, both the program and the facility. It happened on a Saturday after he wouldn’t get out of bed.

A nurse practitioner who had visited the day before as part of dad’s palliative care had noticed the decline in his health. She said it was best for him to decide whether he wanted to give up on chemo and opt for Hospice. But she changed her mind on that Saturday when I called and told her about the situation.

A Hospice intake nurse came to our house and, by then, dad was sitting in his recliner. I was ready, as his power of attorney, to  sign the Hospice forms. But dad rallied enough to do make this decision himself and, for this, I will be forever grateful.

Although Hospice would almost certainly argue otherwise, signing up for comfort care is surrendering to your disease. I didn’t want to wave the white flag for dad. It was good for him and for me that he made that choice.

My husband drove dad a mile away to the Hospice care center, a nearly new facility with several indoor fireplaces and rooms that overlook an equally new park where people jog with dogs and push strollers around a blacktop path.

I followed in a separate car with my mother, her wheelchair, three one-gallon Ziplock bags of dad’s medication, dad’s living will, my power of attorney and a pack of dad’s Pall Mall cigarettes, a red Bic lighter stuffed inside.

Three days later, after Hospice got his diarrhea under control, dad came back to our house to celebrate his 58th wedding anniversary with my mom and told me he never wanted to go back to Hospice.

I worry now, watching him in his recliner, that he will end up back in Hospice, that I might not be able to handle this.

It’s been almost an hour since he woke me and I give him another dose of morphine.

This squirt of green, in combination with the Xanax, works.

He nods off.

Later, when I call Hospice, a nurse named Ginger reassures me I did the right thing with the morphine and the Xanax.

She gets permission from a doctor to double dad’s morphine and his Trazadone, a pill he takes before bed that helps the mind relax.

Then she ask me if I know what do when someone dies.

My first thought is “run,” but I don’t say it. I don’t say anything.

Ginger fills the silence with a “What To Do When Someone Dies — For Dummies” talk.

The person will stop breathing. Their eyes may be closed or may still be open.

Don’t panic. Don’t call 9-1-1. Go slow. Take your time. Call Hospice immediately or whenever you’re ready.

Once Hospice arrives, staff will verify the person’s dead. And then, whenever you’re ready — remember, there’s no rush — Hospice will call the funeral home.

As she’s explaining this, my mother hollers from somewhere in the house demanding a cigarette. I seek refuge in the pantry overlooking our wooded backyard and notice for the first time that spring green has started coloring the tips of the trees.

Once Hospice calls the funeral home, Ginger tells me, it usually takes about an hour for the staff to arrive.

The only decision to make then, she says, is whether you want the dead person’s face covered or uncovered as he’s taken from the home.

Who cares, covered or uncovered, I think to myself. Ginger’s already told me my dad’s going to by lying there for hours in my house dead, his eyes possibly open.

By the time I hang up the phone, my husband has taken my mother out for a cigarette and helped my father back to bed.

I reach for the tiny bottle of morphine again to soothe my father’s breathing and wish that Hospice offered something just as powerful to cure my pain.

This happened two days ago. My father is sleeping more, eating less and, for the first time since he was in the Army during the Korean War, passing up cigarettes. Although I  know his final chapter is closing, no one knows when that will be. For now, I stand guard with the morphine and Xanax, trying to make him comfortable. Morphine was one of my favorite bands of the 1990s and a half-dozen of their songs still occupy my favorites list, including “Cure for Pain.”morphine

#TheDress: The battle over reality — white/gold vs. blue/black — is a free ticket to tour life in dementia-land

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Everywhere I went today — the waiting room for my dad’s radiation appointment, the line at the pharmacy, the coffee stand at the grocery — everyone was arguing about “the dress.”

I don’t know what causes people to see the colors differently. I’ve read a couple of different theories. And dueling, over-educated baristas each presented me compelling, but opposing, scientific arguments while making my soy latte.

But I do know is this: The battle over whether the dress is white with gold stripes or blue with black is a free ticket to tour life in dementia-land — where perception and reality are frequently at odds.

My husband is a jukebox of bad jokes and cheesy puns and one of his standard oldies goes something like this: 

Q: Why is it so easy to have an Easter egg hunt for Alzheimer’s patients?

A: Because they can hide their own eggs. 

My mom — who has Alzheimer’s and vascular dementia — has always been my husband’s biggest fan and still prods him once in a while to tell the one about the Easter eggs.

But memory — misplacing things or forgetting someone’s name, even your own — is only part of the horror of dementia.

Just as bad, at least for my mom, is how dementia changes the way people view the world around them.

My mom studied art for a couple of years after high school and she has always considered her easel and paints more essential household furnishings than either a bed or a table and chairs.

She never tried earning steady money from her artwork until she thought I needed braces to close a gap between my front teeth. 

Dental wasn’t covered by my dad’s health insurance and my parents couldn’t afford the braces, so mom placed an ad in “Yankee” magazine offering to paint people’s homes on one of the hundreds of pieces of slate roofing someone had abandoned in our barn years before.

She did well. Word spread and it led to real estate agents and landscaping companies contracting with mom to paint watercolors and acrylics for their clients.  

Decades later, when mom and dad moved in with us, there was no room for her easel, but I’ve kept mom well stocked in art supplies. She has spent many afternoons on the couch sketching something from memory or painting a flower I snapped fresh from the garden.

But as her dementia advanced, her artwork has changed. 

It’s unrecognizable, gloomy now.

Part of it, mom insists, is because she can’t control her hands. She doesn’t have a good grip. And that appears to be true. The faces she draws are now generic, the veins in the leaves of her trees are missing or haphazard squiggles. 

Everything exists in a washed-out fog.

But worse, I think, are her color choices.

In mom’s dementia-land, the sky in no longer blue. Or, if it is, mom can’t recognize the blue pastel crayon or the blue paint to reflect that in her art. 

Her work is now dominated by darker shades of orange, purple and green — no matter the subject matter. 

I never mention this to her. Just the opposite, I try to oooh and ahhh over every piece because she needs to paint as much as I need to write this blog — these life-long passions of ours are keeping us each grounded during this time of upheaval. 

But mom is embarrassed. She gives up painting or drawing for weeks at time. She recognizes her sketches and paintings don’t represent her and she’s not even sure why. 

For a couple of years, I have avoided attaching the word “dementia” to mom in front of her or dad, as if that truth would somehow accelerate the disease. My head knows this is ridiculous, but my heart tells me otherwise.

Now, though, mom has started talking to me about it, trying to explain this mysterious phenomenon that has changed her perception of reality.

“It’s like floating above your body,” she told me yesterday, raising her arm and swirling it above her head. 

“I know I’m here with you and sitting on the couch, but I’m thinking about the past, living in the past,” she said. “What’s going on around me feels like it isn’t happening, like I’m watching a TV show.”

This, she said, has been particularly difficult since dad was diagnosed with cancer. She knows what is happening — dad’s prognosis is grim — but it doesn’t seem real to her.

She confided this after overhearing a phone conversation between me and a childhood friend, Brenda, who is dad’s oncology nurse. We were discussing some of dad’s symptoms and what would happen now that cancer has spread into his lungs. 

When mom first heard us talking, she thought Brenda and I were upstairs, young girls again playing a game in my childhood bedroom, something she had heard hundreds of times before.

Eventually though, with all the talk of cancer, mom said she figured out she was lost in the past and came crashing back to the reality of here and now.

Time traveling like this won’t always be possible for mom. And even now, it’s painful. 

I think of all of this during the great dress debate of 2015 and how passionately people are defending reality as they see it, even in something so meaningless — an ugly white dress with gold stripes vs. a just-as-ugly blue dress with black stripes.

Imagine being trapped in dementia-land, not even knowing for certain whether the sky is blue.

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.

Learning to speak dementia: Stop the pop quizzes, just let people talk — about the black guy nobody likes or anything else

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I found out a couple of months ago that my parents’ annual physical exam now includes a 20-question pop quiz after a weigh-in and blood pressure check.

My 104-pound mom with high blood pressure tackled it first.

Doctor: What year were you born?

Mom: 1932

Doctor: Where are we?

Mom: Medina, I’ve lived here most of my life

Doctor: Who is the President of the United States?

Mom paused. She glared at dad, glanced at me and then rolled her eyes at the doctor and blurted: “I voted for him — you know, that black guy nobody likes.”

Her embarrassment exploded silently, flooding the tiny examination room with a muddle of fear and shame.

The doctor, who has taken care of my parents for decades, tried to paper over the moment with reassurances. But there was no consoling mom, who, against my father’s wishes, had hammered a gaggle of Barack Obama campaign signs into their front yard in 2008.

This doctor’s visit happened in December and I hadn’t thought about it much again until an Iowa-based gerontologist I follow — Elaine Eshbaugh — wrote about something similar in her witty, insightful, in-the-trenches blog “Welcome to Dementialand.”

In it, Eshbaugh described stopping to talk to a nursing home patient after the woman hollered to Eshbaugh that she had become a grandma.

When Eshbaugh asked the woman what her granddaughter’s name was, the woman — like my mother searching for an answer her brain couldn’t come up with — paused and flashed from happy to sad. She couldn’t remember.

Pop quizzes, it turns out, don’t only happen in doctors’ offices.

They happen daily and inadvertently when many of us talk to people with dementia.

When we ask grandpa if he recognizes us, or grandma what she had for breakfast, we’re quizzing them. And if they can’t answer — when they get that sad and shameful look — they know they’ve failed.

I’ve been too thick to realize how often I do this with my own family.

Mom, I ask, where did you put the newspaper? Dad, I prod, don’t you remember you had a stent when you were in the hospital two years ago?

Wouldn’t it be better for everyone if I found the newspaper without asking? Or recognize and embrace that I’m now, and forever more, dad’s medical memory?

Eshbaugh concedes, she, too, has unnecessarily caused angst in dementia patients — including the woman in the nursing home who became a grandmother.

“Instead of asking her to recall specific info about her granddaughter, I should have said, ‘Tell me more about your granddaughter’,” Eshbaugh said.

“She might have told me that she was 8 pounds when she was born, that she had blond hair, that she cries a lot,” Eshbaugh said.But she would be focusing on what she remembered rather than what she didn’t remember.”

That’s a good lesson for most of us.

My parents’ doctor, of course, doesn’t have that option. She is measuring memory function and a quiz is necessary.

After mom fumbled the president question in the office that day, the doc continued down a list of other queries, swapping out a World War I question for one she thought both mom and dad should know since they lived through it.

Doctor: When was D-Day?

Mom stumbled into an answer involving the 1800s and dad, trying to save her, reminded her that was the Civil War.

“Abraham Lincoln was a wonderful president,” mom said, telling the doctor she was confused now about dates because she doesn’t work any more and has no reason to keep track of time.

A few minutes later, as the doctor was typing into her laptop and the three of us were sitting quietly nearby, mom lit up.

She had found the needle buried in 82 years of memory haystack.

“Obama,” she said triumphantly, pounding her bony, little fist on the arm of her wheelchair. “His name is Obama.”

For anyone interested, here’s a link to Elaine Eshbaugh’s refreshing Welcome to Dementialand blog: https://welcometodementialand.wordpress.com

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

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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.

Queen for a day: Some don’t need a crown

goodwillxxWhen I was in grade school, my Aunt Betty would whisk me away every year on my birthday, taking me wherever I wanted to go, buying me whatever I wanted to have.

It sounds extravagant, but it wasn’t.

The world I knew then was tiny and so were my desires.

The birthday journey usually began with me steering my aunt’s brown hulk of an Oldsmobile — my Uncle Earl’s Shriners figurine securely attached to the dashboard, its fez wobbling back and forth — out of our long driveway while Aunt Betty worked the gas and brakes.

From there, we’d head to the mall in her blue-collar town and eat ice cream for lunch and hunt treasures my parents couldn’t or wouldn’t buy me: White go-go boots in second grade; a Barbie-like doll that grew an inch and sprung breasts when you turned her left arm backward; bellbottom blue jeans with wild tapestry fabric in the flare that only showed when I walked; Pong.

Afterward, my parents would pick me up, stuffed and exhausted, from Aunt Betty and Uncle Earl’s house, a single-wide, aqua-color trailer with a white plastic poodle chained to one side, a black plastic poodle chained to the other.

I have never felt more like a queen — or more loved — than on those days.

Thirty-five years later, long after my aunt and uncle had died, I tried to recreate that kind of experience for my mom, taking her and her wheelchair on mini-adventures, things she once loved to do.

We rubbed noses with goats and dug our fingers so deeply into sheep’s wool that our hands were covered with lanolin. We revisited her haunts at Kent State University and stopped for mugs of beer. And during the coldest parts of winter, we reveled in the humid warmth of greenhouses, trying to absorb new life from the plants growing all around us.

All of it was fun. But nothing made mom’s heart soar until last Christmas.

It started with failed shopping trips. Mom wanted what she called an “old lady sweater,” the kind her own mother wore.

I knew what she meant: A thick, acrylic cardigan — probably pink, baby blue or ivory — with buttons the size of silver dollars that were covered by the same knit the sweater was made out of. Every farmer’s wife at our Methodist church had one draped around her shoulders most Sundays when I was growing up.

But I had no clue where to buy one in the 21st century.

We tried Macy’s and Dillard’s and JCPenney. At Kohl’s, I showed her now fewer than 30 sweaters. All rejected.

Tired but determined, she told me to take her to Goodwill.

Mom has always been a scavenger.

Decades before it had a name, she pioneered shabby chic. I remember her hauling home somebody’s used dining room table and beating it with chains before white-washing the scarred-up surface to give the table a worn look.

And when I cleaned out her closet a few years ago, I discovered a vast collection of blazers — more than 70 —  almost all thrift store finds.

From the moment I wheeled her through the doors of Goodwill, it was clear: Mom was ascended her lost throne.

There were no prices to consider, no technology-inspired designs, nothing that felt unfamiliar.

When I parked her and her chair between racks of sweaters, she methodically began pawing through each hanger,

I spied the prize before she reached it — a pink cotton-candy knit — but I didn’t say anything.

When mom reached the sweater, she rubbed the hem between her fingers and smiled.

This, she triumphantly declared, was it.

It was like witnessing Cinderella’s prince charming finding the match to the glass slipper — magic.

When we got home, I threw the sweater into the wash and she has worn it every day since. I’ve scrubbed out soup and coffee and gravy stains and that ancient $3 sweater still looks like new.

Last week was mom’s 83rd birthday and I offered to whisk her away, taking her wherever she wanted to go, buying her whatever she wanted to have.

Her world is tiny now, and so are her desires.

On Sunday, we returned to Goodwill where mom — poring through the stacks of dog-eared books and discarded handbags — reigned like a queen and, I hope, felt loved.

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.

Outrage of day: No wheelchair for you!

nohandicapaccess

When I ran into hospital lobby to grab a wheelchair for my mom today, there weren’t any there.

Two silver-haired women were at the lobby desk (unsure if employees or volunteers), one talking on a cell phone. I asked the other where I could find a wheelchair.

She said if I didn’t see any, they didn’t have any.

“Should I carry my mom to the third-floor appointment,” I ask, exasperated (my mom waiting alone in the car).

“No, we don’t allow that,” the woman flatly replied.

She was serious.

My husband was off today, so I called and asked him to bring up our wheelchair from home (about a 10-minute drive).

Just as he pulled up with the wheelchair, a patient exited the hospital and got into a car, freeing up a hospital wheelchair for our use.

I was too tired from this week’s chaos to complain. But my mother — who once sat on the board of the local Red Cross (that organization’s volunteers once staffed the hospital desk, but I’m not sure they still do) — gave the women a piece of her mind, from one end of the lobby to the other.

Sadly — and there is a repeating pattern here — I think the women behind the desk disregarded my mom as nothing but a crazy old lady instead of someone with a legitimate complaint.

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.

Sometimes an old lady in a faux fur and hot pink sneakers has dementia, sometimes she’s just an old lady who likes faux fur and hot pink

fauxfur

When a hospital aide yesterday asked my mom where she was going, my mom couldn’t find the word “Maternity” — a perfect one-line response for an 80-something woman in a wheelchair.

So she said, “I’m having a really old baby.”

I laughed because I knew what she meant. But the aide frowned and gave me a knowing look, as if to say “I’m so sorry your mom’s lost her mind.”

Both responses were right: Mom, who always had a wicked sense of humor, can still be very funny, especially when she’s trying her best in public. But it’s also true she’s losing her mind to a combination of vascular dementia and Alzheimer’s.

It’s often difficult for outsiders to tell the difference and they look to me for clarification — as if I can speak dementia.

When I was at college, one of my favorite classes was The Evolution of the English Language, which traced the roots of words and revealed the clear paths of their changing meanings.

It doesn’t work like that with dementia. Word meanings zigzag, sometimes moment by moment.

That doesn’t mean someone with dementia isn’t trying to convey a coherent thought — or even a joke.

Unraveling the meaning —  or even figuring out whether a statement is dementia-related or merely human blunder — isn’t always easy.

Yesterday, when my mom made the maternity wisecrack, she was wearing a faux fur coat, navy-blue ankle pants and hot pink sneakers with no socks (throughout her life, she has refused to wear socks, even in the snow).

She looked crazy.

But here’s the thing: My mom would have worn that same outfit before she had dementia.

Once she turned 60, she said she was going to wear whatever she wanted. And she has.

Sometimes an old lady in a faux fur and hot pink sneakers has dementia.

But sometimes she’s just and old lady who likes faux fur and hot pink.