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.

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

obama

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.

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.

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.

Happy Birthday Phyllis Keefer, wherever you are

groundhog

Punxsutawney Phil and his varmint shadow posed in the sunshine this morning for his once-a-year photo op.

In Ohio, his buck-toothed rival — Buckeye Chuck — emerged under clouds, bringing hope for an early end to winter even as thousands of school kids to the north are home for a snow day.

Yes, the nation is again transfixed by Groundhog Day.

But in my house, it is — and probably always will be — Phyllis Keefer’s birthday.

I never met Phyllis Keefer. I don’t know where she lives. Heck, I don’t even know if she’s still alive.

But every Feb. 2 since I was a girl, my mother has noted with some excitement that it’s Phyllis Keefer’s birthday.

And this repetition has earned Phyllis Keefer a solid place in our holiday mythology, not unlike the Easter Bunny or Santa Claus. Even my husband — in true testament to his allegiance or wavering sanity — now acknowledges Phyllis Keefer’s birthday.

Who is Phyllis Keefer? She grew up with my mom in small-town Ohio and the two celebrated their birthdays together (Mom’s birthday is a couple of days later).

Mom lost track of Phyllis Keefer after high school graduation in 1950. But she’s never forgotten her birthday even as other memories have slipped away.

So as the woodchucks chuck wood and the world watches on, I raise a cup of coffee to you this morning, Phyllis Keefer.

Happy Birthday, Phyllis Keefer wherever you are.

If, on the off chance anyone knows who Phyllis Keefer is or where I might find her, please leave a message. I’d love to get the skinny on her. She would be about 84-years-old now.

Caregiving doesn’t end with humans: My parents’ dog has dementia, too

doggy dementiaNo one knows how old my parents’ dog is.

They adopted her about eight years ago from the county shelter after another family — with an aggressive larger dog — surrendered her. At the time, my parents’ veterinarian guessed she was about 7 years old.

Missy, a long-hair Corgi mix, was thin and nervous, especially around men. But my parents — particularly my mother, who rarely went anywhere without a dog at her side — quickly changed that. Despite daily 2-mile walks around a nearby pond, Missy plumped up — ballooned, really, doubling in weight. And whatever fears she had seemed to fade within a year.

She has been, by any measure, the best dog my parents have ever had (and I can recall five) because someone trained her  before my mother could turn her into the yapping, nippy monster dogs that haunted my youth.

So when my parents moved in three years ago, there was no dispute: Missy could come, too. Missy adapted faster than any of us. She ignored our two cats and goofy mutt and seemed happy curled at the feet of my father, who had become her primary caretaker.

But there’s been a change over the past year.

At first we thought she had cataracts and couldn’t see. She’d walk into things or fall off the front stoop.

But then she started pacing nervously at night and panting, almost frantic at times, unable to get comfortable.

I recognized that behavior almost immediately:  Missy was sundowning, just like many people with Alzheimer’s.

Indeed, Missy has doggy dementia, or what vets call cognitive dysfunction syndrome.

Some studies show that half of all dogs over age 10 will have some symptoms. Disorientation — getting lost in familiar surroundings like the house or yard — is most common.

But some — like Missy — also pace in circles, start messing in the house and fail to respond to their own names.

Like Alzheimer’s, cognitive dysfunction syndrome in dogs is progressive and there is no cure.

And that leaves me, as caregiver, in a pickle.

As unstable as Missy is, her presence brings stability to both my mother and father.

Most of her behavior (so far) is more annoying than troublesome. I’m nervous just being around her. It’s like seeing someone helpless and panicking amid traffic on a busy street and being unable to reach them, to pull them to safety.

Most dog owners end up euthanizing their pets with cognitive dysfunction.

And that will likely happen in our case, too, but I’m dreading it — more for my parents than for Missy.

I don’t know how to help them grieve, but I’m hoping our other pets will see them through.

Satchel, our 75-pound Shar Pei-Lab, greets them every morning and mom and dad both fuss over him, rubbing his wrinkly face and talking to him as if he were a child.

One of our cats, Jack, sits on the table while my dad eats cereal and they both watch the birds that come to feast at a feeder attached to the window. And at night, our other cat, Claire, sits upright in an empty chair at the dining room table when I serve supper, as if she’s always expecting a plate that never comes.

Our pets give my parents joy.

But they are not Missy. She is one of the few remaining chapters of their independent lives yet to close.

And when she is gone, I know my parents will want to go, too.

Making room for Mom-in-Law, then Mom and Dad: It’s all about the bathroom. Everything else can be rearranged.

grabbar

I still miss our first house.

It was a Craftsman-style bungalow on a working-class street that dead-ended into Lake Erie. We could barely glimpse the water from our screened-in porch, but the sound of the waves — a steady roar in winter — rocked us to sleep at night.

We decided to move when my mother-in-law needed help after her husband died. Heart surgery and worsening health issues left her breathless and dependent on a walker.

She couldn’t move into our house because, like so many older homes, the bathrooms were on the second floor and in the basement. Putting in a full bath on the first floor didn’t make financial or practical sense.

So we started looking at houses. Finding one that we could afford and that met our needs wasn’t easy. We ended up buying a center-hall colonial with a full bath at the end of a hallway off the kitchen. The 16 x 20-foot formal living room, which could be closed off with two sets of french doors, would be my mother-in-law’s.

She spent weeks using graph paper and careful measurements to figure out what she could fit into the space. We painted the walls an icy blue color. And, in the end, it was a cozy mini-apartment: A love seat, rocking chair, TV and computer at one end of the room and a single bed, two dressers and an armoire at the other.

She needed an extra long oxygen cord to reach the bathroom — which was about 30 feet away — but the set up worked for her. There was plenty of room to maneuver between the shower, vanity and toilet. And, the glass shower stall was big enough for a small plastic bench so she could sit while washing.

Two weeks after she moved in, while my husband and I were at work, my mother-in-law called my mom for a ride to the hospital. Her heart was in arrhythmia. My mother-in-law never returned to our house. After a month in the hospital, she took herself off life support.

Slowly, her mini-apartment reverted back into a formal living room. Nephews picked up furniture they could use. We re-painted the walls and moved the dressers into the basement for a yard sale we’ve yet to have.

And then, a couple of years later, my parents needed help.

Their needs were a little different and since there were two of them, they would need more space. But this time I knew we had a house we could make work.

Unlike my mother-in-law, who depended on her walker for stamina, my mom used her walker for stability. And even with the walker, my mom was tripping and falling — a lot.

The bath at the end of the hall would work work for showers. But I knew she needed a toilet closer to her bed.

Working with our plumber (a family friend) and my cousin who is a builder, we squeezed a half-bath into the corner of the formal living room.

My cousin built two temporary walls (they stop short of the ceiling by about 4 inches) and formed a room about 4 x 8 feet. He installed a pocket door wide enough for a wheelchair — should we need it — and a vanity sink to one side of the door and a toilet with an elevated seat to the other. The walls are ringed with grab bars.

We also ripped up the carpet in the formal living room and new half-bath and installed plank vinyl flooring. The project, in total, cost about $7,500.

Now that space — which first served as my mother-in-law’s small apartment — is my parents’ bedroom/half-bath/kitchen area. There are two single beds, an armoire and dry sink on one side of the room and a kitchen table, full-sized refrigerator and microwave on the other.

Next, we re-purposed our dining room — which is on the other side of the entry hall — with a couch, TV, desk and my dad’s favorite recliner.

To make the full bath at the end of the hall safer, my husband removed the glass shower door. We were worried mom could trip — even with someone helping her — and cut herself on the glass. I hung a clear shower curtain in its place and put grab bars up for something to hold onto.

Finally, we sacrificed our family room — which is at the back of the house. It’s now a dining room. All the living space for my husband and myself is upstairs in an unused bedroom.

Is this a perfect set up? No. I wish my parents had a self-contained apartment and we had our house back.

But it works.

My husband and I often dream about our next house. I don’t know where it will be, if in Ohio at all.

About a decade ago, we started vacationing in Anna Maria, Fla, one of the few coastal towns free from high rises, large hotels or chain restaurants.

We usually rent a two-bedroom, two-bath cottage with a screened-in porch on a street that dead-ends into the Gulf of Mexico.

At night, the ocean waves rock us to sleep.

And we dream of having a tiny house all of our own.

Leftover Christmas ham bone & January cold=Mom and Dad’s favorite: Senate Bean Soup

It’s cheap, it’s easy to make, it’s full of fiber and it’s a WWII generation hit — Navy Bean soup. This recipe calls for ham hocks, but a ham bone works just as well. On my mom’s advice, I stir in a teaspoon of baking soda. I do not know if this works, but she claims it counteracts some of the beans’ gas-producing powers

I use this recipe from Saveur.com

INGREDIENTS

1 lb. dried navy beans, soaked overnight, drained
1 smoked ham hock
1 tbsp. unsalted butter
1 small yellow onion, finely chopped
Kosher salt and freshly ground black pepper, to taste

INSTRUCTIONS

1. Bring beans, ham hock, and 8 cups water to a boil in a 6-qt. Dutch oven over medium-high heat; reduce heat to medium-low, and cook until beans are tender, about 1 hour.

2. Meanwhile, heat butter in a 10″ skillet over medium heat. Add onion, and cook, stirring, until soft, about 5 minutes. Transfer to pot with beans, reduce heat to low to keep warm. Remove ham hock, let cool slightly, and then remove meat, discarding bone, skin, and excess fat; finely chop meat and add back to soup. Lightly mash some of the beans in the pot to create a thick, creamy texture; season with salt and pepper.

That’s it! Simple, simple, simple. And like chili, this soup improves with age.