Space Coast could see a doubleheader SpaceX Falcon 9 launch on Saturday evening.

The Long Goodbye, Part 1: After dementia sets in, mom and daughter make a few more memories

Britt Kennerly
Florida Today
Family photos, reflecting four generations of Helen’s family, are among the decorations in her nursing home room.

Editor's note: This is the first installment of a three-part series. Click here to read the entire series.

I wish you’d met my mother before dementia swooped into her head and started pecking away, like the buzzards that used to circle over our farm in Kentucky, honing in on vulnerable prey.

You’d have liked the woman I still call Mommy, I’m sure. Most everyone who ever met her did, and they still do. I’ve always been proud of that — that I have a mom my friends could talk to. One who worked hard, who was well-respected in her community and taught me more about being a strong woman than I realized, until it was almost too late to tell her.

But then the vulture nested in my mom’s brain, where it continues nibbling away, ripping off a memory or a chunk of her dignity one tear-filled tissue at a time.

We can’t be certain when the disease dug in, though she was treated for dementia symptoms for a couple of years before the vascular dementia diagnosis in May 2016. We know it runs in our family and are painfully familiar with its sad, vicious progression.

One in three seniors will die of Alzheimer’s or another dementia. And everyone who cares for them fights a battle that can, if they don’t seek support, wear them down or even kill them.

A quiet moment shared by Helen and her oldest child, Linda Moore.

There were warning signs for my mother, like those dark spots you see in the sky which turn out to be birds on the hunt.

Back in 2013, I wrote a series called “Aging Alone,” about seniors living on their own here in Brevard. On a visit to Kentucky, I gave my mom a preview of one of the stories. After she finished reading, she said, “This is so sad. And so beautiful.”

I asked her if she wanted me to write about her someday. She said yes, but only if it would help somebody.

Two months later, Mommy had a transient ischemic attack, commonly known as a TIA or a mini-stroke. I was in the FLORIDA TODAY newsroom when my sister called from Kentucky to say that our mother was at our childhood home, confused and locked out of the house. I was to call Mommy on her cell phone and keep her talking as my sister, who had already called for help and was driving home, contacted the rest of the family.

My mother, a 5-foot-1-inch-tall woman who could change the oil in her car, help pull a calf out of a struggling cow in labor and make the best blackberry jam cake known to man, sounded terrified.

I asked her to tell me her name: Helen Harney. Who was president. What year it was. Her name again. She knew all the answers, but had no concept of what was happening to her.

“What am I doing here?” she cried from the back porch of the home she and my dad helped build, where we watched the sun fall into the “holler” to the west come nightfall.

“What’s going on? What am I going to do?”

“We’re going to take care of you, Mommy,” I said again and again. “Just hang on.”

This is my mom’s story, the one I promised her I'd someday tell.

Oh, I hope it helps somebody.

 

My mother used to pack a “puke bucket,” a white plastic pail with a couple of wet washcloths inside, when my family took road trips.

We needed it because my dad hated I-75 between Lexington, Kentucky, and Cincinnati, Ohio. He complained there was too much traffic; and he wanted us to see “the good stuff” on the curvy and narrow side roads that bounced me and my siblings around in the back seat of our Ford station wagon. By the time I was 8, I’d vomited my way through Kentucky, Ohio, Virginia and beyond.

We’d pull over onto the gravel of those side roads after I barfed, to empty the bucket and for my mom to scrub my face. Her hands, even after cleaning me, always smelled like lotion.

My mom and I spent a lot of time in a car together the year before I left for college in August 1974.

She'd drop me off at school every morning on her way to work in a foundry around 7 a.m., so that I could be there early to anchor our school’s morning news show. Most days, we’d stop at the grocery store along the way to pick up freshly baked pastries, sugar falling onto our clothes as we agreed that the cinnamon ones shaped like figure 8’s were the best. In the afternoon, we’d often meet up to head to the Dairy Queen in her green Falcon. There, as friends sat in cars making out with their boyfriends across the parking lot, we’d eat strawberry sundaes or banana splits and ponder what my future would be like and whether I should be a teacher (her choice) or a newsperson (mine).

We had outings on our own after I married in 1983. I took my mother to her first real musical — “Seven Brides for Seven Brothers” — at a dinner theater in Indianapolis. That night, I got her to taste good merlot, which she, a non-drinker, pronounced “disgusting” and “highly overrated.”

Helen Barnes Harney, mother of FLORIDA TODAY journalist Britt Kennerly, was a varsity cheerleader and valedictorian of the Renaker High School Class of 1950 in Kentucky.

She went to a bar for the first time with me, too, to see my husband’s band play. She called the bar a “roadhouse.” I found that charming. She ordered catfish and unsweetened iced tea and said that for the first time, after watching Doug play, she knew why I fell in love with the drummer.

By the end of the evening, in a loud, smoke-filled room where drunk dancers ground against each other to Eric Clapton’s “Wonderful Tonight,” the other band wives were spilling their stories with my everybody’s-somebody’s-kid mother. One woman, Effie, who’d lost her mother at a young age, had her head on my mom’s shoulder by the end of the night. Mommy asked about Effie now and then for the next 15 years.

And my mother and I had family trips, too, outings fraught with all the usual tension those vacations can bring.

When Doug and I lived in Arizona, where he became a juvenile probation officer, Mommy, my sister Linda and Linda’s two sons drove cross-country to visit so we could all go to Mexico. One of my nephews farted all the way from Phoenix to beyond the border, while my mother, then 62 and dealing with an iffy bladder, needed to stop for potty breaks every few miles.

During one particularly memorable trip to my mom’s timeshare in the Keys in 2006, 12 years after my dad’s death, my older sister and I regressed to our teen years and had a shouting match. It started because my sister went on the trip knowing she was sick. By the time we motored from Orlando to Marathon, Linda and my mom were violently ill with a stomach bug, and within hours, my husband was sick, too.

I didn’t get so much as a belch. My sister hated that and let it be known I shouldn’t be going out on my own while everyone else was stuck hanging over a toilet. My mother, once she could sit up, lay on the patio of the condo and cried. Doug calmed her down as she tried to convince my sister that I was not a villain just because, for once in my life, I wasn’t vomiting after a road trip. Mommy has always been the buffer in our family.

By the end of the vacation, with everyone well enough to go to Key West and enjoy a few nice dinners, Mommy sounded like my grandma, who used to pronounce every Christmas tree “the best one we’ve ever had.” This was the best trip we’d ever had, she affirmed.

And I didn’t need a bucket, I answered, sending Mommy into gales of laughter and my sister shooting me that look that told me not to push my luck.

All that, though, was before my mom’s dementia, which had struck my maternal grandma before her death in 1983. My mom’s brother, Godfrey, got it, too, dying a little here and a little there over several years after his Alzheimer’s diagnosis.

When he finally left this world, on June 8, 2012, his children and daughter-in-law, my mom and my sister and I were all with him. A nurse told us that as Godfrey’s death drew closer, the blue color in his feet would start to spread. My mother peeked under the blanket at my uncle’s feet several times that afternoon.  Sure enough, not long after the blue started traveling up past his ankles and as the setting sun filtered through a dreamcatcher in the window, my sweet uncle died with his weeping sister at his side.

Now, as I realized my mother, too, would be making that godawful “long goodbye” people talk about when they’re discussing dementia and watching their loved one slip away a cell or two at a time, I wanted something that was all about us.

A trip, I thought, that I, selfishly, could look back on even when she couldn’t, and remember something no one else, not siblings or grandchildren or even my husband, could be part of.

So in early 2016 I called and asked my mother, who was then a few months away from her 84th birthday: Where in the world can I take you?

I envisioned us in New York at a Broadway show, or in Aruba or Jamaica, taking the sunset cruise I’d wanted us to have years ago in Key West.

She had a different idea.

“Washington, D.C.,” she said.

I was surprised and, because I hadn’t been there since covering President Clinton’s first inauguration for a Phoenix newspaper, happy. We’d been to Virginia when I was a child, and for some reason, I thought maybe she’d been to D.C., too. She hadn’t.

The Wednesday night before our July 14-17 trip, I flew to Kentucky to help prepare Mommy — and me — for the next day’s journey.

We searched for two hours to find the navy-blue pants Mommy was sure she had, the ones that would “just match” the new red, white and blue blouse and bright-red tennis shoes I’d brought her.

Ready to go: Helen Harney was decked out in red, white and blue on her first trip to the nation’s capital.

My sister, who has been my mom’s companion and now caregiver since she and Mommy got a house together a few years ago, coached me on the seven pills Mommy would have to take every day and the dementia-related patch she’d need changed daily on her back. She reminded me what our mother likes to eat and drink and warned me that “If she says she has to pee, she has to pee. Find a bathroom.”

Mommy and I discussed what the weather would be like in Washington in July — hotter than the hinges of hell, I told her. But “little old ladies get cold,” she told me, insisting on taking a sweater that was her mother’s, a cardigan that used to be as snow-colored as my Grandma Bess’s hair but is now a dingy white. My grandmother, who died in August 1983, wore it in the nursing home where her memories faded like an old sweater, too. Her name, Bessie Barnes, is written inside the garment, in indelible ink.

I wonder now if my mother knows why she still loves that sweater. Or who Bessie Barnes was.

Anyway, on the way to D.C., Mommy was blissful, snug in her sweater and impressed that I “knew to bring us food” to eat on the plane.

Joy spreads across her face as Helen gets settled in for the flight home to Kentucky after a July 2016 trip to Washington, D.C.

She looked out the window every few minutes and made a joke about the shape of the clouds. It made me wistful, knowing this was only about the fifth plane trip she’d taken in her life. My dad, a World War II vet, refused to fly again after he got back from North Africa. One of the few times my mother flew alone, from Florida back home to Kentucky on a two-stop flight, she had to spend the night in Chicago’s O’Hare International. She was scared for a few minutes, she said, but “those people were so good to me” and “made me a little bed on a cot.”

Several times before we landed at Ronald Reagan National Airport, Mommy held her hands out in front of her and admired the manicure my sister had talked her into before the trip. She’d chosen blood-red nail polish, something I never saw the woman wear in the all the years I’d known her.

“My father wouldn’t let me wear nail polish,” she said. “Maybe that’s why I never wore it that much.”

Everything fascinated her. The airport escalator. The baggage carousel. All the restaurants and coffee spots. The taxi we took to our hotel, which was across the street from the Washington Hilton where Ronald Reagan was shot in 1981. The throngs of people. The speed at which everything moved.

“I’ve never seen anything like this,” she said.

And, it's true, she hadn’t. My hometown, Cynthiana, Kentucky, has a population of about 6,300 people. It's about 50 miles south of Cincinnati and just north of Lexington, a slow-paced, rural area where, when I was growing up, most everyone I knew had a family member who farmed and/or worked in a factory for a living. No nightclubs or big-name department stores. One theater and a drive-in then; one theater, the same one, now. Sunday alcohol sales weren’t allowed until 2017.

My mother was, it turned out, more enamored of our hotel room than I could have dreamed.

Britt Kennerly and Helen Harney, aka “Mommy,” clown around for a selfie in April 2017.

I snapped pictures of her as she tried out the armchair. As she admired the view of the pool and the courtyard, she spoke in superlatives, as my sister and I had noticed she’d started doing all the time instead of just when something truly was special. It was the nicest hotel she’d ever stayed in, she said. The prettiest view. The softest bed.

All the things my sister had warned me about, the things she saw every day as a caregiver? Well, I got used to them fast. That Mommy would want to write down every pill she took in a blue University of Kentucky notebook. That yes, indeed, those bathroom calls could not be ignored. That she’d get up two or three hours too early for everything; poke me to ask if I was awake and then announce the time every few minutes.

She asked if we should write down where we were staying since “it’s such a big city.” I assured her that I had all the info in my head and my phone.

She reached for my hand again and again, or touched my leg, as we headed toward Cannon House Office Building to pick up the White House tour tickets that Rep. Bill Posey’s office had arranged for us.

“You know how to do so many things,” Mommy said as I swiped my credit card in the taxi. “When did you learn all this?”

“You pick it up,” I told her. “You were a good teacher.” She beamed with pride the rest of the afternoon. 

That night, we ordered in.

She’d never done that before, she told me, just called for food and had it sent to the room. This was living, she said. This is living.

Friday morning, Mommy was up by 5 a.m., announcing her pill-taking was about to commence.

By 10 a.m., she’d already had a nap and a shower and was ready for the monument tour. The hop-on, hop-off kind, where you can spend as much time as you’d like at each stop and then wait for another trolley to head to your next destination.

“Of course we have to do it,” she said when I told her we could do as little or as much as she wanted. “I might not ever get here again.”

With no one around to take a photo on a hot July day, Britt Kennerly and her mom opt for a selfie at the U.S. Capitol.

So, on a day where the temperature topped 90 early, we did the town. We stood across Pennsylvania Avenue from the White House and talked with other tourists. We stopped at Ford's Theatre. The Washington Monument. She stood beneath the words “Out of the mountain of despair, a stone of hope” at the Martin Luther King Jr. memorial, and told me she couldn’t believe anyone could hate someone just because of the color of their skin. And why do people keep killing each other over religion, too, she asked me?

She talked with strangers on the trolleys, telling one man about her daughter the reporter who’d arranged this “trip of a lifetime.” She pronounced the trip unforgettable.

At the U.S. Capitol, with no one around who could take a photo for the two of us, I shot selfie after selfie. In almost every frame, Mommy is looking at me and smiling, my face reflected in her sunglasses.

The photos almost stop my heart today. She looked so happy. So in-the-moment, until her out-of-the-blue question about her dead brother as we passed by the Newseum: “Do you remember exactly what it was that killed Godfrey?”

I told her it was Alzheimer’s disease. She said, “What exactly is that? I hope that never happens to me.”

On Saturday, the morning of our White House tour, she was up by 5 a.m. for our 7 a.m. taxi ride.

She bounded from bathroom to bedroom, trying to decide what to wear. Fussed with her hair and fretted that she couldn’t take a purse on the tour, because what would she do without a comb? She looked beautiful and excited, in the way a person does when they feel safe and content and anything is possible because they’re with someone they love and an adventure’s in the offing.

In line, she shook her head at some of the other tourists, whispering to me at one point when she saw a hirsute man in a tank top and a woman in a slit-down-and-up-to-there dress.

“I can’t believe someone is wearing that to the WHITE HOUSE. What if President Obama came out?”

An experience she said she’d always remember: On a July 2016 day in which temperatures would soar into the 90s, Helen Harney is seen just after coming out of the White House.

She was a little intimidated as we passed through Secret Service checkpoints, but schmoozed with everyone she met. A Secret Service agent, sensing her apprehension, assured her she would do just fine and teased her about “coming all the way up here from Kentucky.”

And once inside “The People’s House,” Mommy was in awe, heading straight to a bronze bust of President Abraham Lincoln and then to pictures of the Obama family. A kind U.S Capitol police officer, who told us she was from the South, asked if my mother needed help getting up the marble steps leading to the tour’s starting point. I gratefully accepted her offer to get us on an elevator.

She guided us behind the partition blocking the hall leading to the West Wing and through a huge kitchen to a service elevator. It spit us out at the top of the steps. People stared at us as we got off accompanied by a police officer, looking behind us to see if someone of importance was there, too. “Just us,” my mother said to one man with a camera.

On the first day of a shared journey to Washington, D.C., in 2016, journalist Britt Kennerly took her mother, Helen, sightseeing.

The Green, Red and Blue Rooms. The State Dining Room and the China Room. The East Room, where Mommy lingered to talk with the attending officer about this being the room where President Kennedy lay in state after he was assassinated.

I told her I still recall when she and her brother were supporting Kennedy’s candidacy and my uncle bounced me on his knee, singing, “We’re gonna vote for Ken-ne-dy. We’re gonna vote for Ken-ne-dy.” I was 3. She didn’t remember that, she said, but she remembered having a foam Kennedy hat. And sitting in front of the TV for days after the president was assassinated. And that Daddy, who bordered on agnosticism at times, wasn’t happy that a Catholic was going to be president, but that he sure didn’t like Richard Nixon.

At every stop, my mother would ask what I knew about this or that president, and told a couple of people, out of the blue, that her daughter had interviewed President Carter. She wanted her photo taken by the paintings of Presidents Kennedy and Clinton and, as a favor to my Republican brother, by the one of Ronald Reagan.

“We really should get that for Mike,” she said, a sly smile on her face. “Well, we should.”

An hour and 15 minutes later, the tour complete, we were standing outside the famed building’s fences, on Pennsylvania Avenue. Mommy got too hot for a couple of seconds and wobbled, and I ran to a woman who was selling water. The woman saw my mom leaning against a fence and told me not to worry about the $2, to “just take care of your mama.”

After a trip back to the hotel, a two-hour nap and lunch, I asked my mom if she felt well enough to go on another monument tour.

Helen Harney is pictured during the early stages of a White House tour on July 16, 2016.

She was most impressed, I think, by the Lincoln Memorial, where she read every word of the Gettysburg Address in a stage whisper and laughed out loud when I showed her how I could make the Washington Monument appear to be between my thumb and forefinger in a smartphone photo.

As we walked down the steps of the Lincoln Memorial toward the reflecting pool, Mommy counted each step — just loud enough that I could hear but not so audibly that anyone else would overhear and look.

“One, two, three, four,” Mommy said in a childlike, singsong whisper, in a way that tells you something is wrong, a little off, with the adult person uttering the words.

She also stooped to pick up every piece of trash she saw along the way.

“What’s that?” she asked, honing in on a gum wrapper.

“Just litter,” she answered herself as she threw it in the next trashcan.

Twenty-three, twenty-four, twenty-five.

There are 87 steps from the chamber where Lincoln sits to the reflecting pool.

That night, after I downed a couple of beers while Mommy had another two-hour nap, we had dinner in the Dupont Circle neighborhood with my friends Bil Browning and Jerame Davis.

I explained to her that these were friends I’d met in Columbus, Indiana, when I was a journalist there. That Bil is a well-known blogger and that his husband, Jerame, is the executive director of Pride at Work, a nonprofit organization that represents LGBTQ union members and their allies.

She didn’t say 10 words through dinner. I could sense that she was a little overwhelmed, on information overload, and that despite her insistence that she wasn’t tired, she was slowing down.

On the way back to our hotel, out of the clear blue, Mommy announced that she had a wonderful time, and that my friends were handsome and smart, and that she was proud of me.

Helen Harney holds her daughter’s arm and smiles as she walks through Ronald Reagan National Airport in July 2016.

“I really didn’t have much to say,” she said. “I just wanted to watch the three of you.”

That night, we stayed up late, even though we needed to be at the airport by 7 a.m. the next day. We turned the TV down and talked for an hour; made a list of what we’d seen, down to the protesters on Pennsylvania Avenue holding “Free Tibet” and “War Is Not The Answer” signs. She fell asleep in the middle of my explaining about labeling GMO’s.

By 4 a.m, she was up, ready to go again.

She asked, again and again, if I’d packed her pills. “I have to have them every morning,” she said, and don’t forget her comb and bobby pins, and “I just can’t do without those pills.”

“Are we just going to leave this?” she asked, pulling the leftover Chinese food out of the refrigerator. “I hate to waste all of this.”

Mommy clutched my arm as we walked through the airport.

Just before we got to the security gate, she asked to stop at a kiosk.

“I need to get something for Linda,” she said.

I reminded her we’d already gotten my sister a Hillary cap and something for my sister’s granddaughter, too. She looked hesitant but then, as she stared at the tchotchkes, perked up.

“I think I might like this,” she said, pointing at a small replica of the White House. “For me.” It cost $9.95.

FLORIDA TODAY’s Britt Kennerly is pictured at a Kentucky nursing home with her mother, Helen.

“I really should pay for this,” she said as the clerk boxed the trinket and I held out my credit card. When she had a job, she said, she paid for everything. When you had a job, I told her, you saved my butt more than once.

She put her hand in mine and clung to it, letting go only when we had to walk, one by one, through security.

For all I know, she’d already forgotten the details of our journey before we got on the plane.

She fell asleep as we waited for takeoff and, ever-so-softly, started to snore. She awoke with a start when the announcements started and put her hand on my leg. I made a joke about the puke bucket, which I magically didn’t need when I wasn’t in the back seat of my dad’s car anymore and never needed again once I started to navigate my own life journeys.

Join FLORIDA TODAY's Britt Kennerly at an exclusive event to discuss The Long Goodbye. Visit floridatoday.com/insider to register.

As we took off just after 8:30 a.m., Mommy leaned toward the window, pressing her hands, with those bright-red nails, against it.

She was already somewhere else, somewhere I can’t go, looking at the sky and smiling as I pointed out the monuments we’d seen on the fast-disappearing ground below us.

It wasn’t until later, when I’d looked through the pictures I’d taken, that I noticed: She was smiling in every single one of them.

Has dementia touched your life? Share your story with Britt Kennerly at an exclusive event at 5:00 p.m. on Wednesday, April 11. Click here for tickets.