The long goodbye
Dementia may steal my mom, but it can’t rob my memory of her
Editor’s note: This is a condensed version of a personal series from Florida Today columnist Britt Kennerly about her family’s journey through a dementia diagnosis.
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 — having 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
To truly understand who my mom is, you have to know a little about who she was.
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 — my maternal grandmother died with dementia in 1983 and my mom’s older brother with Alzheimer’s in 2012.
We are painfully familiar with its sad, vicious progression.
One in three seniors will die of Alzheimer’s or another dementia, according to the Alzheimer’s Association. And everyone who cares for them fights a battle that can, if they don’t seek support, wear them down or even kill them.
There were warning signs for my mom, 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 the joy and heartbreaks of seniors living on their own. On an August visit to Kentucky, I gave my mom, then 81, 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, she had a transient ischemic attack, commonly known as a TIA, or mini-stroke. I was in the Florida Today newsroom when my sister called from Kentucky to say our mother was at our childhood home, confused and locked out of the house. I was to call Mommy on her cellphone and keep her talking as my sister raced home.
My mother, a 5-foot-1-inch-tall woman who could change the oil in her car 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. She knew 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.”
And she has, struggling to hang on to her full and happy life even as the memories fall away, a word and a sentence at a time.
A memory just for us
As I realized my mother, too, would be making that horrible “long goodbye” people talk about when they’re discussing dementia, I wanted something that was all about us.
A trip, I thought, that I, selfishly, could look back on even when she couldn’t. So in early 2016, when she was still able to travel, I called and asked my mother: Where in the world can I take you?
I envisioned us in New York at a Broadway show, or in Aruba or Jamaica. She chose Washington, D.C.
My older sister, Linda Moore, who had been my mom’s 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 warned me that “if she says she has to pee, she has to pee. Find a bathroom.”
Several times before we landed at Ronald Reagan National Airport for our three-day journey, Mommy held her hands out and admired the manicure my sister had talked her into before the trip.
Everything fascinated her. The baggage carousel. 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. Throngs of people. The speed at which everything moved.
Two years later, my mother can’t tell me what day of the week it is, or enjoy reading, or remember many details of her life without prompting. She can walk and talk, but she needs help getting dressed and using the bathroom. She does not always recall names of her visitors and seldom if ever mentions my father, though they were married for 44 years before his death in 1994.
She has been in a nursing home since after her last hospitalization, in fall 2017. She probably will be in a nursing home for the rest of her life. My sister visits her every night. We talk on the phone, the three of us, sometimes by Facetime.
To truly understand who she is, and the strength she shows even as dementia pecks away at her, you have to know a little about who she was.
She was born Helen Louise Barnes in Cynthiana, Ky., on Sept. 23, 1932. She was the second child born to her parents, Elmer “Pete” and Bessie Barnes.
The first house my mother ever lived in, a frame structure on posts on a small, hilly farm, was little more than two rooms. No electricity. My mother read her books by a kerosene lamp.
“We didn’t know we were poor. Everyone was,” Mommy told me.
At 16, against her parents’ wishes, she started dating the man who’d be my father, Robert “Bob” Harney. She was valedictorian of her high school class. A cheerleader. My grandmother was widowed before my mother graduated in 1950 and did not approve of the union, wanting my mother to go to college — but was there when my parents married on Christmas Eve 1950.
They worked hard, in factories and later on a farm. Built two houses together, including one on the 68-acre farm where I spent much of my childhood. My mother, who didn’t go to work until my younger brother, Michael, started school, became the first female supervisor at the foundry where she worked from the ’70s until her retirement in the early ’90s.
Not until I started writing about all this did I fully realize that while I was living life as an aspiring writer, my mother was quietly working on fulfilling the dreams she had, too.
In a box under her bed, she’d kept every award and certificate she’d earned, along with a one-page life story she was assigned to write in a community college class in 1988. I read the essay on the plane home from Kentucky to Florida, crying until my head hurt.
“To keep up with the current trend of computerization I find myself in this class,” she wrote. “So here I sit with polynomials, hexadecimals, software, hardware, firmware and binary representation floating around in my head. At age 55 I don’t feel as comfortable with learning as I did at 15 ... however, I find this very interesting and will do my best to learn enough to keep up with the other generation.”
She earned a 95.
Love, loss and learning
We lost my father to a heart attack when he was 75. My mother was 62, newly retired. They didn’t owe a penny in the world. They had hoped to travel.
Instead, my mother returned to work, first at the factory from which she’d retired and then for a temp company at a 3M factory in my hometown, where most of the world’s Post-it Notes are made. She was almost 75 years old when she stopped working.
After her mini-stroke in 2013, everything changed in ways you don’t have time to dwell on because you’re too busy figuring out paperwork or arranging help or trying to find an outlet for your grief without blowing up.
In 2014, my mother began treatment for symptoms of memory loss.
There are no cures and no truly good endings with any form of dementia. Alzheimer’s disease is the sixth-leading cause of death in the United States.
Undignified and scary things can happen to the patient as the disease progresses, from losing life savings to out-of-character, embarrassing or violent behavior as cognitive ability and physical health crumble.
I know, sadly, that it’s very likely the person you’ve called husband or wife or mother or father will not recognize you in the end, even as you search their face for that much-needed confirmation that you are you to the person who gave birth to you or fathered your children or called you the light of their life.
I have learned to be diligent about paperwork, to ask more questions of health care providers, to demand answers. To handle long-term care and legal details in advance, as much as possible.
I know firsthand that the cost of longterm care is astronomical. A Place for Mom, a senior living referral service, puts the average cost of a nursing home room at anywhere from $4,000 to $8,000 ... a month. Medicare will not pay for long-term care.
I’ve learned it’s OK to laugh when the woman who used to recoil when one of us had a runny nose but wiped our snot away anyway is now sitting with her finger, as my dad used to say, up her nose to the elbow.
I have learned not to press my mother to recall things that are important to me but have escaped her.
I’ve learned to validate other family members’ feelings even when I disagree, to be kind every chance I get. Our mother would want that.
Just as she “taught” me when we played school at home when I was 4 and dying to get on the bus with my big sister, my mother is still teaching me how to live, how to thrive, even how to die. I’m remembering for both of us now. Our adventures in her green station wagon when I was a high school senior.
Our journey to Washington, and the vision of her, the U.S. Capitol reflected in her sunglasses as she told me “it’s not possible” to forget the trip.
On our final morning in D.C., we got up early for our taxi ride to the airport.
As we walked through the terminal, she put her hand in mine and clung to it, letting go only when we had to walk, one by one, through security.
When we took off just after 8:30 a.m., Mommy leaned toward the window, pressing her hands, with those brightred 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.
This is just a small part of my mom’s story, the one I promised her I’d tell someday.
Oh, I hope it helps somebody.
I know, sadly, that the person you’ve called husband or wife or mother or father may not recognize you in the end.