Living With Dementia: West Lebanon Woman Writes of Role as Her Husband’s Caregiver
Marlis Powers, of West Lebanon, checks messages sent to her blog while her husband, Chuck, watches TV at their home earlier this month. (Valley News - Jennifer Hauck) Purchase photo reprints »
Marlis and Chuck Powers fill the bird feeder outside the living room window of their West Lebanon home. (Valley News - Jennifer Hauck) Purchase photo reprints »
Marlis Powers prepares to give her husband Chuck a B-12 shot at home. (Valley News - Jennifer Hauck) Purchase photo reprints »
While Chuck Powers watches, Marlis Powers picks out his clothes for the next day. (Valley News - Jennifer Hauck) Purchase photo reprints »
The Powers play a game of Scrabble together at their West Lebanon home. Marlis Powers said they try to do activities together that stimulate the brain. (Valley News - Jennifer Hauck) Purchase photo reprints »
West Lebanon — Chuck Powers was only 22 when he broke the sound barrier for the first time. The year was 1956, and he was at Williams Air Force Base outside Phoenix, training to become a fighter pilot. Like any flyboy, he knew that test pilot Chuck Yeager had been the first in the world to fly faster than the speed of sound in 1947.
After Yeager, daredevil pilots lined up to repeat his feat. Powers, who’d wanted desperately to become a fighter pilot since he was a kid growing up in Buffalo, N.Y., intended to join that club.
“A born fighter pilot,” Powers calls himself. “When I tried it, I took to everything real easy.”
A lanky young man with a focused gaze, Powers was flying an F-86 Sabre, a snub-nosed, swept-winged, silver hawk of a jet. It was a routine flight, and Powers was under orders not to attempt anything out of the ordinary.
But after telling the wingman flying next to him what he was about to do, Powers pushed the F-86 up to about 44,000 feet, rolled it over and pointed it straight down in a dive. (Because of its design, this was the only way that the jet could push through the sound barrier.)
The F-86 hurtled toward Earth. As it accelerated, the jet began to vibrate; Powers shook with it, his hand pushing the control stick forward as far as it would go. Somewhere around 770 mph, the needle on the Machmeter edged past Mach 1. For one otherworldly, out-of-body second, the vibrations stopped, and there was only a smooth current of air. A knife that Powers kept tucked in a pocket popped out and floated before him, midair.
When he landed, he was reprimanded for disobeying orders — the sonic boom had given him away — but that paled beside the thrill of having matched one of the great accomplishments in aviation of the post-war era.
As he tells the story, Powers, who lives with his wife, Marlis Powers, in Quail Hollow in West Lebanon, mimics with his hands the plummeting descent of the jet, the accompanying turbulence, and the knife hovering before him with the clarity of someone remembering an event as if it had happened the day before, not decades ago.
But when he recently told his daughter Lori Frankland, visiting from New York state, that he and Marlis like to go dancing twice a week, his recollection was far less accurate. In fact, the dance outings didn’t happen at all, but his wife didn’t bother to contradict him.
“You just agree because it doesn’t matter,” she said.
Now 79, Chuck Powers was diagnosed with dementia in 2008. It is not unusual, said Marlis Powers, for fact and fiction to become confused in his mind. “Sometimes I think he hears and sees things on TV and relates them to his personal life,” she said.
Dementia is a general term that describes cognitive decline, said Kesstan Blandin, a Program Coordinator for the New Hampshire Alzheimer’s Association and researcher with the Aging Resource Center in Lebanon.
Alzheimer’s disease is a diagnosis of dementia, she said, but dementia can also occur with Parkinson’s disease and Huntington’s disease, among others. Clinicians also distinguish between Alzheimer’s, which begins in the hippocampus of the brain, and vascular dementia, which can result from a series of small strokes in the brain.
“Alzheimer’s is the most commonly diagnosed form of dementia,” Blandin said; “but sometimes doctors and clinicians use the terms interchangeably.” It’s fairly common, she noted, for both vascular dementia and Alzheimer’s to be present in a patient.
Dementia is often experienced, she added, as a gradual accretion of small but significant losses of cognitive ability, a phenomenon that both Chuck and Marlis Powers have lived firsthand.
Chuck Powers has to be reminded how to wash his hair. He has lost his sense of direction: Marlis Powers must escort him even a few dozen yards from their apartment to one of Quail Hollow’s main buildings where he gets his hair cut, so that he doesn’t get lost. She has put tape over some of the buttons on the remote control, leaving exposed only those that he knows how to use; otherwise he pushes the buttons at random, which can distort the picture.
Chuck Powers, sitting in an easy chair by a large picture window, breaks in to his wife’s conversation. “What do you mean I can’t operate the TV remotes anymore?”
“You can hear me?” Marlis Powers asked from her seat at a table near the kitchen.
“How can I help hearing?” he said, before resuming reading.
Models of the jets Powers flew before he retired from the Air Force in 1970 sit on the top shelf of a book case: the T-6 Texan, a training aircraft; the F-86; the F-100 Super Sabre; the F-101 Voodoo, a supersonic jet fighter; and the OV-10 Bronco, a propeller-driven reconnaissance aircraft. When he sits in the chair by the window, Powers can look up at them, arranged in a line, noses up, as if poised for flight.
While stationed in 1963 near Ipswich, England, Powers crashed while flying the Voodoo. The plane, which was later taken out of circulation by the Air Force because of its flawed engineering, broke into three pieces and left him with internal injuries and partial paralysis. This disqualified him from piloting other planes but not from flying in them, and he was reassigned to Air Force Intelligence.
Frankland, who visits her father every six weeks, is curled up in a chair opposite with her Yorkshire terrier on her lap. She smiles when he makes his retort to his wife. She’s been poring over old letters that her father sent her when she was a little girl. Powers was stationed in Vietnam during the war, where he flew in reconnaissance planes over the South. Frankland’s visits, said Marlis Powers, lift his spirits, make him bubbly.
“He still recognizes family but is vague on names,” she said.
Both husband and wife know too well the complications of dealing with dementia. Chuck, who has a courtly manner and a placid mien, reads and watches Westerns and World War II movies to escape the toll the disease has taken on his brain and body. “He writes notes and notes and more notes so he doesn’t forget,” Marlis Powers said.
And Marlis has found her own form of expression for her pent-up emotion: She blogs.
At grammasblogtoo.com, which Powers started last August with the subheading “This Gramma loves technology and has a lot to say,” she writes about whatever catches her interest. Her subjects have included food, the books she’s reading, the dogs she’s known, the history of her family, raising children, 4-H, the weather, issues that face the elderly, her travels, veterans, World War II, and dementia, among others.
“It’s a release for me to write about what I’m experiencing every day,” she said.
It’s not the first time she’s contributed to a blog. She wrote advice for parents on the website of the company Gunamuna, which sells wearable baby blankets for infants and is co-owned by her daughter Denise Abraham, who is a consultant in the fashion industry in New York.
But Grammasblogtoo is all hers. With help from her four daughters, two of whom live in the Upper Valley, she learned how to set up the site, post frequently, organize the information and upload photographs and videos.
“A lot of people are intimidated by these things,” said Abraham. “She was 76 when she started this, and she just picked it up.”
“I have to say that the one thing I find most exciting is that she’s keeping her mind sharp with just the technology part,” said her daughter Judy Slack, who lives in Corinth. “She has to be on her toes.”
When Powers tells people of her generation that she blogs, “they look at me like I’m crazy. ‘Why are you doing that?’ ” Still, she persists. She gets about 200 comments a day, she estimated, although some are links to advertisements. Some responses have come from as far away as Russia and China.
“I was dumbfounded, really. I had no idea it was going out like that,” she said. A cousin wrote her recently to say that Powers’ blogs on caring for Chuck, while also trying not to neglect her own needs, had struck a chord because she was in a similar situation.
Many people blog, of course, but Powers’ age makes her somewhat unusual. Caroline Moore, a program coordinator at the Aging Resource Center in Lebanon, notes that while many people have taken advantage of the center’s support groups as a way to grapple with caring for spouses or parents with dementia, she has not met many who blog about their experiences.
Writing in any form, Moore said, “is a wonderful coping strategy. It relaxes people and allows them to process the things they’re going through and if they’re willing to share with other caregivers, find other comrades.”
Writing, and being heard, can confer feelings of power and control on those who feel overwhelmed by their responsibilities as primary caregivers, said Jeanne Childs, a chaplain at the Aging Resource Center who led a support group last fall called “Tell Me Your Story.”
“There are things you can ruminate on by yourself but when you actually pull it out of yourself and clothe it with words and say it to people,” it takes on new meaning, Childs said. Just as significant to the experience is shaping the narrative for others . “I think the writing in itself is incomplete. The audience, the witnessing of your story is a key ingredient.”
Chuck and Marlis Powers were married in 2004 in Olean, N.Y. This is the second marriage for both. They met in 1998 as the result of an ad that he placed in a local newspaper, saying that he was a country gentleman interested in finding female companionship.
“He was looking for a tall, slender woman and I had the audacity to answer that ad,” said Marlis Powers. “At my best I was 5-6, and at one time I was very slender.”
She is plain-spoken, with a level, shrewd gaze. When she and her husband talk, she gently prods him about incidents in his past, and corrects him if she thinks he’s given an incorrect date or age. “No, I don’t have difficulty with my memories,” he said, when asked, a trace of irritation crossing his face.
“He takes issue with me sometimes,” she said, looking at him. “Don’t you?”
“Nah,” he said, before staring out the window.
His wife has learned that it isn’t fair or useful to judge him by what he once was.
“He’s doing the best he can,” she said. “And there are times when he’s perfectly lucid.”
Marlis Powers had been widowed six years when she met Powers, who, after leaving the Air Force, went to work as a customs inspector at the Niagara Falls Peace Bridge. (His first wife died in 1989.) She and Powers discovered interests in common, and a love of rural life. He had a 200-acre property 75 miles outside Buffalo, and she “was used to being a country gal,” having lived for most of her life in Portville, N.Y., in what’s commonly called New York’s Southern Tier.
Powers realized that her husband’s behavior and memory had become erratic after he’d gone out on his land in an ATV, in woods he knew well, and lost his way.
It turned out he’d suffered a mild stroke, which probably contributed to his dementia. Once he was diagnosed it was clear he could no longer maintain such a large property, and the Powers sold the land and moved to the Upper Valley in 2009.
They chose the region because two of Marlis Powers’ five children live here: one daughter, Jill Polli, lives in Etna and the other, Judy Slack, in Corinth. And Powers wasn’t entirely new to the area: she and her first husband had bought a second home in Corinth in the early 1980s, which she sold a year or so after his death in 1991. (Her two other daughters live in New York City and Boca Raton, Fla., and her son lives in New York state.)
One word recurs throughout one of Powers’ blog posts on dementia: Patience. She puts it in bold type and adds an exclamation point, as a spoken reminder to herself, and to readers. “I tend to be a very impatient person,” Powers said.
Overhearing her, Frankland said, “You? You have the patience of a saint.”
Marlis Powers looked a little skeptical.
She added quietly, “I feel like I’m raising a child again.”
In her blogs, Powers offers advice to those in a similar situation. “I try to point out the things most common to people dealing with dementia. I try to stick to things people commonly run into,” she said.
Sometimes she underplays the difficulty out of a sense of discretion; at other times she is blunt. The thrust of her argument is that the person giving care should try to understand dementia from the perspective of the person receiving care.
“Don’t worry about what you can’t change,” Powers said. “Treat it with as much patience as possible. Understand what they’re going through, they’re just as frustrated. Do everything to make life as easy as possible for the patient,” she said.
To Slack, the blog is a way for her mother “to deal with (her situation). We’re not always there to listen to her.”
Writing has always been a focus in Marlis Powers’ life. She has kept a journal since she was 12, and keeps it still. As a young woman she wanted to go into journalism and had been accepted at Albany State University, where she intended to study English.
But her mother pressured Marlis to go into nursing, a profession her mother had aspired to but had not been able to pursue. “Her father didn’t believe in educating women — a waste of time and money,” Powers said.
In the 1950s there were fewer opportunities for women. Teacher, secretary, nurse — this was the trinity of accepted career paths for women. So Powers took her mother’s advice and, at 17, studied nursing for a year in Elmira, N.Y. She left, however, after concluding it wasn’t for her.
For financial and other reasons, though, she said, it “wasn’t (really) possible for me to go to journalism school, which is what I should have done.”
Out of 37 people in her co-ed high school class of 1953, only three girls went on to get college degrees, she said.
After quitting nursing school, she married her first husband, who was ahead of her at high school, She had her first child at 19. “In eight years I had five kids. I had a three bedroom home and a girl’s dormitory.” When Powers hears the litany of complaints from today’s generation of women about balancing work and children, she says to herself, “Get over it. You don’t know what hard is! The pile of laundry alone ...”
After having children, she went back to work part time as a teacher’s aide and then full time as an administrative assistant to the president of St. Bonaventure University in Allegany, N.Y, a job from which she retired at age 55. “I felt after that it was time for me to do what I wanted to do.”
She was president of the Portville Historical Society and oversaw the publication of Portville Goes to War, a commemorative history of its World War II veterans. She has written extensively on family genealogy, and discovered that she is related distantly on her father’s side to Calvin Coolidge. She also volunteers at the Howe Library in Hanover.
While Powers never wanted to go into nursing, she is now in the position of being a full-time nurse, an irony not lost on her. She and her sister had nursed their mother through nephritis, giving her dialysis at home in New York. She’d tended to her first husband when he became seriously ill with heart disease. And now she looks after Chuck.
“It’s my lot in life,” she said.
She often asks herself, she said, “Why me?” She paused. “But then, Why not me? Somebody’s got to do it. Sometimes I’m amazed at what I can do. Sometimes I think I can’t do this anymore.”
This is why, she said, she spends much of her time on computer writing, doing puzzles or cryptograms, or playing Scrabble, which is sometimes a source of annoyance to her husband, she admitted. “Sometimes he gets frustrated ... that I’m not keeping company with him when I’m trying to escape.”
“I know she gets frustrated and even discouraged,” Abraham said. “But I don’t see it when I’m with her. I think that’s part of why she writes about that aspect of her life.”
Marlis Powers is her husband’s nurse, chauffeur, chef, financial planner and confidante. She lays out his clothes, and helps him change into and out of them. She fixes him breakfast, something that until fairly recently he had been able to do himself. She takes out the garbage, another task he used to handle but cannot any longer. She takes him to his doctors’ appointments. She lays out his medications for him, so he doesn’t confuse them.
While her husband’s dementia can’t be said to be a blessing in disguise, Powers said, it has served one purpose. “Really, in some ways, I believe it’s made us closer, partially because of his dependency on me. There’s my need to look at him with new eyes and see his need. And it’s made me more independent.”
Sometimes Powers gets up in the middle of the night to write if an idea strikes her, and because ideas come to her all the time she hurries to get them down.
One of the first entries on her website was a heartfelt plea. She wrote: “I can deal with anything but please don’t take my mind.”
Nicola Smith can be reached at firstname.lastname@example.org.