View from poet Donald Hall’s window: on ageism, writer’s block and the wonder of Andro-Gel

Poet Donald Hall next to the window of his Wilmot, N.H., home. Photo by Gary Knight

Poet Don Hall’s essay about the irrelevance of old people is the best argument against that wrongheaded notion. Published in the Jan. 23 New Yorker, “Out the Window” catalogs the indignities of old age as Hall views it, from being ignored by a grandchild’s teenaged friend, to a run-in with a condescending security guard at the National Gallery of Art — his girlfriend, Linda, pushing him in a wheelchair and stopping before a Henry Moore carving, whereupon the guard approaches to explain just who the sculptor is.

Hall, 83, is probably the world’s authority on the artist, having not only known him well but also written a heralded biography of the man.

But he and Linda say nothing and nod politely, only to be stopped again as they’re exiting the cafeteria by the same dunderheaded guard who bends down to ask Hall: “Did we have a nice din-din?”

Back in his creaky New England farmhouse, Hall takes his quiet rage out on a yellow legal pad, as he is wont to do. He writes with a cheap Bic pen. Then he has an assistant — aka “my friend down the road” — type the essay up, after which he edits it by hand and the ritual continues, noting each new draft with a number at the top. He writes only essays now and takes pleasure in the task, as he writes in the magazine:

New poems no longer come to me, with their prodigies of metaphor, and assonance. Prose endures. I feel the circles grow smaller, and old age is a ceremony of losses, which is on the whole preferable to dying at fifty-seven or fifty-two. When I lament and darken over my diminishments, I accomplish nothing. It’s better to sit at the window all day, pleased to watch birds, barns, and flowers. It is a pleasure to write about what I do.

• • •

In the spring of 2010, Cambridge, Mass.-based photographer and fellow Nieman Gary Knight and I drove up to see Hall in his New Hampshire farmhouse. We talked mostly about ageism as he sees it,  from the blue armchair where he spends winters watching juncos and chickadees, and worrying about the weight of the snow on the roof of the barn.

Our introduction to the legendary poet had taken place earlier that year when he lumbered onto Harvard’s Walter Lippman House stage looking like Walt Whitman fresh off a bender, his khakis wrinkled and his hair and beard unkempt.
“Poetry is like oral sex!” he bellowed at the start of his talk, which veered from dead metaphors, to a prolonged and recent writer’s block, to the sweet-sad memories of his poet-wife, Jane Kenyon.

An example of a dead metaphor Hall finds hideous: Never write that someone or thing “darted across a room” — better to say “moved quickly” and move on. Hall shared his all-time favorite line of poetry, written by Thomas Hardy, which he recited with bravado, his tongue drilling the consonants like a baseball on wood: “Down their carved names the raindrop plows. . . ”

After an hour and 15 minutes, he stood up abruptly and announced that he was sorry; he needed urgently to get up and go pee.

We loved it. Of all the eccentric geniuses we heard from at Harvard, Hall was the the one who seemed most genuinely himself. He spoke lustily of language —  a tonic for a room of middle-aged journalists who were being encouraged to write in 140-character exchanges and HTML.

Gary and I arranged a follow-up interview through a series of old-fashioned letters; Hall detests the phone. He dictated his notes and directions through his assistant, while I wrote back  on my laptop but mailed my notes  in envelopes made from recycled maps that I imagined he’d enjoy. On his personal stationary, the assistant typed that any Tuesday in May would be fine but mornings were best. “Mid-day I get comatose,” he explained.

• • •

“I used to have solid thighs,” Hall tells us by way of greeting, the morning we arrive at Eagle Pond Farm. His hands are bony, too, with veins like a topographical map. He smiles wryly and points to the Band-Aid on his arm. “It tears for no reason at all; they call it ‘thin skin.’ I kinda like that,” he says. “But getting old is just a series of losses.”

Photo by Gary Knight

When his poet-wife Jane Kenyon died of leukemia in 1995 at the age of 47, Hall said he had so many words gushing from him that some days he couldn’t write fast enough. He wrote memoirs (“The Best Day, The Worst Day: Life with Jane Kenyon”). He wrote poetry collections (“Without,” “The Painted Bed.”)
He talked about her to anybody who’d listen. “If I was at the counter of a diner and someone said, ‘Can you pass the salt?’ I’d say, ‘Yeah, my wife used to like a lot of salt.’ ”

For a solid year, he wrote her a letter every day. He couldn’t fill his tank up with gas without driving to her grave. “She would have turned 64 this year, and that’s unbelievable to me,” he says. “I still think about her every day.”

But he also tells us about his girlfriend, Linda Kunhardt, a teacher nearly 30 years his junior. And she’s definitely not the first.

Just two weeks after Kenyon died, Hall bought himself a box of condoms, desperately searching out affairs. They were, he wrote in one poem:

As distracting as Red Sox baseball

And even more subject to failure.

He holds up a recent copy of Poetry magazine to show off Linda’s first published work, called “The Slaying.” It’s a five-stanza poem with a refrain that goes: I find executives in my pants.

Hall giggles and says: “I have no idea what it means.” But he loves that she’s as off-beat as he is and, he adds, “She’s messy, too. She loves my hair.”

• • •

Photo by Gary Knight

In 2007, Hall thought he had written his last. “What came first, the depression or the writer’s block, I don’t know,” he explains. Having just finished his yearlong stint as Poet Laureate of the United States, he found himself pacing from one end of his Civil War-era farmhouse to the other. For the first time in his life, he could not commit words to paper.

He lost 60 pounds.

His son was so worried that he removed his pistol from the house.

He took him to a doctor, who found a pharmaceutical fix. And before long, he picked up his legal pad.

The New Yorker published “Meatloaf” in July 2010, an ode to baseball, grief and poetry, written in nine stanzas of nine lines of nine syllables.

I live alone with baseball each night
but without poems. One of my friends
called “Baseball” almost poetry. No
more vowels carrying images
leap suddenly from my excited
unwitting mind and purple Bic pen.

With any luck, Hall told us he figured he had one last book left in him, his 39th. And true to word, “The Back Chamber” was released a year later in September 2011. As an L.A. Times reviewer noted rapturously: “Eros and the particulars of skin-on-skin are found on nearly every page.”

A poem generally takes him a year to write, so he had been happy to unearth some abandoned ones from “back from when I was writing a good deal every day and writing a lot of crap.” He saved a dozen of 83 pages and threw the rest away.
During our meeting, one of the recent poems, titled “The Last Stage,” was in its 130th draft and counting. It contained references to Kenyon, dead Red Sox players and anxiety about his house burning down. He read it aloud to us, and it was electrifying.

He said his kids would never want to live at Eagle Pond Farm, and it pains him to consider what will come of his family collections — not the deKoonings and the Warhols as much as the seashells and stones, the tiny lead baseball players he played with as a kid, the statue of an Egyptian ruler he can longer name.
How does he want to be remembered? I asked.

“I’ve lived to see people with three Pulitzers die and be totally forgotten; that might happen to me. But I’d like to think I’ll survive in my work. ”

• • •

In a letter he mailed after our interview, Hall divulged how exactly he’d conquered writer’s block. A pharmaceutical testosterone called Andro-Gel renewed his appetite for … everything.

“Shortly after taking it, my beard grew larger, I felt horny, and I started some new poems. The new book should be dedicated to Andro-Gel! I think this book will be my last. I don’t think I will write any more poems. I am not depressed. I can write prose.”

He may feel peripheral at times, but the New Yorker piece is vintage Hall: elegant and full of gratitude, gumption and candor. I’d love to know how how many drafts he took to compose this thrilling, sweeping sentence:

Decades followed each other — thirty was terrifying, forty I never noticed because I was drunk, fifty was best with a total change of life, sixty extended the bliss and then came my cancers, Jane’s death, and over the years I traveled to another universe.

One dash, five commas, and the anguish of adulthood nailed in just 44 words.

Donald Hall sees the world quite well from his worn chair and, hell yes, he can still write prose.

When he extracted a Kent from its box — he still smokes a pack a day — his hands shook and so did his bushy beard. Photo by Gary Knight

Alzheimer’s deserves to be on the front page

Skip and Meg Curtis, New Hampshire innkeepers, one year after he was diagnosed with early onset Alzheimer's.

Meg Curtis read my recent story about Alzheimer’s in PARADE magazine, and she wasn’t happy. Why was her story, painstakingly told to me in an hourlong interview and several followup e-mails, reduced to a simple, two-graph blurb? Why didn’t we include the photograph of her husband, Skip, robbed of his personality by early-onset dementia at the age of 59, so readers could see how shockingly young he was?

“First of all..this is NATIONAL ALZHEIMER’S MONTH!!!!” she wrote in an e-mail last Sunday when the story disappeared. “What appears on the cover is a pie and most of the magazine is devoted to pies! This disease is reaching epidemic proportions, and every one of us will be affected in some way with this disease. Even Medicare could be bankrupted by the Baby Boomer generation.”

Meg was right. Alzheimer’s deserves much more attention than it gets. The struggles she and Skip faced deserve to be told in all their complexities and glories: Her gut-hollowing realization that she had a whale of a bigger problem than a foreclosure notice when her husband finally admitted he hadn’t paid their mortgage in six months — because he could no longer figure out how.

Dealing with an ill-equipped medical establishment (one doctor had difficulty even uttering the name of the disease). Her efforts to keep her beloved husband at home until the end. How little hope she was given beyond Skip’s participation in clinical trials.

An activist now trying to keep the message alive, Meg made a promise to her husband before his death last year  that she would dedicate the rest of her life to fighting “the monster,” as she calls it.

The federal government spends $3 billion annually on research to combat HIV/AIDS, a disease that kills about 10,000 a year, Meg explains. Which is well and good, but it only spends $450 million towards research for Alzheimer’s, a disease that kills 80,000 Americans a year. That’s the message Meg wants to push: To slay the monster, we’ve all got to step up because there’s not an American alive who won’t personally be affected somehow by this disease.

I knew the facts and figures already before undertaking this freelance assignment, having spent a year reporting on caregiving issues and studying long-term care at the Harvard School of Public Health. I also knew, after meeting with several book agents in the throes of my research, that as one put it: “People don’t want to read about dementia — it’s too depressing, and there’s nothing they can do about it to make it better.”

Writing this brief, 600-word PARADE story taught me a powerful lesson about dealing with grieving families. It’s a notion I heard repeatedly during my recent Dart Center for Journalism and Trauma Ochberg fellowship: As journalists who regularly interview traumatized or marginalized people, we owe it to our subjects to explain exactly what we’re trying to do before we interview them.

I could have been clearer about my intentions and limitations with Meg and more honest with myself about the heavy-handed summarizing that a short piece in a general-audience magazine requires. But as someone who routinely writes 3,000-word narratives, I can’t help but want to know the whole story.

This story was just a sliver of a piece of the long slog that families grappling with Alzheimer’s face. It focused on the warning signs of Alzheimer’s: The moment a woman progresses beyond simply forgetting where she put her keys to becoming lost and confused driving around her own neighborhood; the moment a man tells his wife in all seriousness and apropos of nothing, “An airplane has just landed on the roof.”

Perhaps that’s as much as I should have talked to Meg about in our interview. But as I explained to her last weekend, my future stories on caregiving will very much be informed by the whole of her story. In a talk I’m giving to the American Medical Directors Association in March, I plan to drive many of her suggestions home.

“Don’t sit back in your rocking chair and just wait to die,” Meg advises other families. Join clinic trials through the Alzheimer’s Association. Get a second opinion from a memory-care expert, especially if your family doctor is uncomfortable talking about the disease. Know your limits, and don’t forget to take care of you.

Skip Curtis died last year at 63, four years after he was diagnosed — but not before helping researchers identify the disease in a clinical trial involving spinal fluid. “It gave us a purpose,” Meg told me. “And he felt that he was helping mankind, which was his main purpose all along in life.”

His story has contributed in other ways, too. The PARADE piece alone generated so much response that the national Alzheimer’s office in Washington told me their helplines were jammed the day after the story ran. More than 32 million sets of eyeballs read PARADE, and that’s another statistic that can’t be ignored in these days of dwindling print-media consumption.

People still read, and they still crave stories that reflect their fears and concerns, even short how-to articles that are buried alongside cover stories on Thanksgiving pie.

Lynn Forbish: “I have dementia, not [expletive] herpes!”

When journalist Lynn Forbish was diagnosed with a fast-moving dementia in 2006, doctors said the end wouldn’t be pretty. She could expect to live about five more years, and chances were she’d die of an infection, curled up in a fetal position.

But Forbish, 67, died Wednesday in a Janesville, Wis., memory care facility in much the same way she lived — on her own terms.

She’d started refusing food last week, clamping her teeth tight and turning her head; pretending to fall asleep. Her final hours were pain-free, with hospice workers and her favorite cousin by her side.

“She was done,” recalled her daughter-in-law, Katie Forbish, of Botetourt County. “As headstrong as she was, by God she was gonna go on her own terms.”

Profiled in a 2007 newspaper story, Forbish was known for holding reporters to her exacting, sometimes copy-skewering standards. From 1993 until her 2005 retirement, she served as the The Roanoke Times’ chief copy desk editor, the final arbiter on stories before they went to press.

When news broke at night or on weekends, her command presence enabled her to pull off coordinating phones, photographers and reporters.

Former reporter Lois Caliri described working with her on a sensitive story about opponents of a proposed AEP power line. Forbish questioned Caliri repeatedly before the story ran, weighing its merits and double-checking every name and detail.

Caliri recalled once telling her: “I love the way that. . . when you speak or need something, people come running.”

Forbish raised her eyebrows, as if to say: “They better.”

To live nearer her son, Forbish moved to Roanoke after copy editing for The St. Petersburg (Fla.) Times, where she also reviewed entertainers and minced characteristically few words, telling Milton Berle in print, for instance, that he needed a new shtick.

Divorced in the mid-‘60s, she began newspapering in her Janesville hometown, where she advanced from clerk-typist to reporter, covering cops and schools and writing features — while raising two small children on her own. To pay for braces for her son, she once worked three jobs.

“She loved newspapers because she loved to learn new things, and she thrived on that deadline rush,” her son, Larry Forbish, said.

She believed, too, in newspapers’ responsibility to educate and help readers, which was why she approached a reporter in 2006 with a request to write her story — before she could no longer tell it.

As the disease progressed, her personality mellowed. Forbish joined a church, took a boyfriend and stopped snapping at people who “patronized” her by trying to guess a word she couldn’t recall.

To tease her old coworkers about not visiting her more, she threatened to send them a Christmas card that read: “I have dementia, not [expletive] herpes!”

In July 2007, she moved to a facility in Janesville, where her daughter and many other relatives live. Before she became immobile, she liked to wander into other patients’ rooms to socialize and watch television. She loved laughing with people, even after she could no longer talk.

Not long ago, she re-asserted her legendary will by refusing to roll balls of yarn — she never was the crafty type. Relatives suggested music therapy instead.

“It was down with the yarn, up with the Beatles!” Katie Forbish recalled, laughing. “I’m just so proud that she kept her spunk until the very end.”

— Roanoke Times, April 16, 2010

Reform on the backs of the elderly

Cheryl Jones prepares Margaret Bass ("Mother Bass") for breakfast. Photo by Josh Meltzer

A home-care aide I know once scrubbed an elderly client’s toilet with balls of used tinfoil and denture tablets — because the old woman was too poor to afford cleaning supplies and too feeble to do the cleaning herself.

Many aides do less rigorous, but no less important, activities. They cook meals, check blood sugars and bathe people who can no longer bathe themselves. What they do — some for just a few hours a day — makes the absolute difference between a person staying home and a person going into that most-feared institution: the American nursing home.

Which isn’t just sad, it’s expensive. At an annual cost of $77,000 per person, prolonged nursing home stays force most middle-class elderly end up on Medicaid — just like two-thirds of all nursing home residents in America.

Among the many cuts to the state’s MassHealth program proposed recently by Gov. Deval Patrick, the most myopic is the one that calls for the administration to stop paying for personal-care or home-care attendants who serve patients fewer than 15 hours a week.

Sounds reasonable, at first glance, to remove the benefit from the least needy of the recipients. But anyone who has spent time in the company of a home-care aide will attest that those few hours a day are absolutely critical to the client who needs an insulin shot or her therapeutic socks changed or his invoices sorted so the light bill gets paid.

In fact, researchers working at Boston’s Hebrew Rehabilitation Center for Aged found that when screening to see who was at the greatest risk of institutional placement, seniors who could no longer take out their own trash ranked near the very top.

“Taking out the trash is a relatively time-limited task,” said Elise Bolda, health policy professor at the University of Southern Maine. “And yet without it you really can’t continue living in your own home.”

Paying a home-care agency $19 an hour for part-time chores and companion care seems like a steal compared to the $219 per day it costs to fund a semi-private room in a nursing home.

Medicare-funded home health programs have also come under attack in Congress, with reform proposals calling for millions of dollars in cuts that seem at odds with the Obama administration’s stated cost-savings goals of reducing hospital re-admissions.

Sure, it’ll cost four times as much to put aunt Agnes in a nursing home, the logic goes, but if that money is coming out of a different taxpayer pot, we still get to claim the home-care savings, right?

Right now 76 million American baby boomers are slouching toward retirement, a demographic shift that’s unprecedented in the history of the world. When Medicaid and Medicare were designed in the mid-‘60s, family members lived closer to each other, not as many women worked and people with chronic illnesses didn’t live as long as they do today.

Forty-five years later, we’re left with a confusing array of home-care offerings with different payment requirements, eligibility criteria and reimbursement systems, not to mention coverage limitations that make for huge gaps in services.

I know a 60-year-old woman, an executive secretary for a hospital president, who was too young to retire, and yet she couldn’t afford to pay a home-care aide to watch after her 69-year-old demented husband while she worked.

Veterans Affairs benefits paid most of his adult-day care bill for several months, but when his dementia worsened and he could no longer stay at the center, a social worker told her there was nothing else the VA could do to help her keep her husband at home. “We’re sorry, there’s no program for that.”

Who’s going to take care of us baby boomers when we’re old and frail? Who’s going to help us take care of ourselves?

The politicians need to be asking these questions rather than masking them with disingenuous talk of cost-savings and so-called reform.

In praise of Evelyn Coke

An article in today’s Washington Post helped kick-start my re-entry into the world of home care for the elderly, the subject of my Nieman year research. It also led me to the story of an amazing woman named Evelyn Coke. The Jamaican-born immigrant was a long-time home care worker in Queens, New York, where she ministered to the frail elderly in their homes, often working more than 70 hours a week. For $7 an hour.

I’ve spent a lot of time with home care workers in the past two years, and I know they tend to be overwhelmingly low-income, female and minority — half, in fact, earn so little that they must rely on food stamps, and most either aren’t offered health insurance or don’t earn enough to be able to afford it even if it is offered. I also know that the good ones tend to view their work as a calling.

What I didn’t know, though, until I read about Evelyn is this: Due to a 1975 loophole in a Labor Department regulation, the nation’s 1.4 million home care workers are exempt from overtime and minimum wage requirement protections outlined in the 1938 Fair Labor Standards Act.

Evelyn tried to change all that in 2001 when, working for a Long Island home care company, she sued her agency in a case that went all the way to the U.S. Supreme Court. In 2003, the court sided with the Bush and New York City mayor Michael Bloomberg administrations, both of which filed friend-of-court briefs saying that paying the aides more would bankrupt companies and ultimately lead to greater institutionalization of seniors. Unlike the Lily Ledbetter case, this one didn’t rally most women’s groups.

Because she didn’t have health insurance, Evelyn put off going to the doctor until she was 65 and qualified for Medicare. By that time, her kidneys were failing. She died last August due to complications from a serious bedsore, the kind she had once been so good at tending. Having been denied justice by the court, her son explained, she had not been able to afford a home care worker in her final days.

Home care is a growing industry in a rapidly aging society, with expectations for the employment of 2 million home care workers by 2014. (The Labor Department says the only faster growing occupation is systems and data analysts.)

We don’t need data analysts to tell us that the United States is headed toward a long-term care catastrophe if it doesn’t give more credence to the work of these women — and the patients they care for — as it cobbles together health-care reform. (For more information, check out a very recent article in the journal Health Affairs on the late Sen. Ted Kennedy’s efforts to weave long-term care into current legislation.)

Would that Florence Nightingale have been more prescient when she wrote in 1867: “My view you know, is that the ultimate destination of all nursing is the nursing of the sick in their own homes. . . . I look to the abolition of all [institutions such as hospitals and nursing facilities]. . . . But no use to talk about the year 2000.”

Another sad parting. . .

Photo by Josh Meltzer | Roanoke Times, December 2007

I was home in Roanoke for Christmas, just about to dive into presents at our uncle’s house when I noticed a voicemail on my phone: Tommy Rhodes had died an hour before, and his wife, Linda, had wanted me to know.

We knew it would probably happen before the year was out, Linda and I, which is why I had already written most of his obituary (which follows below) before I left my newspaper in August, with her blessing. “There’ll be just one more story,” she told me. “The last one.”

So it was that I sadly wrote the ending to a story I’d been following for the better part of two years — ever since Linda and I met at the Adult Care Center of Roanoke Valley in the fall of 2007, and she agreed to let me into her life. She’d already been on the caregiving journey for five years at that point and was struggling, she admitted, to keep Tommy at home. When the time came to put him in a nursing home, how would she know it was the right thing to do? What I proceeded to witness for the next several months would astonish me. Her devotion, chronicled in a March 2008 story, astonished droves of readers, too: Friends she hadn’t seen in years volunteered to mow her grass; strangers accosted her at CVS and in the dentist’s office, saying, “You’re that lady in the paper, aren’t you?” And: “You’re amazing.”

One reader donated a bidet after reading that Linda needed one to help with Tommy’s toileting. After an end-of year-update nine months later revealed that she was trying to sell her house — in order to pay her home-care aide, at a pricetag that’s well beyond the reach of most middle-class families — a reader in Stuart mailed me a $700 check to give to her. Linda was floored.

My aunt Barbara told me once that she admired the way I “fall in love” with my subjects. That’s not my goal, of course, but it happens, especially when it’s someone as honest and down-to-earth and smart as Linda Rhodes. I’ve learned that in order to render the intimate details of a person’s live, you got to get in there deep and talk about the hard stuff, like what it was like not to dial 9-1-1 the night she thought he was dying and what she said the day he’d gotten himself kicked out of day care for kicking another patient. Columnist Jimmy Breslin wrote that empathy is the key to human understanding, and that’s my simple goal: to understand a person or a situation so well that I can render it fully. I can’t help it if falling in love is sometimes a byproduct.

Last summer, when the “Age of Uncertainty” team won a national award for the series — much of it due to the Linda Rhodes’ story — we turned the check over to her, a small way to say thanks. Again, she was floored. And then she went out and did something that shouldn’t have come as a surprise to anyone: She spent the most of the money buying us gifts.

Dec. 27, 2009

The Roanoke Times

It was not the ending that Linda Rhodes had wished for her husband, Tommy, who died Christmas Day at the Virginia Veterans Care Center.

If she’d had her way, she would have kept Tommy in the Williamson Road-area home they shared for decades. Her struggle, documented in The Roanoke Times’ 2008 “Age of Uncertainty” series, illustrated the demands of dementia on caregivers, especially on younger ones such as Linda who still work full time.

For almost eight years, Linda was determined not to place her husband of 41 years, who had severe dementia, in a nursing home. But her body had ideas of its own: a herniated disc, an inflamed Achilles tendon and a knee whose cartilage was worn beyond repair.

“You’re a surgeon’s nightmare,” her doctor told her.

Back in April, in preparation for her second surgery of the year, she finally took the myriad advice she was given — by doctors and relatives, by friends and strangers alike — and placed Tommy in a nursing home.

She said she knew how Moses’ mother must have felt when she put her baby in a basket and sent him adrift amid the Nile River reeds. “She had to do what was best for him, not what was best for her.”

‘I have no choice’

She had put their house on the market in fall 2008 in hopes of using the proceeds to pay for Tommy’s in-home care, which cost about two-thirds of her take-home pay. After a series of unreliable sitters, she finally found home-care aide Latoya Davis, who was as good with Tommy as she was.

But with the real-estate market in the pits, she took the house off the market earlier this year. She moved their bedroom downstairs in preparation for her first surgery, to repair her Achilles, and paid Davis overtime to help them both during her recovery.

It wasn’t ideal, she conceded, especially at night when Davis wasn’t there. Tommy fell one night after slipping in the bathroom. With a brace on her foot, Linda caught him as he fell, wedging himself between the bathtub and the wall.

The disease progressed and, by spring, Tommy had forgotten how to sit down. When he did get up, he’d walk around the house for four, sometimes five hours at a time. He needed help getting out of bed, too — something Linda’s bad back could not accommodate.

“I probably could’ve done it a couple of months sooner, but I just wasn’t ready,” she said, referring to moving him to a nursing home. “Sometimes I think God sends you what you need. If I hadn’t physically gone to hell, I’d might still be trying to make it work at home.”

During his first several weeks at the veterans care center, Linda visited Tommy before and after work. Most days she took her lunch hour from Lewis-Gale Medical Center to drive over and feed him.

People whisperer

Charge nurse Jessica Nichols said family members of other patients were “mesmerized” by Linda’s ability to manage Tommy at home for as long as she had. “She taught us her tricks,” Nichols said, adding that Linda typically noticed changes in Tommy’s behavior before the staff did.

Linda cringed when Tommy fell twice during his first week there. But she worked with staffers to develop a timing plan for his medications and a regimen that called for an aide to be present whenever he got up or down.

She wasn’t sure Tommy recognized her during her visits, although one time he lit up when she walked in and pointed her out to the activities director, saying: “There’s my wife.”

She was a hit with other residents, too. One man told her he was scared because “my daddy’s coming to kill me” — until Linda assured him that she’d locked the doors and he was safe. Another wanted to know if he could follow Linda as she pushed Tommy in a wheelchair through the “wandering garden,” an outdoor space for dementia residents.

“I feel like the horse whisperer — except with people,” she joked.

Alone at home at night, she couldn’t get used to the silence, sometimes thinking she heard phantom snores from the den where he’d napped.

But two months into his nursing home stay, she made a bitter kind of peace with the arrangement. “I’m 100 percent happy with his care at the nursing home,” she said in July. “But I’m 110 percent sure I’d rather have him at home.”

No bad memories

As he entered the last phase of the neurodegenerative brain disease that would take his life, Tommy Rhodes began to have trouble swallowing. One night, as his wife spoon-fed his pureed lasagna and garlic bread, he pushed her spoon away and said, “Get that damn thing outta here.”

Linda smiled, waited a few seconds and offered the spoonful again. He ate. The ritual repeated itself until the food was gone, then Linda wiped his mouth with his bib.

For several weeks this summer, Linda recovered from her second surgery, a knee-replacement operation, and could not visit Tommy at all. It was the longest period of time in their marriage that they had been apart.

She had long worried that when her husband died she would only be able to remember the care-giving catastrophes that encompassed the last seven years of their life together– the sleepless nights, the bathing and toileting disasters, the time he got kicked out of the Adult Care Center for kicking another patient and Linda, all teary and exasperated, asked him: “Now what are we gonna do?”

But during her month recuperating from the knee replacement, she said she enjoyed looking back on their life together: the way he always sat by her at large family gatherings, the way he surprised her when she came back from a beach trip with the kids by hiding behind the door.

“I can honestly say that, before this, I don’t have a bad memory of Tommy and I together. Not one.”

‘Remember him this way’

Things normalized for most of the fall, with Linda stopping by the care center to feed Tommy before and after work.

By mid-December, though, his brain had begun its final shutdown.

“The nurse asked me this week if I would consider a feeding tube,” Linda wrote in an e-mail Wednesday. “No, no, no.”

She related a recent exchange she’d had a few weeks earlier, when after feeding Tommy, he took her hand and with great concentration put it to his face, rubbed his cheeks and kissed her fingers. For fleeting moments, she knew, her man was still in there.

“He was really struggling [to breathe] at the end,” said her daughter-in-law Beth Rhodes, who offered to sit with her in his final days. But Linda wanted to handle it alone, with the help of the center’s staff and morphine to ease her husband’s pain. Their three children and eight grandchildren came by on Christmas Eve to say goodbye.

Tommy Rhodes died on Christmas Day with his wife at his side. He was 70.

On her Facebook page, Linda posted a picture of her husband from earlier times, his baby blues twinkling not unlike the first time she glimpsed him, in his 20s, driving down Williamson Road. “Remember him this way,” she wrote.

“Finally, after almost eight years, my beloved is at peace.”

Linda Rhodes will host a celebration of Tommy’s life from 4:30 to 6:30 p.m. Tuesday, on what would have been Tommy’s 71st birthday, at Friendship Retirement Community’s Residents Center.

The real faces of journalism

Charles “Hap” Fisher is pushing 103. He doesn’t hear well, he’s got a bum hip, and he needs a pacemaker to keep his ticker beating right. And yet every day he still pulls out his calculator, trying to bring new chemistry formulas into being, trying to do good in the world. “People who don’t work 10 hours a day are sissies,” he says.

One of a growing number of centenarians, he also happens to be the oldest living resident of Brandon Oaks retirement community, the oldest alumnae of Roanoke College and more than likely the oldest scholar still actively publishing research.

My profile of him, which ran in Tuesday’s paper, was essentially a trend piece. I used one very extraordinary individual to reveal one slice of an aging America, a place where the term “senior citizen” can’t begin to capture the diversity of this demographic.

As a Nieman fellow this fall, I’ll get to learn more about the age boom — how it fits into health-care reform, its impact on programs like Medicare and Social Security, and all the other personal and political challenges that present themselves when 76 million baby boomers prepare to turn 65. I’m unspeakably grateful that I’ll get to sit in on classes taught by some of the world’s greatest brains — cutting-edge Alzheimer’s researchers, health-care economists, architects and urban planners who are trying to design the retirement communities of the future.

But I doubt I’ll meet many like Hap, who reads voraciously — The Economist being his favorite publication. When he indulges in a novel, he prefers to read it in Spanish, to keep his mind sharp.

I won’t be spending time with people like Lucille “Big Mama” Blackwell, who died a week ago Friday at the age of 85 and whose obit I had the privilege of writing Sunday. The great-granddaughter of slaves, Big Mama dropped out of school in the third grade to help her parents work a white man’s tobacco farm. She never learned to read, but there was a wisdom about her that I doubt I’ll bump up against at Harvard — or anywhere else. “I have no spirit of fear, and I thank God for that,” she told me last year. “See, when it’s my turn to go, I’m ready to stand before the King and hear him say, ‘Well done, Lucille.’ ” 

I won’t be a five-minute drive from the home of Linda Rhodes, whose struggle to take care of her dementia-diseased husband, Tommy, has been the subject of some of the most heartbreaking and most rewarding reporting of my life.

These are moments you don’t get to witness every day, which is what keeps so many journalists plodding away still — despite all the industry red flags, despite the so-so pay, despite all the times we bolt upright at 3 in the morning worried about a possible layoff, or a possible mistake in the next day’s story, or how we’re going to get our kids to school and practice and music lessons — and still get that story turned in on time. 

I won’t miss the anxiety and the second-guessing you create for yourself when you’re in the middle of a complicated project — and, even though you’ve been there hundreds of times before, you’re still not sure you can pull it off again. (“You’re full as a tick with this one,” my friend Mary told me once, mid-project.)

But I will miss people like Hap, Big Mama and Linda Rhodes. No matter how complex the conversation or how heady the academic vibe, they are the teachers I want to keep foremost in my mind.

Statistics are well and good, but I think the best journalism begins not with a number but with a story.

 

I love it when I’m leaving a profile subject after the last of many interviews and ask the profilee: “Is there anything you’re worried about with the story?” And the subject answers, “No, we’re good.”

Trust, people. It’s No. 1 in the toolbox,  tied closely to picking the right person to begin with — someone who puts the truth ahead of their image, someone with whom you can develop a near-immediate rapport.

Yesterday, I learned that our 2008 series, Age of Uncertainty, won a Casey Medal for Meritorious Journalism. Many people worked on this newspaper and multimedia project, a 10-part series documenting the struggles of caregivers for the frail elderly — both paid and unpaid, medical and not. Their names will be all be listed on the award, and deservedly so.

But two of the many people featured in the series deserve to be singled out for honors, too. One is Linda Rhodes, the 60-year-old full-time worker and full-time caregiver of her husband, Tommy, who’s had dementia for going on seven years. The other is Cheryl Jones, a single mom and community college student who works as a home-care aide for Family Service of Roanoke Valley.

Linda let us into her life like no other subject I’ve encountered before or since. Between photographer Josh Meltzer and I, we probably took 80 hours of her time over the course of several months. She fed us. She invited us to holiday meals. She shared what keeps her awake at night, opened up old photo albums, invited us to her workplace and described in perfect detail who Tommy Rhodes was before the disease stole him away. As a journalist, you’re really not supposed to fall in love with your subjects, but in my 25 years of storytelling I have never been as blessed to garner such trust from a subject. And love her deeply, I do.

Cheryl was angel-sent; there’s no other way to put it. She took time to explain everything from the Medicaid spend-down to the real-life troubles her frail elderly clients have in accessing services. More importantly, she showed us by inviting us into the homes of her patients, friends and even some of the neighbors she keeps tabs on in her Rugby neighborhood. Her name wasn’t in every story in the series, but her presence surely was. If an agency official or medical expert taught me something in an interview, I appreciated it. But when Cheryl said it, too,  I knew for a fact it was true.

Statistics and computer-assisted reporting are well and good, but I think the best journalism begins not with a number but with a story: A wife who has to stop herself from dialing 911 when she thinks her husband might be dying — and remembers the Do Not Resuscitate order. A home-care aide who makes $13,000 a year changing Depends and checking blood sugars and, when a client is too poor to afford cleaning products, balls up little bits of tinfoil to scrub the toilet with instead.

Those are the images that move me and, I hope, allow me to move others. At the heart of it is the thing we talk about least in this business and yet, when you really peel back the layers of any complicated, intimate story, it’s what we lean on the most: trust.

Thanks to editors Carole Tarrant, Dan Beatty and Brian Kelley for giving Josh and me the time to establish real trust. And thanks to Linda and Cheryl for pushing the media stereotypes aside and letting us into their lives.

 

Cheryl Jones visits Margaret "Mother Bass" three times a week, taking care of cleaning, personal errands and light medical duties.

Cheryl Jones visits Margaret "Mother Bass" three times a week, taking care of cleaning, personal errands and light medical duties.

 

Linda Rhodes helps her husband Tommy get ready for bed in a scene from late 2007. Recently, she had to place him in a nursing home while she underwent knee-replacement surgery, but she looks forward to feeling better so she can resume her twice-daily visits.

Linda Rhodes helps her husband Tommy get ready for bed in a scene from late 2007. Recently, she had to place him in a nursing home while she underwent knee-replacement surgery, but she looks forward to feeling better so she can resume her twice-daily visits.