I ring the bell for Apartment #2. But before I have time to flatten the creases in my skirt, a gray-haired man wearing no shoes appears at the door and lets me inside.
Retired physician David Hilfiker, 68, has invited me to his Washington, D.C. home to discuss the blog he's operated for the past 10 months.
David has Alzheimer's disease, a type of dementia that causes memory deficits and difficulty performing everyday tasks. This cognitive disorder manifests variably across patients, and its symptoms can appear in people as young as 30 or as old as 90.
He was first diagnosed in September 2012, although he'd experienced symptoms of "mild cognitive impairment" five years beforehand. David Googled "natural course of Alzheimer's" to prepare himself for the next few years of his life.
"It was about a 10-year period, and you spend a year or two fairly well," he says. "There was a deep drop over a year or two, and then you spend four or five years dying."
Paulette Michaud, director of Early Stage Services at the Alzheimer's Association's New York City Chapter, explains, "Everyone comes at this disease in a very different way" — both in terms of how it's diagnosed and how people cope. To define a typical, "natural course" would be misleading, if not impossible.
David is certainly unusual among those who share his diagnosis. Shortly after discovering he had Alzheimer's and announcing his disease to close friends, family and acquaintances, he launched Watching the Lights Go Out on Blogger.
"I'm a bit of an exhibitionist," David says, "so I like to talk about a lot of the things that are important to me and ... relate to my inner life in some way." By that, he means his relationships with family and friends, which he believes have grown stronger since his diagnosis.
A Japanese translation of Healing the Wounds. Image: Mashable
David is a writer by nature. He has published three books: two memoirs about his career in medicine — Not All of Us Are Saints and Healing the Wounds — and one academic book about the history of inner-city poverty, titled Urban Injustice: How Ghettos Happen.
All of David's published writing deals with subjects that are deeply personal to him. But his most "notorious" piece is an article he published in The New England Journal of Medicine, titled "Facing Our Mistakes." In it, he details an episode of his own malpractice. It motivated him to expand the discussion, to explore the human errors of doctors.
"I think because of the Alzheimer's, I've had a lot of trouble writing the last three to five years about the stuff that really interests me: social and economic and spiritual issues," he says. "I wasn't able to hold them all together as well. Writing about the Alzheimer's is much, much simpler. I can just kind of write it out — it's not a difficult thing."
In a recent post, David discusses the the difference between losing memories and losing one's self:
It's the sense of who I am that hasn't changed. It's as if my self looks out at all the cognitive limitations from behind a curtain, is aware of them, but doesn't have any sense that this "I" behind the curtain has changed. Here in the present moment, I seem no different than I ever was.
A friend of David's, a woman who suffers from debilitating migraines, had encouraged him to document his experience online after receiving his diagnosis. The same friend is now his editor.
Michaud believes Alzheimer's blogs can only be maintained with this kind of assistance. "When I read some of the [Alzheimer's] blogs, I'm a little skeptical that either they're not as far in the disease as we think they are, or someone is helping them," she says.
Photos of Marja's family in Finland. Image: Mashable
David met his wife Marja in high school, when she lived in the U.S. as a Finnish exchange student. In his medical profession, David was the family breadwinner, while she devoted herself to education, founding a program in Washington, D.C. for adults who had not finished high school, called Academy of Hope.
Also in D.C., David worked closely with homeless people at a residential healthcare facility called Christ House. In 1990, he founded Joseph's House, a care center for homeless people dying of AIDS.
"I've always felt myself to be on the border of Christianity," says David, who grew up in a Christian family and almost became a pastor, as his father had been. "In our church, belief isn't as important as behavior. Are you trying to identify with impoverished people? Are you active and participating in your community?"
Currently, he and Marja house an aspiring hip hop dancer named Dante — for free.
Providing for people who have less has remained an integral part of his life. Still, prior to his diagnosis, David still wondered what he'd do when he "grew up."
Marja attests to David's constantly buzzing mind. "David never settled down in his life. He was always searching for something else," she says. "He's done a lot of things, but he never really felt like it coalesced for him."
When I suggest to David that his blog is "helping people," he becomes noticeably frustrated, squinting and rubbing his head to work out a satisfactory explanation.
"I don't quite look upon what I'm doing as helping people," he says. "It's more about trying to live responsibly in an interconnected world."
Kris Bakowski, a 57-year-old Athens, Ga. resident, was diagnosed with early-onset Alzheimer's at the age of 46. She, too, blogs about Alzheimer's and has written about her experience online since 2003 — the same year Google bought Blogger. Kris's son helped set up her site, Creating Memories, so he and other members of Kris's close circle could keep up with her day-to-day activities.
Kris and her son, Alan, who helped her launch Creating Memories. Image: Kris Bakowski
Kris felt a responsibility toward other Alzheimer's sufferers: to change the conversation about the disease by putting a new face on it.
"I did not realize what a stigma there was about this disease," Kris tells me. "I'd known people who had this disease before, but I never really thought about it as anything other than a disease, until people started treating me differently. I knew I needed to educate people."
That goes for caretakers and recently-diagnosed patients, as well as medical professionals and even people whom the disease does not directly affect. Says David, "[Alzheimer's is] almost as hidden from doctors as it is from the normal public."
Like Kris, David believes correcting common misconceptions about dementia is an important part of his role as a blogger. He posts anecdotal material, such as meetings with his faith community, summaries of novels he's read about Alzheimer's and stories about other dementia patients he has met. Those live alongside deeply introspective discussions of Alzheimer's.
In the posts that directly address his condition, he discusses the paradox of trying to assimilate with people who do not suffer from dementia, compared with his need to be recognized and treated by doctors as a person with early-stage Alzheimer's.
Image: Mashable
David works on a '90s PC at a desk in his bedroom, which sits before a purple floral Marimekko tapestry — a souvenir from one of his and Marja's many trips to Finland. She has her own computer in their living room. During the day, they focus on their individual projects.
David spends a chunk of almost every weekday journaling, writing blog posts and responding to reader emails.
"My handwriting — I probably wouldn't recognize it myself a week later," he says.
Explaining her own process, Kris says, "I usually wake up in the middle of the night and think of things. I try to take notes. Sometimes it's very difficult for me to get the words down. I have them in my brain, but I can't get them out of my brain."
Other days, writing is simply too painful for her.
David is beginning to experience difficulty in his blogging. "I have to be very careful about my typing because I'm leaving out whole words or whole phrases," he says. "When I go over things, I have to read them out loud now."
Despite the many hurdles for people with dementia, studies on health and blogging show that online self-disclosure offers patients some serious benefits they might not find elsewhere. One of the biggest? Social support.
In "Communicating Social Support," Terrance L. Albrecht and Mara B. Adelman define the construct as "communication that serves to help manage uncertainty and increase perceptions of control regarding one's life" (Albrecht & Adelman, 1987a; Albrecht & Goldsmith, 2003). This is particularly important for Alzheimer's patients, who progressively begin to feel less in control of their minds and memories.
A study by Stephen A. Rains and David M. Keating titled "The Social Dimension of Blogging about Health: Health Blogging, Social Support, and Well-being" (2011) suggests blogs foster social support for patients, enhancing their existing close relationships and increasing their number of relationships overall.
"It does create a community of support," David says. "The fact that other people's experience mirrors mine is really quite reassuring."
He's received letters from caregivers, children of Alzheimer's patients or spouses. They talk about society's impression of the disease: "the kind of person wandering around without knowing what they're doing, or lying in a bed," says David.
"It's amazing, the number of emails that I get where people find themselves in the same situation that I was when I was first diagnosed, and they need help," Kris says. She explains that early-onset patients face a lot of problems older dementia sufferers don't — raising kids, having careers. A lot of these issues hadn't been discussed openly before she started blogging.
"Several people live within 20 to 30 miles from me," she says, "so we try to get together for coffee as often as we can and 'compare notes.'"
According to a 2008 Scientific American article, hospitals are increasingly hosting patient-authored blogs, as more studies endorse the activity's health benefits.
But Michaud isn't so sure technology applies so readily to cases of dementia. "You have to be able to use the computer," she says. And given the disease is more common in senior citizens, the likelihood that someone who is diagnosed with dementia would have the skills to blog is not great. She encourages her clients to seek out companionship in chat rooms and telephone support groups, or with close acquaintances on Skype.
"Early-stage dementia is always marching forward," she says. "You never know how long a person will be able to do something like a blog."
But she admits her skepticism is a response, in part, to her own unfamiliarity with certain sectors of the Internet — namely, blogging and social media.
"If it's a way of connecting to the outside world," Michaud says, "go for it."
Indeed, when I ask Kris what she's gotten out of her blogging, she says without hesitation, "Knowing I'm not alone."
David's still very early in his disease and wouldn't dare call Marja his caretaker yet. But that isn't to say he doesn't perceive his condition as serious:
A lot of doctors, when they see someone at my stage, are very reluctant to call it Alzheimer's ... It's much easier, I think, to know what you have so you can prepare for it, especially if you prepare your close circle of friends and acquaintances. If you don't let people know until late on, it's hard for people to relate to you ... I hope it's possible to prepare a family and good friends to be able to continue a relationship even when it's going to be a very, very, very different relationship from what it was before.
David and Marja are planning a canoe trip in Minnesota, near where they used to live. Their house is covered in images from their vacations — out west, where they used to hike — and those friends and family members have taken.
"I like to keep the world in my kitchen," Marja says of the postcards that wallpaper a nook in the Hilfikers' kitchen.
Image: Mashable
David is keeping busy in other ways, too — not only blogging but increasing Alzheimer's awareness in the medical field. He's talking to a professor at Georgetown about guest-lecturing or allowing medical students to shadow him for several years.
"Almost all the people you see as a physician are those people lying in hospital beds or drooling in a nursing home," he says. "And that's real ... but doctors ought to know there's a lot more to it ... We have to re-understand the disease and what it's about."
David says that patients spend the majority of the disease's course "participating in life." However, the progression of Alzheimer's forces them to rely not on their memories but living in the present. "Apparently, it can be a great life," he says, "so that's kind of reassuring."
But for individuals with Alzheimer's to have a high quality of life, they need social support. "While these blogs may only share the experience of a few individuals, their testaments are valuable," David says.
He's learned that much from his time working with underprivileged people. "Most middle-class and upper-class people don't know impoverished people personally, so there's a lot of myth about it," David says.
"One of the things I've learned is you have to listen to them … By and large, you have to believe people's stories."
Image: Mashable
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