January 23, 2012, 1:51 pm
The Alzheimer’s Reading RoomBy JANE GROSS
In mid-January, Bob DeMarco, 61, left his 96-year-old mother’s side for the first time in eight years to go to a conference about Alzheimer’s disease just a few hours from the home they share in Delray Beach, Fla. He made elaborate plans for his time away, arranging for his mother, Dotty, who has advanced Alzheimer’s, to stay with nearby friends; getting his first cellphone lest there be an emergency; and bit by bit, day after day, “reminding” her of his coming departure.
In his popular blog the Alzheimer’s Reading Room, Mr. DeMarco rhetorically asked his 7,600 subscribers and 50,000 unique monthly users: “Can Dotty make it for two days without me? Can I make it for two days without her?” The answer to both questions is clearly “yes,’’ though my hunch is it was much harder for Mr. DeMarco, who called six times to check up on her; his mother showed flashes of anger at his return and then quickly settled back into the life that he has meticulously set up for them.
That life is a construction by trial and error, as Mr. DeMarco figures out how to keep Dotty – who is well known to fans of the posts through YouTube videos, podcasts, slide shows and other personal tidbits Mr. DeMarco puts up on his site — happy and healthy, then figures it out again as her condition inexorably worsens.
“I never read any of the books,” Mr. DeMarco said. “I just turned off the Bob DeMarco-businessman-decision-maker thing and enveloped myself in Alzheimer’s World.” He watched the “patterns” of what made Dotty calm and agreeable rather than agitated and negative. She was his “laboratory.” “Something has to change, and that something was me,’’ Mr. DeMarco said, and so he “rewired his brain” to match hers.
Over these many years of 24/7 care, he has figured out that both Dotty’s emotional state and her physical condition improve with lots of bright light, whether through their big kitchen window or outside; exercise as a member of a Silver Sneakers group at the local gym; daily monitoring of her vital signs to stay ahead of common ailments like urinary tract infections or pneumonia so they don’t require hospitalization; monthly B-12 shots; and stimulation, stimulation, stimulation.
Dotty’s activities, under her son’s ever-evolving regime, include noting the day and date from each morning’s newspaper; discussing developments in the world even when those chats are more monologue than dialogue; crossword puzzles where she can still manage three-letter words; music and art; videos like “Shrek’’ and ‘”Mamma Mia”; and excursions, whether to Walmart, where Dotty likes riding the motorized cart amid bright fluorescence and noisy crowds, or the New Year’s Eve fireworks in downtown Delray Beach. Perhaps his most creative discovery, in Amazon’s toy section, was a pair of plush parrots — one that requires two AA batteries and a nine-volt, and a newer model that works on four AAs. Harvey came first, followed by Pete. Both talk nonstop, telling Dotty to drink her prune juice and singing along with her to “Shine On, Harvest Moon.’’
This utter attention to his mother’s needs was Mr. DeMarco’s mission long before he ever thought about a blog, now benchmarked No. 1 in its category by Google, Mr. DeMarco said, and the subject of takeover bids by content companies eager, he said, to buy his “brand.” He had helped his mother years before, together caring for his father through the last hard months of cancer, after the older couple had retired to Florida from South Philadelphia. Then Mr. DeMarco returned to wife and Wall Street job, as an institutional salesman of derivatives, futures, options and mortgages.
A divorce and time as chief executive of a small software company in Reston, Va., followed, but Mr. DeMarco said he always knew he would drop it all to care for his mother when the time came. It did after one of her summer visits north. The year before she had been able to walk three miles; now she could barely shuffle a city block. Her cheery personality had become negative. “Everyone said she was just getting old,” Mr. DeMarco said. He was sure the change was more momentous. “I dropped out of the world from one day to the next,” he said of his sudden move to live with her in Florida. “But I’d made the decision many years in advance.”
(Mr. DeMarco has two siblings, considerably older: a 68-year-old sister in Northern New Jersey who has two children and two grandchildren, and a 71-year-old brother in the Philadelphia suburbs with one child. His sister spends a lot of time on the phone with both him and his mother and sends gifts like pretty pajamas, Mr. DeMarco said; his brother is involved “not much at all.’’ He does not elaborate or complain.)
The blog started more by accident than by design; odd jottings on things he had learned about Alzheimer’s disease. Mr. DeMarco, who holds degrees in economics and risk management, is not a journalist. In Journalism 101, at Penn State, he got a C, he said. The blog has no editor or designer. It is plain-spoken and plain-looking, and has gradually gone from 300-odd posts in 2008 to 1,000 last year. Mr. DeMarco wrote two-thirds of the 3,200 posts; the others come from researchers, geriatric professionals and readers he has come to know. The posts cover topics like research, treatments and challenging behaviors like wandering or repetitive questioning, as well as matters of personal hygiene and other daily care, like showering and diet. Usually Dotty’s day prompts the commentary, but not always. Now, Mr. DeMarco said, he spends five hours a day on the blog, and corresponds by e-mail with thousands of readers.
Mr. DeMarco said he is so far unmoved by offers to buy him out. But he knows what he would do with the blog if he had the resources of a company with deep pockets: Find researchers, doctors, nurses and other professionals to post content on a regular schedule. Market products to the blog’s readers — say, the parrot toy — with a markup. Hire an advertising agency to sell space on the pages. Improve the design and organization.
As sole proprietor of his blog and sole caregiver for Dotty, Mr. DeMarco doesn’t have what most of us would describe as a life. He says he has no friends, and doesn’t go to the movies or out for a meal except with his mother. His situation also doesn’t lend itself to romance. When one lady friend asked how long he intended to live this way, Mr. DeMarco said he responded, “at least one more day.” He occasionally thinks about “someday when this is over’’ but says he isn’t yearning for anything more than or different from what he has.
“I’m never alone, and I’m never lonely,” he said. “And it goes way beyond my mother. It’s people all over the world. Would I do it again? Yes. I have no moments of regret.”