By Mary Brophy Marcus, USA TODAY

McLEAN, Va. — Bob Blackwell and his wife, Carol, settle comfortably in for tea and cookies at a Barnes & Noble cafe.

 

They're the kind of couple you'd like to have as your grandparents: kind, caring and generous. But on this mid-March afternoon, they're a bit weary, too. They've just come off a busy week in Washington, D.C., advocating for Alzheimer's disease, a memory-destroying condition that Bob was diagnosed with in 2006 at age 64 — a decade or more earlier than most who develop the illness.

 

VIDEO SERIES: What you should know about the disease

LIVING WITH ALZHEIMER'S Read the Blackwells' blog

STAGE BY STAGE: What Alzheimer's caregivers can expect

 

USA TODAY has been following the Blackwells' journey with Alzheimer's for almost two years, and the two of them have been blogging about it as well.

Their whirlwind week included a march up the Capitol steps to visit with politicians in an effort to raise awareness and money for research; meetings with fellow members of the Alzheimer's Association early-stage advisory committee; a candlelight vigil; and the association's annual gala.

"We sat down with Rep. Frank Wolfe (D-Va.) and Sen. Mark Warner's (D-Va.) staff in their office and talked for a long time, maybe 30 minutes," Bob says.

Every family is different

Alzheimer's, which is classified into three stages — early, middle and late — takes no single pathway in all patients, but the average life span of a person after diagnosis is about seven years, says Alzheimer's expert Murali Doraiswamy, professor of psychiatry at Duke University Medical Center. By the end, the brain shuts down, leaving the patient unable to eat or breathe.

For the nearly 11 million family members and friends who, according to the Alzheimer's Association, now care for a loved one with the disease, coping with a diagnosis differs greatly from family to family as the disease progresses, says Beth Kallmyer, senior director of constituent services for the Alzheimer's Association in Chicago.

"The reality is it's different for everybody. The way it impacts caregivers depends on the relationship they had with that person before," says Kallmyer, who adds that the non-linear progression of the disease is most challenging.

Carol says that at first the diagnosis was shocking and confusing. It changed how she perceived her husband. "He had this A on his forehead. But day by day I realized Bob wasn't suddenly some alien. He's still making decisions."

Now, she says, she prefers to focus on the present. "Our life has gone on pretty much the same. We work in the yard, we have pleasant conversations, we laugh together."

And indeed, Bob is trim and continues to exercise, attend classes and meet friends for breakfast. He and Carol flew to Russia this past year, a country Bob specialized in during his long career at the CIA.

His favorite hobby, nature photography, has blossomed, too. This month, he'll be selling his photos at a local arts and crafts show, he says.

Making adjustments 

But as time passes, the two have had to make some small adjustments. Bob has had more trouble finding the words he wants to say than he did two years ago.

When talking about one of his favorite television shows, 24, for example, he has more difficulty remembering names of characters, so he tends to refer to them as "he" or "she." In conversation, spontaneous hand gestures of a companion may surprise him.

Carol says he became confused driving to a class recently. "He got turned around and couldn't find the street he needed. He was able to find his way home, but now I take him to that particular course. He is able to easily manage the other two in the area." They've also put up a white board to remind him of the daily schedule.

Filling in the gaps 

And there's something increasingly symbiotic about their relationship. When asked a question the answer to which he struggles to recall, he turns more often than in the past to Carol, who fills in the gaps.

But he's still happy to do his own thing when Carol is at work. Recently, when she left town for an aunt's funeral, Bob fixed his own meals. "I just had to call to remind him to take his medicine," she says.

For caretakers living with those in later stages of the disease, the challenges can be greater.

"As a person moves into the middle stage, they may need help with shaving, personal care. A family member may need to lay their clothes out," Kallmyer says.

Kathy Hatfield, 40, lives outside Winston-Salem, N.C., and cares for her father, Lyman, 81. She says humor and patience help her navigate the ups and downs of living with a dad who has had Alzheimer's for 11 years. For example, because incontinence is a growing problem, she gets him to use the bathroom regularly by telling him they're going on a long car trip. That always motivates him to "make a pit stop."

ON THE WEB: Kathy Hatfield blogs about living with Dad

 

"By the time he's gone to the bathroom, he's forgotten that I told him we're going on a trip," she says, laughing.

Hatfield, who also blogs about her life with Alzheimer's, says she was not close to her New York stockbroker father as a child, but now, despite the hard times, she cherishes their relationship.

Her father, she says, is "the sweetest man on Earth."

Doraiswamy says caretakers (a label Carol prefers not to use for herself) should lean on the help of friends, family and health professionals and be alert to when it's time to provide extra care and safety measures for a loved one.

"There's usually a sentinel event in every family's life," Doraiswamy says.

The unanticipated incident is slightly different for each family but often takes the form of the patient getting completely lost in the neighborhood, he says.

Carol is not going to let it get her down.

"The patient can't choose whether or not they get the disease, but the caregiver can choose his or her attitude. I truly do believe that. Everyone has some 'down' times, but if you let the down times in too frequently, then Alzheimer's wins."