After gentle coaxing, Virginia Stephens begins to tell her story to the group, just as she did two weeks ago. She starts to explain how she knew it was time to quit driving, but when she stumbles on the details, she looks at her husband to finish the tale. And so Gene Stephens proceeds to explain again how he knew his wife was having trouble remembering directions.
“Marilyn told me,” he says.
“Marilyn told you?” Virginia asks.
“Yes she did.”
“Well, I’ll be darned.”
Virginia turns to the social worker facilitating the group. “Every so often I get to learn new little tidbits like that,” she says, eliciting the intended laugh from the rest of the circle — members of a support group for those living with the early stages of Alzheimer’s disease.
After living for more than 2 1/2 years with Alzheimer’s, Virginia’s life is a storybook to her, one that often must be recited by others.
“She has a pretty good long-term memory,” Gene says. “Her short-term memory is —”
“Short,” Virginia says with a laugh. Gene laughs, too, running his thumbs under his green suspenders.
Virginia forgets things such as what she ate for lunch, exactly how Alzheimer’s is affecting her brain and how many children she and her husband have. But she remembers what has helped her cope with the disease — her humor, her friends and her husband — and she tries to pass those lessons on to others.
The Stephens moved to Columbia last November from Topeka, Kan., to be close to her daughter and his son and to Columbia’s wealth of medical expertise. Both on their second marriage, Virginia and Gene met through a church group and have been married for 25 years.
The silver-framed wedding picture that sits in their kitchen shows a young couple standing tall and proud — quite different from the pair today, Gene with his white hair and Virginia handicapped not only by a fading memory but also by vascular dementia, another neurological condition that limits her body’s function and keeps her in a wheelchair. But Gene says the reason behind the photo — their marriage — has not changed at all.
In an almost complete role reversal, Gene now does all the housework, shopping and cooking. He pays the bills and attends to Virginia.
“I don’t do a very good job of brushing her hair,” Gene says.
“Oh, you do fine,” Virginia shushes him.
“She tells me I make her look like Ish Kabibble,” Gene says, referring to a comedian that he says had Beatles-style hair before the Beatles made it popular.
The majority of Virginia’s challenges are physical. Although she is still able to get ready by herself in the morning, she sometimes asks for help. Gene says that as a team, they are able to solve most of the problems that Alzheimer’s creates, but not all of them. “I can still remember most things for her,” Gene says, but he can’t walk for her.
His greatest concern is that something would happen to him and he wouldn’t be able to care for his wife.
A retired pharmacist, Gene has a familiarity with the Latin phrases and brand names associated with her disease, and Virginia relies on him not only for moral support and daily needs but also to make sense of what’s happening to her.
Her watery blue eyes patiently watch him as he explains again how she was diagnosed the day before her 74th birthday and how they approach treatment. Gene says many doctors are hesitant to diagnose an incurable disease, and even when they do, diagnosis is often elusive because of patient denial and the many variables of memory loss.
“Alzheimer’s is generally a diagnosis of exclusion,” Gene says, meaning it’s what’s left when everything else has been ruled out. It also comes in a variety of forms, he says. “There’s no cure for it, but the earlier the diagnosis is made and the treatment is started — the better the course.”
Until the current decade, there was no treatment, and Alzheimer’s was pretty much a life sentence, Gene says. But now there is medication to slow the progression, and there is hope. Most people diagnosed in their 70s die of some other cause, he says.
Virginia takes pills five times a day and has a physical therapist work with her at home to increase her physical abilities. Instead of traveling —one of their former favorite pastimes — they now opt for nice dinners and spending time with family. Upon their move, they downsized their house,
dividing many of their possessions among their seven children — a process that they say was difficult but helpful now that they have less to worry about. But they both think some of their best treatment comes from the Eldercare program Virginia visits three days a week, as well as the weekly support group for people in their condition.
“I look forward to it, and I think he does, too — and he’s not even sick,” Virginia says with a smile.
Having been active in a group in Topeka, the Stephens sought out the same support here, lobbying the Columbia group, which had been meeting in four- or five-week intervals, to increase its continuity and broaden its scope to include patients as well as caregivers, says group facilitator Nonni Pyle.
“I believe in the proper medical treatment, but I also believe in the ability to help yourself and help others with social contact,” Gene says. “They say misery loves company, but I think misery loves understanding.”
Gene and Virginia both say the group has helped by allowing them to discuss what they’re going through without fear of embarrassment. Everyone is in the same boat, they say, and you can just be yourself.
And that’s why the Stephens have lobbied in Washington, D.C., for Alzheimer’s awareness and government support, and it’s why they eagerly share their story with anyone who wants to listen.
“The biggest issue for us is educating people on what Alzheimer’s is,” Gene says, “It’s not a social disease —”
“It’s not contagious, so you can come see us,” Virginia jumps in.
“It’s a disease that a lot of people deny they have —” Gene continues.
“Well, it’s scary,” Virginia interrupts.
“Well, it is scary, but it’s something that you learn is not the end.”
“You wake up the next morning and realize that you feel the same as you did before,” Virginia explains.
“You can learn to accept it and live with it,” he says.
“It’s not the end of the world for anyone with Alzheimer’s,” Virginia says. “They’ve got a lot left to do.”