Support group helps with stigma of Alzheimer’s

Kathy Ayers reads a story to a group of Alzheimer’s patients and their caregivers on June 8 in Portland. (Associated Press)

PORTLAND – They used to call themselves I Forget, they joked. Until a few forgot the name, and they quickly scrapped it for the Wild Bunch.

The group of Alzheimer’s patients and their caregivers love to carry on like teenagers at their monthly potlucks, chuckling at the ironies of memory loss, losing track of how many glasses of wine they’ve had amid the laughs.

“If we can talk about it and laugh about forgetfulness, it tends to lighten the load,” said Dave Caswell, a resident of the Oak Hills neighborhood north of Beaverton who started the social group of 12 people.

They’ve banded together over the past two years against a brain disease that has no cure, only treatments that delay its worsening. A social taboo also lingers. The fear of growing old and “going crazy” keeps people from asking for help and contributes to feelings of isolation.

Social meet-ups, such as the Wild Bunch and a monthly Alzheimer’s Cafe in Beaverton, have become crucial to overcoming the stigma and loneliness of Alzheimer’s disease.

Oregon’s first statewide plan for Alzheimer’s disease, recently released, underscored the need for increased public awareness. The report called for more partnerships with advocacy groups, more training for medical and social service professionals, and a central website about the disease and related dementias.

About 76,000 Oregonians have Alzheimer’s, and more than 165,000 people are unpaid caregivers – often a spouse, relative or close friend – who report high emotional and physical stress.

People often don’t know the difference between signs of normal aging – such as occasionally forgetting your keys – and Alzheimer’s disease. That feeds into a public fear similar to that surrounding cancer two decades ago, said Kristrun Grondal, the Oregon program director for the Alzheimer’s Association.

“There’s a need for caregivers and people with the disease to have a place to go to socialize, to learn, to interact, to prevent some of that isolation and minimize some of that stress often for people with this disease,” Grondal said. “We’re very glad that people are taking some action and building some services to meet this need.”

Lifelong friends Kappy Lundy, 71, and Barbara Thompson, 67, found support from other couples in their social group, the Wild Bunch. After being married to the same man, their friendship grew stronger. Lundy stepped in as caregiver to Thompson, who has mild cognitive impairment.

The Wild Bunch began as a motley group of strangers. During an eight-month series on memory loss, five married couples and two women who stayed good friends after being married to the same man shared some of the most intimate experiences of their lives. When the class ended, they weren’t about to let that go.

“My wife and I were on our way home from that meeting, and we said, no, this can’t be,” said Caswell, 78. “We’ve really grown to love these people and care for each other. Let’s invite them all over to our house in Beaverton for a potluck.”

Dinner parties became a respite from loneliness. Frank discussions over home-cooked chicken soothed daily frustrations. Giving up driving. Handing over cellphones. Running into the despair that the disease is only getting worse.

After his wife, Hallie, was diagnosed with Alzheimer’s, Dave Caswell recognized that he had to separate the disease from the woman he fell in love with, the enthusiastic horseback rider, the mother of their four children.

“We’re in this together,” Caswell said. “Don’t get mad at the person. Get mad at the disease. Don’t get frustrated with your wife. Get frustrated with the doggone disease that she’s got, that she didn’t volunteer for.”

They have their moments. She once broke down in sobs at Trader Joe’s. He pays the bills, cooks, drives, does the laundry, loads the dishwasher. Not that he didn’t do those before – there’s just nobody now to help him.

Hallie Caswell, 75, knows it’s hard on her husband. “It’s not guilt, because I’m not trying to do it,” she said. “I just feel sad. Real sad.”

She wouldn’t know what she’d do, she said, if the Wild Bunch broke up.

The Wild Bunch stand by an unwritten pact. Help, whenever needed, is just a phone call away. Calls have led to meals for the sick, rides for Alzheimer’s patients who gave up their driver’s license and many a coffee chat. They hope others will find their own niche of companionship.

“We, as a group, really clicked,” said Milton Amaral, a Lake Oswego caregiver who looks after his wife, Meme, who has Alzheimer’s. “We’ve just been doing that, sharing joys and heartaches.”

In Beaverton, a free monthly Alzheimer’s Cafe held in Southminster Presbyterian Church lifts the pressure off burdened caregivers.

Kathy Ayers, a social worker for LifeWorks NW, and Suzanne Van Slyke, a nurse, modeled the first Alzheimer’s Cafe in Oregon after a similar concept popular in the Netherlands.

Anyone can attend the meetings. Social mingling is followed by a short presentation from an expert, such as a representative for an assisted living community or a lawyer specializing in elder care.

“There’s really not a lot of rules,” Ayers said. “It’s just an opportunity to ask questions and get answers. So if we see things that need help, we can give referrals.”

Warren Aney, 76, of Metzger, showed up to stay abreast of the disease that has affected his wife, Joyce.

Aney, a former state wildlife biologist with a love of science, resolved that his wife’s disease would not stop their adventures. They’ve been a team for 52 years, traveling to Tahiti and Bora Bora.

The days are simpler now for the Aneys: eating, sleeping and going to aquatics class. “We’re not able to engage in deep conversations anymore,” Aney said. He paused, his voice labored. “Which … I miss … of course.”

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