ENCINITAS: Group supports people with Alzheimer's patients

By RUTH MARVIN WEBSTER - Staff Writer | Sunday, August 24, 2008 4:14 PM PDT ∞

ENCINITAS ---- Sometimes there is great comfort in sharing a simple, little story. Especially when both the teller and the listener are caring for a parent with Alzheimer's disease.

"Before my mom had a stroke, she did a lot of hallucinating," Carlsbad resident Lynne Smith, 55, told a support group for adult children of an Alzheimer's patients at the Glenner Center in Encinitas last week. "She'd call me at 6 in the morning to tell me that her mom and sister had come by for a visit, but that they had left when she had gone to the bathroom."

But what really worried her mother, Smith said, was that if the two women ---- both of whom had been dead for nearly 50 years ---- came back later that afternoon, they wouldn't be able to get back into the house.

"I told her it was OK, I had left a key for them under the mat," Smith said. "Sometimes you can't argue with them, so you just go with it."

Smith, who started the support group only last month, is one of 9 million people in this country who care for someone with Alzheimer's or another form of dementia.

An only child, she cares for her parents, both of whom have Alzheimer's and live in Lincoln, Neb., even though her home is in Carlsbad.

She said that she started the support group less than a month ago because the issues that children face when their parents are diagnosed with Alzheimer's are different than with spouses or other caregivers.

"When you're a wife and you have to clean up your husband, that is one thing," said Sheila Meyer, a facilitator for the Tuesday group and program director at the Glenner Center. "But I may not have been able to do that for my dad if he had lingered. The only part of my dad I ever saw was his hands and his head."

Meyer added that she had heard the term was 'therapeutic fibbing' for when caregivers lie or distort the truth to avoid making someone with Alzheimer's agitated or more confused .

Rancho Santa Fe resident Jamie MacEwing, who cares for her elderly mother with Alzheimer's, smiled with understanding when she heard the new phrase for a white lie.

"At first, in order to get my mom to come to the day care here, I'd say we were going to the senior club because I didn't want to say it's an Alzheimer's facility," MacEwing said.

While people often debate when it might be acceptable to tell a white lie to an Alzheimer's patient, caregivers like these said they have learned many practical ways to cope with the challenges of their situation from others in support groups.

Trained facilitators, like Meyer, attend each of the weekly support groups at the Glenner Center, offering up-to-date information about the disease, treatment and community resources. Members of the group also exchange ideas on how to handle a loved one's changes in behavior and tips on how to deal with their often similar issues.

Smith said people who attend their first support group will often pull out a notepad to jot down a few notes about insurance coverage, new medications and clinical trials.

"And that's great if that helps, but sometimes they don't get the seriousness," she said. "The road ahead is more than a few tips."

Conversation drifted Tuesday to how newcomers sometimes react when they first set foot in an Alzheimer's care facility.

Meyer described seeing one woman throwing up her hands "like she had seen a ghost" and pushing her elderly relative in a wheelchair down the corridor as if in a cartoon.

"It was hard when I first saw a woman who they had to put her pants on backward for, because otherwise she would take them off," recalled MacEwing. "People want to look the other way and close the shutters. It's almost like you're afraid you'll catch it."

"It is almost a kind of leprosy," said Lake San Marcos resident Doug Hayen, who is in the early stages of Alzheimer's and attended the support group with his daughter Jenni Gaford, who lives in Carlsbad.

Hayen, a retired doctor, chronicles his experiences with Alzheimer's on his Web site at www.thetripover.com. He has also appeared on television shows and documentaries in order to shed light on the disease.

"When I heard the word 'Alzheimer's,' I imagined the worse-case scenario that I'd ever seen, laying in the fetal position for two years," he said. "(Sometimes) I think the best thing would have been for me to have a heart attack and get out of the way, so I'm not a burden to my family."

Tears welled up in Hayen's daughter's eyes.

"When I was growing up and I needed him, my father's answer was always the same — 'I'll be right there,'" Gaford said. "And so, this is the time when I can be there for him."

Gaford said support groups have been a lifesaver for her and so many others.

"The beautiful part of a support group is that with all those speed bumps in the road of Alzheimer's, I get the kind of support from people who are walking though the same events and emotional struggles as I am," she said, "And I think I can help them too."

Contact staff writer Ruth Marvin Webster at (760) 901-4074 or rwebster@nctimes.com.