Assisted living: A turning point for Alzheimer's family

• How to stop guilt from getting in the way of finding outside care
• Smaller world can provide comfort for people with dementia
• Start planning early for the costs of long-term care

Carol Blackwell says she's still at war with herself. She made the wrenching decision two months ago to move her husband into an to assisted living facility for people with Alzheimer's disease.

Her adult children supported the move, yet, her 37-year-old son, Rob Blackwell, says many days he and his mother still want to go get his dad and take him home.

This confusing, guilt-ridden stage of the Blackwell family's battle against incurable, mind-wasting disease is one that millions of other caregivers are going to face, says Sandy Markwood, chief executive officer of the National Association of Area Agencies on Aging.

"Families need to know it's OK to make this decision,'' says Markwood. "Everyone wants to age at home, but it comes to a point when it's no longer possible and it's necessary, as hard as it is, to make that move to the next level of care."

Bob Blackwell was diagnosed six years ago at age 64; he was recently retired from the CIA, where he was an analyst for 30 years on the Soviet Union and Europe. He is among more than 5 million people struggling with the disease, and numbers are expected to triple by 2050 as the Baby Boomers age. His grandmother and mother also had dementia. Current drugs treat symptoms but are only mildly effective. Researchers at this week's American Neurological Association meeting in Boston will discuss upcoming drug trials designed to delay the onset of the disease. The government announced a bold goal last year to find a way to prevent Alzheimer's by 2025.

"Doctors would tell us a cure would come soon,'' says Carol Blackwell. "I signed up Bob for several trials, and we were confident we'd never see the day when we'd have to move him into assisted living."

She continues to live in their Great Falls, Va., home, a mile-drive to the secure facility where he lives. Locked doors to the outside world are important for Alzheimer's patients. The tipping point for moving him there? Carol returned inside after gardening in their backyard this summer and couldn't find him. She jumped in the car and spotted him running down a neighborhood street. She coaxed him to get into the car.

"I knew then we had to make a change,'' says Carol. "It was really frightening. It could have been much worse."

She was taking care of him 24-7, Rob says. Bob wandered around the house at night when Carol was trying to sleep. He also was unhappy at home, says Rob: "The world there seemed to be too large for him. He'd get lost in it. He would call me and talk about this woman in the house he didn't know. He didn't know my mom anymore."

She visits him daily, walks with him and reads him the paper. "He always introduces me now as his wife," she says."They told me he'd be more relaxed there, and I believe that he is. We get along better now."

When caregivers no longer have to make a spouse shower or groom themselves, they can enjoy each other again, says Markwood. "You no longer are that mean person making them do things they don't want to do.''

She advises families to visit the facilities before selecting one and to prepare for the cost by taking out long-term care insurance. "Medicare doesn't pay for this type of care, and many people assume that it does,'' she says.

Carol and Rob moved Bob on Aug. 1. Rob says his father had been "nonsensical" most days. But on Aug. 1 he took notice of his new surroundings and asked them where he was.

"It's the most lucid I've seen him in a long time,'' says Rob. "We told him he was going to have to stay for a couple days to have his medicine checked. He said, 'You can't kid a kidder. I knew this day was coming but I didn't expect it so soon.'"

Rob and his mother didn't know what to do. His mother left the room, tried to stay calm and not alarm Bob.

"I asked him if he was OK, and he said he didn't oppose the move,'' says Rob. "He didn't say all those things you're afraid they're going to say. He loves my mom so much I think he knows the toll he's taken on her. He was trying to make it easier on us."