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The Toughest Decision: When a Caregiver Can No Longer Cope

A caregiver's story

Even by the standards of Wyoming coal mines and oil fields, Mike Eberspecher is a tough guy. He once nearly lost an arm to blood poisoning after getting another man's tooth lodged in his fist. A big chunk of his right ear had to be surgically reattached after a different guy tried to bite it off. He used to bet newcomers to the oil fields that he could lift the drill pipes sticking out of the wells. Anyone who doubted him was soon out some cash.

Now 66, Mike is still built like a coal truck. His graying hair cut short, his mustache neatly trimmed, he seems ready to take on the next gushing well or troublemaker. But spend time with him, and you quickly learn that he's no longer attached to this world. He'll tell you that chunks of crumbled asphalt in a parking lot are actually antelope droppings (not an uncommon sight around his hometown of Douglas), he'll insist that somebody's walking through an empty room, and he'll claim that his old high school friends are plotting to steal his nonexistent gold. But he has moments of insight, too. "I have Alzheimer's," he'll say apologetically. "It's a real bummer."

For the last few years, it's been Carolyn Eberspecher's turn to be the tough one. As Mike's disease worsened, Carolyn, 60, joined the ranks of the 10 million Americans caring for a family member with Alzheimer's or other forms of dementia. Caregiving means one hard decision after another. When do you take away the car keys? When do you stop leaving them by themselves? When do you let go?

The toughest call

As the snow around Douglas started to melt last spring, Carolyn made the toughest call yet: It was time to put her husband of 35 years in a 24-hour-care facility. "I just hope he doesn't hate me for this," she said before the move. "He always provided such a great life for us. I can't imagine what it will be like to drive away and leave him behind."

Alzheimer's disease sends personalities careening in strange directions. Mousy people can become boisterous; Mike went the opposite direction. The back-slapping thrill-seeker became gentle and soft-spoken. He started watching TV for hours on end, an activity that the old Mike — the ace waterskier and recreational pilot — would never have tolerated. Until recently, he could switch between Fox News and Westerns by pushing a single button on the remote. But as his Alzheimer's worsened, that button became hard to find. Eventually, he lost it completely.

For the first time in their marriage, Carolyn found little comfort in having him around. "You want to think that person who used to be so unbelievably strong and smart is still there, but he's not," she said.

Before long, Mike became perplexed by his underpants. He couldn't put them on without getting all twisted up. He did manage to put on a pair of button-fly jeans one morning — completely backward, which isn't easy. That's the frustrating, exhausting thing about Alzheimer's. Even simple things are no longer so simple. He even lost his ability to stay put. One cold morning, Mike wandered out of the house without a jacket and started shuffling toward town. He made it about a mile before someone picked him up and brought him home. After that, the local police fitted him with a tracking bracelet.

All alone

Carolyn can help Mike put on his pants. And she can push the button on the remote. Or find the light in the bathroom. But doing all of those things every day, well, that's rough duty.

As Mike's condition worsened, she shut down her travel agency office and started working from home. Even though she could see her daughter's house from her driveway, Carolyn had to do almost all of the caregiving herself. Mike and Carolyn's two sons — Kelly, a patent attorney and former Navy SEAL living in Chicago, and Clint, who works odd jobs in Casper, Wyo., to support his hobby of full-contact cage fighting — weren't around much. A friend did come by every Sunday to take Mike to the Mormon church, and another friend would regularly take him to the local truck stop for cinnamon rolls.

But Carolyn didn't get real relief until she enrolled Mike in an adult day care program. For six hours a day at a cost of $2 an hour — a half-off discount because Carolyn wasn't fully employed — Mike could chat with the nurses and watch bingo games. Carolyn used the time to run errands, have lunch with friends and, eventually, take a part-time job as a hospital receptionist.

But you can only pack in so much living into six hours a day. Carolyn couldn't watch Mike constantly the remaining 18 hours, and she couldn't leave him by himself. The wandering, the dressing, the conversations that went nowhere: It was all too much. Even with the help of day care, Carolyn felt like she was having rolling nervous breakdowns. "If I don't have some time to myself, I'm going to be as goofy as he is," she said.

When she heard that the Douglas Care Center would start offering 24-hour care for Alzheimer's patients, she decided it was time for Mike to move in — another thing that the "old Mike" wouldn't have tolerated. "When he was diagnosed [in 2005], he said he'd rather be put down than end up in a nursing home," she said. She tried telling Mike about the plan, but it didn't really sink in. Her close friends supported her decision, but her kids wondered why she was in such a rush. Carolyn asked herself a thousand times if she was doing the right thing. "This is tearing me apart," she said as Mike sat on the living room couch, his hands behind his head and his eyes pointed toward the wall.

A final visit

Shortly before Mike entered the care center, Carolyn took him to the Moose lodge for Thursday-night hamburgers, a weekly tradition going back 17 years. He smiled as old friends came up to greet him. "How are you doing?" he'd say, not calling anyone by name. "Socializing is the only skill he has left," Carolyn explained later. "Seeing people that he knows is really the only thing that he can enjoy." Mike mostly kept quiet as he ate his hamburger, but he did get up a couple of times to wander around the lodge, as if checking it out for the last time.

In late April, Mike finally shuffled through the front door of the care facility, his nervous wife and children accompanying him. "Everyone was on edge, trying to make conversation and keep things light," Carolyn said. As they walked down the hallway, it seemed like Mike was about to cry — which would have been Carolyn's cue to completely lose it. "But he recovered pretty well," Carolyn said. "That's just a testament to his strength." A couple of staff members soon asked Mike to help move some furniture, and Carolyn saw her chance to leave. "Coming home to a house without him was so different," she recalled a few days later. "Everything in my life will be different."

After a solid night's sleep, Carolyn returned to the care center, fearing the worst. "I worried that all hell would break lose," she said. But she didn't see rattled staff members or turned-over furniture. A nurse told her that Mike had wandered the halls at night, complaining that his little girl was kicking his back as he tried to sleep. But he wasn't angry. Carolyn saw him sitting at a table with five other residents. He was working on a big piece of chocolate cake. "He seemed more interested in getting that cake eaten than in talking to me," she said. And when she got up to leave, he didn't try to go with her.

Chris Woolston is a freelance health writer whose work has appeared in the Los Angeles Times and Reader's Digest.

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