Joanne Koenig Coste often tells the story of the day her husband, Charles, who was diagnosed with Alzheimer's at the age of 46, scrubbed meticulously for two hours until he had removed all the Teflon from one of her pans. Instead of rebuking or correcting him when he waved the pan in the air like a trophy at the end of his self-appointed chore, she told him that was the best scrubbing job she had ever seen. The couple's children -- all under 13 years old -- cheered as well.
Was that disrespectful? Koenig Coste doesn't think so. In fact, she wishes she had learned to respond to him that way sooner. "On a very practical level, I definitely wish I had known that it's OK to lie to the person with Alzheimer's if lying is going to put you both in a better place," she says. In that situation, it was well worth being less than honest to boost Charles Koenig's self-esteem and lessen his feelings of helplessness. The next day, she says, he was still smiling even though he probably didn't remember why.
The former chairperson of the nation's first chapter of the Alzheimer's Association -- whose book, Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease , is still considered a groundbreaking approach to the disease -- Koenig Coste maintains that caregivers need to give up their hang-ups about lying. This is partly because speaking the disease requires reading the affected person's emotions and entering his reality, not expecting him to understand ours.
"The other night when I was speaking in Connecticut," Koenig Coste says, "a woman asked, 'How can I not tell my mother that her mother's dead? I can't do that to her.'" She replied that the woman could answer her mother's daily question by telling her that her mother is dead and living with her mother's sobs and screams. Or, Koenig Coste says, she could reply, "'Oh, I'd love to see her too. She's going to be here in about an hour. Let's have a cup of coffee while we're waiting for her.' Anything to just get through the angst. The problem is the emotion, not what the person is saying. When I say, 'I want to see my mother,' what am I saying? I'm saying, 'I don't feel very safe.'"
Certainly, if the person asks the question over and over, this could mean a lot of lying, but Alzheimer's changes all the rules, Koenig Coste says. For example, one of the most common remarks from Alzheimer's patients is, "I want to go home," even if they're in their own home.
"I can remember hearing nurse's aids on an Alzheimer's floor saying to patients, 'This is your home now.' Well, it's not if you're the Alzheimer's person. And then the patients get aggravated and agitated, and we give them medication to calm them down, when what we needed to do was give them a little 'fib-let': 'It's raining and freezing outside. Why don't we go tomorrow instead? Let's have some chocolate.'
"The secret is to focus on one thing at a time," she adds. "That's all an Alzheimer's person can do. So if I'm focusing on chocolate and a cup of coffee, I'm not thinking about going home. The other memory is gone. Will it come back? Sure, it could. And what does the caregiver do? You do the whole thing again. And when you see that the person is feeling good, how could you possibly feel guilty?"