James' World 2

Cathy is a woman in her late sixties, with a warm, tremulous voice. For six years, she had been taking care of her husband, Frank, who has Alzheimer’s. Recently, she had begun to berate herself for not being “cut from the same cloth as Mother Teresa”.

“You should know, I’m not a saint,” she said the first time we met. 

I assured her I didn’t know any caregivers who were, nor did I expect to meet any.

“That’s good,” she said.

“The thing is,” she said, “every day with Frank is the same. He gets up, eats breakfast, reads the paper and naps. In the afternoon he grabs the remote, plants himself in his favorite chair, and turns on a game. If it isn’t the Mets, it’s the Jets. If it isn’t the Jets, it’s the Rangers or the Knicks or the Giants. And he’s not a passive spectator. Not Frank. He thinks he’s sitting above the dugout, and when someone fumbles a ground ball or misses a tag, Frank is on his feet, screaming at the poor guy.  Or else, he’s leaning forward, predicting loudly when someone will screw up. ‘Don’t do it!’ he’d yell. ‘Wait! Wait!’”

If it isn’t sports, it’s a movie, any movie—that, too, presents an opportunity for Frank to participate.  He yells at the actors, warning them of some impending disaster. Or he forecasts some dire plot twist, shaking his fist at the TV. And if an attractive actress shows up, he might suddenly shout, “That woman is about to take her top off!  No one wants to see that!”

For months Cathy had put up with Frank’s behavior even though his impromptu yelling and ridiculous predictions sucked the joy out of being in the same room with him.  But when he became fixated on thieves attempting to break into their house at all hours of the day and night, insisting that she lock the doors and shut all the windows, she had had enough. Her patience and good will had run out. 

“No one is out to get you!” she shouted one night. “No one wants anything from you. No one is looking to break in. You hear me? You have dementia! Dementia!”

Cathy knew, of course, that she shouldn’t argue, that it was pointless to use logic and contradict her husband, but she couldn’t help herself.

“I always thought I was a sensitive person,” she mused. “Now I’ve become someone who kicks people when they’re down. I tell him Errol Flynn isn’t going to die. I tell him Doris Day isn’t going to take her blouse off. I tell him he has dementia. Why do I do that?”

Cathy is not alone. The vast majority of caregivers know full well that their spouses or parents are ill, yet they still behave in ways they know are counterproductive: arguing, blaming, insisting on reality, and taking symptoms personally. Yes, Cathy understood that she was dealing with a disease, with someone suffering from delusions and hallucinations, but when Frank, panicked by imaginary thieves, refused to crack open a window, Cathy fumed with resentment, and that feeling gradually overcame her desire to be understanding and reasonable.

Telling me all this, she shook her head in disbelief. “You know, he’s absolutely right. I don’t blame him for getting angry,” she said. “If someone had told me before Frank got Alzheimer’s that my job was to agree with him and accept his reality, I would have said, ‘Sure, what’s so hard about that?’ I mean, who cares that he thinks some jock is going to fall on his ass or that the weather girl is going to flash everyone? It’s not his fault. Who does this?”

“Just about every caregiver I talk to,” I said.

Although Cathy was taken aback by her own irrational behavior, it should not surprise us. Reasonableness is hardly our brain’s first priority. The brain, after all, is an ultrasocial organ that has innate expectations that are often not met when caring for Alzheimer’s patients. So when someone with whom we’ve had a close relationship develops Alzheimer’s, in many cases he or she begins to retreat into a world where we cannot follow. Not only do patients often not realize they have a neurological illness, they start speaking and behaving in ways that test our own sense of reality.