Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat - By David Dosa Page 0,47

Instead, they would hold an X-ray in the air and talk to me about tangles and plaques as if I had been in medical school along with them. The X-rays didn’t mean anything to me.”

Unfortunately, I hear this all the time. I appreciate that physicians are trying to share information with patients and their families, but there are better ways of helping them cope with the disease.

Joan played with a napkin as she considered her next statement. It was as if she was sending a message through me. “I just wish there were more people in the medical community who could help guide you through the day-in and day-out aspects of living with someone with dementia.”

“IT’S ALL ABOUT FUNCTION,” a lecturer said in a class at medical school many years ago.

She paused for emphasis and looked out at the future physicians assembled before her.

“In medicine, doctors often make the mistake of pursuing diagnoses. I’m here to tell you that the name of the disease doesn’t matter. It may seem important to us as physicians and many patients may think it’s important, but I can guarantee you that in most cases it’s irrelevant. Do you think a patient really cares if he has progressive supranuclear palsy, Alzheimer’s, Pick’s disease, or Lewy body dementia?”

Someone in the front row raised his hand. “But aren’t all of these things important to know?”

“To the physician, they’re very important,” she said. “They’re the language we use to convey information to one another. They help us define an illness and talk to each other about it. It’s not nearly as important to the patient.”

“But don’t people want to know what they are up against?” the student asked in follow-up. He was one of those students who seemed to think he would get extra credit for challenging the professor.

“Absolutely. Patients like to know what’s causing their discomfort or their disability. The fear of the unknown is always worse than fear attributed to something. In the end, though, it’s more about the discomfort or the disability than the name or label.”

She paused again for emphasis. “People care mostly about whether a disease will change the way they live. Will I die from my disease? Will I be able to walk or care for myself? Will I be able to care for my husband, wife, or children? Will it hurt? This is what patients care about most.”

She was right, of course. When a car runs you over, you don’t much care about the make or model.

“THERE ARE TIMES when I’m so ashamed at how I handled things,” Joan said to me. “I just wish I had known more.” She looked at her daughter for moral support.

“I think you have to learn it for yourself,” Robin added. “There are times when I think we both failed my father.”

“How so?” I asked.

“We just didn’t know how to deal with him,” Robin said. “Sometimes we’d get so frustrated and impatient with him. Other times, we’d just get angry over trivial things. For example, there was a point in his disease where he forgot how to put the key in the door.”

“Or fasten his seat belt!” her mother interjected.

“Right! Every time we’d go for a drive, my father would ask me to show him how to buckle his seat belt and I would go over it with him in painstaking detail, like I was teaching a young child how to do it for the first time. But he never got it. I’d get so angry with him that he couldn’t do it rather than just accepting the fact that you can’t teach something to someone who is ‘unlearning’ everything. Ultimately, I had to figure this out for myself. Perhaps every caregiver does.”

Now Robin was getting upset. As the memories returned, so did the guilt. They had tried so hard—done so much—but they still regretted how they’d dealt with some of the day-today issues. The guilt is as natural as the frustration. I can only imagine the anger and irritation of constantly confronting a college-educated man who can’t figure out how to button his shirt or turn on the television. You would get angry.

“Why can’t you do this anymore? A child could do it.” The difference is that a child is learning. A patient with Alzheimer’s is, as Robin said, “unlearning.”

Like so many others in similar situations, Joan and Robin had fallen into the trap of remembering the person who was rather than the person who is, the person with the dementia. When this fact