Patient's Perspective

Compassion Counts

Alzheimer's caregiving is tough. ODs can help ease the burden.

Joan Brachman, as told to Erin Murphy, Associate Editor

TAKING MY FATHER to the optometrist isn't easy. I make the appointment for late morning, and I begin reminding him that we'll be going out as soon as he gets up. I frame it positively, and usually plan to go out for Chinese food after the appointment.

His Alzheimer's disease is at a stage of moderate decline. Most people wouldn't notice that anything is wrong. He is forgetful. He needs to see several doctors regularly, which he's beginning to resent. He can no longer organize his own appointments and information about his disease. He can be sullen and stubborn, which is sometimes a challenge when we have things to do, but this is part of the disease so it's something I'm learning to work around.

I'm pleased with Dad's optometrist because he understands patients with Alzheimer's disease. He has explained to Dad and me that Alzheimer's disease can cause physical symptoms in the eyes. He gave us a pamphlet about the symptoms, and I know he's checking for problems every time Dad visits.

The optometrist also understands the practical side of Dad's needs (and mine). I can go into the exam room with my Dad, which makes him feel relaxed. At the same time, I can relay any questions or concerns Dad has expressed about his eyes but may forget to pursue on his own. And because I'm there to hear the answers, I can remind Dad if he forgets. With Dad's permission, the doctor shares information about the exam with me and my Dad's primary care physician.

The optometrist's “bedside manner” is a real help, too. He's very matter-of-fact. He's always assuring Dad, “This just takes a second,” or, “You won't feel this.” That's really important to lower anxiety in Alzheimer's patients.

He also reduces Dad's stress about his disease. For example, if the doctor notes a problem, he says things like, “We're all getting older — with my knees, it will take me 10 minutes to get out of this chair!” If Dad has clearly forgotten something, the doctor says something like, “I forget things, too — drives my wife crazy!” and Dad laughs. Those little comments defuse stressful moments that could make Dad depressed or agitated.

The day of Dad's last appointment, he was sure I had it wrong even though I'd reminded him the day before. I explained that we discussed it yesterday, but he was confused, and when he's confused, he gets scared. He realizes he can't trust his own brain. Then he gets mad at me. In these situations, he digs his heels in and doesn't want his daughter telling him what to do. And I can't drag a grown man kicking and screaming to the doctor like a child. So I called the optometrist's office and explained the situation to the receptionist. She put me on hold, and a minute later, Dad's doctor was on the phone.

“I'm so sorry. Please go ahead and charge us for not cancelling sooner,” I told him. “Dad didn't remember his appointment, and then he got mad at me…. It just seemed like I did everything wrong.”

“Please, Joan, it's OK. There's no charge. Sometimes we try and things just go awry,” the doctor said. “You know, I thought my wife would love getting a gift certificate for our anniversary, and my name has been ‘mud’ around my house ever since. So if you figure out how to keep everybody happy all of the time, you let me know.”

Then I laughed. I needed that. nOD