I walked outside the neurologist’s office of the renowned institution where I had just been told of the devastating diagnosis for my mother. After explaining her condition to me in a low-lit, sterile examining room, the eyes of his training residents on me, he said, “You can give her the diagnosis in a way she can understand.”
My eyes welled with tears. I’m a doctor. I break bad news and give diagnoses all the time. This is my bread and butter. But now, I had to give it to my own family. I knew what it would mean for my mother’s future, my father’s; I knew how destructive it would be.
She has posterior cortical atrophy, a rare form of early onset dementia with visual impairment. There is no cure, no effective treatment, and the condition will only worsen.
I flew across the country to find the latest research. I spoke to famous specialists who could only offer clinical trials the doctors themselves said were not even close to cures. I read journal article after journal article, emailed physicians and researchers, and traveled to various specialists. I got the same answer. No cure. No treatment. I felt defeated. I had failed my mother, I thought. What was the point of being a physician if I couldn’t help the woman who had raised me? A mix of anger, sadness, denial brewed inside me.
At her follow-up appointment with the neurologist, my mother was asked how she was doing. She said, “My family are my eyes and my memory. As long as they are with me, I’m not blind or forgetful.”
It was an “aha” moment for me. Her positivity in the face of this dreadful disorder blew my mind. I shifted my focus from curing to caring.
My mom has the most beautiful eyes. Now, I have to be her eyes. I need to do what I can to fulfill my mother’s dreams. My mom wants to travel, so I travel. My mom dreams of community service, so I serve. My mom loves to dance, so I dance. What a privilege to be her eyes.
So often, dementia cripples family and friends. We don’t know what to do, so we do nothing. Rather than trying to understand life with dementia, we fear it. Each day is a battle between the highs and lows.
The worst thing about neuro-disorders, such as dementia, is the isolation. Due to the stigma, families suffer in silence. Dementia is viewed as a family secret to keep away from the community. But the avoidance of talking about it isn’t helping anyone. There is still a person behind the mask of dementia who needs love and support. We can help each other by responding with affection and reassurance; offering outings, calling the caregiver, bringing food over, just dropping by to say hello.
The humble advice I can give as a doctor—and as a daughter—is to focus on the joy. Spend time with the person you love. Visit, hug, laugh, tell stories. It is an emotional journey, but everything doesn’t have to be so serious. My mom forgets, repeats, talks out of turn, and it’s OK. She is still with us and we have to be her beautiful big brown eyes.
For more information, visit caregiver.org or listen to Asha Shajahan on the Beaumont Housecall Podcast.