In a neurologist's office of a renowned institution, I was told the devastating diagnosis for my mother. After explaining her condition to me in a low-lit sterile examining room, with the eyes of his training residents on me, he said "You can give her the diagnosis in a way she can understand."
Tears rolled down my face. I am a doctor. I break bad news and give diagnoses several times a day. This is my bread and butter. But now, I had to give it to my family, a burden no child should have. I knew what it would mean for my mother's future, my father's and the destructive impact on our entire family.
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 that they themselves said were nowhere near a promising treatment. I read journal after journal, emailed physicians and researchers, and traveled to various specialists. I got the same answer. No cure. No treatment. I felt defeated.
I failed my mother. What was the point of being a doctor if I couldn't treat my own mother? Anger, sadness, denial all 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."
That was an "ah ha" 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. I have to be her eyes. I need to do what I can to fulfill my mother's dreams.
My mom wanted to travel, so I travel.
My mom dreamed of doing community service, so I serve.
My mom loved to dance, so I dance.
I have the 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. We forget the person who is suffering are the caregivers but also the person who has the illness. Each day is a battle of a manic-like depression going from highs to lows.
Dementia is a growing global public health concern that can't be ignored. In India, more than 4 million people have some form of dementia. Worldwide, at least 44 million people are living with dementia, making the disease a global health crisis that must be addressed.
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. Illness is often hidden. It's a source of shame. The concern is centered around what others will think and not about the person who is suffering. This leads to social isolation and decreased quality of life. 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. There is nothing to be ashamed about if a person gets sick.
We can help each other by responding with affection and reassurance; offer an outing, call the caregiver, bring food over, drop by to say hi. Societal acceptance of dementia-related behaviors could be met with compassion rather than judgment. A public health educational campaign on how to include rather than preclude those living with dementia would be beneficial as the number of people affected by dementia related illness is increasing with nearly 10 million new cases every year.
September 21st is World Alzheimer's Day, so let's make an effort to accommodate friends or family that are affected by dementia. If they are unable to get out of the house, go to their home and visit. People hesitate due to the behavioral disturbance but take it from someone who has experienced this disease through my mother, every expression of concern are the cracks of light that break through the daily darkness of dementia.
The humble advice I can give as a doctor and a daughter for those impacted by dementia is to focus on 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. So my mom forgets, repeats, talks out of turn, and it's OK. She is still with us and I have to be her beautiful big brown eyes.
(Asha Shajahan, MD, MHSA is a general practitioner physician and associate professor in the US. She is the co-host of the award-winning health podcast, Beaumont HouseCall.)
Disclaimer: These are the personal opinions of the author.