Her beautiful big brown eyes: a daughter’s journey with dementia — The Indian SCENE

Her beautiful big brown eyes: a daughter’s journey with dementia

I break bad news and give diagnoses all the time. But this was my family.

(Courtesy of Asha Shajahan)
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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.”

(Courtesy of Asha Shajahan)

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.

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15 thoughts on “Her beautiful big brown eyes: a daughter’s journey with dementia”

  1. Wow that was so beautifully written! Veliya Chachey is a truly inspirational woman and you are helping her carry her legacy. You have gone above and beyond to make sure you are her beautiful brown eyes 🙂

    1. This was very inspirational to read. And I loved the brown eyes reference! Hopefully others who are dealing with this can be as positive and uplifting as you! ❤️

  2. Sharan Lohithaswa

    Very well written! Way to capture the emotions in words. What I admire the most, is your unwillingness to be tainted or corrupt but rather find strength and solace.
    Prayers and well wishes!

  3. Beautiful use of words to paint a beautiful picture! Your mom was like a second mother to me growing up and she is an amazing woman and raised an amazing, caring and determined woman like herself. I love when you say you are being her eyes by doing the things she loved to do. The advice for people who may not know what to do or say to help is also very important. What a great article!

  4. This is so lovely and well-written. Such a great reminder to us all to care for our loved ones and others, especially in times of stress and adversity. Thanks Dr. S!

  5. Asha, sending lots of love for Kunjumol Aunty. She has played a pivotal role at just the right time in our lives, and I can never forget or thank her enough for being “the hand that held mine” in my story. To see you as her eyes, is the most divinely inspired vision ever. I hope you know you have a family of us, who will always have your back, surround you all with love, and keep the memories alive. We love you. 🙏🏼

  6. What a lovely way to remember how important family really is! The older I get, the more I realize the importance of strong family bonds. I’m so glad you can be there for your mom!

  7. Soo well written.can feel it from inside.admire u as a doc and daughter.its a reminder for many who ignore there parents at old age..

  8. Wow! Beautifully written. I myself am surrounded with Parkinson’s and Dementia patients in the family and I can totally relate to what you said in your article. Thank you for sharing your experience, it is truly inspirational and encouraging.

  9. The despair, loneliness and confusion amidst all this is strong. And patience is something that helps bring out the love in caring ways … Beautifully written!

  10. Truly inspirational, made me tear up! Such beautiful words, curing to caring. Thank you for sharing!

  11. Emotions have been so beautifully penned down. Am sure your dad and mom takes a lot of pride to know the person you have grown to become and you are blessed to have each other as family. Loads of love to you and aunty ♥️

  12. Asha, this is so touching and well written. May God give you strength to handle this tough situation. Praying for all of you. Thank you for sharing your experience which will inspire many.
    Love and prayers

  13. Asha, your story touches my heart. We too learned a lot from taking care of Dad. I can relate to your devotion to help mom and be her eyes in her time of need. Dad always taught me that a friend in need is a friend indeed. Your integrity is admirable in your actions and time you are spending with Kunjumolchachi.

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