Modern Family: Explaining Alzheimer’s, Illness to Kids

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Mar 6, 2015

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I cheered for Julianne Moore, like millions, as I watched her accept the Academy Award for Still Alice. So many were moist-eyed not just for her performance, but for creditably using her limelight to push for sensitivity to early-onset Alzheimer’s.

“So many people with this illness feel isolated and marginalised,” she said. “The wonderful thing about movies is they make us feel seen and not alone.”

Her last line was empathetic and empowering. It has certainly made me want to see the film soon. What’s more, I’m suddenly a lot less frightened to pick up the book by Lisa Genova on which the movie is based.

Five years ago, I flinched when my reading club chose it as our title of the month. Genova, a neuroscientist, wrote a hauntingly accurate account of a 50-year-young mother’s descent into Alzheimer’s. Reviews hailed it for shining a light on the lives of those directly and indirectly affected by this dreaded disease. Strange, how I promptly ordered the copy from Flipkart and yet couldn’t turn beyond the first few pages. My husband understood perfectly. I was raw then, hurting from losing my mother to a cruel cocktail of illnesses that started with Alzheimer’s.

Yes, I shrank from further mulling on that twilight zone a once-vibrant parent had slipped into. Especially after my 9-year-old, who’d seen me fall apart as mum’s caregiver, clutched me and said, “Mummy, please go gym every day, OK?” Urging me to keep healthy, she was petrified I might have to grapple with her grandmother’s fate. I looked back into her big, broody eyes, searching for words. Terminal is terrifying. And lacking the strength to rise to the responsibility of explaining it to the young is painful indeed.

I vowed to find the best ways to reassure her and her older brother – stoic, but just as stunned – and turned to professional help. I needed to gather and glean invaluable tips to face one of the saddest parental tasks: breaking news of a beloved family member’s incurable illness to children. This is what I learned:

Acknowledge the problem.

Keep no secrets, sweep nothing under the carpet. Kids sport the sharpest antennae.  They keenly note peculiar behaviour patterns (especially random actions or chronic forgetfulness associated with neurological dimming), and they end up mystified and overly anxious if you hide facts from them.

Explain honestly, simply, calmly.

This is hard, agreed. With the best will in the world, it’s awful to convey grim realities. If I wept on learning of my mother’s diagnosis from our doctor, it was so natural for my children to worry this could, in turn, be their mother’s future. It worked for me to say, “She’s a person, not a patient. Granny may continue to act oddly but has little control of what she does. We must love her even more.”

Try not to underestimate nor overestimate kids’ perception.

The young are more resilient than we give them credit for. They accept, often better than adults, a reasonable explanation of circumstances. Kathleen McCue’s customizable book, Someone I Love is Sick: Helping Very Young Children Cope with Cancer in the Family, suggests that only mature children ask for specific information. Kids aged two to six are unable to draw logical links; they usually imagine each situation individually and will react on the basis of what they actually go through, not what they think might happen in the future.

Stop a blame game before it happens.

Children are literal and look to spot cause-effect everywhere. They could internalise and confuse the situation, believing it was their fault, or worrying they’ll be “punished” by the sickness, too. Put those small minds at ease by making clear that nothing they’ve thought, said, or done ever translates into dementia, cancer, or any other serious disorder. They are neither the cause, nor can they “catch” it like chicken pox, measles, or other communicable diseases.

Reassure kids they’re not alone.

There’s always cold comfort in realising others face a similar obstacle. India unfortunately has limited support networks for families ravaged by terminal illness. If you don’t have access to a structured support group, create informal ones through which you and your children connect with other families.

Build on and celebrate what you have.

With Alzheimer’s, not every faculty fades equally. A friend, speaking from personal experience, once advised me to wear the same perfume each morning I visited my mother. Although she already did not recognise me, she sensed I was there beside her when I bent to hug her and she caught a familiar whiff of Happy Heart by Clinique. “Don’t forget Mamma’s scent!” my daughter would call out as I stepped out of our home.

Focus on the positives, cheerfully.

Attitude is really everything. Point out that because someone has, say, cancer, the result isn’t necessarily death. People often beat back the illness through chemotherapy, radiation, and surgery, leading full lives in remission. For the fortunate, it can be a gentle slide into Alzheimer’s over years, their quality of life buoyed by the researchers who are pioneering new treatments and cures.

Stay spiritual, optimistic and open to the universe.

This may be a good time to introduce the power of faith or spirituality, in whatever form is appropriate for your family.

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Written By Meher Marfatia

Meher Marfatia lives and works in Mumbai as a freelance writer and independent publisher. The author of 10 books for children and two for parents, she also runs a reading club for pre-adolescents with Rupal Patel. She has mothered her own kids well past the terrible twos and almost past the troubled teens. Reach her at: mehermarfatia@gmail.com

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