Caring for caregiver

Last Updated 05 September 2014, 18:07 IST

Many families are embarrassed about their loved one’s memory loss. For it isn’t just the patients who suffer from Alzheimer’s; their families suffer too, shares Nancy Stearns Bercaw.

My father, Dr Beauregard Lee Bercaw, a noted American neurologist, died at the age of 73, after suffering from Alzheimer’s disease for many years.  As I look back on his illness, I realise that my family suffered from its side-effects, too. Alzheimer’s affected our ability to think clearly and act rationally. We needed nearly as much support as he did. Yet, unlike him, we rarely got it.
There is no medicine for the Alzheimer’s patient, nor is there one for the caregiver. In an attempt to stall my own decline, I invented a prescription for relief. Truth is, I won’t shut up when it comes to Alzheimer’s disease. A well-known proverb suggests that “silence is golden,” but I side with the idiom “silence is deafening.”

*Like the afflicted, caregivers are isolated. Fed up with my own solitude, I sought out people who would listen to me. I assured them that they were under no obligation to provide answers, just listen. A cup of tea would be enough.

*I was delighted to discover that my words didn’t fall on deaf ears. People liked what I was saying, despite the tragedy of my father’s illness. I found ways to suggest that my situation was funny, not just sad. It seemed, ironically, my father’s inability to speak had actually helped me find my voice.

*I created a blog to “talk” to people around the world. People, like me, who needed a venue to vent about the experience of loving someone who was fighting a losing battle. After all, caregivers get lost, too, in their own thoughts, in their own grief...

*My blog morphed into a monologue on identity and memory. I shared stories about my father, the heart-warming ones and the heart-wrenching ones. I talked about the effect his demise had on me. I talked about his life.

Many families are embarrassed about their loved one’s memory loss.  At first, we were too. My dad was a famous brain doctor in Florida. How could this happen to him? Turns out that it happens every day to people everywhere. Just like cancer; although no one is ashamed to talk about cancer. We must have a dialogue about Alzheimer’s disease if we’re going to endure and find a cure.

My father decided to become a neurologist after watching his father succumb to Alzheimer’s disease in 1971. Back then, the disease was rare and few had heard of it. The horror of this virtually unknown illness haunted my dad because he has seen it destroy his father. He vowed to help subsequent generations. And he did.

Dr Bercaw devoted 40 years of medical practice to helping patients and caregivers live, in spite of this devastating disease. He could offer no treatment, only empathy. He travelled the world, including India, looking for spiritual hope and alternative medicine.

Back home, at the centre of his office desk, he created a shrine to his own devotion: an
atrophied brain in a jar. When I was a kid, I shrugged it off. Neurologists often have spinal columns hanging around, so why not a brain in a jar? His job was looking after grey matter, so why not stare at some each day? Many years later, however, I made the strange discovery that the brain in a jar wasn’t just any old brain; it was my grandfather’s! My dad was holding onto grandfather’s remains as a reminder of what he was fighting in his patients. Sadly, it also turned out to be a crystal ball for the future of Dr Bercaw’s own brain.
In honour of my late father’s very odd ode to love, I named my blog Brain in a Jar. Readers responded by writing to me with their own bizarre experiences. We laughed and cried together, albeit over the Internet.

When my dad died, I swore that I’d never ever keep his brain in a jar. But guess what? I turned my blog into a book about him, and carry it with me everywhere. When I tell audiences this story, we allow ourselves to giggle at the absurdity of
genetics and obsession. Laughter is indeed the best medicine.

My other antidote to caregiver malaise is walking. I started strolling, in earnest, with my dad in the early stages of his disease. I found that it helped us both - clearing my head, while adding thoughts to his. My father and I walked to the local coffee shop on the mornings I visited him. The only thing he’d say on these short slow treks was, “The hibisci are in full bloom.” Every time he said it - which was dozens - I wondered whether the plural of hibiscus is, in fact, hibisci. He was the scientist after all, so I conceded to his wisdom. One morning, he didn’t mention the blooms. But when we passed a particularly
flourishing tree, he stopped to stare in my eyes. “Gal,” he said - using his old pet name for me and suddenly sounding very lucid - “I sure appreciate you coming to take care of me.” I composed myself long enough to say: “It was a pleasure, especially after all you have done for me. Besides, you don’t need so much taking care of.”

Walking with him, which I did until he could walk and talk no longer, connected us beyond time and space. Whenever I walk now, I can still feel his hand in mine. I can see ‘hibisci’ even when they aren’t in bloom. I can see hope where there was none. My journey with Alzheimer’s disease led me to the conclusion that life is measured in love, not in brain mass. Along the way, I discovered that it’s the heart that belongs in a jar. And I’ve decided to open mine up to the world of AD. Care to join me?

(The writer’s first book, Brain in a Jar: A Daughter’s Journey Through Her Father’s
memory, was published by Fingerprint!)

(Published 05 September 2014, 18:06 IST)

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