My dad's voice drifted gently through the cell phone, quieting the zip-zapping of my mind, "He was my only friend with Alzheimer's -- sort of my best friend. And now he's dead." Rain pattered outside the tall kitchen window next to me. I'd been chopping colorful vegetables for dinner, and my knife froze. Our family schedules, the child therapy, writing projects, and checklists dissolved for a moment, allowing me to hear my father who suffers with Alzheimer's. Sometimes his mind wanders and frets. He repeats himself. People dismiss his feelings. But lately I've found wisdom when I listen to him, so I inhaled.
"Yes, I know. You told me before," I exhaled. He'd told me about his friend's unexpected passing in phone calls, emails, and in a poem emailed earlier that week. "This is such horrible news," I stumbled, aware that I'd inadvertently highlighted his memory problems rather than offering comfort.
"Did I tell you he killed himself?" asked my dad.
"For sure?" I asked. Good God, I thought. He has only one friend with Alzheimer's. And he killed himself?
"Yes," my dad said clearly.
His friend, a brain surgeon, had hidden his Alzheimer's diagnosis from most people. But because my dad speaks openly about his disease, his friend had felt safe confiding in him. The two had exchanged stories about their experience with Alzheimer's. "He didn't like people to talk to him like he was suddenly an idiot, because of his Alzheimer's," my dad explained.
"Of course not." I thought about my 9-year-old special needs son who had open-heart surgery and was recently called "scar chest" at swim practice.
"So you have no other friends with Alzheimer's? No support group in your neighborhood?" I asked.
"I don't know anyone else with Alzheimer's," answered my dad, "... or any groups like that." He thought for a moment, then continued, "If my friend had known more people with Alzheimer's, maybe he wouldn't have taken his own life."
"Aren't there groups for people who actually have the disease?" I pictured the hundreds of manicured lawns and beige homes dotting the cute streets of Sun City, my parents' retirement community in South Carolina. My mom and dad had moved there to live among a supportive, aging community. So how could my dad, diagnosed with Alzheimer's at age 67, and his friend, suffer alone in his bustling village of seniors? For the last 30-some years, my dad has talked at Alcoholic Anonymous meetings about his struggle with addiction. Now he has a brain disease killing one in three seniors, but no one wants to talk with him about it?
Research shows that feeling isolated from others can: disrupt sleep, elevate blood pressure, increase morning rises in the stress hormone cortisol, alter gene expression in immune cells, increase depression, and lower overall subjective well-being. Research also documents that one in nine of my dad's neighbors has Alzheimer's as do about one third of people age 85 and older. So why aren't people with Alzheimer's talking to each other about their disease?
Maybe you think people with Alzheimer's couldn't relate to one another. They'd forget names, lack compassion, and stress out each other. They'd be a miserable self-help group.
However the perception that people with Alzheimer's are "idiots" as my dad says, assumes that they're all in the late stages of the disease. Stigmatization relating to a disease or illness affecting the brain isn't a new phenomenon. Take childhood mental illness: one of my sons has severe sensory and behavioral challenges with symptoms crossing between autism, ADHD and a mood disorder. As his parents, my husband and I have faced stereotypes, erroneous advice, and the judgment of a culture still often ashamed of those who suffer with mental health challenges. We have sought out other "atypical" kids who have empowered our son with hope and a community that acknowledges what he can accomplish, with his differences, not despite them. We've witnessed how these honest friendships impact our son's mental health progress and his self-esteem.
But 50 or 60 years ago, our son may have been turned away from schools -- public and private. He may have been punished for his inability to conform to social standards. He may have been treated with LSD, lithium, and shock therapy. He may have been institutionalized at a young age. We might have overlooked the blessing that when we we approach a mind humbly, there is much to discover. When we feed a mind with compassion and surround it with a validating community -- the trajectory is unpredictable.
Similarly, Alzheimer's disease, and how it affects the length or quality of an individual's life, isn't predictable. Often people are diagnosed at the onset of the disease, and with proper treatment and a supportive community, they continue to hold jobs like running the United States of America (no one knows for sure if Reagan had Alzheimer's while holding office, but one of his sons says that he did,) or coaching the Tennessee Women's Basketball team as Pat Summit did for one year after announcing her Alzheimer's diagnosis.
People live with Alzheimer's diseases for as little as one year or as many as 20 years. As treatments advance, this estimate changes. According to a 2013 Huffington Post article, a study conducted by Utah State University showed that caregivers who utilize higher levels of "positive" coping strategies -- problem-focused coping, seeking greater social support, counting blessings -- were able to slow down dementia's progress as measured by a variety of global standards.
Since his diagnosis, my dad has volunteered at a presidential convention, been active in church, written poetry and a memoir, created ceramics, played football with his grandchildren, skied the Sierras, chatted with his daughters about birth and death, his years as a U.S. naval officer, the president of an advertising agency, and more. But still he wrote to me in an email, "It is lonely out here. We do not lose our brains all at once."
So what can we do?
First, if you're a caretaker for someone with Alzheimer's, consider creating an anonymous group in your community for those in the early stages of the disease. A grassroots group would allow people the opportunity to talk openly about their disease, promoting dignity, treatment awareness, and less fear of stigma around Alzheimer's. If people with Alzheimer's unite, then more accurate perceptions about the disease will take root. My dad has contacted his local chapter of The Alzheimer's Association to start such a group in his community.
Treat people with Alzheimer's as individuals who have a disease not people who are their disease. If you know someone with Alzheimer's, ask him or her out for coffee, a walk, or a visit to a museum. Help prevent the "withdrawal into depression" as my dad described his friend before he took his life. Make the phone call, send the email, knock on the door, comment on the Facebook post, offer the volunteer job. Be there!
Don't fear those with brain disease or mental illness. Instead, ask yourself what you can learn from them. When I had my third baby, my dad reached out to me. I'd felt guilty about which grandparent would get to stay with us first, second, etc. "Amy, don't worry about pleasing us. Focus on what's important," he said, recognizing that I was coping with a special needs child in crisis as a new baby was arriving. My dad's "poor memory" of yesterday's details allowed him to be present with my experience, providing me with assurance. Similarly, my son with special needs often pinpoints my feelings. "Mom, why was your voice angry even though you were smiling?" His highly sensitive nature, which often gets him into trouble, enlightens me with its honesty.
Be a fearless, humble explorer when you connect with a mind that is ill. And carry your greatest tool always -- HOPE. A disease without hope is a certain path to despair, depression -- to death. And treatment without a humble awareness of the undiscovered avenues of the brain, overlooks opportunities to heal. We have much to learn. Admit that we don't fully understand Alzheimer's or other mind illnesses.
When I approach my father with an open mind, I see all that he is today. Each poem he sends me, every phone call, each bowl he spins on a wheel -- surely is a blessing. Each day he lives, he offers me a gift that spreads its wings to share with you: Let every mind -- no matter the diagnosis or the prediction of days on this earth -- let every mind fly. Fly high!
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