The Valley of the Baby Dolls

I recently read ‘DANCING WITH ROSE: Finding Life in the Land of Alzheimer’s’ by Lauren Kessler. In it, she reveals the inner life of an Alzheimer’s care facility. I liked so much about this book but want to share one part in particular for now.

Early on in her job at the care facility, Kessler tells us about a group of ‘doll mothers.’

“One lady is sitting in the rocking chair, rocking her doll back and forth, back and forth, her eyes half-closed, her lips upturned in a half-smile. She has that dreamy look mothers have when they rock their babies. At one of the dining room tables sit Billie and two other doll mothers, all holding their swaddled babies to their chests.”

She goes on to describe both the residents and the workers fussing over the dolls, everyone playing along as if the dolls were real babies.

My grandmother who had Alzheimer's did this. She used to sit on her couch and hug them and coo at them. I think there were two dolls. I vaguely remember a stuffed bear named Henry as well, but it was the dolls she loved and mothered. I remember hearing her tell them how beautiful they were.

The first time I saw my grandmother doing this, it scared me. This was my grandmother who’d raised nine real babies now taking great care to swaddle a plastic doll. I looked to my Aunt Mary, my grandmother’s primary caregiver, for some explanation or reassurance that this behavior was somehow ‘normal’. She just looked back at me and said, “Shoot me when.”

My grandmother’s relationship with these doll babies went on for a long time. I never got used to it. What was going on inside her head? Did she honestly believe they were real babies? Was she just pretending? Did she think they were her babies or was she babysitting? By mothering and comforting these dolls, was she somehow feeling mothered and comforted herself?

I never asked her. I felt too embarrassed, too unnerved. I don’t know why they made her happy, but I know they did. Has anyone else seen this happen? Does it only happen with women with Alzheimer’s? What do you think is going on?

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Emotions Unchecked

Not too long ago, I studied acting for a year and a half. As with any approach to acting, the ultimate goal was to ‘live truthfully under imaginary circumstances.’ You don’t pretend to be enraged, grief-stricken, or in love, you actually feel these things in response to what happens. And when an actor is able to achieve this, the effect on the audience is powerful (I always think of Shirley MacLaine screaming in a heartsick rage on the beach with Jack Nicholson in Terms of Endearment. She moves me instantly to tears every time).

As grown adults, my classmates and I found this goal to be an extraordinarily difficult one to grasp. To respond readily with honest emotion, you must be able to turn off your ‘internal editor’ or your self-consciousness, your ‘monkey mind’. This is the part of your brain, that internal voice, that says to you, “Don’t say that! What will people think?” Or, “Don’t do that! You’ll be so embarrassed.” Or, “If you do that, the other actors and the audience will think you’re stupid, a jerk, or crazy.”

We’ve been socialized not to express our raw, primal emotions. We learn not to scream when we’re angry or cry when we’re sad. When we were two years old and felt overwhelmed or perceived some horrible injustice, we might’ve readily thrown ourselves onto the ground, screaming and writhing in pure anguish. But our (humiliated) parents told us not to do this, maybe punished us or refused attention, extinguishing the behavior, and gave us other tools to use other than expressing the emotion, like ‘using our words.’

Biologically, neurons from the cortex—the brain’s higher thinking centers—form powerful inhibitory connections on the neurons in the brain’s emotion centers. So raw emotion becomes strongly inhibited. Our primary job as actors is to release this inhibition and let the natural emotion happen. I remember watching a toddler throwing a fit in a store one day while I was in the middle of my training and thinking, “If only I could do that!”

Some of you caring for someone with Alzheimer’s and even some of you with Alzheimer’s may’ve noticed this disinhibition of the brain’s primary emotion centers--

Grandpa was always a quiet, reasonable man, and now he’s prone to explosions of loud, scary anger.

Grandma had always been a polite and proper lady, and now she’s being sexually provocative with the men in line at the grocery store.

What’s going on?

Alzheimer’s Disease doesn’t just disrupt memory. It also interferes with those inhibitory connections descending from the cortex to the brain’s emotion centers. Without those inhibitory signals, the emotion centers are free and clear to fire away—Rage! Grief! Lust!

So when someone with Alzheimer’s is reacting with uncharacteristic and unapologetic emotion, he or she isn’t becoming someone else or trying to be difficult. The part of the brain that learned emotional restraint is under attack. They don’t have the neurons they need to dampen or bury it. And, because this disease has likely attacked other parts of the brain involved in language, they may not have the communication skills to ‘use their words.’

My grandmother, who’d always leaned toward flirtatious, became at times embarrassingly outright with her sexuality when she had Alzheimer’s. She would’ve made a great actress. If only she could’ve remembered her lines.

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Alzheimers Disease…….What’s It Really Like?

The following was received by Mony De Leon at NYU, and forwarded to the Alzheimer's Association. Please take this powerful call to action to heart.

I would like to dedicate this in honor of my Beloved Mother, diagnosed with Alzheimer’s Disease, who passed away April 22, 2006. Just exactly how many people are familiar with this horrible disease? Some may say they have never heard of it. Others may say it’s “hardening of the arteries.” Some may even say it’s just old age “creeping in.” But, the real truth of the matter is, it’s the most debilitating, demoralizing, destructive, and devastating disease within existence.

Does anyone really know what a person with this disease goes through? How they spend their hours, their days, their nights, their very existence? Just once, we should try and view the world through their eyes. Just once, we should walk the path they walk. And just once, we should be told we can no longer live on our own. That we are incapable of taking proper care of ourselves.

The trouble is everyone is too busy and too caught up in their own daily lives to feel the pain, the anguish, the fears and tears of a person with this disease. “There but by the Grace of God go I.” Please take a moment to just think about it, as this world they now exist in is very confusing,
dark, lonely, and at times almost completely void of reality as we know it. To a person with this disease the world can be a pretty frightening place. A clouded, distorted view of life free of warmth, free of past comforts, and even at times free of love because of lack of understanding.

What have we brought into this world? Nothing! What can we take out of this world when we leave it? Nothing! Just once try to put yourselves in their place. Try once to experience first hand the frustration, the emptiness, and the heartache that fills their day each and every day.

When was the last time you had to have someone feed you, or the last time you had to have someone dress you, or bathe you, or comb your hair, or for that matter, brush your teeth? This is merely the beginning as the real heartbreaker is when they can no longer walk or talk, or even swallow their food. Sound horrifying? It is! Once again, “There but by the Grace of God go I.”

Please try and think long and hard. Please try thinking with your hearts and not your schedules. Please try to take out one hour a week, one hour every two weeks, or possibly just one hour a month. Go and visit a facility where residents with Alzheimer’s Disease reside. There is no cost….it’s free. The only thing it may possibly cost you is a smile, a hug, or a reassuring pat on the shoulder. Perhaps just a listening ear, or a tender loving and caring heart. The rewards reaped will be monumental.

Remember 911? Who could ever forget? But, as the days passed, people seemed to do exactly that. We all returned to our old lives, our old ways of living and our busy schedules. Please don’t let this happen here. The time is here and now. Please give of yourselves, your understanding, your love, your time, and put a smile back upon one face, put back a song within one heart and maybe even wipe away one tear or two from a pair of tired eyes. You will be so very much the richer. But most of all, you will fill someone else’s life with warmth and make a difference in someone’s life that otherwise was quite cold and empty.

Diane L. Christopher