Patti Davis - Floating in the Deep End: How Caregivers Can See Beyond Alzheimers

FLOATING

IN THE

DEEP END

How Caregivers Can See
Beyond Alzheimers

Patti Davis

LIVERIGHT PUBLISHING CORPORATION

A Division of W. W. Norton & Company

Independent Publishers Since 1923

This book is dedicated to Dr. David Feinberg,
in appreciation for his support and confidence in
Beyond Alzheimers. I am eternally grateful.

ALSO BY PATTI DAVIS

Homefront, 1986

Deadfall, 1988

The Way I See It, 1992

Bondage, 1994

Angels Dont Die, 1995

Two Cats and the Woman They Own, 1996

The Long Goodbye, 2004

The Lives Our Mothers Leave Us, 2009

Till Human Voices Wake Us, 2013

The Wit and Wisdom of Gracie (A Pugs Guide to Life), 2014

The Earth Breaks in Colors, 2014

The Wrong Side of Night, 2019

I n writing Floating in the Deep End, and before that in bringing into being Beyond Alzheimers, a support group for caregivers, Patti Davis has taken an incredibly difficult personal experience and galvanized it into a years-long mission to provide knowledge, support, guidance, and reassurance to Alzheimers caregivers. As a caregiver for her father, she did extensive work and research in the care of Alzheimers patients and learned a great deal of practical knowledge. She also tapped into the specific needs and challenges faced by those providing care to Alzheimers patients, including their important spiritual journey. I had the privilege of being a part of Beyond Alzheimers as a cofacilitator with Patti and was frequently awed by her kindness, humor, and compassion.

There is a saying in medicine, See one, do one, teach one. The phrase typically refers to learning a procedure and then passing along this knowledge, but it comes to mind here as well. Through her insight and perspective, Patti, in the pages that follow, provides guidance, reassurance, and a sense of connection to others experiencing various stages of caring for loved ones with dementia and the unique feelings that come with being overwhelmed and alone. Patti, through this book as well as by establishing the support group, has not only provided much-needed advice for various specific challenges during this time but also has enabled caregivers to forge connections and obtain much-needed support.

Upon meeting a new patient with memory concerns, a physicians initial role is to diagnose and treat. While there are some treatments for symptoms of such patients, there is a lack of disease-altering medications for dementia. Exercise, good nutrition and sleep habits, among other lifestyle adjustments, are encouraged, but above all the goal is to ensure the safety and happiness of the patient. Together with the family, medical professionals aim to identify and address potential risks for a patient, and to ensure safety at each stage of disease progression. It is, most of the time, an incredible burden for a family member to approach, and the specific challenges continue to evolve over time. And while no two patients are alike, there are similarities and common experiences among patients with dementia and their caregivers. As patients lose cognitive abilities, they often begin to feel more and more untethered to the buoy that once was their identity. And overworked caregivers, who assume the role of the life raft, can feel as if they are sinking altogether.

Caregiver burnout is nearly unavoidable in supporting a patient with dementia, at least at some point during the course of a loved ones disease. Beyond Alzheimers helps so many to not feel quite so alone. Providing this support is an invaluable resource not only for caregivers but the patients themselves, as they directly benefit as well. Patti has a particular ability to find the blessings and teachings in the smallest of moments, and it was both an honor as well as wonderfully touching to witness her inherent intuition and empathy. This book is a rare and special gift Patti has provided for us all by opening up about her experiences and by sharing her knowledge, so that even more families struggling with this difficult journey may find some solace.

I n the end, we remember people in piecesslivers of memory, images, bursts of sound, and trails of whispers. When I remember my father, I think of his eyes. As a child, I searched for them, wanting feverishly for them to focus on me, twinkle as they always did when he was about to say something funny or indulge one of my childish fantasies, like searching for leprechauns when the moon was full. On bright California days his eyes seemed to match the sky. But I remember also how they could take on a mineral stillness when he was determined to teach me something important, like getting back on my horse after I fell off.

I remember his shoulders, broad enough for me to sit on when I was small, strong enough to hoist me up onto a horse, build fences at our ranch. His legs were a swimmers legs, lean and sinewy. He had perfect form when executing a dive into the pool, and his kicks when he swam were hard and athletic. When I was a child, I used to say that my father could do anything. My parents found it cute, so I said it often. But I meant it; I thought nothing could get the best of him. A lifetime later, I would watch him stand helplessly in front of a beast he could not slay.

When Alzheimers began stealing him away, his eyes were my barometer for how quickly, how relentlessly, the disease was progressing. In the early stages they reached for what was still recognizable, sinking back into fear if what had once been familiar suddenly was not. At some point during the ten years of his illness, he was pirated to a place far away, and the only comfort was that his eyes looked relaxed, as if it was okay to be there. Over time, they changed color, fading from blue to an uncertain shade of gray, like the sky when fog drifts across it. A week or so before he died, he closed his eyes and I thought they would probably never open again. But they did.

The night before he died, the nurse unbuttoned his pajama top to listen to his heart through the stethoscope. His shoulders were so thin, just edges of bone and pale skin. I rested my hand around his left shoulder; it fit into the curve of my palm. Then I asked the nurse if I could listen to his heartbeat. She handed me the stethoscope.

Its weak, she said. Thready.

I heard it like an echo. A heart that was leaving this world. A heart I had always wanted to know better, to feel closer to. I knew Id remember the sound for the rest of my days.

Seconds before my father died, his eyes opened. They were bright blue and focused, twinkling like they once did so long ago, in a time that seemed like ancient history. He focused on my mother, let his eyelids fall again, and in an instant he was gone.

IN 1994, THE YEAR my familys life changed forever, people were not talking about Alzheimers. When my father released his letter to the country and the world revealing he had been diagnosed with the disease, the Reagans suddenly became the poster family for an illness no one wanted to discuss. I was living in Manhattan at the time, and if ever I was recognized on the street strangers would often stop me and mention his Alzheimers. Usually they would say that they were praying for him, or that they were so sorry this had happened. But occasionally someone would share a snippet of personal experience with a loved one who had been given the same diagnosis. It would always be brief, almost cryptican image through a half-open window. And then theyd be gone. I was left with glimpses into their experience, never the full story.