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Dear Readers,
I The Baby Boom generation. 78 million of us born between 1946 and 1964. Over 40%
destined to get Alzheimer’s if we live long enough unless we conquer this disease, delay its
insidious onset or even learn how to prevent it.
Alzheimer’s is such a complicated disease, and so feared. It stimulates such a wide range
of emotional responses from those living with it, and those caring for them. Alzheimer’s
allows us to feel all our human emotions: anger, guilt, sadness, helplessness and fear, but also
opportunities for love, devotion, selflessness, compassion and important lessons in self care and
balance for the caregiver.
Alzheimer’s is such a complicated disease, and so feared. It stimulates such a wide range
of emotional responses from those living with it, and those caring for them. Alzheimer’s
allows us to feel all our human emotions: anger, guilt, sadness, helplessness and fear, but also
opportunities for love, devotion, selflessness, compassion and important lessons in self care and
balance for the caregiver.
I have had the privilege of learning from several new teachers recently. Vicki de Klerk-Rubin is reviving interest in the Validation Method in Europe, Japan and in the U.S. Validation
is a way of relating to very elderly, very demented individuals; connecting to them by a variety
of approaches that require patience, calm and openness. The results can be impressive. An elder
who hasn’t spoken in months or years sings a song, utters a sentence or reaches out to hold a
hand. Validation can rekindle a spark of life in someone who appeared to be unresponsive and
distant.
Alix Kates Shulman, an award winning author of 12 books, recently published “To Love
What Is” (see interview here), the story of caring for her beloved partner Scott after a
traumatic brain injury and incipient dementia. Alix, a member of one of our co-sponsored
support groups at NYU, writes with no holds barred. She shares all of her conflicting emotions,
the love and the anger, and everything in between. Alix is a staunch advocate and coach,
who firmly believes that with rehab her husband can improve, and resists all evidence to the
contrary. She insists on private time to work and be part of the world, but also genuinely wants
to care for her husband at home. She balances multiple demands and becomes a skilled care
manager, cobbling together a patchwork of “Scott-watchers” and other help, so she can remain
a part of the world and still provide superb care. This is an inspiring story of love, and a tribute
to accepting what cannot be changed.
Rabbi Dayle Friedman, Director of Hiddur, The Center for Aging and Judaism in
Philadelphia, spoke movingly at our most recent Chaplain’s conference about seeking the
Tzelem, the divine spirit in all individuals, including those with Alzheimer’s disease. She spoke
of connecting with that human spirit that exists in all of us, and that is not dependent on one’s
cognitive state.
Carol Levine, Director of the Families and Health Care Project at the United Hospital
Fund wrote a moving essay in the New York Times Magazine “Lives” column on July 6, 2008,
(www.nytimes.com) that describes her change
from wife to caregiver when after 34 years of marriage, her husband suffered severe brain
injury in a car accident on an icy road and became dependent on her for all his personal needs.
She describes the subsequent transition when 17 years after the accident, he died, leaving her
with the task of creating a new life for herself as a widow. She experienced all of the feelings of
grief she did not allow herself to feel when he was alive. She also writes about feeling relief and a strange unsettled feeling of having to start a new chapter in her life, alone.
Her story certainly resonates with caregivers of people with dementia.
These women, caregivers all, have different perspectives and different
lessons to teach us, the Baby Boom generation. What is important is what
they have in common. They are telling their stories. They are advocating
for better care for the person with dementia, and for the caregiver. They
are teaching compassion for those most in need of it. They confirm the
importance of acknowledging the common humanity that connects us all and
our need for support and relationship when we are most vulnerable.
The New York City Chapter is a place where I hope you will find that
connection and community. If you have AD, are concerned about yourself,
or if you are caring for a relative or friend with memory loss, call us. We will
listen and we can help. 1.800.272.3900 — 24 hours a day.
— Jed Levine
Executive Vice President,
Director of Programs & Services
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