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Dear Readers,
 In March of this year, I attended the National Conference of the Association of Professional
Chaplains in Pittsburgh, where I was honored to present “Keeping Faith in Mind,” a workshop for
chaplains, with the Rev. Dr. Martha R. Jacobs, our partner at the HealthCare Chaplaincy; the
Rev. Dr. Allan Kramer-Moyer from Phoebe Ministries in Allentown, PA; and the Rev. David
Wallace, caregiver for his wife Peggy and member of a support group for spouses. We first presented
this program at a conference in March 2007 in New York City where it was so well received that
we were asked to propose it to the National Conference to reach a broader audience.
David’s eloquent and painfully intimate telling of his and Peggy’s truly heartbreaking love story
served to reinforce several lessons that I have learned over the years.
Lesson One: Don’t Advise, Be Present
David spoke so movingly about his colleagues at the seminary where he is Dean, and what they
did to support him. The most important thing they did was listen. They allowed him to complain;
they tolerated his moods and his tears. They didn’t try to fix things, tell him that he would be all
right or that this is God’s plan. They were simply there for him, in the moment, allowing him
to have all his feelings, not dismissing him. What an invaluable gift of friendship, acceptance and
presence.
Lesson Two: Freedom of Choice
Peggy’s mom had young-onset Alzheimer’s disease (AD) Peggy and David chose to not pay attention
to that fact. They did not pursue the path of genetic counseling and testing. They chose to live
life and embrace all that their relationship had to offer. Peggy, a brilliant, witty Wellesley graduate
and Emmy Award-winning writer developed AD in her early 50s. Genetic testing is always a very
personal and individual choice. The lesson learned here is to respect individual choice.
Lesson Three: You Can Survive
If you allow yourself to feel the pain, to experience all the feelings from love to anger
to resentment, to stay connected in the ways that are comfortable for you, you can survive,
and indeed grow as a result of the caregiving experience. Peggy is now in a residential care facility
outside of Boston where she is receiving hospice care. At the age of 64 she cannot walk, has to
be fed and is incontinent. David visits, sits with her, holds her hand and sings to her. And he is
surviving. Although he reports that he still cries every day, three years after placing her there, he has
gradually moved on with his life, while still fulfilling his commitment to providing superb care for
his beloved partner.
Lesson Four: Get Help
David spoke so adamantly about the role of the Chapter and his participation in the support group
led by Wendy Panken, where he was encouraged to say anything and everything that he needed
to say. There he felt truly understood, and was no longer isolated, caught up in this tornado of
dementia that turned everything upside down. The group became his anchor, his ballast, his place
to sort it all out, including the bewildering morass of legal and financial issues.
I thank David Wallace for allowing me to share his story here. I hope that if you are caring for
someone with AD or a related disorder, you can find hope in his story, and know that the New
York City Chapter is here for you. Call us at 1-800-272-3900, browse our website or
e-mail helpline@alznyc.org.
No one has to travel this journey alone.
— Jed Levine
Executive Vice President,
Director of Programs & Services
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