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Dear Readers:
 One of the frequent complaints of an Alzheimer’s caregiver is the feeling of being “overwhelmed,”
not knowing what to do first, not having enough hours in the day, and not
enough time to care for themselves. It can lead to chronic exhaustion, a sense of being
drained and having no more to give. This is a feeling that we all are familiar with. With the
number of persons with Alzheimer’s estimated at 5.1 million in the U.S. and over 200,000
in our city, there is so much to do, and relatively so few of us doing it. Periodically, the staff
of the NYC Chapter gathers to do “strategic planning” and decide where we should focus
our attention over the next few years.
Past strategic planning meetings have resulted in an investment in our Web site, enhancing
its content and making it more accessible; expanding the Alzheimer’s Association Safe
Return® program; expanding diversity and outreach efforts to make our services available in
more communities; putting more resources into family caregiver education and training; and
providing training for home care workers in English, Spanish and Chinese.
We do so much, and yet there is always so much more to do. This parallels the caregiver
experience—no matter how much you do, it feels like it is not enough. Part of that feeling
is induced by the disease itself. We don’t have a medical cure for Alzheimer’s and the other
dementias. So much of what we do feels inadequate in the face of the power of the disease,
which will progress, despite our best efforts.
This was reflected in a recent column by Denise Grady in the New York Times,
“Zen and the Art of Coping with Alzheimer’s” (August 14, 2007),where she states,
“Science hasn’t done much better than politicians in addressing the issue ofAD. There
is no cure for Alzheimer’s and no way to prevent it.…Alzheimer’s is roaring down—
a train wreck to come—on societies all over the world.
“It is telling,maybe a tacit admission of defeat, that a caregiving industry has sprung
up aroundAlzheimer’s. Books, conferences, andWeb sites abound—how to deal with
the anger, the wandering, the sleeping all day and staying up all night, the person who
asks the same question 15 times in 15 minutes, wants to wear the same blouse every
day and no longer recognizes her own children or knows what a toilet is for.”
Periodically, it is important to take a step back, to re-assess what we can do and all the help
that we can offer to persons with the disease. There are studies that show that what Ms.
Grady describes as “Advice that is painfully and ironically reminiscent of the 1960s and ’70s”
actually does help caregivers. Those who get support learn about managing the behavioral
symptoms, and how to care for themselves; they attend support groups, feel less burdened,
have lower incidences of depression, and are able to care for their relative at home for longer
periods of time. I regularly hear from family members and persons with the disease who
are grateful for the information and support they have received from the Chapter.
What concerns me is our ability to reach all the people who need our services. We
currently have over 10,000 New Yorkers enrolled in Safe Return. We have the largest
enrollment of any chapter in the network of 78 Alzheimer’s Association Chapters, yet
there are probably 140,000–150,000 individuals in the city that could benefit from being
in the program.
There are waiting lists for family members who want to attend our Family Caregiver
Workshops. Our Board and staff are working hard, and doing a great job, raising the funds
so we can continue to provide the quality services we offer to those who need them.
It is important to remember that in the face of a disease like
Alzheimer’s you are doing the best you can. There is a story about a
little boy who is walking on the beach with his grandfather. They
come upon thousands of starfish that have washed ashore and are
dying. The child begins to toss a starfish in the ocean; first one and
then another. His grandfather says to him,“What are you doing? It’s
hopeless, you can’t save them all.” The little boy replied, “I understand,
but at least I can save this one.”
It is so easy to become overwhelmed by the job of caregiving and
not recognize all the help that you are providing, when sometimes it
feels so inadequate to the task. We are here to help. Call the 24-hour
Helpline, join a support group, come to an educational meeting or
workshop. And if you can, and when you can, remember that others
depend on your generosity to support our services, which we offer
free to all NewYorkers.
— Jed Levine
Executive Vice President,
Director of Programs & Services
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