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Dear Readers,
C aregiving is central to the work we do at the Chapter. In fact, the New York City Chapter
was founded in 1977 when family caregivers banded together in an effort to get some answers,
find information and support one another.
Much has changed in the past 33 years. We have many more services and have learned much
more about how to help caregivers. Yet one thing remains the same. A family member or friend
caring for a person with dementia is still confronted with the challenging dilemma at the heart
of caregiving: how to balance the needs of the person with dementia — who often doesn’t
recognize the need to be supervised or cared for — with one’s own needs to live, work, and feel
a part of the larger community.
In my conversation with Carol Levine, Director of the Family Caregiving Project at the UHF, she reflects on the strategy that helped her find the right balance. She maintained a life
and an identity in addition to her role as a caregiver. Caregiving did not define her. She provided
outstanding care for her husband, but kept working, doing things with friends, and sought help.
Another difficult challenge in caregiving is the strong emotions stirred up as a result of an
initial, frightening, diagnosis. I recall one couple saying that the first few months after receiving
the news they just held onto each other and cried. But after the initial shock, there is work to be
done: planning, gathering information, and adjusting to a new reality of life with Alzheimer's disease (AD). A wife who
never dealt with automotive responsibilities now gets the car inspected and repaired. A husband
who never had responsibility for domestic chores now markets and does the laundry.
As the disease progresses, so does the emotional journey of caregivers. Eventually a caregiver
watches helplessly as a family member needs total assistance, is no longer walking, has no language
and appears to be fading away. Along the way family caregivers are at risk for exhausting all their
resources — financial, physical, emotional and spiritual. They are battered by profound feelings
of love, loss, sadness, resentment, anger, worry and often a wish that things could be the way they
were — or that the problem would vanish.
One husband said that watching his beautiful, capable wife descend into Alzheimer’s was like
being picked up by a tornado and blown about, unable to control what was going to happen
next, and not sure where they were going to land. It felt as if both of them were going mad,
especially when he came home and found that she had fed pea soup and coffee beans to the cat,
or found her wandering outside, barely dressed, confused and disoriented.
Thankfully, he found the Alzheimer’s Association, New York City Chapter. Through the
Helpline, the education meetings and the weekly support group he was able to “keep his head
above water.” He also learned to enjoy the moments of joy and connection he had with his wife,
and to mourn the losses.
We don’t have a medical answer to AD. But we know that our programs provide more than
valuable information: they provide support, a sense of community and understanding. That is
invaluable. If you are caring for a relative with AD or dementia, call our helpline 800-272-3900
or visit us on the Web. We are here to help — we can make a difference.
Thank you.
— Jed Levine
Executive Vice President,
Director of Programs & Services
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