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Alzheimer’s Caregivers and
Support Groups
I frequently hear caregivers talk about
their isolation from former friends and
neighbors and how small their once active
lives have become. Many say that’s why they
look forward to their support group meetings
and look back on their hesitation to join a
group with disbelief and regret.
For some caregivers, joining a support
group is not an easy step to take. The thought
of hearing what’s in store for them in the
future, beyond problems of memory loss and
disorientation, feels too overwhelming and
depressing.
They say they’re depressed enough and
don’t want to risk becoming more depressed.
It cannot be denied: coping on a daily basis
with an incurable long-term degenerative
neurological disease like Alzheimer’s is
depressing, especially for those living with the
patient, making regular visits, etc.
However, when hesitant caregivers join a
group (and at some point in the disease, often
too close to its end phases, most Alzheimer’s
caregivers will join a group), they realize
support group meetings are not necessarily
depressing.
They’re very surprised at how much
laughing goes on at group meetings.
“It would shock people, the way we make
up jokes and laugh at the most horrible things.”
a group member said, “ But we need to let the
pressure out. Sometimes we just don’t want to
be where we are.”
This is not to say caregivers are not talking
about hard experiences and sitting with intense
sadness and grief; but there is a difference
between sitting with those feelings and the
depression caregivers fear.
What is actually feared is the experience
accompanying what feels like “giving in” to
the hopelessness of not being able to stop the
advance of the disease.
The problem is, if caregivers do not ‘give
in’ and come to terms with the futility and
hopelessness of their efforts, they are at risk
of feeling increasingly depressed, helpless,
frustrated and agitated.
Holding on to hope that Alzheimer’s can
be ‘fixed’ limits the ability of caregivers to see
what is actually realistic to expect from their
relatives with the disease, to react appropriately,
access the right services and take advantage of
what programs exist.
Ultimately, letting go of unrealistic hope
unlocks the capacity to experience the pain,
loss and grief that is normal in this situation.
Caregivers who hold on to unrealistic hope are
in danger of becoming rigid in their belief the
disease can be controlled, if only, for example,
their relative would try harder and cooperate.
This could inadvertently lead to mistreating
their relatives and making poor decisions about
their care.
The experience of talking openly about
the pain of letting go of unrealistic hope and of
losing a beloved wife or parent to Alzheimer’s,
with group members with whom you don’t
feel judged, is one of the most healing and
therapeutic experiences.
“There is probably no disability of our
time in which the presence of support
groups can help so decisively to ensure the
emotional survival of the witnesses to the
disintegration,” wrote Sherwin Nuland, MD,
renowned surgeon and author in his chapter
on Alzheimer’s disease in his book How We Die (p. 106).
There are over 120 caregiver support
groups for adult children and spouses in
the metropolitan area, including groups for
Chinese, Spanish, and Russian-speaking
caregivers. Call Wendy Panken, LCSW at
646-744-2917 to discuss which group would
be best for you.
There are groups for adult children, spouses, partners and significant others. All the groups
can be seen here or a support group list will be mailed to you if you call the 24-
hour Helpline at 646-744-2900. If you would like to discuss the right group for yourself or other
questions, please call 646-744-2917.
Support Group Leader Training Seminars
Spring Training
April 23, 2010
April 30, 2010
May 7, 2010
May 14, 2010
Registration requires a commitment to attend all 4 days of training. To register, for information
about future workshops, or ongoing supervision groups for support group leaders, please call
Sharon B. Shaw, LCSW, CGP, at 646-744-2932.
This program has been approved by NASW-New York State for 22.0 contact hours under approval number A-915.
For more information, please contact Sharon Shaw at 646-744-2932 or sshaw@alznyc.org or
Wendy Panken
at 646-744-2917 or wpanken@alznyc.org.
— Wendy Panken, LCSW
Manager, Support Groups
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