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A Daughter’s Journey
E lana Sinsabaugh was 26 when she became a caregiver to her mother, who at 62, was
diagnosed with Alzheimer’s disease (AD). At an age when her peers were taking steps to
make a place for themselves in the world, investing in careers, planning families of their
own and becoming emotionally and financially independent from their parents, becoming a
caregiver derailed this process for Elana.
“My mother was a divorced woman and single mother and always took care of everything,”
Elana said, “but when I realized she wasn’t taking care of her finances and her handwriting was
incomprehensible, I knew something was wrong. I knew I had to help her. I’m an only child
and I had no one to talk with. I was scared, but I knew I had to make decisions.”
Fortunately in 2003, Elana did find the peers and support she needed at the Chapter’s new
young-adult children’s support group. “In this group, I feel understood and less alone, which
I really needed at the time, because by the summer of 2004, I was basically living with my
mother. She was becoming progressively more agitated and despite the doctor’s best efforts, what
was frightening was that no medications were working. Finally, I had to make the decision to
hospitalize her.”
In the hospital, Elana’s mother
was treated with antipsychotic
medication and sent home. At home,
she wasn’t eating or moving her
bowels and 10 days later she returned
to the hospital and slipped into a
non-responsive state.
 “I was told my mother was not
going to be responsive again and I
had two choices: to let her die or to
insert a feeding tube into her stomach,
with no guarantee she would
improve. I wasn’t ready for her to
die. Until then, I hadn’t considered
it. I kept thinking, ‘This is reversible. It’s the medication.’ I decided on the feeding
tube.”
Slowly, her mother did become more responsive and three months later was actually able to
return home where she has recovered some of her ability to comprehend and communicate.
Elana continues to manage her care successfully and said,
“I never imagined I’d have to
handle that kind of situation. Knowing I have the inner strength to deal with crisis
and hardship
has given me more confidence in myself.”
For information about the young-adult children’s support group, please contact me at
646-744-2917 or e-mail me at wpanken@alznyc.org.
Studies have shown adults with dementia who take certain atypical anti-psychotic medications increase the chance of death during
treatment. Call your doctor immediately to report symptoms, such as: slow, difficult speech; sudden dizziness or faintness; weakness
or numbness of an arm or leg.
— Wendy Panken
Manager, Support Groups
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