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Alzheimer's Association, New York City Chapter

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A Seven-Layer Cake

Sara’s house is organized chaos. With 9 children, 6 still at home (one with special needs), two married daughters with children who visit frequently and assorted nieces and nephews, how could it be otherwise? But it all works, thanks to Sara’s gifts as a master strategist and buoyant sense of humor. As is customary in Orthodox Jewish families, Sara’s children attend Yeshiva (religious school) involving a full day of regular studies and an added religious curriculum. All the children ranging from 7 on up have household chores, including the responsibility of making their own beds and putting away their clothes. On the Sabbath, without fail, the entire family comes together to rest and enjoy one another’s company.

“I demand a lot, and I have my mother and father to thank for that,” Sara says. Her mother emigrated from Germany before the war and her father survived the Holocaust with the help of a gentile (non-Jew) who hid him from Nazi persecution. Her parents ran a watch repair business and later, a jewelry store. Sara’s mother was the saleswoman while her father made repairs. Her father’s experiences in Europe and her own upbringing in multi-ethnic Washington Heights shaped Sara’s expansive outlook and profound respect for people of all cultures.

Most remarkable is that Sara is also the caregiver for her mother, who has Alzheimer’s. After her father’s death, her mother kept the jewelry store going until customers began to notice changes. At that time, her mother lived alone in Washington Heights, growing increasingly forgetful and suspicious. The events of 9/11 provided the impetus for Sara to relocate her to Brooklyn,where she has her own room and bathroom on the bottom floor of Sara’s house. Sara and a friend joke, “We’re not the sandwich generation, we’re a seven-layer cake!

Although the family understands that strong-minded, independent “Oma” is frustrated by her illness and loss of control, caring for her has not been easy. She accuses family members of stealing from her, and in recent months has become “angrier and angrier.” Mealtimes are a challenge, as she often needs to be cajoled into eating by Sara, who transforms into a “one-woman entertainment committee.” One of her children is able to make Oma laugh at the drop of a hat by imitating one of his teachers. Hygiene has been a particular challenge. Sara has learned not to force the issue. She tries different strategies, like giving her mother a haircut so she feels like taking a shower. Sometimes it works, other times it doesn’t.

Sara believes strongly that caregivers need support. In her case, this includes daily prayer and exercise and using the Chapter as a sounding board. She reached a point during the past year when it was impossible to go on without outside help. With all her children finally in school, she had anticipated having free time. Instead she found herself unable to leave her mother alone. Introduced to the NYC Chapter through her brother-in-law but unable to come to meetings, Sara developed a lively telephone relationship with the Care Consultant. Over the past six months, her dementia-care skills have improved through what Sara calls OJT: On-the-Job Training.

Sara’s brother-in-law took up the banner of helping her obtain Medicaid home care, which was recently approved. While it was pending, the Chapter provided a respite grant from our Child and Youth Fund. “Oma” now has an aide for 8 hours a day. Sara marvels that the worker, who hails from Haiti, speaks excellent Yiddish and is versed in keeping a kosher kitchen. Never one to sit on her hands, Sara wrote a letter to the home care agency singing her praises.

Sara now feels able to leave the house for more than a few minutes at a time. The family still often feels on pins and needles, wondering if today will be a good day or a bad day. But with the support of her husband (“a saint!”) and older children, Sara is increasingly able to weather the ups and downs of dementia. She finds reward in a simple nighttime ritual, resting with the knowledge that on some deep level her mother appreciates her efforts. When she tucks her into bed, her mother hugs her and says, “Thank you. Thanks for everything.”

If you would like to meet with a care consultant, please call the Chapter at 646-744-2900 or our 24-hour Helpline
at 800-272-3900. Caregivers featured in this series have agreed to share their stories. Names have been changed to protect their anonymity.

— Amanda Leis, LCSW
Director, Helpline & Care Consultation

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