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A grandmother’s legacy: a caregiving granddaughter

A grandmother’s legacy: a caregiving granddaughter
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April 27, 2020
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Nicole-Hensel-sithu.jpgSome people truly are larger than life. They influence more lives than they ever imagined. Politicians like John F. Kennedy and Abraham Lincoln. Social and religious leaders like Martin Luther King and Mother Teresa. Poets like William Shakespeare and Emily Dickinson.

Sometimes these inspirational figures are humbler, and live in our own homes. Their personal sacrifices aren’t visible to the outside world, but they leave an indelible impression on their family.

Margaret Simon was just such a person. Albeit a tiny woman – just 5-foot-2 in her prime— she lived with a fiery passion for her family. She had to. The daughter of Lebanese immigrants, Margaret was widowed at age 36 with five daughters aged 6 months to 12 years-old. She had to go to work in her hometown of Detroit: department stores, factories…she even became a union leader. She lost a couple of fingers on the job, but never lost her focus on her girls.

“My sithu (Lebanese term for grandmother) was the matriarch of the family,” said Coloradan Nicole Hensel. “She was an incredible woman with a strong sense of right and wrong.”

A diagnosis that changed a family
But tragedy wasn’t through with Margaret Simon. She was diagnosed with younger-onset Alzheimer’s disease in her 60s, and then it was time for her daughters to turn the tables and care for their mother.

“My mom and her sisters took on an enormous amount of caregiving,” said Nicole. “My mom felt a personal responsibility. When she first came to live with us, she’d leave the house to knock on neighbors’ doors, asking everyone if they were Lebanese. What at first seems funny and quaint eventually became sad and tragic as she lost her memory and identity.”

The decision to care for their mother in their own homes was an obvious one for the Simon sisters.

“They knew how much of her life had been dedicated to them,” said Nicole. “She (Margaret) never remarried. Her whole orientation was toward her girls. That’s the same way my mom and her sisters cared for my sithu – wanting to give her a life of dignity and care.” 

By the time Margaret was diagnosed with Alzheimer’s, her daughters had spread across Michigan, Massachusetts, and Florida. One of the five sisters took Margaret into her home for a period, then Nicole’s mom, feeling a personal responsibility to her mother, moved Margaret to Florida to care for her there.
“It was a good decision to make,” said Nicole, who was in high school at the time. “She came to live with us for just under two years, but then things went from bad to very bad before we needed to move her into a memory care facility. It was a draining process.

“Caring for my sithu taught me to get out of my bubble,” said Nicole. “I was very engrossed in my own teenage life, my own perceptions. Helping to care for her allowed me to see a broader sense of duty to others – even beyond our immediate relatives.”

A lasting impression
Those lessons have helped shape Nicole’s career and outlook on life. She started her career as a kindergarten teacher in Montbello, and later in a master’s program at Stanford, she cofounded an organization focused on mobilizing students, teachers, parents and community members around a shared vision for change.

Today, Nicole has found a new professional home as executive director of New Era Colorado Foundation & Action Fund, an organization committed to reinventing politics for young people, mobilizing and empowering a new generation to advance progressive change.
 
“We’re focused on the role that young people play in moving our society forward,” said Nicole, “Young people often push us beyond what we think is possible. Yet, it is our older generation that provides our traditions and sense of wisdom. So many young people have had lasting relationships with elders in their communities, and we value the impact that older generations have on young people.”

Full circle
While Nicole has a professional passion for building bridges between generations, her own family has added links in that chain. Her mother-in-law, Suzanne Belser, has worked in senior roles for the Alzheimer’s Association in Montana and Alaska.

“I’m passionate about the mission of the Alzheimer’s Association and the importance of sharing the stories of the lives impacted by this disease,” Nicole said. The sense of passion, commitment and duty that the women of the Simon family had for their sithu carries on, breeding new larger-than-life people who will inspire others.

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The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.

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