There’s days when I cry, days when I’m mad, and days when I’m going to do something about it
Cindee Sanchez Gierhart is breaking stereotypes and defying expectations, not because she wants to, but because it needs to be done.
Cindee is a Greeley-born and Pierce-raised Latina (“we call ourselves ‘native’”) who is living with an unenviable legacy: her family on both sides is prone to developing Alzheimer’s disease. Her father is living with it and his father and grandmother died from it. Her mother and her mother’s 95-year-old mother are both living with the disease, and her great-grandmother died from Alzheimer’s.
And Cindee is on the caregiving team for both parents and her grandmother.
Anyone who cares for a loved one with dementia knows what a drain the experience can be. Caring for three is above and beyond the call of duty, defying expectations.
As for stereotypes, Cindee is defying a cultural tradition: Latinos care for family members at home, even with a disease as debilitating as Alzheimer’s. And they don’t talk about it.
“Our community hides it, especially from children,” observed Cindee. When Cindee and her sister attended a recent Alzheimer’s Association of Colorado event specifically aimed at the Latino community, the sisters looked at one another when the ‘secrecy’ topic was broached and said to one another: “that’s our family.”
Even though Latinos are 50 percent more likely than whites to be diagnosed with Alzheimer’s, there is still a stigma surrounding the disease. It doesn’t get discussed publicly, and the situation is handled inside the home.
“It’s great for the facts to be said out loud,” Cindee said about the higher risks Latinos face from Alzheimer’s, “but those who put family members in care facilities are still ostracized.”
The cultural challenge of Alzheimer’s
The youngest of five siblings who range from 44 to 49, Cindee wrestles with the expectations of her family members. Realizing the magnitude of dealing with multiple family members with dementia, she helped get her mother and grandmother placed in care facilities. Her father still resides at his home with Cindee’s stepmother. Cindee and her stepmom have already considered the changing aspects of her dad’s future with Alzheimer’s and have obtained a power of attorney and medical power of attorney.
But taking responsibility for ensuring the welfare of loved ones is not the same as meeting expectations.
“In my family dynamic, everyone has input on critical situations,” Cindee said. “At times, tensions ran high and not all of us were sure how care should be provided.” Ultimately, Cindee partnered with her oldest sister and stepmother to put the family wishes into action.
“I’ve got too many people to care for to worry about what other people think,” she said. “When dad and mom were getting their diagnoses, we were in emergency mode and only a few of us could help out. I quickly realized that my family is traveling the same path; we’re just not in the same place at the same time. We’re in different stages of grieving.”
Knowledge is power
When Cindee learned of her parents’ diagnosis and saw the pattern with older family members, she immersed herself in the topic of Alzheimer’s disease.
“I’m a scholarly person,” she said. “I want to investigate and research.” That led her to research the topic online, explore the Alzheimer’s Association website (www.alz.org/co) and even sign up for TrialMatch, the Alzheimer’s Association’s system for matching individuals with ongoing research trials.
It wasn’t until Cindee met Kelly Osthoff, director for the Alzheimer’s Association’s Northeast Colorado regional office, that she began to fully understand the breadth of services that would benefit her and her family.
“In the past few months, I’ve taken ‘Introduction to Dementia,’ ‘Living with Alzheimer’s: For Early Stage Caregivers’ and then ‘Effective Communication Strategies,’” she said. “The communication class is very beneficial, particularly in the early stages when your family members are still high-functioning. You can’t tell what they’re really thinking, and it’s so easy to get offended. My feelings get hurt so easily. The class helped me understand that the communication aspect of what my mom and dad are trying to tell me is not what I’m hearing.”
Even with that immersion, Cindee admits “I don’t feel like I’ve scratched the surface of the classes and groups” the Alzheimer’s Association offers. She has just begun to get engaged with a support group, and found the experience “a healing – and very emotional, but it’s hard to step out of your comfort zone and let others see you so emotional. It’s good to see there are other people trying to take care of their mother or grandmother, praying for the same things I’m going through.”
Seeing herself as ‘fortunate’
While no caregiver for a loved one with Alzheimer’s would see themselves as fortunate when faced with three family members living with the disease, Cindee does manage to describe herself that way. The fact that her husband is 100 percent supportive of her caregiving, and his job enables her to devote extensive time to caregiving without taking a job outside of the home, gives her the flexibility that many others do not have – even considering that Cindee also cares for three children of her own.
“If I had a job, I would have had to quit when my mom’s condition changed so quickly,” she says. “There’s days when I cry, days when I’m mad, and days when I’m going to do something about it.”
Cindee decided to do something about it recently. In observance of The Longest Day, the Alzheimer’s Association’s annual fundraiser that recognizes that every day of living with Alzheimer’s is ‘the longest day,’ Cindee went on a 13-mile hike. Also, her stepmom created a family team for the Alzheimer’s Association Walk to End Alzheimer’s.
“It’s immeasurable healing for my family to do this together,” she said. “I want The Longest Day and the Walk to End Alzheimer’s to be events that get my family, especially my siblings, into this fight with me a little more.
“My siblings and I were all so close, and then everything happened at once. It broke us,” Cindee added, with tears in her eyes. “I feel that right now, we’re all healing a little bit more, but our relationships can never be the same because our parents are going through this. This disease has stolen our parents, our grandparents and our great-grandparents, and our positions as daughters and son. We are now caregivers to our parents, and it feels like our place as children is null and void.”
Doing something about it
Cindee will not stop at being a caregiver. She has become an evangelist. She is passing out cards to family and friends with the phone number of the Alzheimer’s Association’s 24/7 bilingual Helpline (800-272-3900). She is constantly spreading awareness of Alzheimer’s in everyday conversations. And she’s looking forward to participating in more educational programs and support group sessions to both learn more about the disease and to learn to deal with a stress level that is “something I’ve never experienced before in my lifetime.”
Cindee is already looking ahead to the Greeley Walk to End Alzheimer’s, set for Sept. 30 at Bittersweet Park. Her family’s team is Sanchez Family. The 11 Walks to End Alzheimer’s around Colorado are the primary fundraising tool for the Chapter to continue offering educational programs and services at no charge to Colorado families.
In the meantime, Cindee and her husband, Dennis, are celebrating their 15th anniversary. And, wasting no time, she’s already picked out the title for the book of her life: “Juggling Absolute Craziness.”