“My mom would be so proud of me,” Lori Alexander said, holding back tears. “She helped everyone, even when it would take away from her own. That’s just who she was, and that’s who I am; who she taught me to be.”

Alexander received news of her mother’s frontotemporal dementia diagnosis five years ago, on Mother’s Day. After the initial shock, the news slowly began to make sense of her mother’s unrecognizable actions and behaviors, ones that caused compromised relationships and heartbreak over the years.

“Before that, none of us knew what was happening; we just knew something horrible was happening,” Alexander said. “Something that took her and her beautiful spirit away. She was no longer the mother who raised, nurtured and loved me.”

The diagnosis brought a shift in perspective that led to sympathy, forgiveness and an even stronger desire for reconciliation to find love through the heartache.

“She was the very best mom she could be and it is so unfair to lose her. This way, especially,” Alexander said.

Now, Alexander is taking on the role as chair of this year’s Santa Maria Walk to End Alzheimer’s, opening up publicly about her story of family struggle and devastation as a way to bring awareness to the disease and available resources.

The Alzheimer’s Association free support groups, education classes and 24/7 helpline are all resources used by Alexander to help her gain a deeper understanding, encouragement and advice throughout difficult times.

“Our roles have reversed and I became the ‘mother’ in many ways for her,” she said. “She is unrecognizable in body, mind and spirit. This disease has robbed us all of her sweet, tenderhearted intentions. We continue to struggle through the grief daily.”

One thing that has not changed about Alexander’s mother is her love for all things Jesus, from Jesus T-shirts to handkerchiefs. Alexander often buys her mother pieces of clothing that say “Jesus” or sends photos of items via text or email, knowing it will make her smile.

The Walk to End Alzheimer’s is the world’s largest event to raise awareness and funds for Alzheimer’s and dementia care, support and research. As the chair for the Santa Maria Walk, set for Oct. 2 this year, Alexander is passionate about bringing hope to her community.

“I will continue on this mission to bring awareness to as many as I can possibly reach to save them from the heartache and struggle that [my family] endured,” she said. “Even if I can help just one family that is struggling with their loved one, that is why I’m doing this.”

To donate to Lori Alexander’s Walk team, go to https://act.alz.org/site/TR?team_id=678005&pg=team&fr_id=14300. To be part of the team, visit act.alz.org/santamaria.

The Alzheimer’s Association 24/7 support helpline can be reached at 800-272-3900. Additional resources such as online support groups or education classes can be found at alz.org/CACentralCoast.

Janelle L'Heureux Boesch is communications manager for the Alzheimer's Association California Central Coast Chapter. She can be reached at 805-892-4259, ext. 1918, alz.org/cacentral or by email at jlheureux@alz.org


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