Shifting Alzheimer's Caregiving from Crisis to Comfort
Advocacy Faces in photos fading from memory, then reality, is difficult to manage, but the founder of “Alzheimer's Speaks” wants to change the way loved ones and caregivers view the disease.
“In order to shift our dementia care, we first have to recognize and accept that a care culture exists,” says La Bey, who lost her 86-year-old mother to Alzheimer's in 2014. “It all starts with opening the door for people to have a safe place to share their stories, ideas, triumphs and struggles.”
“Alzheimer's Speaks” uses multiple platforms to give individuals, families, friends and organizations the opportunity to be heard and, in many cases, feel less isolated. The goal of both the radio show and video chats is to empower those who are more interested in learning how to live with the disease than becoming the disease.
“They're looking for a tool kit to continue to live purposeful lives,” explains La Bey. “Most will say it's good to get diagnosed, yet many doctors are not informed, or give very little in terms of support to those living with the disease, other than another appointment and possibly a prescription.”
“It was about letting go of control, spreading grace and creating joy in all moments of life...”
An emotional journey
La Bey's mother, Dorothy, began displaying Alzheimer's symptoms in her mid-50s: “For the first 10 years, she was misdiagnosed, and was told it was her hormones. In her early 60s, she was finally properly diagnosed and we were told she had the mentality of a 3-year-old.
“We kept the diagnosis private for an extended period, thinking we were protecting Mom and preserving her dignity,” she continues. “Looking back, that was a mistake.”
A blessing in disguise
“In my darkest of times in dealing with the disease, I learned to ask one powerful question: 'What is the lesson?'” adds La Bey. “To my surprise, each and every time I asked that question, I received the ability to see the answer.”
For La Bey, it was about letting go of control, spreading grace and creating joy in all moments of life — no matter how difficult. “There are so many gifts wrapped in all of life, including aging and illness, but we can only find what we are looking for.”
La Bey says we must go beyond providing groups where caregivers can complain about their lives, but actually get resources and support to assist them in helping themselves and others. She adds, “We need to understand and respect that dementia is not a disease of one, but of society. We all impact one another, and have the power to create change and improve the world.”