Life Connected

‘Beyond Alzheimer's' Connects People Whose Loved Ones Suffer From Alzheimer's, Dementia

Former First Daughter Patti Davis, founder, helps those whose loved ones suffer from the disease

Heartbreak, guilt, stress and loneliness — that's how many feel watching a loved one slip away from Alzheimer's disease.

But for Patti Davis, her dedication does not waver. Despite recently losing her mother, former First Lady Nancy Reagan, she is still determined.

"I've gotten so many things wrong in my life, particularly with my parents. I have to get this right." said Patti, whose father, Ronald Reagan, died in 2004 due to complications from Alzheimer's disease.

Through the support group Beyond Alzheimer's, the former First Daughter has found a way to connect to others whose loved ones are suffering with Alzheimer's disease or dementia.

"I've wasted a lot of time in my life with my acting out and my rebelliousness," she said. "This group is one of the most important things that I've ever done."

The free support group is now moving from the UCLA Medical Center to St. John's Health Center Foundation in Santa Monica.

"In the 10 years that my father was ill, no one ever asked me how I was doing," Patti said. "I realized that it wasn't just me — this was a common occurrence in every family. The caregivers and the family members were never asked how they were coping and how they were doing."

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Patti now has the chance to sit and share with others in Beyond Alzheimer's twice a week.

"When people come into this room and participate in this group, they are no longer strangers to one another," she said.

Greg Lewis, of Pacific Palisades, lost his father to Alzheimer's in 2016, and is now slowly saying goodbye to his mother, Sylvia.

It is a journey he is not taking alone.

"It's particularly difficult if this is a person that you've known for their whole life," said Scott McCauley, who also has a mother with Alzheimer's.

Another member who has leaned on others for support in the group, Florie Brizel, says her mother is also suffering with Alzheimer's.

"I think what drives all of us to keep coming here is the fact that it is safe," she said.

In Beyond Alzheimer's, privacy and confidentiality are guaranteed, and doctors attend the sessions as well to help try and understand a disease affecting more 5 million Americans. Patti said when it comes to Alzheimer's, caregivers and family members should be treated as patients as well.

"My mother came to the group twice when I first started it. It meant a lot to me that she wanted to come," Patt said. "She said to me, 'I was so surprised by the some of the things that came out of your mouth. They were very wise.'"

The group comes together by the need to connect, later realizing these are connections to keep.

"This is our family of people who we would never know otherwise, but who are so much a treasured part of our lives," said Paddy McCauley.

Patti said every person who comes to the support group is heroic.

"It's heroic to face every day with a relative or a husband or a wife who is leaving you before your eyes," she said.

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