LOS ANGELES (CBS) — In a story you will only see on CBS2, Patti Davis — Ronald Reagan’s daughter — talks about “Beyond Alzheimer’s,” an Alzheimer’s support group she co-leads at Ronald Reagan UCLA Medical Center.
The group is for caregivers and for family members of Alzheimer’s patients.
Davis recalls that when her father was given his diagnosis back in 1994, even less was known about the crippling disease. “We were so in shock, we did not know what to expect. First thing I thought ‘My father’s soul can’t have Alzheimer’s…he can’t be sick.'”
She remembers the day her mom got the news. “She remembers asking our family doctor ‘What will happen, what should we expect? And he said ‘I do not know.'”
A disease that even baffles doctors offers no comfort for those who have to battle it. “There were so many unknowns, no one could give us information,” Davis says. “I felt so isolated and so lonely…I went through a decade of losing my father. No one to talk to. No support group to talk to.”
In the eight years since he died, Davis has made it a mission to help other families through the trauma. “My hope is to help people look at a different way of coping with the disease.”
These days, she co-leads a support group at the hospital named for her father.
The suffering that Alzheimer’s patients go through is well-documented. Very few remember the pain of the family or caregivers. Davis wants to change that. “The disease affects the whole family. ”
She likes to tell caregivers that they need to also take care of themselves. “You have to take time for yourself,” Davis says, “than you are better able to care for your loved one.”
Without a support group to help her, what did Davis lean on for her own strength? “What got me through was remembering the things my father taught me about faith and God.”
For more information about Patti Davis’ caregivers and family group, click here.
For more information about UCLA Health System, click here.