How do you go from hope after the diagnosis, to finding joy in the journey when it comes to Alzheimer's disease?
That was the topic at the second of two panel discussions sponsored by Monarch Cottage, a senior living center on Fay Avenue, which took place May 1, 2018 at La Jolla Community Center. About 35 people attended.
The five-person panel consisted of Dr. Khai Nguyen, clinical services chief at UCSD, Department of Senior Medicine; Dan Sewell, director of UCSD's Senior Behavioral Health program and co-director of its Memory, Aging and Resilience Clinic; Isabel Lozano, founder of "A Heart for Seniors" and a two-time caregiver; Cordula Dick-Muehlke, author and expert in aging and dementia; and Kimberly King, journalist and CEO of Kimberly King Media, who's presently taking care of her mother with Alzheimer's.
The event opened with the screening of a video produced by King titled "Jackie's Journey." It depicts her and her mother touring "Town Square," the newest of the Glenner daycare centers in Chula Vista, which is set up as a 1950s-style urban village. You see King and her mom, Jackie, dancing to '50s tunes, marveling at the '59 Thunderbird parked out front, and eating at the diner with her mother's other caregivers. King is also working on a documentary about her mother's journey with Alzheimer's.
King said she started as a caregiver, assisting her father who got pancreatic cancer. "It was a big shock," she told the audience. "He was a three-time marathon runner, and I didn't see it coming. I stopped to take care of my father while still raising my two teenagers. Dad died within six months."
While she was caring for her dad, her mom began to deteriorate physically, showing signs of Alzheimer's, but King didn't notice. "It took a dear friend of mine to say, 'Something's going on with your mom,' " she said. "My mom's speech was impaired and I didn't see those signs because I was so wrapped up with my father's care-giving. Now I'm caring for my mom and trying to figure out this new role."
According to the experts on the panel, King is doing everything right so far. She's keeping her mother connected to her memories and to the community, making sure she feels loved, while trying to balance her own life with the weight of her mother's demands. But there's still a long journey ahead.
Dick-Muehlke, who's worked with Alzheimer's patients for 35 years, pointed out that "one of the challenges of this illness is that it's progressive. Every week, every month, the person's brain is different than it was before. As a caregiver, you have to constantly adjust, you have to be nimble and that can be really hard to do."
Lozano's said her care-giving journey started with her son, who she said was diagnosed with cerebral palsy as an infant. "I was so overwhelmed with that diagnosis," she recalled. "But the doctors sat me down and said, 'We're the specialists, but you will become the expert with your child. In order to provide you with the best care, we're going to rely on you because you know your child best.' "
Those words helped Lozano through the next 11 years as her son's caregiver, and also helped when her mother got Alzheimer's after her son died. Lozano said she learned how to find joy in the journey by following a program offered by the San Diego Alzheimer's Association, called Memories in the Making. The program teaches caregivers how to create special memories that can be savored later. "Every day was a gift with her, and every day I knew I was making memories," Lozano's said. "Music was a big part of our lives, and that's how we made it special."
Nguyen talked about resilience for the journey.
"There's no handbook," he explained. "I think part of the resilience is just focusing on your strengths. I essentially act as a mirror in front of my patients and their families, and I tell them, 'whatever you've been doing, just keep doing it.' " He also suggested using humor whenever possible, and setting realistic expectations for caregivers and patients alike.
Most of the discussion was open to the audience. One caregiver asked how to deal with the anger, loss and grief of care-giving — especially when a loved one doesn't remember you've been there. Sewell responded: "Many of us are so devoted to members of our family that it sweeps us up and traps us. This can rob us of the value in our own lives. Find a recipe that allows you to hang on to balance in your life. You cannot grieve or vent emotions if you're exhausted."
Another audience member expressed how she found joy in the journey with her mother who has Alzheimer's. "One of the most loving things you can do for yourself is to say, 'I can't,' and then seek out help from others," she said. "There are resources out there to help." All panel members agreed that San Diego is at the top of the list when it comes to available resources for caregivers and patients.
At the end, audience members described the discussion as "fascinating" and "informative." Connie DeLonge, a chaplain and grief counselor at Ardent Hospice in San Diego, shared: "It solidified, verified and confirmed a lot of things that I'm doing now, even though I've done this for so many years. The speakers covered some areas where I thought, wow, I did that one right!"
• Alzheimer's Association of San Diego/Imperial Counties: (619) 678-8322. 24/7 Helpline: 1 (800) 272-3900. alz.org