Health

A Relative Caregiver’s Journey Through Alzheimer’s or Dementia

It can be overwhelming, extremely challenging and intensely emotional to care for a loved one with Alzheimer’s disease or dementia, but no one has to face that journey alone.

That’s the message being shared by KUSI’s Kristen Cusato at Tuesday’s “Crucial Conversations” event to help families and seniors navigate end-of-life decisions. You can still register by calling (800) 827-4277 or walk ins are welcome at the event from 9 a.m. to 2 p.m. at the Balboa Park Club Ballroom, 2150 Pan American Road West.

Cusato quit her job during her first stint at the station and moved cross-country to care for her mother who was diagnosed with Lewy body dementia at the age of 61.

“I quit my job, I got rid of my apartment,” said Cusato. “There was no decision to be made. My mom was my best friend, and I didn’t want her to go through it alone.

“I moved back home with 14 boxes, my bike and my cat.”

More than 60,000 San Diegans are living with Alzheimer’s or dementia, and that number is expected to climb to 100,000 by 2030. According to the County’s Alzheimer’s Project, four out of five Alzheimer’s patients are cared for at home by an estimated 137,000 San Diegans.

Cusato’s story is not unfamiliar to those who have had a parent or older relative with Alzheimer’s or dementia. In most cases, one of the children or another relative will step in and become the person’s primary caregiver.

And what they are stepping into is usually very unfamiliar territory.

“I moved back in with my mom in New York and not only was I moving back in with her after years and years, but her mind was already in a different state,” Cusato said. “I had to learn to speak her language – the language of dementia.”

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You have to remember not to take anything personal because it’s the “disease talking” according to Cusato, and that can lead to feelings of grief.

“You grieve the loss of their ability to have conversations and you have a lot of one-sided conversations,” she said. “You grieve when they forget your name and you have to keep giving them love, even if they don’t acknowledge your presence.

“They still know there’s someone that cares about them deep down inside. They can feel the love.”

It’s hard, but you also have to resist the urge to constantly correct them or stress them out trying to make them remember things.

“People have a hard time,” said Cusato. “There’s a term – fiblets – which is between a fib and a white lie that we use to reduce agitation.

“You really just have to go where their reality is.”

Cusato said an example of that is when your parent tells you that they need to go pick up a child from school. They are having a flashback memory to decades ago.

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Instead of correcting or arguing with them, you distract them with a fiblet. You tell them something like the child called and is going to soccer practice so they don’t need to worry about them anymore.

This new role of parenting a parent can be very stressful on the caregiver, and it’s important they take care of themselves for their own health as well as their continued ability to care for the person with Alzheimer’s or dementia.

“Caregivers really don’t take care of themselves,” Cusato said. “They don’t eat right, they don’t rest and they don’t go to the doctor.

“People need to know they are not alone, that they can reach out for help and that there are a lot of people going through this. If you don’t take time for yourself, you will implode.”

She suggests you go to a support group or get respite care so you can take a break from your loved one and have some time to yourself.

Cusato said County efforts such as the Sheriff’s Department’s Take Me Home program and the ability to use the region’s mass notification system, AlertSanDiego, to help locate seniors who are reported missing and in danger are important.

The Alzheimer’s Association estimates that six in 10 people with dementia will wander at some point.

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Cusato’s mother passed away in 2012. After returning home to care for her, Cusato was rehired by a TV station she had worked at in Connecticut and she began working with the Alzheimer’s Association as a regional director doing education and training. She continued in that job for another year before the lure of San Diego brought her back to KUSI.

She still speaks in public about her mother’s journey with dementia and her role as a caregiver. She has a website with a blog about her experiences.

She was also a contributor to “Chicken Soup for the Soul Living with Alzheimer’s and Other Dementias.” Her entry, “The ABC’s of Alzheimer’s and Dementia for Caregivers,” provides 26 tips for caregivers to make their part of the journey a little less stressful.

Tom Christensen is a communications specialist with the County of San Diego Communications Office. Contact