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Family Caregivers In Arizona Are Struggling With Burnout And Isolation During COVID-19

By Kathy Ritchie, Lauren Gilger
Published: Monday, November 16, 2020 - 5:05am
Updated: Monday, November 16, 2020 - 7:43pm

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Coverage of aging is supported in part by AARP Arizona

caregiver, alzheimer
Tina Rodrigues
"It's almost as though I've somewhat lost my own identity. I feel like my identity is built around, ensuring that he has what he needs. And sometimes it feels a little selfish that you think that way," said Tina Rodrigues

Eight months after the country shut down due to the coronavirus pandemic, family caregivers continue to struggle. Even though restaurants, gyms and schools are mostly open for business, many of the respite services caregivers relied on, like adult day programs, remain closed. The price? Caregiver burnout.

Meet Tina Rodrigues.

"So, we get up about 5:30, quarter to six every morning."

She's talking about how she and her husband, Kevin Rodrigues, start their day.

caregiver, alzheimer
Tina Rodrigues
Kevin Rodrigues has younger onset Alzheimer's. He is 56 years old. His wife, Tina, is his fulltime caregiver. During the coronavirus pandemic, Tina has felt isolated.

"I wake up, I say, 'Good morning.' ... My husband will stay in bed until I get out and come around and assist him out of bed. He doesn't have the thought process to put his feet down on the floor and get himself up out of bed."

Kevin has younger onset Alzheimer’s disease. He’s 56.

"Then we get up and go to the restroom, she explained. "I need to walk my husband to the restroom, and assist him in that process. Then take him to the sink, help him wash his hands, get his toothbrush ready for him, give him some assistance to brush his teeth. And then we start getting dressed for the day."

Tina Rodrigues is her husband’s full-time caregiver. She also has a full-time job, though she’s been working from home during the pandemic. Which means checking in on him periodically, taking him to the bathroom and preparing lunch. 

"And we just do that routine every single day," she said. "It's like Groundhog Day."

Before the coronavirus, she relied on family and friends who would take Kevin out for a cup of coffee or even to a yoga class. But then, everything stopped.

"My husband is, obviously, the focus of our world right now."

And she is doing everything she can to keep her husband comfortable and safe. But it takes a heavy toll.

"You know, I miss my husband, my partner, my best friend, really, you know. On a day-to-day basis, it does feel very lonely and depressing sometimes."

Tina is not alone. Meet Vicki Plummer.

caregiver, alzheimer
Vicki Plummer
Vicki Plummer's husband, Tom Miller, has Alzheimer's disease and Lewy body dementia. After months of trying to care for Tom on her own, she decided to take a risk and send Tom to Benevilla's adult day program. It has been transformative.

"Well, we tried to make the best of it at first," she said. "We would look up things on YouTube, like, we were doing chair yoga."

But days turned into weeks and weeks into months.

"Well, I felt more and more isolated."

Plummer’s husband, Tom Miller, has Alzheimer’s and another form of dementia.

Alzheimer
Alzheimer's Association (2018)

"And I did finally get to the point where I was just exhausted from trying so hard."

She was also starting to dread those long days. She was getting frustrated. And her husband was getting worse.

"When we met with a neurologist, I said, 'I feel like Tom has declined since COVID started.' And he said that he'd had a number of patients say the same thing."

While there is no cure for Alzheimer’s and no real way to slow its progression, research has shown that social interaction can improve a person’s quality of life, diminish feelings of depression or anxiety and even help with some dementia-related behaviors, which can stem from unmet needs. 

For people living with dementia, that engagement can happen at a place like Benevilla, a family resource and adult day center in the West Valley. Lisa Minette is the senior director of life enrichment at Benevilla, which closed last spring due to COVID-19.

"We had seen quite a few placements occur from our members that probably wouldn't have been placed into long-term care had they been able to continue to come to our programs," she said.

They’ve since reopened. 

"It was really clear to us that they really did need what we were doing," she explained. "I mean, we knew that we had an impact. But I think COVID made it extremely clear that having Adult Day services is definitely a benefit for both the member and that caregiver."

Even before they reopened in September, staff did connect with members virtually, but it wasn’t the same. 

Minette mentions one caregiver who has struggled to care for her husband during the pandemic:

"All they had was each other," she said. "And those nonstop questions and the following her around the house, and needing something to do, and not understanding why they couldn't go do things.

It took a toll on that caregiver.

caregiver, alzheimer
Vicki Plummer
Tom Miller holding one of the kittens he and his wife foster. Vicki Plummer says this is one of Tom's joys. Fostering the kittens has been a saving grace during the pandemic, she says.

Lori Delagrammatikas is the executive director of the National Adult Protective Services Association, which partners with agencies and organizations across the U.S. to report and respond to victims of elder abuse.

"When the pandemic initially started, the number of reports we got went way down," she said.

Thatwasn’t surprising. People were staying home. But as the country reopened:

"Most of our agencies are saying they're up to, and in some cases, exceeding pre-COVID numbers."

Something else that worries Delagrammatikas? Caregivers reaching their breaking point.

"When you have caregivers, essentially trapped in the house with the person they're taking care of. With no real outlets," she says it can wear even the most patient person down, and that could lead to physical or emotional abuse. Which makes adult day programs and other respite services vital lifelines to caregivers who are struggling, especially now, and need just a little time and space to breathe and recharge.

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