An estimated 48 million Americans are providing care to an adult family member or friend.
For Green Valley caregiver Tony Dinardo, it was never a question. When his wife’s illness forced her early retirement in 2003, Dinardo became her full-time caregiver, often driving hours for appointments with specialists in several cities.
“A lot of people wonder, well, what’s my purpose in life? One of mine is definitely taking care of my wife. I feel it’s a calling,” he said.
While many caregivers feel the role has given them a sense of meaning, a 2020 analysis of caregiving in the U.S. found these positive emotions often coexist with feelings of emotional stress and physical strain. About one in five caregivers reported feeling alone, and another one in four find it difficult to take care of their own health.
A recent survey by the U.S. Centers for Disease Control and Prevention also shows that the COVID-19 pandemic has compounded the challenges caregivers face. According to the report, 70 percent of parents and unpaid caregivers of adults experienced adverse mental health symptoms during the pandemic.
But the study also confirmed that support can make a big difference – respondents who had someone to rely on for help had lower odds of experiencing any adverse mental health symptoms.
A few local efforts aim to do just that – providing more support, and even some relief, to local caregivers.
‘Self-care is essential’
Though she only recently started thinking of herself as a caregiver “with a capital C,” Francene Orrok dove head first into the role after her husband, Tim, was diagnosed with mild cognitive impairment, and later Alzheimer’s, seven years ago.
“The first thing that kicks in is vigilance. The things he normally did, I just had to immediately add to my list. As a friend of mine said, you become responsible for everything,” Orrock said.
As time goes on, she said, the list just keeps growing.
“That period where I’m adding things to the list that I have to look out for, that’s a costly time. You’re thinking you’ve got to look out for this and that, and that’s fine when you’re in your 20s, but it’s a whole different thing when you’re 84,” she said.
When stress and chronic lung issues began taking a toll on her, Orrok came to the realization that her well-being could no longer take a back seat.
“I realized that his welfare is entirely dependent on my welfare. We’ve got to take care of ourselves because the person that we love is dependent on us to do that,” she said.
“To be a good caretaker, self-care is essential.”
It’s a message that Denise Turner, an organizer with Arizona Lifespan Respite, hopes will resonate with all caretakers.
“Sometimes, what they really need is just someone to step in and take care of their loved one while they take care of themselves,” Turner said.
This month, in partnership with the Arizona Lifespan Respite committee and Green Valley Parkinson’s Support Group, Valley Presbyterian Church aims to provide that relief for family caregivers through a day of respite.
Entertainment, activities and lunch will be provided to family members who can benefit from socialization and engagement, allowing caregivers to enjoy a day of rest, self-care or to “just do whatever they want,” Turner said.
“The caregivers’ needs are mostly time – time to themselves to get things done. And there’s not a lot of opportunity for that. It’s not easy for them to find a neighbor or support system that can actually fill in for the day-to-day needs of their loved ones,” she said.
During the pandemic, caregivers also found it difficult to find a network of people to share their experiences with – many in-person support group meetings were replaced with virtual gatherings, or canceled altogether.
Since moving to the Green Valley area almost a year ago, Dinardo has been looking for ways to support caregivers, like himself, and decided to start his own: “A Safe Harbor for Caring Hearts.”
“If you’re caring for somebody, this is the group to just come and breathe for an hour and cry, or get angry, stomp your feet or share success stories – all those things,” Dinardo said.
Charlene Ostlund, whose husband was diagnosed with early onset Parkinson’s Disease in 2000, has seen first hand the impact that these groups can have on mental health.
“I don’t think people realize how helpful the group is to the partners and family members. In the early years, I attended the group meetings and didn’t say a word but listened and learned. The support from others experiencing the same issues I’m experiencing is priceless,” Ostlund said.
Oslund has since taken on a leadership role with the Green Valley Parkinson’s Support Group in an effort to give back even more to caregivers like her. She will also be partnering with the Arizona Lifespan Respite committee to host the upcoming respite day, with hopes of making it a monthly event.