Wisconsin caregivers battle burnout and fatigue

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Caring for her aging parents seemed like a win-win situation for Gail Carriveau in 2013: it would save money, allow Carriveau to make timely and informed decisions on behalf of her parents, and provide some autonomy in their last years.

But when Carriveau’s mother died suddenly 10 months after moving them to a house near hers in rural Freedom, Carriveau, who did landscape maintenance before retiring, realized that ‘she should make more sacrifices to accommodate her father’s progression of dementia. .

“I was always trying to do landscaping and take care of my dad,” said Carriveau, 64. “Three days a week I dropped him off at adult daycare. He was doing pretty well there.”

In the brief 7:30 a.m. to 3 p.m. window on daycare days, Carriveau could work with his landscape clients, pick up groceries, run errands, and occasionally make changes to his home — installing motion lights in the hallway for her ‘ I know when her father got up to go to the bathroom, for example, to improve his care system.

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His father passed away in 2018, but adult daycare has offered Carriveau an increasingly rare respite due to competing issues: adult daycare centers closed due to COVID-19 and an increase in the number of caregivers. families at an alarming rate. In fact, AARP reported that since 2015, there has been a 26% increase in the number of Americans caring for someone with Alzheimer’s disease or dementia.

Additionally, direct care staff, professionals trained to provide care at home, have been in crisis since long before the pandemic, according to Devon Christianson, executive director of the Brown County Aging and Disability Resource Center.

In other words, more families are caring for loved ones, have fewer resources for the long and sometimes arduous journey ahead, and often have other obligations ranging from part-time or full-time employment to custody of their own children.

The numbers look grim both in the states and at home.

According to the Wisconsin Department of Health Services, the state has a total of 115 adult day care centers, commonly referred to as ADCCs. That’s a problem for the 115,000 people in Wisconsin diagnosed with dementia in 2015, a number that is expected to more than double by 2040, according to DHS.

Christianson said shortages of professional home caregivers and adult day care centers have increased the burden on family members, who are often untrained in dementia care and often don’t have enough time. to devote to such care.

“Caregivers are stressed beyond belief because they’re often working, often they’re women — not always, of course, but often — who may have children of their own at home,” Christianson said. “They have aging parents or a disabled adult child, and they have to manage it all while keeping their heads above water.”

According to the Survival Coalition Consumer Survey published in 2016, 85% of Institutes in Wisconsin do not have enough direct caregivers to cover shifts and 95% of respondents said it was either “very difficult” is “quite difficult” to find caregivers.

Compounding the shortage, adult child care centers closed or severely limited capacity, Christianson said, making it especially difficult for family caregivers to find respite from their day.

According to the Governor’s Task Force of Caregiving, released in September 2020, 64% of people with intellectual or developmental disabilities live with caregivers. Of these informal caregivers, 25% are 60 or older.

And according to the Wisconsin Family and Caregiver Support Alliance’s 2019 Caregiver Survey, which surveyed more than 600 caregivers, 91% are women, 74% never ask for help, and 73% don’t respond to their calls. personal needs.

The emotional toll of caregivers

During her years of caregiving, Carriveau enjoyed gardening and weeding in her yard, but she could never fully concentrate on the task at hand. Her father was out with her, digging up dandelions and picking up sticks.

As idyllic as it may seem, Carriveau’s attention was always divided. She had to watch him to make sure he didn’t wander off. Whether she’s gardening or sleeping, her father’s action demands attention to detail.

In grocery stores, he can approach strangers and act like he “has no filter and say things he never would have said (before dementia).” Carriveau would apologize on her father’s behalf, but she would not say that her father had dementia.

The respite, or lack thereof, has only gotten worse during the pandemic, said Kristy Millar, resource navigator for the Fox Valley Memory Project, a collaborative nonprofit that creates dementia-friendly spaces in the north. -eastern Wisconsin.

Where respite centers once allowed family caregivers a break and also allowed people with dementia to socialize, the pandemic has cut people off from each other.

“When you experience personality changes, you’re already going to want to self-isolate and walk away, but the pandemic has forced them to walk away,” Millar said. “COVID hasn’t been good for our children and it hasn’t been good for our elders.”

Millar explained that the new generation of family caregivers are increasingly green, having inherited responsibilities following the irreversible fall of a loved one or a debilitating illness. Others, more veteran caregivers, are exhausted after wave after frustrating wave of COVID-19 variants and subvariants.

Some caregivers will call the Fox Valley Memory Project with specific concerns and ask for a list of resources. Other times, Millar said, they just need to vent.

“Sometimes they call because they’re like, ‘My dad does this thing and, I don’t know, it drives me crazy. I don’t know what to do about it,'” Millar said. “Few of us know about dementia until we experience it.”

It’s a grieving process, said Sarah Swant, another Fox Valley Memory Project resource navigator. Before a dementia diagnosis, caregivers had retirement plans, travel plans. a different sense of family roles.

“You have to mourn the future you had planned for that person,” Swant said. “At the same time, you deal with this changing person on a daily basis and your roles change.”

Resources

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Natalie Eilbert covers mental health issues for USA TODAY NETWORK-CENTRAL WISCONSIN. She welcomes story tips and comments. You can reach her at neilbert@gannett.com or check out her Twitter profile at @natalie_eilbert. If you or someone you know is having suicidal thoughts, call the National Suicide Prevention Lifeline at 800-273-8255 or text “Hopeline” to the National Crisis Text Line at 741-741.

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