When her husband’s Alzheimer’s disease progressed, Karla Hansen paid nearly $1,000 a month for a caregiver to come to their home in Waunakee two half-days a week.
Now, with his dementia more advanced, Mick Hansen goes to adult day care five days a week, which costs about $1,500 a month.
“It allows me to have some kind of life,” said Karla Hansen, 66, who still cares for him evenings and weekends while also looking after her parents, who are in their late 80s and have health problems of their own.
A bill with bipartisan support in the Legislature would create a $1,000 tax credit for family caregiver expenses, including home care aides, adult day care, equipment and transportation.
“There’s this vast uncovered expense for people at the end of life, and family members are stepping forward and contributing in a pretty meaningful way,” said Helen Marks Dicks, associate state director of AARP Wisconsin. “This is an attempt to ease the burden and the stress on the caregivers.”
The proposal — with lead sponsors Rep. Ken Skowronski, R-Franklin, and Sen. Patrick Testin, R-Stevens Point — is part of a package of bills related to dementia and caregivers. Other measures would create a certified dementia care specialist program, distribute Alzheimer’s awareness grants and let Wisconsin courts communicate with courts in other states about guardianship issues, among other steps.
Under the tax credit bill, caregivers of adult family members with Alzheimer’s or other conditions requiring assistance with daily living could claim 50 percent of qualified expenses for a credit of up to $1,000. The caregiver’s annual income couldn’t exceed $75,000 for an individual or $150,000 for a couple.
Some 578,000 family caregivers in the state spend an average of $7,000 a year on caregiving expenses, in addition to providing free care worth billions of dollars, according to AARP. Many take time off work or work fewer hours, and some reduce their retirement savings in order to pay for a loved one’s care, said the group, which represents older adults.
The Medicaid programs Family Care and IRIS pay for caregiving expenses for low-income people, and some families can afford long-term care insurance, which covers many caregiving costs. But many people pay out of pocket.
“In many ways, these caregivers save taxpayers money by keeping loved ones out of costly nursing homes that are funded or subsidized by state tax dollars,” Testin said at a public hearing on the bill last month.
The bill would cost $179 million a year, assuming 363,000 people claimed an average credit of $494, according to the Department of Revenue. Legislators hope to reduce the cost, said Marks Dicks of AARP, by lowering the bill’s income cap, reducing the tax credit amount for people with incomes near the cap and requiring the person receiving care to be a Wisconsin resident.
“If it had a lower cost, it might be easier for us to pull off,” said Tyler Clark, an aide to Rep. Mike Rohrkaste, R-Neenah, another sponsor.
Supporters of the bill include Alzheimer’s, aging and disability groups, as well as the Wisconsin Catholic Conference and the Wisconsin Personal Services Association. No groups have registered in opposition.
Elizabeth Mitchell, of Madison, cared for her 78-year-old mother, who was diagnosed with Alzheimer’s a year ago, full time until her mother got out of the hospital last month.
At that point, Mitchell hired caregivers to be at her mother’s house around the clock. The cost: nearly $17,000 a month. That would quickly deplete her mother’s savings, so she is taking over some of the hours to make the money last longer.
“I was beyond exhausted,” she said. “I needed a little break.”
Mitchell, 57, who works as a travel agent, stopped taking new clients in December so she could care for her mother. She and her husband, who is 59, wonder when they will be able to retire.
“We’re not able to be saving for when we need the care,” she said.
Hansen, a retired elementary school teacher, has watched her husband, a former physical therapist, become increasingly confused and anxious since he was diagnosed with early-onset Alzheimer’s at age 60 seven years ago.
They have long-term care insurance, for which they pay $360 a month. But Hansen isn’t using it yet because she wants to save the coverage for assisted-living memory care, which her husband likely will need soon.
That could run $6,000 to $7,000 a month or more, which could use up the insurance plan’s total benefit within a few years, she said.
For now, she’s paying out of pocket for adult day care at Northwest Dane Senior Services in Cross Plains. To keep expenses down, she and her husband live in the lower level of their son’s house. Their son helps out, but he and his wife work full time and have two children ages 2 and 5.
“If I was not living with my son, I could not afford this,” Hansen said.
Caring for a spouse with Alzheimer’s is “a tough journey,” she said, “and it’s tougher when the finances dictate so much.”