By Joanne Cleaver
Genie Deutsch makes more than lemonade from lemons.
She includes lemons in many dishes for her husband, Stan, as she manages the nutritional needs dictated by his end-stage renal disease. With many ingredients banned, lemon is one flavor he loves that he can have.
Deutsch, 85, of Fox Point, is the primary caregiver for her 90-year-old husband. “I’m probably doing more than I think I am,” she said. Constant coordination with medical professionals shapes her daily routine, leaving limited time for friendships—though she makes sure she gets in a daily swim.
Support for family caregivers like Deutsch is getting more attention as the Wisconsin Legislature and Congress consider ways to address the financial and logistical impacts of caregiving.
The proposed Caregiver Advise, Record, Enable (CARE) Act will be before state legislators this fall. The bill would require hospitals to let every patient designate a caregiver, to notify that person when the patient is discharged and to instruct the caregiver on follow-up tasks for the patient. More than 35 states have enacted a version of the bill.
“It gives caregivers the knowledge they need to be confident with what they’re doing, whether that’s wound care, medication management or daily care,” said Helen Marks Dicks, AARP Wisconsin state issues advocacy director.
A state tax credit is also under consideration. It would reimburse family caregivers up to $1,000 a year for costs such as transportation and equipment, including walkers and lifts.
Proposals in Congress
In Congress, Sen. Tammy Baldwin (D) is focusing on “some much-needed tax relief” for family caregivers.
She is cosponsoring a bill to provide working caregivers with an annual tax credit of up to $3,000 to offset expenses, and another measure that would funnel funds to local organizations to pay for short-term help that gives family caregivers a respite.
Baldwin also champions the RAISE Family Caregivers Act, which would create a national strategy to support them.
“Although this work can be very rewarding, it can also be emotionally and physically challenging,” said Baldwin, who was a caregiver for her grandmother.
A 2015 AARP survey found that 578,000 Wisconsin residents were providing 538 million hours of unpaid caregiving services at an estimated annual value of $7 billion. Without such care, there would be a large burden on state and federal budgets.
Meanwhile, individuals and organizations are launching services that deal with some of the pressures weighing on caregivers who work outside the home.
Several agencies in southeastern Wisconsin have formed a coalition to improve communication among service providers, people in need and family caregivers, said Carmen Pangilinan, program and policy coordinator at the Milwaukee County Department on Aging.
AARP research shows that 60 percent of family caregivers care for an adult while employed full or part time.
“Something has to give—their life or their job,” said Ruth Busalacchi, head of Greenfield-based SYNERGY HomeCare. “There’s funding for respite care and professional support for caregivers, but you have to accept that you can’t do it alone.”
Joanne Cleaver is a writer living in Manistee, Mich.