Caregiving can take a toll on you financially and emotionally. About 48 million people in the United States are providing care to an adult family member or friend.
For caregiver Diane Goldstein, it was never a question.
“This is somebody that you cared about all your life,” Goldstein said. “If you love somebody, you don’t make that choice. That choice is you want to do this.”
When doctors diagnosed her husband, Bob, with Alzheimer’s disease, she became his caregiver.
“I realized now he retired because he could no longer handle what he was doing,” Goldstein said. “We certainly didn’t set aside funds to take care of him or with Alzheimer’s … We could not qualify for long-term care because, by the time I was approached that I should have it, Bob was already showing symptoms.”
Goldstein feels fortunate that this happened to them later in life; otherwise, it could have been much worse.
“We would have never been able to retire,” Goldstein said. “I would have had to give up working.”
Jaclynn Faffer, the president and CEO of Naples Senior Center, explained caregiving takes a toll.
“Seventeen percent of caregivers of people diagnosed with dementia quit their jobs either before or shortly after they become the caregivers of their loved ones,” Faffer said. “There is an estimate that there are 10 million family caregivers over the age of 50 who care for their loved ones, and it’s a loss of an estimated $3 trillion in wages, pensions, retirement funds and benefits.”
“About 78% of family caregivers said that they’re paying out of pocket to help support the person that they’re taking care of, to the tune of on average about $7,200 a year, which is really significant. It came out to about 26% of the average annual income of these family caregivers,” said Jeff Johnson, the state director of AARP Florida. “They’ve either had to cut back their hours, or in some cases, they’ve picked up and taken on extra jobs because the cost of care has been so much.”
But there is a new effort to provide some relief.
“There is a federal bill that’s in both houses of Congress with bipartisan support called the Credit for Caring Act that would give a tax credit to family caregivers.”
If passed, the legislation would give working family caregivers up to $5,000 in federal tax credits. But retired caregivers or those who had to quit their jobs will have to wait for the next round.
“Unfortunately, the Credit for Caring Act doesn’t cover everybody. It is for working family caregivers,” Johnson said. “Our hope, though, is that if we’re able to get this passed, then in future years, we’ll be able to expand it to include those folks.”
That is unless they know where to look for help.
“We’ve helped people get on Medicaid. We’ve helped people get a higher level of food stamps than they were getting before. So here again, once we’re made aware of the need, we can step in and make a difference,” Faffer said. “We happen to benefit from a program that the state funds that enables us to provide scholarships to people who can’t afford our respite program.”
At the state level, Gov. Ron DeSantis set aside $6.7 million dollars for Florida’s Alzheimer’s disease initiative in the new budget. The program helps caregivers shoulder some of their financial burdens.
MORE: Florida Department of Elder Affairs Sees Big Gains for Aging Services and Programs as Governor DeSantis Signs 2021-2022 Budget
“My heart hurts for those people who are struggling to take care of their loved one, to be there with them 24/7, to pay for the drugs and not to have the support,” Goldstein said. “So many other people have no funds, and we don’t ask for that, and we don’t ask to take care of these people. It’s just there, and we’re doing it, and most of us do it out of love.”
MORE: AARP – Credit for Caring Act Would Provide Tax Credit to Family Caregivers