Unpaid caregiving putting strain on families across the area | Resources to help
PHILADELPHIA (WPVI) -- It is an issue impacting families across the country: unpaid caregiving. For loved ones, it takes not only an incredible financial toll but an emotional one as well.
Much of half of that caregiving is for those living with dementia, as one in ten Americans are living with the disease. And medical experts say that number is supposed to surge to one in five by the year 2050.
Approximately 25% of dementia caregivers are in what is known as the "sandwich generation," meaning they care for an aging parent and at least one child.
But whether you're taking care of a parent, a spouse or another loved one, to say that it is difficult is an understatement.
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"This is obviously a Christmas tree that I never had a chance to take down," said Diane Chew.
So, Chew made it a Valentine's Day tree, making it a tree for all seasons.
Chew shares her love for her husband, Ben, on social media. Ben, a musician, has dementia and requires constant care.
Caregiving has become a 24-hour job for her and she doesn't get paid. The Chews have gone from two incomes to no income and the cost for even part-time help is astronomical.
Chew is paying $15,000 a month.
"I honestly thought I was bleeding money," she said. "That was the only way I could describe it. So you have the cost of care giving, you have the cost of supplies. I mean, disposable briefs, we'd go through those like tissue paper."
She says she had to sell Ben's recording studio equipment and beloved guitar collection to make ends meet.
Next, she may have to sell their home.
"We fall into that category where we had too many resources, our retirement resources were too much to get any kind of help from the government, but not enough to sustain what I'm paying right now," said Chew.
A new study sponsored by Otsuka Pharmaceuticals reveals the strain care giving is putting on American families.
In Pennsylvania, caregivers provide the equivalent of $32.5 billion worth of care and 40% of that number is for people living with dementia.
When asked at what point she will really have to make some serious financial decisions, she replied: "Maybe another year, quite honestly."
Some Pennsylvania residents can get paid to care for a family member, but the person receiving care must be eligible for Medicaid.
RELATED: 'Sandwich generation' often overwhelmed caregiving for both young children, older parents
"I highly urge caregivers to explore early and often what's possible for them. I mean, every county has a Department of Aging," said Chew.
Also reach out to support groups and an elder care attorney who specializes in planning for the future.
And most importantly: "If I had any advice to give another caregiver, it would be build your support team before you need it," said Chew.
Talk to your loved one to lay out a plan as soon as you see signs. And no matter what, Chew urges family caregivers to lead with love.
"To not let fear take them down, because it can threaten to do that every day. But we have a choice whether to go with fear or love and Ben helps me choose love," she said.
You can find elder care lawyers on the National Academy of Elder Law Attorneys website.
And Pennsylvania legislation, aimed at easing the situation for caregivers, is pending. One bill would expand Medicaid coverage to include assisted living residences and maybe also memory care instead of just skilled nursing.
Two others look to increase the state's long-term care workforce.
If you live in Philadelphia, the city's Corporation for Aging can also help.
Community Legal Services of Philadelphia is also a great resource.
