Family caregivers want to know what government proposed caregiving training will look like

Tracy Daniel-Hardy and her parents
Posted at 1:09 PM, Sep 21, 2023

Tracy Daniel-Hardy is a caregiver for her senior parents and it is truly a labor of love.

“They're in their 80s. Dad is 84 and mom is 82 and they are both living with dementia. So, I manage almost everything for them,” said Daniel-Hardy.

They live down the street from her and she handles everything from their finances, to doctor's visits, to managing medication.

“Sometimes they fall there and it may be a little while before we notice them missing and realize they may be in the bathroom so someone has to run there and check.”

For years, Daniel-Hardy has done her own research on caregiving. She has created tutorials for family members helping out and she has leaned on doctors for guidance.

According to the AARP, data from 2020 shows nearly 42 million Americans provided unpaid care to people 50 and older.

A new proposal by the Centers for Medicare and Medicaid Services wouldn't pay family caregivers, but it calls for medical professionals to train them on everything from toileting to bathing to dressing and how to properly use medical equipment.

Medicare would cover the cost.

“I think overall, it's a really important first step in recognizing that critical role that family caregivers play and acknowledging the complexity of care that families provide, because I don't think that's always recognized,” said Christina Irving with Family Caregiving Alliance.

Irving supports the idea but says more needs to be done because the burden of care is still so often placed on families.

“We can't just say, there's a family caregiver, great, they can do it all. We really have to ask them, what are the things that are challenging? What are difficult? What do you need more information and training on” said Irving.

Many times, family members are the ones changing catheters or handling tube feedings.

Executive Vice President of AARP, Nancy Leamond spent six years at home caring for her husband who was suffering from ALS.

“One of our home care workers told us that he wasn't really allowed under his licensing to do a feeding tube. And yet, my sons and I did it and we learned to do it by the old-fashioned way -- We googled, and we looked at a YouTube video,” said LeaMond.

“Family caregivers have been invisible, and this recognizes them, brings them into the health care system, provides them with the support and the training that they need. And our loved ones deserve nothing less,” she said.

Daniel-Hardy doesn't think the training would be as beneficial to her as it would be to someone new to caregiving.

“Something like this, I think, should be beneficial to all caregivers. You know, there should be some flexibility based on where you are in your journey and what you might need,” Daniel-Hardy said.

She's also worried about how this will all work considering so many doctors and nurses are already stretched thin.

Recently she had to wait a couple of months before she could get her mom in for an appointment.

“Sometimes you don't get what you need because they're trying to get to everybody.”

The expectation is that Medicare will start paying for this caregiving training next year.

A public comment period on this proposal just wrapped up.

You can find the proposal here.