Families often bear the burden of home care for aging parents. There's a way to fix that.

During a scheduled c-section to have my second child in 2019, I got a surprise phone call: the home caregiver we scheduled for my father with dementia was not available.

The timing could not have been worse, but scrambling to find care for my dad had become an everyday event. People like me, in the so-called “sandwich generation” are raising our children and simultaneously caring for our aging parents.

My dad was diagnosed with dementia in June of 2015. He had to stop working, his car keys had to be taken away, and couldn’t be home by himself for long periods. I moved in with him, along with my husband and our firstborn. I was about to return to full time work from maternity leave, and figured that we could find a home caregiver for my dad during the hours we worked.

It wasn’t that simple. Home care is severely underfunded and understaffed, in large part because of the industry’s low wages. On average, home health care workers earn just $17,200 a year. Few of the 2.8 million home care aides across America receive benefits. Many lack the training to meet the complex medical needs of their patients, including those with dementia, like my dad.

Meanwhile, home health workers are more in demand than ever, even as nursing homes and assisted living facilities have seen a decrease in demand. With more people living longer, aging at home is less expensive than other long-term care options.

In order to care for my dad, I had no choice but to take time off from my job as a special education teacher. My principal said the school valued me as an employee, and I was fortunate to take a leave of three and a half months.

I took this leave without pay. I had already used my Family and Medical Leave Act allotment, which provides some workers with up to 12 weeks of unpaid time off each year, for my pregnancy, my maternity, and my dad.

During that time, we were able to sign my dad up for an adult day care, but my dad’s needs have become more complex and our family has grown. So now, with two very young children, we need regular support and respite sometimes outside our work hours as well. We still cannot find anyone consistent to help us. Over the past five years we have cycled through interviewing caregivers on our own, and three separate agencies.

The Biden Administration’s economic plan and the Better Care Better Jobs Act, introduced in June, would improve the pay, the benefits, and the training of professional caregivers. This would create almost 15,0000 jobs in Virginia, according to analysis by the Center for American Progress and SEIU. Investing $400 billion in home care would create thousands of new stable caregiving jobs and enable family members to continue their own careers.

During the school year, my day usually starts at 5:30 a.m. I check on my dad, and usually there are messes to clean up from the middle of the night. I give him a lot of different medications. I help him shower, dress him, brush his teeth, and make sure he gets something to eat for breakfast.

Then I get my kids up, if they aren’t already awake. Usually they wake up early, so I juggle the kids and my dad at the same time. My oldest is 3 1/2 and my youngest just turned 2. During the weekends, dad will get up without supervision and do things that aren’t safe. We’ve had a really hard time finding purposeful things for him to do. We do a lot of drives when my kids nap, and he goes to exercise classes at least two times a week.

In the evening he gets sundown syndrome and gets restless, so we try to keep routines predictable.

We eventually did find someone to care for my dad back during my C-section years ago. We found an independent caregiver at the last minute and she came right from an eight-hour night shift with another family. She was exhausted and was administering medicine to my dad while responsible for his safety. We were lucky we found someone, but the shortage of workers meant I had to settle for what felt like a risky situation for my dad. I was worried the entire time.

I know from experience how dire the shortage of caregivers is in Virginia, and how much that can affect the jobs and health of working families. Senators have been debating whether to include home care in their final budget. If you ask me, I have no idea why this is even a debate. Our government simply has to do more to help Americans who want to age at home and the people who love and care for them.

Julie Hart lives in Mount Crawford, Virginia with her husband, son and father.

Published with permission of The American Independent Foundation.