Patti LaFleur’s mom died this week. It was not unexpected, as Linda LaTurner had been struggling with dementia for seven years. But for LaFleur, 35, who had been an informal caregiver to her mom for around two-and-a-half years, it was devastating nonetheless.

“I am so broken, but as I start to put one foot in front of the other..I must remember to love like Linda,” LaFleur, who lives in the Seattle area, posted on Twitter this week. “Because that is what my Mom would want. My Mom would want me to live in her light.”

LaFleur, who had been vocal about her informal caregiving experience, felt her role as her mom’s caregiver was a privilege. Thanks to money left from her dad who died in November, a small nest egg from teaching and her husband’s successful job, she could afford to quit her job as a kindergarten teacher and devote herself full-time to her mom’s care.

She was one of the lucky ones.

Many pay a high price as informal caregivers, according to a new report from Brandeis University. Consider these stats:  

  • Annual out-of-pocket costs to the tune of $7,242
  • A likely change to employment as a result of caregiving, such as going in late, leaving early or taking time off
  • Financial sacrifices including putting the brakes on saving, taking on more debt and using up personal short-term savings

There are over 53 million family caregivers, and the economic value of the unpaid care they provide is estimated to exceed $470 billion, the report said. That is not chump change.

Just imagine what home- and community-based services would look like if it could channel those resources. It may resemble a version of LaFleur’s experience. People should not have to bankrupt themselves to give their family members the care they need. Watching them age is hard enough.

Liza Berger is editor of McKnight’s Home Care. Email her at [email protected].