Dr. Mary Clark became an advocate for the CARE Act the hard way.
Her mother suffered from dementia and other health problems requiring around-the-clock care. Clark and her two sisters organized a 12-person caregiving team to ensure her mom had the help she needed to remain comfortable at home.
But even Clark – a highly educated, motivated health care professional – faced tough challenges, decisions and issues as a caregiver. She shudders to think about the monumental struggles that could overwhelm caregivers who don’t have the resources and the knowledge about the health care industry that she has.
“It makes me sad to think about it,” said Clark, who is the Assistant Dean in the Wayne State University Eugene Applebaum College of Pharmacy and Health Sciences. “The CARE Act will help those who don’t know what to ask.”
The CARE Act, now in the Michigan Legislature, is a common-sense solution to helping caregivers get the information and training they need when their loved ones go into the hospital and as they transition home.
Senate Bill 352 includes three important provisions:
- The name of the family caregiver is recorded when a loved one is admitted into a hospital;
- The family caregiver is notified if the loved one is to be discharged to another facility or back home; and,
- The facility must provide an explanation and live instruction of the medical tasks – such as medication management, injections, wound care, and transfers – that the family caregiver will perform at home.
That last provision would have been especially beneficial to Clark’s family. They did not receive complete information about medication that was prescribed after her mom left the hospital and the result was permanent kidney damage. The family faced a tough call between dialysis and hospice and ultimately decided their 82-year-old matriarch couldn’t handle the kidney treatment. She died in January.
“We’re not blaming anyone, but the medication should have been monitored because it was short-term. We did receive a list of things to go over with the nurses but there were some missing pieces,” Clark said.
The caregiving experience “did have some good parts,” Clark added. Her mom had more than three additional years in the familiar surroundings of her home, where she loved to sit in her breakfast nook.
“She was able to be in that breakfast nook until three days before she died. That made her comfortable and happy. Even though she had dementia, she knew she was home,” Clark said.
The CARE Act is in the Senate Health Policy Committee.