Burden grows for caregivers of elderly relatives

Once again, my husband and I have joined the millions in this country providing care for an elderly relative.

A few years ago, we cared for my husband’s father. But he insisted on returning to his home. The situation worked for a while. Then it became clear that my father-in-law would need to move back in with us.

There is joy in caregiving. Yet it’s also a tough job, and it can bring on lots of stress, anxiety and a strain on your finances. And in our country’s never-ending battle to contain health care costs, caregivers are increasingly performing tasks usually left to trained medical staff.

Patients who are discharged from the hospital or return home after same-day medical procedures often require a lot of medical attention. When that patient is elderly with chronic physical and cognitive conditions, many of those medical duties may fall to a member of the family.

A report from AARP’s Public Policy Institute and the United Hospital Fund, a nonprofit research organization, confirms what many caregivers have known for years — that they are doing far more than helping with daily living tasks such as bathing, dressing, eating, shopping and/or managing the finances of elderly parents or relatives.

“At a time when federal and state health policy is driving changes to reduce hospitalizations and nursing home admissions, it is critical to consider who will care for people with multiple chronic conditions who need substantial help with tasks that are often considered ‘nursing’ or ‘medical’ care,” the report’s authors wrote. “The default is the family, ready or not.”

There are more than 42 million unpaid family caregivers in the United States, according to the report “Home Alone: Family Caregivers Providing Complex Chronic Care.” Almost half of family caregivers performed medical or nursing tasks that included managing multiple medications, helping with devices for mobility, preparing food for special diets, caring for wounds, administering IVs and injections, using monitors, managing incontinence, and operating specialized medical equipment.

The report was based on a national survey of 1,677 family caregivers. Many respondents reported having to administer five to nine prescription medications a day. Forty percent of those surveyed said they felt stressed and worried about making a mistake. At one point, to manage all the medication my father-in-law had to take, my husband created a spreadsheet, which includes dosage details — how many times a day, how much — and what the drug does.

Although the report was aimed at professionals in the elder care field and policymakers, it’s an important validation for caregivers’ expanded responsibilities and shows that they need more training.

“It really calls for far more systematic and sustained efforts to help family caregivers perform tasks that 20 years ago would have been done in hospitals,” said Carol Levine, director of the Families and Health Care Project for the United Hospital Fund. “Having been there myself, often the tasks are presented to you as ‘This is what you need to do’ rather than ‘Are you able to do this or willing to do this?’”

So what do you do if you are a caregiver facing more medical or medication responsibilities than you think you can handle?

Ask for help.

“Find out what types of help are available,” Levine said. “What you also need to do is be realistic about what you can and can’t do.”

In our case, we hired professional long-term care assistants to help with my father-in-law, who requires a great deal of care and monitoring for his diabetes.

If your elderly relative is being discharged from a medical facility and you still aren’t comfortable administering medication or handling medical equipment, let the medical team know. You might get pushback, Levine said, but press anyway.

“While loved ones are in the hospital you aren’t allowed to touch pills or run machines and then when they are ready to go home you get a quick tutorial,” Levine said. “In the hospital, there is always somebody to call — an aide, nurse or doctor. When you are home, you are really all alone. I don’t think professionals understand that. “

If you’re a caregiver looking for help, go to www.aarp.org/home-family/caregiving. Read the article by Levine on whether you are suited for the medical jobs of family caregiving. You can also find resources at www.nextstepincare.org.

Family caregivers are crucial in the mission to lower health care costs. But if we don’t take care to make sure they are supported and trained for all the care they have to give, this mission will fail.