by Saskia Siderow, Managing Director, Ormond House LLC

“How are we going to get him home?” The discharge nurse looked at us with a blank stare. My father-in-law N, who had suffered a debilitating stroke some years before, would have to leave the hospital-issued wheelchair behind, she said. The hospital could not help to arrange home-bound transportation, she said. The ambulance which had brought this 6 foot 4, 250lb man to the emergency room had been unable to accommodate his outsized wheelchair, and now we were on our own.

We found a solution, of course, just like we solved a thousand other unexpected problems during the four years we cared for N. That was the last time his wheelchair was left behind, in part because it was also the last time anyone called 911 for a man who couldn’t benefit from being scared and confused in a New York emergency room. But the story illustrates how easy it was to get in a jam because we didn’t know what we were doing before we started doing it. Caregiving is like that. We had no experience or training, we learned on the job, and we hoped we wouldn’t make too many mistakes.

America has more than 43 million people providing part-time or full-time care for a family member, friend or neighbor, according to a report from the AARP and the National Alliance on Caregiving. Some are simply fetching groceries and checking in on their loved one, but many are helping elderly or disabled relatives with the basic activities of daily living – bathing, dressing, toileting, eating, transferring. Caregivers often take on the role of coordinating their loved one’s care: struggling with insurance plans to obtain needed services, while managing multiple medical appointments, treatments and medications. According to the AARP report, nearly half of all family caregivers are also performing complex medical tasks, such as administering injections, changing catheters and dressing wounds, often with little or no preparation or training.

The physical and emotional stress of providing this care takes a serious toll. Studies have shown that caregivers experience high rates of chronic anxiety and depression, diminished immune response, increased risk of heart disease and high levels of mortality.

Then there is the financial stress. Many people mistakenly believe that Medicare will pay for home health assistance when a loved one becomes too ill or frail to manage alone, only to find that the government plan is limited to direct medical costs for doctors’ visits, hospital care or post-acute rehabilitation. Medicaid provides long-term care services and supports, but only for qualifying patients with sufficiently low incomes (thresholds vary from state to state) and services often have long waiting lists. We were lucky – my father-in-law was one of only 8 per cent of Americans with a private long-term care insurance policy to help pay for his care, but the benefits were limited and much of our spending was still out-of-pocket. Many families are faced with difficult choices: spend down their savings until they qualify for Medicaid, or leave the workforce and care for their loved one full-time. Around one in five caregivers report significant financial strain, according to the AARP.

The scale of America’s caregiving challenge is growing. By the year 2030, the older population in America will be double the level in 2000: 72 million Americans will over the age of 65, 25 per cent of them will be older than 85. Today, of the more than 35 million Americans over the age of 65, about 17 per cent report need for long-term care services. Adults over the age of 85 are 7 times more likely to need personal assistance with activities of daily living. And just as the population of older adults with functional limitations is swelling, the Trump administration’s plan to block grant federal Medicaid funding promises to further restrict support for our most vulnerable patients and their caregivers.

Unless healthcare systems act to support family caregivers, they will be the ones left holding the can. Exhausted and overburdened caregivers often call 911 because they don’t know what else to do. Now that financial incentives to reduce healthcare spending and penalties for avoidable hospital readmissions have become part of the fabric of payment, healthcare systems are learning that care needs to be integrated in the community, and this starts with the caregivers.