Barry J. Jacobs, Psy.D. - Anguished Choices About the High Costs of Heart Caregiving
When their secret came out, their adult children accused them of being too proud. But my 68-year-old client Faye and her husband Larry--struggling to keep Faye from another hospital admission for congestive heart failure and lung disease—didn’t see another choice.
For many months, Faye and Larry wouldn’t tell their children or even their healthcare providers that, because they are living on fixed incomes, they couldn’t afford both their household bills and co-pays for Faye’s many medications, medical visits, and imaging studies. So they did what many other heart patients and their family caregivers do: Larry paid the rent one month and the utility bills the next. Faye took her medications every other day, rather than every day as prescribed, to stretch out her prescriptions.
The result: They were constantly stressed because of Faye’s frequent hospitalizations for poorly controlled CHF and shortness of breath. And they were still behind in their bills.
Faye and Larry are hardly the only ones in this predicament. Heart disease is expensive for patients and family members, health systems, and society as whole. A recent study by the American Heart Association estimated the medical costs and productivity losses at $555 billion a year in 2015 and predicted that number will rise to $1.1 trillion by 2035 because of the aging of the U.S. population and the increased incidence of heart disease as people get older. (According to AHA CEO Nancy Brown, “By 2035, the number of Americans living with heart disease and stroke will rise to 131.2 million—45 percent of the total U.S. population.”)
But even those astronomical figures didn’t take into account the financial impact of being a family caregiver to a loved one with heart disease or stroke. Now a new AHA study, based on an analysis of data from the 2014 Health and Retirement Survey, suggests that those caregiving costs will more than double from $61 billion in 2015 to $128 billion in 2035. For African-Americans, in particular, that will mean a rise of out-of-pocket caregiving costs, specifically for stroke, from $7200 a year in 2015 to $10,000 in 2035.
For couples like Faye and Larry, the challenge of taking care of themselves and their bills are daunting, especially when a loved one is ill and disabled for years. Careful budgeting is often not enough to make ends meet. Cutting back on crucial care is risky and worrisome. There are strategies, though, that can still make a difference:
Receive with pride, not shame: Too many of us feel diminished as slackers or paupers if we ask others for financial assistance. But the option to reject aid and forego care increases the likelihood of further medical complications—thereby necessitating even more expensive care. Instead, care enough about yourself to reach out for family help. Take pride in your children’s willingness to give back some of the love and material support you once gave them.
Be open with your physicians: There are often lower-priced medications and treatments that your doctors can consider using—but only if you tell them first that you are financially strapped. Work together with your healthcare team to find the right regimen at a manageable cost.
Tap your insurance company case manager: When heart patients are hospitalized, insurance companies pay large medical bills. To avoid that, many now assign case managers to work closely with frequently hospitalized patients and their family caregivers to address barriers to good care. Consider requesting a case manager to assist you with essential services—for example, transportation to medical appointments, equipment at little or no cost, and education and training—to help you thrive at home.
After a difficult year of many trips to the emergency room, Faye and Larry felt ashamed but desperate and finally shared their financial woes. Their children stepped up, dropping off groceries and meals. Faye’s doctors found ways of decreasing her medication costs. They still battle CHF and breathing problems daily but now have better means for following doctors’ orders. Much to their amazement, they have stayed out of the hospital for months.
