I’ve been studying elder care for more than 40 years. My special interest is how social welfare policies affect long-term care. But what I have learned during my career didn’t fully prepare me when I was suddenly thrust into a grueling long-distance caregiving role for my mother, Dottie.
Mom had been a healthy athlete her entire life. In her older years, she won medals in the Florida Senior Olympic Games for swimming, basketball, and even bicycle racing. After my mom retired, she managed to get by on her small Social Security pension but didn’t have much of a cushion in savings or other assets. She lived contentedly alone for decades in a public housing apartment.
At age 83, my mom became steadily incapacitated by Parkinson’s disease and a gradual loss of vision. Finding care for her was a challenge, especially from 1,200 miles away.
I quickly learned that my research had vastly underestimated the complications of long-distance caregiving. Problems emerge often, whether you are readily available or not, and they tend to demand immediate attention. Nor had I fully comprehended the extent of the vigilance required to protect against insufficient, low-quality services, whether by home health agencies, nursing homes, assisted living facilities, or hospitals.
I initially thought about finding ways for my mother to stay in her apartment. Like many others studying elder care, I assumed that the recent national movement away from placing people in nursing homes would, under the Medicaid program, offer clear-cut advantages for older people and their families. I was wrong. Not only are there long waiting lists for government-supported services in Florida (and most other states), but there isn’t sufficient help for those with low incomes and multiple chronic conditions.
My mother, who needed significant assistance, got the maximum of in-home care available under Florida’s Medicaid plan — 10 hours per week. She was entitled to roughly the same amount of help when she moved to Pennsylvania, where I live. Adult children, mostly daughters like me, are counted on to fill in the remaining huge gaps, with devastating effects on their financial, physical, and emotional well-being. Unlike what I learned through research, I now felt the full weight of these burdens.
Despite my long familiarity with long-term care issues, I often felt helpless trying to surmount the countless and unwarranted hurdles that prevented my mother from acquiring vital services in a timely manner. The social welfare system is set up to be punitive and stingy — to discourage people from applying and keeping benefits, even when they are poor, aged, and disabled like Dottie. We had to prove over and over again that she was truly eligible for every single service she required.
Through my academic work, I was familiar with the general failings of nursing homes. But it shook me to personally witness the negligent and appalling treatment that my mom received in two Florida facilities for post-acute care. Nothing could have prepared me for the indifference to her physical and cognitive needs, the unpalatable meals, the disdain for government regulations, and the generally slapdash approach to patient care.
In 2012, a bad fall landed my mom in a nursing home for rehabilitation. The goal was for her to go home. However, the care in the facility was so negligent and the therapy so limited that she never regained her ability to walk and so couldn’t return to her apartment. She currently lives in a county nursing home near me, in Pennsylvania, where she is receiving relatively decent care. Mom, of course, needs an on-site advocate to protect her; I visit nearly every day.
Overseeing my mother’s care inspired me to reexamine a question that I had wanted answers to in the 1970s: Why is there such a stark disconnect between the billions of dollars in government funding for the aged (via Medicare, Medicaid, the Older Americans Act, and other programs) and what older people actually receive? I’ve learned that the swelling budgets feed private financial interests, along with the medical industrial complex and service sector, at the expense of elderly individuals in need. Nursing homes, for instance, siphon off a considerable percentage of federal and state taxpayer money allocated for long-term care.
My mother’s experience prompted me to examine the financial profiles of the commercial entities that had served her so poorly. As is the case for many nursing homes and home health agencies, they are owned by either private equity firms or multi-chain conglomerates trading on public exchanges. Despite their extensive dependence on federal funds from Medicare and Medicaid for revenue, I found it tricky to penetrate their inner workings or lay bare the dizzying layers of control and spread of earnings flowing among them. What became obvious is that their main goal — ever-increasing profits — is patently at odds with the essential requirements of their frail clients.
Being thrown into caregiving taught me things that only on-the-ground experiences can convey. My elder care journey revealed the unreasonableness of our bureaucratic welfare system and exposed its stinginess and ongoing assaults on human dignity, things I never fully grasped in my academic work and, even more important, things that no older American or his or her family should ever be forced to live with.
Laura Katz Olson is a professor of political science at Lehigh University. Her latest book, “Elder Care Journey: A View from the Front Lines,” was published in June by SUNY Press.