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.
Thank You, for that great Article. It is a shame how the senior citizens are being treated. They work all their lives paying taxes and this is how they are treated. Our country is backward. Instead of taking care of old people we are giving the money to young able body people that can work. You can be young, you can go to social services, get big food stamps, they help pay young people rent, free medical care but the old people are treated way. This country don’t care about the elderly, all they care about is profit. Thank God me and my sibling were able to keep my father at home until he took the last breath. I hurt for you’ll that are not able to do that and seeing you love ones mistreated. I have seen it first hand myself the way senior are neglected in rest homes.
It should not be an issue of young versus old. All people should be treated with dignity. The issue for me is that much of our taxpayer money for long-term care of the aged and disabled, a huge percentage of the federal and state budgets, is siphoned off by for-profit companies. They are increasingly multi-facility companies on the stock exchanges and, even worse, Private Investment firms. Their quest for huge profits conflicts with quality care.
Ms. Olsen blames a dedicated profession of caring individuals for her difficulties in finding support for her mother through the Florida Medicaid program. Why didn’t Mom or Mom’s kids buy a long term care insurance policy? This would have given them the option to choose NF care, ALF residency or home care. Home care brings a bevy of issues, including one-on-one time, where “hidden” abuse and theft occur all too often, not to mention fraud.
Laura, don’t lay blame at the feet of the good caregivers who work to comply with a multitude of regulations in order to provide quality service to your Mom and thousands of other elderly and disabled people in Florida. All too often, the children set the bar too high when the elders are perfectly happy with the care they receive.
Just for starters, long-term care insurance doesn’t pay for rehab (post-acute care) services. All older people (through Medicare) who require rehab receive taxpayer-funded post-acute care after a three-day hospital stay. I don’t think it’s asking too much for it to be high quality services.
This is a very serious situation! I am going through the same thing with my father, unfortunately he makes too much SS and doesn’t qualify for Medicaid and he doesn’t make enough for the ALF he lives in and I am running out of time trying to keep him off the street..
Yes, this is a very serious situation and I intend to fight for affordable, quality long-term care for everyone in need.
As a nurse practitioner provider in long term care and a nursing home nurse for about 30 years I’ve watched with disgust as for-profit nursing home chains suck the US Medicare program dry while splitting stock options four-fold for investors. Staffing is horrible, nurses scarce, and quality of care almost non-existent. You would never believe the greed and corruption I have seen. Until we take the profit out of nursing homes nothing will change. We should be very, very ashamed for allowing this.
Thank you for your insightful experiences. I think the situation is getting worse now that Private Investment firms are entering the nursing home and home care businesses.
Fortunately, in Massachusetts there is a wealth of government subsidized services for low-income seniors who want to live at home, including the Community Choices program which provides an extraordinary amount of in-home care to those who are on Medicaid and are functionally eligible for nursing home care. 26 local agencies (Aging Services Access Points) throughout MA operate these programs. Visit 800ageinfo.com to find the name and phone number of your local elder care agency that operates these programs in your community.
How can we make Changes in these facility my mother was in a facility for two and a half year before she passed away in the facility. I was constantly complaining about the care that my mother was receiving it fell on deaf ears. I complain to the ombudsman in that county but he was of no help at all, I think he was in kahoots with the facility. Your letter was all of the things that I went through at this facility. I had me with management at the facility and they would tell me they would look into some of these matters that I was complaining about never happen. What incident that happened in this facility was someone turn my mother’s wheelchair over and she received a fractured hip and no one could tell me how this happened. How can we put pressure on these facilities they seem to run amok.
Please let me know how we can make changes in these facilities.
My pain will never go away, because the way my mother was treated in that facility.
It is stories like yours that are far too common. In my view, we need fundamental changes and now. For starters, we must take the profit out of long-term care–nearly every other nation uses either government or non-profit agencies to provide such assistance to vulnerable older people.
My sister and I live this daily. One parent in an ECF and one in an ALF. The one in an ECF was dropped twice in two different facilities due to under staffing and under training. There are not enough professionals to go around for any long term care services and supports as we age. Eldercare Workforce Alliance is trying to help. Check ’em out.
Yes, our aides are over-worked and under-paid. They receive few, if any, benefits. This must change.
Caring for the elders has been something i have been passionate for because its like caring for your new born babies,if i get a job like that i will trully appreciate it
As long as health “care” is a for-profit business, the focus will continue (as it must under the system) on maximizing profits. You achieve max profits by underpaying employees, underserving your customers, cutting as many corners as you can, and getting plenty of subsidies.
Yes, this is the core of the problem!
Excellent excellent article. As an independent business owner of a small non-medical HOMECARE company and a Patient Advocate, I found your insight spot on. I am constantly fighting for the rights of seniors and better care. Sadly with more changes coming down from Medicaid in PA it is only making it worse, less personalized thought. I look forward to reading your book. Thank you.