He looked into his wife’s eyes and flatly stated, “I’ll put a gun to my head before I ever go to a nursing home.” But the sad truth is this: His wife will be the one to bear the burden caused by his long term care needs and her own aging challenges. This couple are frugal people who worked hard all their lives. They lived on two Social Security checks, his modest pension, and minimal investments. They were able to pay their bills and enjoy simple luxuries—until the out-of-pocket expenses of long term care begin to drain what they worked a lifetime to save. His wife selflessly provides in-home care for her beloved husband, until eventually the day comes when her strength is not enough to pick him up or keep him from wandering away from home. On that day, it might be a doctor, a discharge planner, or a policeman who looks into her eyes and speaks the harsh truth to her: “I’m sorry, ma’am. You can’t take care of him by yourself any more.” This poor woman now faces a nightmare as she walks the elder care journey with a frail and declining husband. First she learns that neither Medicare nor their health insurance provide any payment for home health care costs. Later, when her husband must be relocated to a long term care facility, she discovers that neither Medicare nor Medicare supplemental insurance will pay the facility’s $3,000 to $8,000 monthly cost. Quickly, she also learns that Medicaid is not available because she has “too much money.” Her husband’s care will be offset by Medicaid only if she and her husband meet stringent income and asset limitations. If they have assets over approximately $101,000, they must “spend down” their life savings, which Medicaid defines as “excess assets.” When all excess assets have been spent on her husband’s medical care, then Medicaid will also control her monthly income. She is restricted to $2,500 per month; any income above that must be used to pay for her husband’s care. Later, when her husband dies, she receives more bad news. She loses his pension, and as the “survivor spouse” she loses one of their two Social Security checks. She has spent nearly all of their assets to provide for her husband’s care, and now she can’t even afford to live in her own home. The nightmare of long-term care has left her impoverished and stolen her independence. She will now face her own elder care journey alone. She will not have the luxury of a spouse who will serve her as she served him. No one will be there to dutifully care for her at home and to delay the day that she must move to a long term care facility. She will not have the financial resources that he had, because Medicaid called them “excess liquid assets” and she spent those assets on his care. As a single person, she will not be provided with assistance by the State of Illinois or the federal government until she has become impoverished to the point of a paltry $2,000 or less in total assets. The indignity committed against her does not stop there, for now she must sign over all her income to the nursing home as well, except for a miserly “personal needs allowance” of $30 per month. The loving wife who faithfully cared for her husband is now out of money and out of options. $30 per month will not even give her the privilege of having her hair done. She is alone—and living the nightmare of long term care in America.
This is a reprint of a blog post originally published November 7, 2008. Although almost 2 years have passed, many parents of disabled children still live in fear of what will happen when they can no longer serve as primary caregiver for their child. We hope that reprinting this blog post will help these parents understand their options for the future, and bring them some peace of mind.My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, and a little anxiety too. We have raised four children, ranging in age from 32 to 17. After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester. Not everyone becomes an empty-nester. And although we sometimes joke about the child who “failed to launch” due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled. Those parents live in dread of the day that they will die and their children may survive them and face a future without the loving protection of a parent. This is the first time in human history that parents face the possibility of having their chronically disabled children actually outlive them. Prior to the introduction of antibiotics and many other great advances in health care, chronically disabled children routinely died at a young age. But now, even parents who have lived to become the frail elderly themselves may have chronically disabled children who are themselves senior citizens, but who are still at home being cared for by their parents. In fact, sometimes when we assist families in bringing in a professional caregiver for the aged parents, those same caregivers are providing necessary services to the child with the disability, as well. This raises new challenges for those parents and their children. This type of disability is really quite common. “Developmental disabilities” are severe chronic conditions caused by mental and/or physical impairments. Individuals affected by such challenges may be so profoundly impacted that they will never be able to function independently. Most of these physical and mental issues are in evidence long before a child reaches the age of 22. These disabilities will last the lifetime of the affected person. So how can a parent be assured that a disabled child will be taken care of after the parent is gone? Some attorneys will recommend that you leave everything to another, non-disabled child, to care for the disabled sibling. This passing of the torch is unfair and in many ways ill-advised. Far better is the creation of a special needs trust specifically for the benefit of your disabled child. Click here to learn more about special needs trusts, and discover exactly why “passing the torch” is a bad idea.
Countryside Care Center in Aurora, Illinois. We hear from our clients and their families that great care is provided for both private pay and Medicaid clients. When we are asked by families to recommend a skilled care facility, we often say, “Choose the care, not the curtains!” In other words, investigate what it’s like to live in a facility—don’t just judge the place by the décor and the architecture. Recently, I had the pleasure of taking a tour of Countryside Care Center to get to know the staff better. Jean Bennett, Marketing Manager, greeted me and introduced me to Anthony Clark, R.N., Clinical Nurse Manager and Physician Liaison (pictured on the left in the photo above). After telling me some of his favorite lawyer jokes, he showed me a whole new way to think about long-term care nursing. Q: Anthony, why do you serve here at Countryside? A: I had wanted to get an operating room position, but due to circumstances, I decided to apply here. Actually, an operating room job can be easier, because you never get attached to the patients—and most of the time… you win!—the patient gets well. But in a nursing home facility, you experience just the opposite. You spend long periods of time building relationships with people, and then you face the reality of their inevitable death. You have to learn how to deal with your grief. That’s one of the real challenges of being a part of a long term care setting. Ultimately, you will lose someone you care about. I try to focus on providing our residents with comfort, care, and friendship. I have a lot of friends who live here. Q: How do you and your staff find job satisfaction working in the nursing home at Countryside? A: One of the greatest things we have here at Countryside is our Reminiscence Boulevard; that’s our memory enrichment wing. Our staff go out of their way to love and care for our residents. They smile, joke, sing, and dance together. The staff on the Boulevard take pride in what they do. They do their work well, and the residents and the residents’ families come to trust each one of them. Q: What is one of the big reasons that you chose to work at Countryside? A: Formerly, I did work in a fancy and totally remodeled short-term rehabilitation center. Before the new construction, it had been an older, smaller facility. The nursing team had been able to provide the highest quality of care. But, after the reconstruction, we had a state-of-the-art building in which it was physically impossible for us to safely serve our residents. Here, we can see all of the rooms from either end of the hallway. Q: What is a special point of pride for you? A: The staff must be emotionally up each time they come through the door, or it will show to our residents. I am proud that every day, this care team shows up emotionally ready for the day. Many of us under-appreciate those who serve our frail, elderly and disabled, with both compassion and true friendship. Thank you, Anthony, Jean, and the nursing teams like those at Countryside.Many of our elder law clients live at