This is the first part of a three-part series on what families should know about caregiving for aging loved ones, especially those with dementia.
Karen Gunther’s mother would not get out of the car.
The family had driven her to a memory-care community after Alzheimer’s disease had made it increasingly unsafe for her to remain at home with Gunther’s father. Her mother, still legally autonomous at the time, agreed at first, but then changed her mind. At times she understood and accepted, at other times she did not. At one point, she resisted every effort to enter so Gunther’s dad called Karen [SG1] — a Wabash professor with a PhD in psychology and neuroscience — asking her to help with the transition. Instead, she found herself in an impossible role: daughter, crisis manager and unwilling enforcer of a decision her mother did not understand or accept.
The attempt failed that day. Her father, worn down by repeated angry outbursts and constant care demands, took the evening to regroup. Later, after another social worker helped the family create a smoother transition, Gunther’s mother moved into memory care. But that did not end the uncertainty. It marked the beginning of a long series of decisions about safety, costs, medical care, paperwork and what it means to honor a loved one’s wishes as dementia progresses.
For many Hoosier families, long-term care becomes urgent long before they understand how care will work: how to pick the right place, how to pay for it, and what other services can help.
The private-pay cliff
Gunther’s family has been able to pay for separate living arrangements for her parents: senior living for her father and memory care for her mother. But she has seen how quickly the costs add up. Memory care, facility care levels, personal-care supplies and other charges can turn a family’s savings into a countdown clock. And Alzheimer’s doesn’t know about or care how much money a family has left.
That is the private-pay cliff: Families may have too many assets to qualify for Medicaid assistance but not enough wealth to pay indefinitely for several thousand dollars a month in long-term care. The cliff can be especially steep for couples when one person requires intensive care and the other still needs housing, transportation, medical care and social support.
Nancy Bennett, whose husband Larry has vascular dementia, has had similar concerns. A financial adviser helped her estimate how long the family could afford his care, but the calculation has never stopped being frightening. Facility costs are only part of the picture; families may also confront charges for medications, specialists, transportation, supplies and higher “levels” of care as a resident needs more help.
The consequences are personal, but the problem is structural. Almost all families need better access to clear financial counseling before a crisis, stronger options for home- and community-based support, and care systems that do not require financial depletion before help becomes available.
What is covered and what isn’t
A central source of confusion is Medicare and Medicaid.
Medicare is a federal program for those 65+ that can cover certain short-term skilled nursing or rehabilitation services when a patient meets its conditions. It can also continue to cover medical services, physicians, prescriptions and hospital care for a person living in a nursing facility. But Medicare generally does not pay for long-term custodial care: ongoing help with bathing, dressing, eating, toileting, supervision and other daily activities.
For families, the word “covered” can be misleading if it is not followed by a clear question: Covered for what, for how long, and by whom?
Medicaid is a joint federal and state program that may help eligible Hoosiers pay for long-term services, but eligibility depends on income, assets, care needs and the program or facility involved. It should be part of the planning conversation early—not only after a family has exhausted itself trying to pay privately.
Demand a clearer bill
A facility’s stated monthly rate may not be the full cost. Changing levels of care, pharmacy bills and physician charges add up. Gunther’s mother’s memory care “extras” routinely cost upwards of $1000. Bennett receives bills for services that are hard to understand. Families should ask for a written explanation of the base rate, each care-level threshold, what is included, what is billed separately, who can authorize additional services and how rate changes are communicated.
Indiana requires certain disclosures to prospective residents, including information on the Long-Term Care Ombudsman Program and facility policies that charge a full monthly rate even when a resident stays for only part of a month. Those legal disclosures are useful—but families still need plain-language answers before signing.
Gunther’s experience began with a mother refusing to leave a car. Nancy Bennett’s husband had to move from one provider residency to another, compelling Bennett to go back to finding a place for him while juggling costs with her financial advisor. Next week, the column will share more about that. Both are reminders that safety has a price in America—and too often, families are asked to discover that price in the middle of a crisis.