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For Many Families, the Costs of Long-Term Care are Horrifying

A woman holding an elderly woman's handMany people don’t fear dying. They’re scared of living so long that they’ll eventually need help with basic daily activities, such as bathing and dressing. And they worry that they won’t have enough money to cover the cost of this care.

After a recent column on the rising cost of long-term care, I’ve received a lot of comments from readers about the struggles to pay for care for their elderly parents.

“It’s not easy or cheap to age and die these days,” wrote Lisa.

Her father passed away in September. His daily hospice rate was $300.

“That was more than the $3,300 monthly rate at the assisted home where he lived for the last four years,” she wrote. “He lived 22 days without food and water before he finally died. I had thought about bringing my dad home to die in his last days because it cost so much money to have him in another new home. But that would’ve been a tough situation for me. I don’t think I could’ve cared for him very well at that point.”

Lisa shared some real and raw feelings about the cost of caring for her dad.

“I was so stressed every day that he was alive,” she wrote. “I thought my dad would die in three days and I would’ve saved a lot of money. But he kept living. Every day he was alive was costing me so much money that I wished he would die already. And that’s a horrible thing to think.”

How many other caregivers share these feelings? I appreciated her honesty.

There is a long-term-care crisis in America, and we’ve done little to address how to cover the cost of care for people who can no longer take care of themselves. The care often falls on family members or adult children. It can be a rewarding job but also an emotionally and financially draining one.

In a two-part series last year, I addressed this dilemma.

I suspect many people don’t know that the Affordable Care Act was supposed to include coverage for long-term care.

The Community Living Assistance Services and Supports (CLASS) Act was supposed to be an insurance program administered by the federal government that would cover long-term care. Medicaid is the only federal program that covers long-term care, which includes assistance with daily activities, such as eating, dressing and bathing, or help with someone who has a severe cognitive impairment such as Alzheimer’s disease. To qualify for the benefit, you have to be pretty poor. Except in very limited situations, Medicare does not cover long-term care services.

Under the CLASS Act, employees who decided to participate in the program would have paid premiums through payroll deductions. Participation by workers would have been voluntary. So participants, not taxpayers, would have covered the cost. If a person was self-employed or their employer chose not to participate, they could have participated through a government-sponsored payment mechanism.

The program promised to provide lifetime cash benefits of at least $50 a day to people with disabilities to help with the costs of long-term services and support. The idea was to keep them in their homes and communities, if possible.

Ultimately, the CLASS Act was abandoned. There was concern that the people who most needed the insurance would pay but that others without health issues would opt out. This would mean premiums would be too high. And if the program became financially unstable, there would have been a lot of pressure for the federal government to bail it out.

Until there is a national fix for how to pay for long-term care, the cost will still largely be covered by individuals and their caregivers. Here are some reader comments about this troubling issue:

“My mother has had live-in assistance for over a year now,” one reader commented. “Fortunately, she has the financial resources to afford it so far, but her funds will run out some time in the next few years.”

Genworth Financial has a useful cost-of-care tool to help calculate the cost of care in your area, from hiring an in-home health aide to the price of a private room in a nursing home. For example, if you live in Maryland and need a home health aide, the median rate for care is $25 an hour. The median monthly cost of an assisted living facility is $5,100.

Depending on where you live and your financial resources, there is a wide disparity in care.

“An elderly friend of ours lives in one of the best nursing homes in the country,” another reader wrote. “She has an efficiency apartment (with kitchen) that has a balcony overlooking a lawn with bird-feeders and woods. The ‘campus’ has three good restaurants, two cafes, a large library with subscriptions to many newspapers and magazines and all kinds of books, an indoor pool, hobby and craft rooms, well-equipped game rooms, TV lounges, plus landscaped lawns with outdoor furniture and walking paths through acres of woods. Many scheduled activities (movies, lectures, games, worship services in a chapel, plus shopping trips and excursions out of town). It’s beautiful. Getting in requires at least a $300,000 deposit and minimum costs are $6,000 per month (per person, of course). Another elderly person we know lives in a room in a building that’s basically a warehouse to store old people. Horrible food. Nothing to do but stare at television. No activities. The only outdoor area is a parking lot. I think I’d rather die than live there. It’s all that she can afford with Medicaid. Welcome to America.”

Another reader wrote: “My father and mother-in-law live with us in a suite on the lower floor. He receives home care four times a day. The first care aide uses a hydraulic hoist to transfer him from his bed to his electric wheelchair. He is then checked on twice during the day, and then the final care aide at night hoists him from the chair to bed. They take care of his toilet needs, empty his catheter bag, and ensure that he is clean and comfortable. In addition, a housekeeper has a weekly two-hour visit and a nurse practitioner visits them once a week. After-hour care is provided by paramedics on a non-emergency basis and they have had to come three times now. They have two proper hospital beds and the hydraulic hoist. The cost for all this is $0. There is no deductible, no co-pay and no limit. Oh, did I forget to mention that we live in British Columbia, Canada, and all this is provided by Interior Health as part of normal health care to all residents?”

Unfortunately, we can’t all move to Canada.

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