The cost of caregiving

A doctomakes a house call. 

Taking care of a loved one who's sick or near the end of their life is hard -- emotionally, physically, financially. It involves long hours without pay and it is a full-time job many Americans find themselves doing. Nearly 42 percent of U.S. workers have cared for an aging family member or friend in the last five years, according to the AARP. They've taken time off because professional care is just too pricey. And insurance rarely covers the cost of home care.

Christian Spratt, who lives with her grandparents in their Tennessee home, knows how difficult it is caring for a loved one. Her grandparents are both in their mid-80s and her grandfather has Alzheimer's.

"I basically run their household, kind of almost like a Carson (butler) on 'Downton Abbey.' You get the groceries done, you get the doctor's appointments done. Every facet of their lives is something that I directly supervise and facilitate," says Spratt.

Both of Spratt's grandparents have Medicare, but she found that the options available to them were limited. Her grandfather is a World War II veteran and a retired federal worker. While Spratt's grandparents have a Medicare supplement due to his job working in the Postal Service, they don't receive veterans' assistance.

 Trimming caregiving costs Five cost-cutting suggestions on how you can save on caregiving costs without compromising care.

You should check federal guidelines for health care programs. In many cases, Medicaid coverage can help with health care and treatment if an individual qualifies based on income.  But rules vary from state to state.  

Spratt says she has two options: stay in her grandparents' home and help them manage their own finances at the sacrifice of her own life or throw in the towel and try to get her grandparents into a nursing home. She says she feels trapped.

"You just feel like there's not enough that you can do in any one direction," she says. "What little income I do get does come from my grandparents. Since my savings is depleted, when this is over -- five minutes from now, five years -- there's nothing left. I will actually have to start my life over from scratch at that point."

For anyone going through the same situation, Spratt says you shouldn't take the decision to become a caretaker lightly.

"These are my grandparents, yes, but they are not my grandparents any more. I know them and have an understanding of them on a personal level that you don't get growing up going to your grandma's for Sunday dinner. You need to be prepared to have everything about these people that you've loved your whole life stripped down to its most basic, human element and have it be dirty and still be able to sleep at night. And wake up the next day and do it all over again," says Spratt.
CORRECTION: An earlier version of this story incorrectly included a quote which stated that Medicare becomes available when income is below a certain level.  The correct program is Medicaid. The text has been updated. 

About the author

Lizzie O'Leary is the new host of Marketplace Weekend.
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The cost of caregiving hit my sister hard. She quit her job and cared for our mother who had Alzheimer's for 5 years and she was terribly burnt out. We moved mom to a nursing home where she passed away several months later. My sister later was diagnosed with cancer and congestive heart failure. Due to caring for mom, she is unable to get Social Security disability--it is based on your income for the past 5 (or whatever the number is) years. Because she moved mom in and cared for her she is penalized and can't get disability. It is so unfair.

Along with the above comments, I believe the report did a disservice by making it sound as if you were not able to have any money at all to be eligible for assistance via Medicaid or the Veteran's Aid and Attendance program. I looked into the veteran's program about a year ago for my 99 year old father in law. It is true that at the time he had a bit too much money to be eligible for service, but if he had lived a few more months, he would have spent down to the level where he was able to receive service. I also looked up the level for spousal impoverishment on Medicaid and it varied between $21,912 and $109,560(http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Elig...).

I can only reiterate the above two comments. PLEASE correct this misunderstanding between Medicare and Medicaid before it continues to poison the discussion.

It's a shame that you didn't have correct information about Medicare and Medicaid for this story. Medicare coverage for long term care is limited, but Medicaid covers long term care, including home care services and skilled nursing home services. In addition, it is not necessary to go bankrupt in order to qualify for Medicaid. Ms. Spratt should contact a good elder law attorney for help in enrolling her grandparents in Medicaid. Medicaid can even pay Ms. Spratt for her caregiver services. NAELA is a good resource (National Association of Elder Law Attorneys) for attorneys in her area.

It's really important to get the facts right. There's enough confusion without a trusted source like Marketplace getting it wrong.

Good story, but it is not Medicare which kicks in when assets are gone but Medicaid. Most people don't really understand this, but should have been mentioned briefly at end of the story because why contribute to the confusion?

Something that might help in this context also is mentioning that sometimes consulting an elder law attorney can help -- topic for another story on Marketplace Money?

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