If you have $730,000 for nurs­ing care, you’re set

That’s the av­er­age cost for 8 years — not an un­usual span for de­men­tia pa­tients

USA TODAY US Edition - - MONEY - Jayne O’Don­nell and Laura Un­gar @JayneO’Don­nell, @lau­ra_un­gar USA TO­DAY

Peo­ple with de­men­tia — es­pe­cially those with Alzheimer’s dis­ease — of­ten live for years af­ter reach­ing the point where they need 24-hour care, leav­ing fam­i­lies in an emo­tional, fi­nan­cial and lo­gis­ti­cal quag­mire.

Randy and Mary Kaump of Ham­den, Conn., know this all too well. Randy’s mother, Ja­nis, just passed her 97th birth­day in her $13,000-a-month nurs­ing home room. She was di­ag­nosed with se­nile de­men­tia about four years ago, and her care since then have to­taled about $400,000, which de­pleted her sav­ings and about $100,000 of the cou­ple’s.

“You feel like you’re re­spon­si­ble be­cause they raised you, so you owe it to them to take care of them,” says Randy Kaump, an ob­ste­tri­cian/gy­ne­col­o­gist. “But it can be hard to deal with when we have our own kids and ca­reers.”

Once they no longer can be trusted to han­dle med­i­ca­tions or meals on their own, some out­side care is needed, says Bari Lewis, of the Alzheimer’s As­so­ci­a­tion. But round-the-clock care can be nec­es­sary for five to eight years. At a me­dian an­nual cost of $91,250 for a pri­vate nurs­ing home room, ac­cord­ing to Gen­worth Fi­nan­cial’s 2015 Cost of Care Sur­vey, that can add up to $730,000.

Medi­care doesn’t pay for longterm nurs­ing home care, and even re­hab stays of­ten are cut short, says Judy Stein, founder of the Cen­ter for Medi­care Ad­vo­cacy. She blames nurs­ing homes that rush pa­tients out and in­de­pen­dent con­trac­tors who han­dle cov­er­age de­ci­sions for Medi­care.

“If you have any rel­a­tively long-term care needs, Medi­care con­trac­tors regularly deny cov­er­age,” Stein says.

It took a bout of pneu­mo­nia for Ja­nis Kaump to get ac­cepted into a nurs­ing home. Even though nurs­ing homes aren’t sup­posed to dis­crim­i­nate based on abil­ity to pay, “the pa­tient needs to be ac­cepted at the fa­cil­ity,” Stein says.

As a prac­ti­cal mat­ter, that means ei­ther be­ing trans­ferred from a hos­pi­tal where they were ad­mit­ted for at least two nights “or that you have enough money to pay for the fore­see­able fu­ture.”

Those are among the many chal­lenges the Kaump fam­ily and oth­ers face when deal­ing with an el­derly pa­tient with de­men­tia. And one key to deal­ing with the of­ten mind-bog­gling rules and costs, ex­perts say, is plan­ning.

Sandy Mark­wood, CEO of the Na­tional As­so­ci­a­tion of Area Agen­cies on Ag­ing, ad­vises fam­i­lies to start think­ing about how to get and pay for 24-hour care as soon as a loved one is di­ag­nosed with de­men­tia. “We’ve heard hor­ror sto­ries from the field from peo­ple who didn’t plan ahead,” Mark­wood says.

Long-term care in­sur­ance can ease the cost bur­den. But ex­perts say this type of in­sur­ance of­ten doesn’t cover what pa­tients need. Many fam­i­lies turn to Med­i­caid.

Mary Kaump spent nearly eight months gath­er­ing the pa­per­work for her mother-in-law’s Med­i­caid ap­pli­ca­tion. The doc­u­ments filled two large boxes; the bank costs for mak­ing check copies to­taled about $200 alone.

Ja­nis was ap­proved about a month later. They needed it badly, Mary Kaump says, de­spite her in-laws sav­ing $400,000 to care for them­selves in old age and “thought it was a lot of money.”

The process could over­whelm any­one. Lewis sug­gests peo­ple seek ad­vice from el­der-care at­tor­neys, who can help nav­i­gate the fi­nan­cial morass, sort out powerof-at­tor­ney is­sues and help pa­tients write liv­ing wills. Area agen­cies on ag­ing or non-prof­its like the Alzheimer’s As­so­ci­a­tion can help, as can geri­atric care man­agers — although many con­sul­tants charge a fee, and those who don’t of­ten are as­so­ci­ated with spe­cific nurs­ing homes.

One way to en­sure Medi­care cov­er­age kicks in is to be on top of the tech­ni­cal­ity of whether a pa­tient is ad­mit­ted to the hos­pi­tal or is just un­der ob­ser­va­tion. That dis­tinc­tion can make the dif­fer­ence be­tween a pa­tient get­ting cov­er­age for their med­i­cal needs and phys­i­cal, speech and oc­cu­pa­tional ther­apy at a nurs­ing home.

“Doc­tors can still make a change if you haven’t been ad­mit­ted,” says Stein. “The squeaky wheel of­ten gets greased.”

PHOTOS BY STAN GODLEWSKI, FOR USA TO­DAY

Ran­dall Kaump, with his mother, Ja­nis Kaump, 97, in her $13,000-amonth nurs­ing home.

Judi Stein, ex­ec­u­tive di­rec­tor of the Cen­ter for Medi­care Ad­vo­cacy.

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