My Alzheimer’s Nightmare and America’s Imminent Calamity

What I learned about our national Alzheimer’s debacle when I became responsible for my aunt.

This Illustration can only be used with the Tiffany Stanley piece that originally ran in the 10/4/2014 issue of National Journal magazine. 
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Tiffany Stanley
Oct. 3, 2014, 1 a.m.

I be­came an Alzheimer’s care­giver the week of my 29th birth­day. It was Au­gust 2012, and I was stand­ing at my kit­chen counter in Wash­ing­ton when I got a call from a fam­ily friend telling me, “We have a prob­lem.” My fath­er had been hos­pit­al­ized with con­gest­ive heart fail­ure. For sev­en years, he’d been the primary care­giver for his older sis­ter, who had Alzheimer’s dis­ease. Without his over­sight, she had fol­lowed his hos­pit­al­iz­a­tion with one of her own after col­lapsing in her bed­room from de­hyd­ra­tion, or low blood sug­ar, or both. My 66-year-old aunt was a wid­ow with no chil­dren. My fath­er was a di­vorced bach­el­or, and I was an only child. They were my re­spons­ib­il­ity.

I had thought I would drive the eight hours to my ho­met­own in South Car­o­lina to get my aunt, Jack­ie Bel­coe, settled back at home, and per­haps hire a nurse to come help out dur­ing the day. But when I got there, I found a much graver situ­ation than I had ex­pec­ted.

Tucked in­to her hos­pit­al bed at Lex­ing­ton Med­ic­al Cen­ter, Jack­ie looked so frail and sick that it was heart­break­ing. She had been a hairdress­er for many years and once owned her own salon. She was the wo­man who taught me to wear lip­stick, who nev­er left the house without her mas­cara on and her blond bob per­fectly styled. Now, her hair was mat­ted and un­kempt. She needed a bath and her teeth brushed.

In the emer­gency room, a nurse had cut the ur­ine-soaked T-shirt off her  body. When the para­med­ics found her, she told them she was 19 and lived at home with her par­ents.

Though her par­ents were no longer alive, it was true that she lived in the house where she had grown up. I soon learned that con­di­tions there were as de­plor­able as the state she was found in. Her bed and sheets were soiled, and dirty laun­dry had been left be­side the wash­er. A trail of fe­ces stained the car­pet from the bed to the bath­room. It was clear that Jack­ie, like many late-stage de­men­tia pa­tients, had be­come in­con­tin­ent — a fact that per­haps a care­giver who was also a broth­er was too ashamed to ad­mit. Full trash bags were piled in the kit­chen. Shards of broken cups were scattered on the floor. The mess had at­trac­ted pests, and mice and flies had in­vaded the brick ranch house.

My dad fought me when I first sug­ges­ted mov­ing Jack­ie to an as­sisted-liv­ing fa­cil­ity.

I traced the chaos to my fath­er’s own de­clin­ing health. That spring, after years with a weak heart, he took leave from work. He tried to stay up­beat and not worry me. I had stopped by to see them in re­cent months, but kept my vis­it short. It was so hard, see­ing Jack­ie the way she was. Now, I wondered, how had I missed that something was ter­ribly wrong? Or had I just not wanted to see?

For years, I had been pres­sur­ing my dad to think about the long-term plan. What would we do if Jack­ie needed more sup­port than we could provide at home? Should we de­cide on a fa­cil­ity where we could place her if the time came?

We had to con­sider a nurs­ing home, I as­sumed. My hand had been forced. Na­ively, at first I didn’t think about the money in­volved. It had been a re­lief when Jack­ie reached age 65, with all its at­tend­ant pub­lic be­ne­fits. Surely, I thought, Medi­care would cov­er the kind of care she needed.

“There is noth­ing med­ic­ally wrong with her,” the hos­pit­al so­cial work­er told me.

I was in­cred­u­lous. “What do you mean noth­ing is wrong with her?” I im­plored. “Her brain is de­cay­ing. If she was left alone, she would die.”

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(Ad­rià Fruitós)The so­cial work­er in­formed me that there was noth­ing wrong with Jack­ie that war­ran­ted a longer hos­pit­al stay or a trans­fer to a skilled nurs­ing home. What she meant was that Jack­ie needed cus­todi­al care — help with eat­ing, dress­ing, and bathing. She needed a watch­ful eye, the adult equi­val­ent of day care. She did not need the as­sist­ance of a re­gistered nurse or an­oth­er med­ic­al pro­fes­sion­al who could ad­min­is­ter IVs or mon­it­or com­plic­ated equip­ment and treat­ments.

Medi­care pays for hos­pit­al stays and short-term, skilled nurs­ing care for older Amer­ic­ans. It does not cov­er the kind of cus­todi­al care Jack­ie re­quired, and it gen­er­ally does not pay for long-term stays in a nurs­ing home or a de­men­tia care unit, a fact nearly 40 per­cent of Amer­ic­ans over 40 don’t fully real­ize, ac­cord­ing to a poll from the As­so­ci­ated Press-NORC Cen­ter for Pub­lic Af­fairs Re­search. Medi­caid, de­signed to provide health care to the poorest Amer­ic­ans, can pay for nurs­ing home res­id­ence and long-term care. However, in some states, such as South Car­o­lina, it can­not be used to cov­er room and board in as­sisted liv­ing or an as­sisted-liv­ing fa­cil­ity’s de­men­tia care unit — that is, the kinds of places that provide cus­todi­al care to those who don’t qual­i­fy for nurs­ing homes. Medi­caid sup­ports some at-home ser­vices, but only if states ap­ply for waivers. (There is also a pro­gram in South Car­o­lina and oth­er states that can sup­ple­ment pay­ments to as­sisted-liv­ing fa­cil­it­ies for Medi­caid-eli­gible res­id­ents, but Jack­ie, like many oth­er seni­ors, did not meet its strin­gent in­come and re­source lim­its.)

Jack­ie did not qual­i­fy for Medi­caid out­right: Her as­sets and her monthly So­cial Se­cur­ity in­come of $1,223 dis­qual­i­fied her from South Car­o­lina’s ba­sic 2012 Medi­caid lim­its of $2,000 in re­sources and a monthly in­come of just over $900 (the lim­it is now $973). Giv­en her needs, she could have pos­sibly qual­i­fied for some in-home be­ne­fits — such as vis­its from a nurs­ing aide — through the state’s Medi­caid pro­grams, some of which have high­er in­come thresholds. But it would have taken months to get through the pa­per­work, and even with some Medi­caid sup­ports, I knew she needed full-time care­giv­ing, a role my fath­er could no longer ful­fill.

My dad fought me when I first sug­ges­ted mov­ing Jack­ie to an as­sisted-liv­ing fa­cil­ity. He didn’t want to in­sti­tu­tion­al­ize her. He also didn’t know how we were go­ing to pay for it.

I soon learned what my fath­er already knew: Bro­chure after bro­chure in his files showed glossy pho­tos of lux­ury de­men­tia care units in our area with 24-hour su­per­vi­sion, se­cured ac­cess to pre­vent pa­tients from wan­der­ing, and life-en­rich­ment pro­grams for the memory-im­paired. I called them. A fam­ily mem­ber toured many of them. Most cost between $4,000 and $6,000 a month out-of-pock­et. My dad made just un­der $29,000 a year work­ing as a weld­er in the main­ten­ance de­part­ment at the Uni­versity of South Car­o­lina. His house was on the brink of fore­clos­ure. Years of health crises had left him and Jack­ie with very little sav­ings. The an­nu­al cost of an as­sisted-liv­ing fa­cil­ity with de­men­tia care was more than double what my fath­er made an­nu­ally and nearly four times Jack­ie’s in­come. What I had as­sumed was pro­cras­tin­a­tion or deni­al on my fath­er’s part was really para­lys­is.

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Hos­pit­als, though, do not like you to over­stay your wel­come, and Jack­ie had not been a mod­el pa­tient. More than once, she had got­ten out of bed and wandered down the hall and in­to oth­er pa­tients’ rooms. She got agit­ated, and the staff had to phys­ic­ally re­strain her, wrap­ping her in a vest so she could no longer move. She grew so fit­ful that a doc­tor pre­scribed her a re­gi­men of anti-anxi­ety drugs, hop­ing she would just go to sleep.

On the day Jack­ie was dis­charged, it was nearly im­possible to wake her. The com­bin­a­tion of med­ic­a­tion and a new en­vir­on­ment had made her sleep­ing pat­terns even more er­rat­ic than usu­al. She ap­peared leth­ar­gic to the point of be­ing cata­ton­ic.

Soon, however, she be­came more ag­gres­ive. She gripped the sheets tight­er each time I tried to re­move them. When I fi­nally had her sit­ting up, she didn’t want to put on the pair of pants I had brought her. I lif­ted her hos­pit­al gown to put them on her my­self. “Stop! Stop!” she yelled. “What are you do­ing?” In a flash of an­ger, she pulled her fist back to hit me. She re­len­ted when I grabbed her hand.

“What are you do­ing?” she kept re­peat­ing, as we fought over get­ting dressed. “What are you do­ing?”

The truth was I didn’t know what I was do­ing. And I didn’t know what we were go­ing to do.

THE FIRST DIA­GNOSED Alzheimer’s pa­tient was a wo­man named Au­guste De­ter, who entered a Ger­man men­tal hos­pit­al in 1901, at the age of 51, after her fam­ily could no longer care for her at home. Her memory and lan­guage skills were poor, she had not been sleep­ing, and she seemed de­lu­sion­al. “I have lost my­self,” she told Dr. Alois Alzheimer, the phys­i­cian who ex­amined her. De­ter spent the next four and a half years in­sti­tu­tion­al­ized, as her mind and body func­tions de­teri­or­ated. She died in 1906, and af­ter­ward, when Alzheimer ex­amined her brain tis­sue un­der a mi­cro­scope, he spot­ted the at­rophy, tangles, and plaques that still sig­ni­fy the dis­ease.

Memory loss has been as­so­ci­ated with aging for mil­len­nia, but it was not un­til after Dr. Alzheimer’s dis­cov­ery that sci­ent­ists really began to won­der wheth­er senil­ity was an ab­nor­mal part of grow­ing old. Un­til the 20th cen­tury, life ex­pect­ancy for Amer­ic­ans was re­l­at­ively low by today’s stand­ards (around 47 years in 1900). But as more and more people lived in­to their 70s and 80s, to the years when de­men­tia most of­ten strikes, the dis­ease be­came much more com­mon. In 1974, Con­gress passed a law es­tab­lish­ing the Na­tion­al In­sti­tute on Aging to deal with the bur­geon­ing eld­erly pop­u­la­tion’s needs. With­in a dec­ade of its launch, NIA had es­tab­lished 10 Alzheimer’s dis­ease re­search cen­ters. At the same time, there was a grow­ing pub­lic aware­ness of the con­di­tion. Pres­id­ent Re­agan des­ig­nated Na­tion­al Alzheimer’s Dis­ease Week in Novem­ber 1982, only to re­veal his own struggle with the  ill­ness a dozen years later.

Jackie Belcoe at work in her salon in the early 1980's. (Courtesy of the Stanley Family) Courtesy of the Stanley Family

Jack­ie Bel­coe at work in her salon in the early 1980’s. (Cour­tesy of the Stan­ley Fam­ily)Today, as the baby boomers age, Alzheimer’s has reached epi­dem­ic pro­por­tions. More than 5 mil­lion Amer­ic­ans cur­rently have the dis­ease, with more than 400,000 new cases each year — num­bers that are ex­pec­ted to at least double by 2050. While Alzheimer’s is the most com­mon cause of de­men­tia, there are dozens of re­lated dis­orders, in­clud­ing Par­kin­son’s, de­men­tia with Lewy bod­ies, vas­cu­lar de­men­tia, and fronto-tem­por­al de­men­tia.

The rhet­or­ic around Alzheimer’s ad­vocacy in re­cent years has been fo­cused on find­ing a cure. But the U.S. gov­ern­ment spends less than $600 mil­lion an­nu­ally on Alzheimer’s re­search — com­pared with $3 bil­lion for HIV/AIDS and more than $5 bil­lion for can­cer. And of the 10 lead­ing causes of death in the United States, Alzheimer’s is the only one without a means to pre­vent or treat it. Al­though dec­ades of re­search have yiel­ded im­port­ant dis­cov­er­ies, Alzheimer’s largely re­mains a mys­tery. “Any­body who says we’re get­ting close to a cure is ly­ing,” says Howard Gleck­man, a seni­or fel­low at the Urb­an In­sti­tute and an eld­er-care ex­pert.

Lost too of­ten in the dis­cus­sion about a cure has been a much more ba­sic, more im­me­di­ate, and in many ways more im­port­ant ques­tion: How can we bet­ter care for those who suf­fer from the dis­ease? De­men­tia comes with stag­ger­ing eco­nom­ic con­sequences, but it’s not the drugs or med­ic­al in­ter­ven­tions that have the biggest price tag; it’s the care that de­men­tia pa­tients need. Last year, a land­mark Rand study iden­ti­fied de­men­tia as the most ex­pens­ive Amer­ic­an ail­ment. The study es­tim­ated that de­men­tia care pur­chased in the mar­ket­place — in­clud­ing nurs­ing-home stays and Medi­care ex­pendit­ures — cost $109 bil­lion in 2010, more than was spent on heart dis­ease or can­cer. “It’s so costly be­cause of the in­tens­ity of care that a de­men­ted per­son re­quires,” Mi­chael Hurd, who led the study, told me. So­ci­ety spends up to $56,000 for each de­men­tia case an­nu­ally, and the price of de­men­tia care na­tion­wide in­creases to $215 bil­lion per year when the value of in­form­al care from re­l­at­ives and vo­lun­teers is in­cluded.

Most of the care provided to Amer­ic­ans with de­men­tia comes from un­paid fam­ily mem­bers. “Fam­ily care­givers really are the back­bone of long-term care in this coun­try,” says John Schall of the Care­giver Ac­tion Net­work. A ma­jor­ity of de­men­tia pa­tients live and die at home — which saves tax­pay­ers in the long run but forces care­givers to sac­ri­fice work and wages. Care­giv­ing can be a long, gruel­ing task: Alzheimer’s pa­tients live, on av­er­age, eight to 10 years after dia­gnos­is, and they even­tu­ally need round-the-clock care. There are more than 15 mil­lion un­paid de­men­tia care­givers in the United States, ac­cord­ing to the Alzheimer’s As­so­ci­ation. Most of them are wo­men, though a grow­ing num­ber are men; nearly 1 mil­lion are between the ages of 18 and 29; some are seni­ors them­selves, caring for a dis­abled spouse; and many are in their 40s and 50s, still work­ing, and some­times caring for chil­dren and an aging par­ent. At the same time, fam­ily sys­tems are chan­ging, with few­er chil­dren born to help older adults, and more mo­bile pop­u­la­tions, mean­ing fam­il­ies live hun­dreds of miles apart, sever­ing the sup­port net­works that tra­di­tion­ally helped spread the bur­den of care.

More than 5 mil­lion Amer­ic­ans cur­rently have the dis­ease, with more than 400,000 new cases each year — num­bers that are ex­pec­ted to at least double by 2050.

“We have no ra­tion­al policy to sup­port care­givers,” says Dr. Joanne Lynn, dir­ect­or of the Al­tar­um In­sti­tute’s Cen­ter for Eld­er Care and Ad­vanced Ill­ness. Pub­lic sup­ports such as Medi­care and Medi­caid do not ad­equately cov­er the care de­men­tia pa­tients need at home. There are not ap­pro­pri­ate Medi­care re­im­burse­ments for a fam­ily mem­ber to meet with med­ic­al per­son­nel about care plans and on­go­ing sup­ports. State pro­grams for re­lief ser­vices — such as res­pite care or adult day pro­grams that al­low fam­ily mem­bers to take a break — are sporad­ic. Mean­while, the av­er­age cost of caring for a pa­tient in a skilled nurs­ing fa­cil­ity is more than $80,000 a year. As Dr. Bruce Chernof of the SCAN Found­a­tion, which ad­voc­ates for bet­ter care of older adults, puts it: “We need to move bey­ond say­ing fam­ily care­givers need to be ‘sup­por­ted,’ and we need to be­gin to really think about what that means.”

For years, the go-to pub­lic-policy stance has been to re­com­mend that more people buy long-term-care in­sur­ance, but very few do. Ac­cord­ing to the Robert Wood John­son Found­a­tion, less than 8 per­cent of Amer­ic­ans have pur­chased long-term-care in­sur­ance policies that could be drawn on in the case of cog­nit­ive impair­ment. These policies can be ex­pens­ive, and the price only goes up for in­di­vidu­als as they age and their health wor­sens; moreover, the fin­an­cial bur­den may be com­poun­ded when they move onto fixed in­comes. In re­cent years, com­pan­ies have been pulling out of the long-term-care mar­ket, find­ing the policies un­sus­tain­able. Some now only of­fer policies that provide three to five years of care — about half of the time a typ­ic­al Alzheimer’s pa­tient needs sup­port.

The Af­ford­able Care Act tried to rem­edy the dearth of op­tions. En­acted as part of the health care le­gis­la­tion, the CLASS Act offered vol­un­tary, pub­lic long-term-care in­sur­ance. But in 2011, the Obama ad­min­is­tra­tion can­celed the pro­gram be­fore it ever got star­ted, say­ing that it was not fin­an­cially feas­ible. “It was not struc­tured in a way that would get enough par­ti­cip­a­tion among the healthy to sup­port the pop­u­la­tions that would be served,” says Judy Fed­er, a pub­lic-policy pro­fess­or at Geor­getown Uni­versity who re­searches long-term care.

Without an in­sur­ance safety net, the oth­er op­tion is for Amer­ic­ans to save enough for re­tire­ment to cov­er ex­penses out-of-pock­et, but, again, very few do. The me­di­an amount that work­ing-age Amer­ic­an house­holds have saved for re­tire­ment is $3,000, ac­cord­ing to a Na­tion­al In­sti­tute on Re­tire­ment Se­cur­ity sur­vey, and the Robert Wood John­son Found­a­tion re­ports that less than 10 per­cent of Amer­ic­ans save spe­cific­ally for long-term care. “The full risk and care­giv­ing bur­den and fin­an­cial bur­den falls on the people who un­pre­dict­ably get hit with long-term care needs,” Fed­er says. “The money and the ser­vice is com­ing from some­where — it’s com­ing at enorm­ous cost, per­son­al as well as fin­an­cial, for fam­il­ies.”

These long-term-care costs were cer­tainly a cru­cial factor for my fam­ily. In those first days in South Car­o­lina, as I sifted through Jack­ie’s fin­an­cial re­cords, I found a copy of her old long-term-care policy. A few years be­fore, my dad had be­gun to fill out a claim, only to find that Jack­ie had re­cently can­celed the policy. We still don’t know why she stopped the plan — the cost, maybe? By the time we thought to ask, her mind was too far gone to know.

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Without that slip of pa­per, our op­tions were lim­ited and the prices were high. So it seemed like a boon when we came across Lex­ing­ton Gar­dens, an as­sisted-liv­ing fa­cil­ity two miles from my dad’s house. He could vis­it her whenev­er he wanted. It was clean and bright and had the feel of an up­scale apart­ment build­ing. It did not have a de­men­tia care unit, but the staff as­sured me that many res­id­ents had de­men­tia and the staff was ex­per­i­enced in caring for res­id­ents with memory impair­ment. At $2,350 a month, it was by far the most af­ford­able op­tion we found. A staffer even men­tioned that the cost might go down after Jack­ie had settled in and needed less help. They put her in a private room on the second floor. At our re­quest, they painted the walls a happy shade of yel­low. Ex­ten­ded fam­ily helped me haul pieces of her fur­niture up­stairs, and we hung art­work from her home, all meant to give the space some sense of fa­mili­ar­ity.

On her first night in the new room, I hes­it­ated to leave her. I couldn’t de­cide wheth­er to shut her door — what if she needed something? Who would hear her call? As I left, I kept the door open a crack and, walk­ing away, hoped for the best.

THERE IS A STORY told in my fam­ily about a de­fin­ing mo­ment in the lives of my fath­er and aunt. My dad was 18, the last child liv­ing at home, when his moth­er col­lapsed in the den, likely from a stroke. He ran to her, and she died in his arms. Her death, while sud­den, was not un­ex­pec­ted. From the time my fath­er was born, his moth­er’s body was riddled with dia­betes, in an era when the dis­ease meant a cer­tain, steady de­cline. She suffered a series of de­bil­it­at­ing strokes, and by the time he was 12, she had gone blind. Jack­ie was the only girl in the fam­ily and be­came a sur­rog­ate moth­er. She cooked and she cleaned and she took care of her young­er broth­er.

Jackie, on the left, with her father, older brother Jimmy, and younger brother John in the early 1950s. "When I think of Jackie's relationship to my father, John, it is this: part sister, part mother." (Courtesy of the Stanley Family) Courtesy of the Stanley Family

Jack­ie, on the left, with her fath­er, older broth­er Jimmy, and young­er broth­er John in the early 1950s. “When I think of Jack­ie’s re­la­tion­ship to my fath­er, John, it is this: part sis­ter, part moth­er.” (Cour­tesy of the Stan­ley Fam­ily)When I think of Jack­ie’s re­la­tion­ship to my fath­er, John, it is this: part sis­ter, part moth­er. Their bond puts his even­tu­al care of her in­to sharp­er fo­cus. After he and my moth­er di­vorced, my fath­er moved back to his fam­ily homestead, to the house next to Jack­ie’s. My aunt dec­or­ated my room with a flor­al bed­spread and match­ing cur­tains. I was nine at the time, and most of the week­ends I spent with my dad were really spent next door at Jack­ie’s house, on her screened-in back porch or sit­ting with her in the den. She was the keep­er of our fam­ily stor­ies, the one with all the photo al­bums and re­cipes. Every hol­i­day and most Sat­urdays, I was there in her kit­chen, eat­ing at her table.

My aunt was mar­ried then, and had been since 1971. Her mar­riage to my Uncle Gerry was not a happy uni­on. He was a stern man and of­ten ab­sent, away work­ing shifts as a se­cur­ity guard and later as a po­lice of­ficer. Though they nev­er di­vorced, he fi­nally left while I was in col­lege. He took their sav­ings, opened a line of cred­it on their house, and moved to Costa Rica. I sus­pect now that, as her spouse, he saw what we would later learn: that her mind was fail­ing and fall­ing fur­ther in­to de­men­tia. He came home once, but after see­ing Jack­ie’s di­min­ished state, he told my fath­er, “I’m not ever com­ing back again.” He died in 2011 of a heart at­tack, leav­ing Jack­ie none of his  as­sets. My fath­er and I ar­ranged through the em­bassy in San Jose to have his body cremated and his ashes scattered off the coast.

By then, it had been six years since I had first no­ticed something was wrong with Jack­ie. In 2005, on a trip to my col­lege gradu­ation, she for­got her in­sulin — a mis­take so un­like her, giv­en her moth­er’s his­tory. A re­l­at­ive had to drive her to a 24-hour phar­macy in the middle of the night. Three months later, when my fath­er was hav­ing an­oth­er round of heart sur­gery, Jack­ie was with me in the wait­ing room, but she seemed con­fused and in­cap­able of help­ing me make im­port­ant de­cisions. Later that sum­mer, she would call me at odd hours, in tears. She wasn’t sleep­ing, she said. Soon she stopped call­ing me al­to­geth­er.

That fall, after a bat­tery of tests, we had an an­swer: de­men­tia. Later, it was labeled prob­able early-on­set Alzheimer’s. A law­yer pre­pared a liv­ing will and power-of-at­tor­ney pa­pers, which I signed along with my dad. I had al­ways known I would take care of Jack­ie in her old age. But de­men­tia at age 59 was not what any of us had ima­gined.

In the ini­tial stages of the dis­ease, my dad and aunt man­aged quite well. He would walk the well-worn path between their yards, wak­ing her in the morn­ing, cook­ing her meals, and put­ting her to bed at night. His job was just a six-minute drive away from their homes, so he could drop by to check on her dur­ing the day. She wasn’t a wan­der­er then, and she eas­ily handed over the keys to her car.

My dad kept a bur­gundy bind­er for Jack­ie with hand-drawn charts, where she re­cor­ded her daily activ­it­ies, keep­ing a log for doc­tors’ vis­its. She could note which medi­cines she took at what hour, how she was sleep­ing and feel­ing. “I’ve just got­ten up. Boy, do I feel res­ted,” she wrote in May 2007. In the early years, she could busy her­self around the house. “Thursday morn­ing, worked in yard, pulling weeds and cre­at­ing a new flower bed.” But still she knew she wasn’t well. “It’s 3:16 a.m. and I’m still up,” she wrote. “I must re­mem­ber to set an alarm. “¦ I’ve got to get back to a nor­mal, day-and-night sched­ule.”

My fath­er be­came in­creas­ingly wor­ried about their fu­tures, and he fret­ted es­pe­cially about money. The truth was that Jack­ie had al­ways been a spend­er, not a saver. She was ter­rible with money and had only got­ten worse with it as her Alzheimer’s pro­gressed, which is typ­ic­al of those with the dis­ease. Once, my dad came home to find a pile of boxes from a home-shop­ping net­work filled with ex­pens­ive or­ders she didn’t re­mem­ber. She racked up more than $30,000 on her cred­it cards be­fore he real­ized it, closed the ac­counts, and star­ted work­ing with the com­pan­ies to pay off her debt. The dis­ease seemed to age him along­side her.

Health care pro­viders of­ten didn’t know what to tell me. “I don’t want to blame my primary-care col­leagues, but they haven’t been trained,” says Dr. Pierre Tari­ot.

Alzheimer’s places a heavy toll on fam­ily care­givers. Their own health suf­fers. De­men­tia care­givers re­port high­er rates of de­pres­sion and stress than the gen­er­al pop­u­la­tion. Some stud­ies show they have an in­creased risk for heart dis­ease and stroke as well as high­er mor­tal­ity rates. Their own use of med­ic­al ser­vices, in­clud­ing emer­gency-room vis­its and doc­tors’ ap­point­ments, goes up, and their yearly health care costs in­crease by nearly $5,000, ac­cord­ing to re­search from the Uni­versity of Pitt­s­burgh and the Na­tion­al Al­li­ance for Care­giv­ing. “Caring for a per­son with de­men­tia is par­tic­u­larly chal­len­ging, caus­ing more severe neg­at­ive health ef­fects than oth­er types of care­giv­ing,” reads an art­icle in the Amer­ic­an Journ­al of Nurs­ing.

When I brought my fath­er home from the hos­pit­al, his heart and kid­neys were fail­ing. There was talk of more sur­gery, but only to give him a bet­ter qual­ity of life, not to cure him. His body was break­ing down, and his own hold on life, we both knew, was tenu­ous.

AFTER JACK­IE HAD lived at Lex­ing­ton Gar­dens a few months, I wondered if I had made a mis­take. The staff did not seem well trained to handle Alzheimer’s after all. They would try to ad­min­is­ter her med­ic­a­tion in the early even­ing, even though this was the time of day she was most agit­ated — a very com­mon syn­drome in de­men­tia pa­tients, called sun­down­ing. After an in­spec­tion from the state health de­part­ment, Lex­ing­ton Gar­dens in­formed me that they had been told to move Jack­ie from the second to the first floor be­cause she couldn’t walk well. She was get­ting fre­quent ur­in­ary tract in­fec­tions. Staffers didn’t seem to keep her on a sched­ule. Sev­er­al times when I stopped by after 11 a.m. she was still in bed, not dressed or fed or toi­leted, which I felt only made her night out­bursts more fre­quent.

I got calls from Lex­ing­ton Gar­dens in the middle of the night and at the of­fice. I had trouble sleep­ing. My job suffered. I barely wrote any­thing. I took days and weeks off. I answered work calls from the as­sisted-liv­ing park­ing lot. I tried to work in wait­ing rooms.

In some re­spects, it felt hard to com­plain about the fa­cil­ity, though. Many of the staffers were nurs­ing aides and med­ic­a­tion tech­ni­cians mak­ing low wages — on av­er­age these jobs pay between $8 and $12 an hour — and they labored long hours do­ing the work I deemed too dif­fi­cult.

Some in­cid­ents were more dan­ger­ous than oth­ers. One night, a staff mem­ber called to let me know that Jack­ie had walked out the back door un­noticed and wandered over to a nearby build­ing. An­oth­er time, the fa­cil­ity no­ti­fied me that Jack­ie had gone out the front door and was found sit­ting on the side­walk. How long she was out there, I don’t know. Lex­ing­ton Gar­dens sits on a front­age road where cars speed past. Just over a grassy hill is a busy in­ter­state. All I could think about was what would have happened if she had walked a little farther.

(Adrià Fruitós) Adrià Fruitós

(Ad­rià Fruitós)Jack­ie was also fall­ing fre­quently. She was found in the kit­chen on the floor; she was found re­peatedly on the floor of her room, ac­cord­ing to her med­ic­al re­cords. Each time, the fa­cil­ity would send her un­ac­com­pan­ied to the emer­gency room to be ex­amined. (This is not an un­usu­al prac­tice for some as­sisted-liv­ing fa­cil­it­ies.) Jack­ie went to the ER 11 times in nine months for mostly routine ex­am­in­a­tions. My moth­er of­ten be­came the proxy for her former sis­ter-in-law when I wasn’t in town. She would meet her at the hos­pit­al and keep me pos­ted if I needed to catch the next flight home.

The hos­pit­al seemed like the least ef­fi­cient place to treat Jack­ie. “You go in hos­pit­al emer­gency de­part­ments and they’re filled with pa­tients with de­men­tia who are there be­cause they fell, be­cause they got bed­sores or ur­in­ary tract in­fec­tions, be­cause they wandered,” Gleck­man ex­plains. Says Car­ol Stein­berg of the Alzheimer’s Found­a­tion of Amer­ica: “Be­cause there is a lack of med­ic­al-school train­ing in de­men­tia care, some­times I think there’s a lack of un­der­stand­ing on the part of the hos­pit­al staff. If you think of a typ­ic­al ER — massive con­fu­sion, crowds of people — then think of an Alzheimer’s pa­tient who has con­fu­sion already and lim­ited com­mu­nic­a­tion skills, that en­vir­on­ment can be very fright­en­ing at a time when a per­son’s health is at risk already.”

Health care pro­viders of­ten didn’t know what to tell me. I couldn’t seem to find an ex­pert who could really help me nav­ig­ate the sys­tem. “I don’t want to blame my primary-care col­leagues, but they haven’t been trained,” says Dr. Pierre Tari­ot, an in­tern­ist and psy­chi­at­rist who runs the Ban­ner Alzheimer’s In­sti­tute. Only “a very small minor­ity of pa­tients with de­men­tia” are treated ap­pro­pri­ately for their dia­gnos­is, he ex­plains. Mean­while, “more than half of de­men­tia pa­tients re­ceive grossly in­ap­pro­pri­ate treat­ment that ac­tu­ally makes symp­toms worse,” in­clud­ing drugs to calm agit­a­tion that make pa­tients more prone to fall­ing.

After one of my aunt’s more har­row­ing trips to the hos­pit­al, a kind emer­gency-room doc­tor wrote the name of a neur­o­lo­gist she trus­ted on a slip of pa­per. We had an ap­point­ment the fol­low­ing month, and that spe­cial­ist was the closest I ever came to co­ordin­at­ing Jack­ie’s care. But aside from re­mov­ing ex­traneous drugs from Jack­ie’s re­gi­men, there wasn’t much she could do. It was hard to tell where Jack­ie fit in the Alzheimer’s sta­ging pro­cess. Giv­en her youth and her re­l­at­ively good phys­ic­al health, the neur­o­lo­gist ad­vised me to pre­pare for the long haul: She could live with the dis­ease an­oth­er 10 years.

To pre­pare fin­an­cially for the im­pend­ing dec­ade, I began selling off Jack­ie’s pos­ses­sions. I hired an auc­tion house to sell any­thing of value — her china, her fur­niture, her sil­ver. A vet­er­an bought her used car. A loc­al jew­el­er offered cash for her gold bangles and neck­laces. For a few months, checks began show­ing up, in amounts of $100 and $500 and $2,000. But the money was gone to the as­sisted-liv­ing fa­cil­ity al­most as soon as it ar­rived.

By chance, I also dis­covered that there was one bright spot in Jack­ie’s mar­riage to Gerry: Through him, she was en­titled to mon­et­ary mil­it­ary be­ne­fits. Gerry had been a dec­or­ated Vi­et­nam vet­er­an and served in the Army for more than 20 years, and Jack­ie should have been re­ceiv­ing a pen­sion since his death. She was also due funds from the un­der­used and little-known Aid and At­tend­ance pro­gram, which sup­ple­ments the pen­sions of vet­er­ans and their spouses to meet needs in­clud­ing cus­todi­al care. Both be­ne­fits to­geth­er could have giv­en Jack­ie an ad­di­tion­al in­come of at least $2,500 per month. I filled out the pa­per­work with the Vet­er­ans Be­ne­fits Ad­min­is­tra­tion. We were told to sit tight. The pro­cess for Aid and At­tend­ance can take up to nine months or more. So we waited.

MY FATH­ER DIED on a Sat­urday morn­ing at the end of Oc­to­ber 2012. I was un­der­ground on the New York City sub­way when I found out. A fam­ily mem­ber had been try­ing to reach me and couldn’t be­cause of the lack of cell ser­vice, so in her own state of shock she frantic­ally texted, “911 911 please call johnny passed!” — which went through. At the next stop I rushed out of the sta­tion and up the stairs, ex­it­ing some­where on the Up­per West Side. I called my mom. I star­ted cry­ing hys­ter­ic­ally. A man dig­ging through a garbage can asked if I was OK. Two wo­men saw me from the corner and rushed to my side. “My dad died,” I told them. “My dad just died.” They hailed me a taxi, which whisked me off to the air­port and onto a flight to South Car­o­lina.

The day my fath­er died, he had got­ten up and showered. He was freshly shaven when he was found. He had the ra­dio on, and his lunch was cook­ing in the oven. Some­where in the midst of this routine, he sat down on the sofa and closed his eyes and didn’t wake up. In a way, it was the end­ing he had wanted. He died at home, not in a hos­pit­al. He was 63.

I de­cided to tell Jack­ie the news, against the ad­vice of some clini­cians and on the ad­vice of oth­ers. No one seemed in agree­ment on wheth­er it would in­flict un­due pain, and I felt a com­pul­sion to let her know, even if she didn’t re­mem­ber. Per­haps it was selfish; she was the only oth­er per­son who would have mourned him like I did. When I told her, she said she couldn’t be­lieve it. She didn’t cry. We sat in si­lence for a few minutes. Then she said, “My moth­er will be here soon.” “She will?” I asked. “We’re go­ing to Geor­gia for a fu­ner­al,” she said, and began to re­call in barely co­her­ent phrases the death of a re­l­at­ive who had passed some 60 years ago.

For months af­ter­ward, when we got in­to the car or were sit­ting at the doc­tor’s of­fice, Jack­ie would ask, “Where is Johnny? Have you seen Johnny?” And I would reply, in the calmest voice I could muster, “He’s not here right now,” as if at any mo­ment he would walk through the door.

IN JANU­ARY 2013, Jack­ie’s primary-care doc­tor, whom she saw through Lex­ing­ton Gar­dens, spot­ted a sore on the bot­tom of her toe. Such le­sions can be dan­ger­ous for the ill or eld­erly, es­pe­cially those with a his­tory of dia­betes; they can lead to in­fec­tion, gan­grene, or pos­sible am­pu­ta­tion. Lex­ing­ton Gar­dens had just hired a new res­id­ent care dir­ect­or, who called to let me know that the situ­ation was be­ing handled. She said Jack­ie needed to see a wound-care spe­cial­ist as soon as pos­sible and that she would make the ar­range­ments. But in late March, I learned that Jack­ie had not been to the spe­cial­ist at all over the past two months.

I kept think­ing if I could just get her vet­er­ans’ be­ne­fits, if I could just sell her house, if I could just get my feet un­der me, we could find a bet­ter situ­ation.

In a meet­ing the next day with the ex­ec­ut­ive dir­ect­or and an­oth­er staffer, I was told the care dir­ect­or re­spons­ible for that lapse had left some weeks be­fore for un­re­lated reas­ons. I also learned there were lim­its to how long a res­id­ent can stay in as­sisted liv­ing with a wound like Jack­ie’s. Her foot was no­tice­ably worse. She would now need home health nurses to come in sev­er­al times a week to change band­ages, and she would need weekly ap­point­ments at a loc­al wound-care cen­ter.

She would also need more-in­tens­ive care at the fa­cil­ity — in­clud­ing ad­ded as­sist­ance get­ting to and from meals, more fre­quent safety checks, and ex­tra help with hy­giene. For these tasks and oth­ers, we would need to pay Lex­ing­ton Gar­dens a high­er rate of $3,220 per month, which I signed off on. One of the most ded­ic­ated staffers took to keep­ing Jack­ie in the of­fice with her, to make sure she didn’t fall. I wanted the ar­range­ment to work. I knew that trans­fer­ring her to an­oth­er fa­cil­ity with more sup­ports would be twice the cost. I kept think­ing if I could just get her vet­er­ans’ be­ne­fits, if I could just sell her house, if I could just get my feet un­der me, we could find a bet­ter situ­ation.

Ul­ti­mately, the de­cision wasn’t mine to make. Three weeks after my meet­ing with the ex­ec­ut­ive dir­ect­or, I re­ceived a let­ter in the mail from Lex­ing­ton Gar­dens. “In re­view of Ms. Bel­coe’s in­cid­ents and her daily care needs, it ap­pears that Ms. Bel­coe has reached her max­im­um be­ne­fit from resid­ing in an as­sisted liv­ing en­vir­on­ment,” the ex­ec­ut­ive dir­ect­or wrote. “Ms. Bel­coe has had some type of un­safe event every month con­sist­ently since Au­gust 2012. She re­mains an ex­tremely high fall risk and her cog­ni­tion has de­clined to the point where she has be­come a threat to her­self.”

Jack­ie was be­ing kicked out. In hind­sight, it was the re­spons­ible thing for Lex­ing­ton Gar­dens to do: The home simply wasn’t cap­able of tak­ing care of a pa­tient at her stage of de­men­tia. The prob­lem was that the types of homes which could provide this care all seemed out of our price range. Still, I had no choice: I had 30 days to find her a new place to live.

As­sisted-liv­ing fa­cil­it­ies are reg­u­lated by the states, un­like nurs­ing homes, which are reg­u­lated by the fed­er­al gov­ern­ment. As­sisted liv­ing has be­come a boom­ing in­dustry over the last 20 years and provides many Amer­ic­ans with stop­gap care that is less in­tens­ive than the skilled med­ic­al as­sist­ance provided by nurs­ing homes. Des­pite the lower level of care, these fa­cil­it­ies of­ten house very ill people, in­clud­ing those with ad­vanced de­men­tia. (At least 42 per­cent of as­sisted-liv­ing res­id­ents have de­men­tia, ac­cord­ing to the Cen­ters for Dis­ease Con­trol and Pre­ven­tion.) The defin­i­tion of what con­sti­tutes an as­sisted-liv­ing fa­cil­ity is murky, and the qual­ity of care var­ies. These fa­cil­it­ies can range from de­men­tia care units for late-stage Alzheimer’s pa­tients to rooms that a health care work­er rents out of his or her private home. “Some of these places are ab­so­lute hell­holes,” Gleck­man says. “They’re frankly dan­ger­ous, and you need to have enough reg­u­la­tion to pre­vent that.”

Lex­ing­ton Gar­dens was part of Emer­it­us Seni­or Liv­ing, the largest chain of as­sisted-liv­ing fa­cil­it­ies in the coun­try. Two months after Jack­ie was dis­charged from Lex­ing­ton Gar­dens, ProP­ub­lica and Front­line re­leased an in­vest­ig­at­ive series al­leging a host of prob­lems and neg­lect at Emer­it­us res­id­ences. Re­port­ers A.C. Thompson and Jonath­an Jones wrote that in 2004 a wo­man with Alzheimer’s in a Texas Emer­it­us fa­cil­ity had wandered out­side and frozen to death. At an Emer­it­us home in Geor­gia in 2009, a man with de­men­tia died after swal­low­ing dish­wash­ing li­quid that was sup­posed to be in a se­cured cab­in­et. In 2012, a wo­man in a Pennsylvania Emer­it­us fa­cil­ity died in a locked bath­room, and it took the staff 36 hours to no­tice. In some of the re­por­ted in­cid­ents, fam­il­ies had already brought law­suits against Emer­it­us; one case in­volved a wo­man who died after her wounds were not prop­erly treated, res­ult­ing in a $22.9 mil­lion ver­dict against the com­pany.

In an em­ploy­ee memo at the time (which ProP­ub­lica pub­lished), Emer­it­us char­ac­ter­ized the series as an ac­count of “some isol­ated and un­for­tu­nate in­cid­ents.” The com­pany en­cour­aged staff mem­bers to post pos­it­ive com­ments about Emer­it­us through so­cial me­dia “to off­set the po­ten­tial neg­at­ive back­lash cre­ated.” Its pub­lic-re­la­tions team cre­ated a web­site called Emer­it­us Facts to counter 29 neg­at­ive claims in the re­port. Re­cently, com­pany spokes­wo­man Kristin Puck­ett told me via email, “The in­cid­ents that Front­line/ProP­ub­lica fea­tured happened years ago and were ex­cep­tions to the qual­ity care that takes place in our com­munit­ies. We con­tin­ue to make sure that our as­so­ci­ates are well trained and our com­pany has policies and pro­ced­ures in place that pro­mote qual­ity care.”

Jackie's home in West Columbia, South Carolina.  (Courtesy of the Stanley Family) Courtesy of the Stanley Family

Jack­ie’s home in West Columbia, South Car­o­lina.  (Cour­tesy of the Stan­ley Fam­ily)In Feb­ru­ary 2014, Thompson broke the news that Emer­it­us was un­der fed­er­al in­vest­ig­a­tion for its billing and busi­ness prac­tices. Puck­ett told me that the com­pany is “co­oper­at­ing fully with this on­go­ing in­vest­ig­a­tion.” (Lex­ing­ton Gar­dens was not men­tioned in the ori­gin­al ProP­ub­lica/Front­line series, or in Thompson’s Feb­ru­ary re­port.) On Ju­ly 31, 2014, Emer­it­us merged with an­oth­er large com­pany, Brook­dale Seni­or Liv­ing. The mer­ger means the new com­pany — to be known as Brook­dale Seni­or Liv­ing — will now care for more than 112,000 seni­ors in 46 states.

Less than a year after we left Lex­ing­ton Gar­dens, but be­fore the mer­ger with Brook­dale, there was a com­plete turnover in the fa­cil­ity’s man­age­ment staff, ex­cept for main­ten­ance, ac­cord­ing to the home’s on­line news­let­ter — a shift the com­pany con­firmed. Lex­ing­ton Gar­dens did not com­ment for this art­icle, re­fer­ring ques­tions to Brook­dale, though it did send me a copy of Jack­ie’s re­cords. Due to pri­vacy con­cerns, Brook­dale would not com­ment on the spe­cif­ics of Jack­ie’s care.

Last year, I sent a let­ter to the South Car­o­lina De­part­ment of Health and En­vir­on­ment­al Con­trol, de­tail­ing our fam­ily’s ex­per­i­ences at the fa­cil­ity. An of­fi­cial called me after he re­ceived my note and said the de­part­ment would be look­ing in­to the case. When I fol­lowed up re­cently, I re­ceived a let­ter from the de­part­ment stat­ing that in­spect­ors made an un­an­nounced vis­it to Lex­ing­ton Gar­dens in June 2014. They found that the fa­cil­ity was in vi­ol­a­tion of state laws and rules “in the areas of en­for­cing reg­u­la­tions, re­cord main­ten­ance, res­id­ent care/ser­vices and res­id­ent phys­ic­al ex­am­in­a­tion.” Ac­cord­ing to Puck­ett, “A plan of cor­rec­tion was sub­mit­ted to the state with­in the re­quired 15 days after re­ceiv­ing the cita­tion.” She ad­ded, “The com­munity has im­ple­men­ted the cor­rect­ive ac­tion and is await­ing the state’s an­nu­al in­spec­tion.”

LAST SUM­MER, I began reach­ing out to oth­er fam­il­ies deal­ing with Alzheimer’s. I wondered wheth­er my fam­ily was alone in our struggles. What began as a per­son­al en­deavor quickly be­came a re­port­ing pro­ject as I called people from loc­al sup­port groups, on­line net­works, and re­gion­al chapters of the Alzheimer’s As­so­ci­ation. Most of the fam­ily care­givers I found were as lost as I was.

I talked to a 75-year-old man tak­ing care of his 82-year-old wife with Alzheimer’s. He had to keep work­ing to sup­port them, so he left her home dur­ing the day. “We’ve got a gas stove, and I’ve got to make sure the burn­ers are off,” he said. Nights had so far been calm, but she wandered some­times. “A couple of neigh­bors have caught her down at the end of the street. What kind of locks do I have to put on the door?” he asked me.

In North­ern Vir­gin­ia, I sat at Sarah Har­ris’s kit­chen table and listened to her de­scribe the night she de­cided to in­sti­tu­tion­al­ize her hus­band, who even­tu­ally died from Alzheimer’s. “He didn’t sleep at all. He walked around the house. He would walk and walk,” she said. “It was prob­ably the one time that I was fear­ful. I was afraid to go to sleep be­cause I didn’t know what he was go­ing to do.” He cycled through three dif­fer­ent fa­cil­it­ies dur­ing the last two years of his life. “The first home, I hate to say it, but they were ab­us­ing him.” She said she found him soiled and tied down in re­straints. The next as­sisted-liv­ing fa­cil­ity kicked him out be­cause they were afraid he would in­jure an­oth­er res­id­ent.

Joan Ger­sh­man, who lives in Flor­ida, de­tailed her battles with Medi­caid to get help for her hus­band in the months be­fore he qual­i­fied for a nurs­ing home. “You have to fight for every single thing. They deny, deny, deny. I asked for help at night be­cause I couldn’t shower and change him by my­self. ‘We’ll give you three days a week.’ When I said I needed more, they said, ‘You have to put him in as­sisted liv­ing.’ ‘I can’t af­ford as­sisted liv­ing.’ They said, ‘That’s too bad.’ “

In a sup­port group I at­ten­ded as a re­port­er, a wo­man about my age cried over put­ting her early-on­set moth­er in a fa­cil­ity. For years, through col­lege and after, she had shared an apart­ment with her moth­er so she could take care of her, but even­tu­ally she no longer could.

She was still funny. She tried to tell jokes. She liked rid­ing in the car and eat­ing ice cream. But the pro­spect of be­ing her at-home care­giver was also ter­ri­fy­ing.

I began to think about bring­ing Jack­ie home to live with me. I was spend­ing so much time with her and be­gin­ning to know her again and see the parts of her that had not dis­ap­peared. She was still funny. She tried to tell jokes. She liked rid­ing in the car and eat­ing ice cream. But the pro­spect of be­ing her at-home care­giver was also ter­ri­fy­ing. I would likely have to quit my job and leave be­hind my ca­reer, which I didn’t want to do. It was also un­clear how we would make ends meet if I did. Some states have pro­grams that pay fam­ily care­givers out of Medi­caid funds, but the Dis­trict of Columbia, where I live, does not. In South Car­o­lina, I could have been paid as a care­giver if I was re­lated to Jack­ie but not if I was her leg­al guard­i­an, which I was. Then there was the mat­ter of dur­a­tion. I could ima­gine tak­ing care of Jack­ie for a year, maybe two — but 10?

Mary­Anne Ster­ling’s story res­on­ated. An only child, she had been caring for her aging par­ents, both of whom de­veloped de­men­tia, since she was 30. Last year, after she turned 47, she and her hus­band real­ized they needed to start think­ing about their own fu­tures. She said, “We don’t have chil­dren. We don’t want to be a bur­den on any­body. If we don’t be­gin sav­ing earn­estly for re­tire­ment, who’s go­ing to look after us?”

On an NBC broad­cast with Maria Shriver, I heard Jim Crab­tree’s ex­per­i­ence, which was par­tic­u­larly chilling. His wife was dia­gnosed with Alzheimer’s at 57. “I was look­ing at 10 years of care at six grand a month. Who has the money to do that?” he said to the cam­era. His ail­ing par­ents of­ten looked after his wife while he was at work. In 2013, his 84-year-old fath­er, who also had de­men­tia, shot Crab­tree’s wife and moth­er be­fore killing him­self. “It sounds like a hor­rible, vi­ol­ent end, but in ac­tu­al­ity it was a eu­thanas­ia that my fath­er did,” Crab­tree said. He called the triple murder-sui­cide a “mercy killing.”

JACK­IE STILL DID not qual­i­fy for skilled nurs­ing care un­der Medi­care, so her next as­sisted-liv­ing place­ment was at Agapé Seni­or in West Columbia, which was one of the few or­gan­iz­a­tions in our area that had “con­tinuum of care” op­tions, mean­ing that Jack­ie could ad­vance from as­sisted liv­ing to spe­cial­ized de­men­tia care, then through nurs­ing care to hos­pice. She wouldn’t have to change homes again.

Agapé as­sessed Jack­ie as eli­gible for its en­hanced-care as­sisted-liv­ing fa­cil­ity, which was a step be­fore their de­men­tia care unit. We couldn’t af­ford the monthly pay­ments of $5,595, and we could barely af­ford the $3,500 ap­plic­a­tion fee, but Agapé had a found­a­tion, and we were ad­mit­ted on schol­ar­ship. The deal was I had to pay them back any money bor­rowed from the found­a­tion once I sold Jack­ie’s house or her VA be­ne­fits came through. The day I moved her in, though, I found out that in or­der for her to be eli­gible for found­a­tion sup­port, I would need to spend the rest of the $5,000 I had set aside in a sav­ings ac­count. I quibbled with an ad­min­is­trat­or, be­cause I still had out­stand­ing hos­pit­al bills and phar­macy pay­ments for her. “What are you wor­ried about? Her cred­it?” he said. “Let me ask you this: What’s the worst that can hap­pen if you don’t pay those bills?”

In a sense, he was right. He also knew we were in the pro­cess of “spend­ing down,” which meant we were us­ing all of Jack­ie’s as­sets un­til she qual­i­fied for Medi­caid. She would likely be eli­gible once she had only $2,000 in re­sources left. In the best worst-case scen­ario, by the time we ran through her re­main­ing as­sets, she would also be ill enough to be ad­mit­ted to a skilled nurs­ing home, where the gov­ern­ment would be more likely to pick up the tab through Medi­caid. Agapé’s found­a­tion might also aid us. Oth­er­wise, I would have to fund the bulk of her care on my own — a daunt­ing fin­an­cial bur­den many care­givers face.

Jackie in the late 1970s. (Courtesy of the Stanley Family) Courtesy of the Stanley Family

Jack­ie in the late 1970s. (Cour­tesy of the Stan­ley Fam­ily)Medi­caid pays for al­most two-thirds of U.S. long-term-care costs. But not all nurs­ing homes ac­cept Medi­caid, and there are wait­ing lists around the coun­try for Medi­caid in-home ser­vices and for spots in fa­cil­it­ies that do ac­cept the pro­gram’s funds. Crit­ics say the sys­tem is ar­ti­fi­cially im­pov­er­ish­ing the middle class and over­bur­den­ing it­self. Judy Fed­er calls Medi­caid “an enorm­ously valu­able safety net,” but notes that “it’s only avail­able to you when you are either poor or have ex­hausted all your re­sources. It clearly doesn’t pro­tect people from fin­an­cial cata­strophe. It pro­tects you only after cata­strophe strikes.”

Agapé at least proved to be a safer home for Jack­ie. It wasn’t as nice-look­ing as Lex­ing­ton Gar­dens — it was older with dank hall­ways — but the staff was bet­ter trained. They kept Jack­ie clean­er, in match­ing clothes and combed hair. There were few­er falls and al­most no ur­in­ary tract in­fec­tions or hos­pit­al vis­its. A nurse taught me how to safely help Jack­ie stand after she went to the bath­room. Most days, Jack­ie seemed hap­pi­er and more alert. But, of course, her Alzheimer’s was still pro­gress­ing. In Au­gust, she was found in an­oth­er res­id­ent’s room, hit­ting her in the head and scream­ing. She was moved to the Vista, Agapé’s spe­cial­ized de­men­tia care unit, which had in­di­vidu­ally locked rooms and in­creased su­per­vi­sion at $930 more a month.

Agapé helped me find a re­altor. I sold Jack­ie’s house to a man who flipped it. Last Ju­ly, he proudly showed me around the house my grand­fath­er built, which he had gut­ted to put in a sun­room and a break­fast nook. The money from the sale paid off Jack­ie’s re­main­ing debts, leav­ing her with around $38,000. At the rate we were go­ing, that amount would cov­er six months of her care.

IN MANY DE­VELOPED coun­tries, long-term care for cit­izens with de­men­tia is a pri­or­ity. In Fin­land, ac­cess to long-term care is en­shrined in the na­tion’s equi­val­ent of the Bill of Rights. The Neth­er­lands has cre­ated a spe­cial­ized de­men­tia vil­lage for res­id­ents, to im­prove their qual­ity of life. In 2001, France be­came the first European coun­try to launch a na­tion­al plan to deal with Alzheimer’s and re­lated de­men­tias. The policy em­phas­izes im­prov­ing de­men­tia care, in­clud­ing edu­cat­ing fam­il­ies about ser­vices and res­id­en­tial-care op­tions. In sev­er­al oth­er coun­tries, it’s a fam­ily’s right to have on­go­ing help with co­ordin­at­ing care and ser­vices, ac­cord­ing to Laura Gitlin, who dir­ects the Johns Hop­kins Cen­ter for In­nov­at­ive Care in Aging. “With a dia­gnos­is of de­men­tia in our coun­try,” she says, “the fam­ily gets the dia­gnos­is, and that’s it.”

There are pock­ets of the United States that are cre­at­ing in­nov­at­ive solu­tions for Alzheimer’s long-term care, but they vary enorm­ously by state, and ac­cess to them is largely a mat­ter of chance and geo­graphy. Min­nesota ranks first on AARP’s state rat­ing sys­tem for long-term-care op­tions. The state en­acted an early, ex­em­plary Alzheimer’s plan in 2011 to in­crease de­tec­tion, qual­ity care, and aware­ness; Min­nesota could save nearly $1 bil­lion over the next 15 years if the plan’s en­hanced sup­ports for care­givers are fully ap­plied across the state. New Jer­sey is one of sev­er­al states that pi­loted a Medi­caid pro­gram to al­low people to hire an at-home per­son­al aide, who can be a fam­ily mem­ber. Flor­ida has 15 Memory Dis­order Clin­ics to dia­gnose con­di­tions and co­ordin­ate care. There are ex­per­i­ments hap­pen­ing at uni­versit­ies and big re­search cen­ters to find more cost-ef­fect­ive ways to provide bet­ter de­men­tia care. And throughout the coun­try, small group homes are pop­ping up that provide more hands-on as­sist­ance for the same price as lar­ger fa­cil­it­ies.

In 2010, in an ef­fort to bet­ter co­ordin­ate U.S. ef­forts, Con­gress un­an­im­ously passed the Na­tion­al Alzheimer’s Pro­ject Act, which au­thor­ized the cre­ation of a na­tion­al ac­tion plan to com­bat the dis­ease and re­lated de­men­tias. In 2012, the Obama ad­min­is­tra­tion re­leased its Na­tion­al Plan to Ad­dress Alzheimer’s Dis­ease with the am­bi­tious goal to “pre­vent and ef­fect­ively treat Alzheimer’s dis­ease by 2025.” The plan has many worthy ini­ti­at­ives; but while ad­voc­ates ap­plaud the heightened aware­ness it has brought to the is­sue, they also are quick to note it isn’t a pan­acea. “The Na­tion­al Plan is a be­gin­ning, and that’s all it is,” Gitlin says. “It does not go far enough and it has to go fur­ther.”

“It does fo­cus too much on a cure,” Gleck­man says of the plan. Oth­ers agree. “We ob­vi­ously need to find a cure to stop the pipeline of people get­ting this dis­ease,” says Stein­berg, of the Alzheimer’s Found­a­tion of Amer­ica. “But, in the mean­time, there are still people com­ing down the pipeline who need care. Both sides of this dis­ease need to be ad­dressed.” Says Gitlin, “The is­sue with the Na­tion­al Alzheimer’s Pro­ject Act is strik­ing the right bal­ance between cure and care. We’re all for the cure, but the em­phas­is on care must be, in terms of dol­lars and policy, equi­val­ent, if not more so, than the cure.”

Many care-ori­ented goals in the plan of­fer well-in­ten­tioned but su­per­fi­cial fixes. Short-term we­binars by vari­ous gov­ern­ment agen­cies for health care work­ers and pro­viders ap­pear throughout as evid­ence of train­ing people about de­men­tia, and the doc­u­ment cites the dis­tri­bu­tion of in­struc­tion­al videos as proof of strength­en­ing the dir­ect-care work­force. “A series of videos, ‘Hand in Hand,’ were de­veloped and dis­sem­in­ated to every nurs­ing home in the coun­try,” the plan says. The dozens of strategies in its 83 pages range from con­ven­ing Alzheimer’s re­search sum­mits to as­sess­ing fam­ily care­giver needs, but the doc­u­ment — which has been up­dated yearly since its re­lease — does not of­fer con­crete steps to pay for its ini­ti­at­ives, leav­ing that up to gov­ern­ment agen­cies. The plan is still a work in pro­gress, and many of its ac­tion items are forth­com­ing, such as a sur­vey on at­ti­tudes to­ward long-term care and a pan­el on ad­vanced de­men­tia. One vague and bur­eau­crat­ic-sound­ing goal prom­ises: “Through a learn­ing col­lab­or­at­ive pro­cess, a tool will be cre­ated to help states meas­ure wheth­er they are im­prov­ing the de­men­tia cap­ab­il­ity of their sys­tems.”

“We’re all for the cure, but the em­phas­is on care must be, in terms of dol­lars and policy, equi­val­ent, if not more so, than the cure,” says Laura Gitlin, who dir­ects the Johns Hop­kins Cen­ter for In­nov­at­ive Care in Aging.

Even if Con­gress hoped to jump-start the search for an Alzheimer’s cure with the plan, law­makers have shirked fully fund­ing that ef­fort. The 2014 fed­er­al budget in­cluded an in­crease of $122 mil­lion for Alzheimer’s re­search, the largest hike ever — but still a far cry from what’s needed. Con­gress’s own ad­vis­ory group, put in place by NAPA, has re­com­men­ded that the fed­er­al gov­ern­ment spend $2 bil­lion per year on re­search for Alzheimer’s and re­lated de­men­tias over the next dec­ade, which would put it on par with oth­er ma­jor dis­eases. Fed­er­al Alzheimer’s re­search fund­ing is headed in the right dir­ec­tion, but it still does little to meet the am­bi­tious goal that the ad­min­is­tra­tion’s Na­tion­al Plan prom­ised: an ef­fect­ive treat­ment by 2025.

Earli­er this year, Robert Egge, who dir­ec­ted the study group that spurred the gov­ern­ment to cre­ate a na­tion­al plan, wrote in the journ­al Health Af­fairs that strides had been made na­tion­ally on Alzheimer’s, but the dis­ease was not yet “a top pri­or­ity either for the ad­min­is­tra­tion or for Con­gress as a whole.” Last Novem­ber, Sens. Susan Collins and Amy Klobuchar in­tro­duced a res­ol­u­tion that would spe­cify that treat­ing and pre­vent­ing Alzheimer’s by 2025 was “an ur­gent na­tion­al pri­or­ity.” It hasn’t come up for a vote.

Alzheimer’s re­mains a win­ning top­ic for poli­cy­makers to ad­dress, even if tan­gible re­forms are hard to find. That eth­os was on dis­play this past Feb­ru­ary, when the comedi­an Seth Ro­gen test­i­fied in front of a Sen­ate sub­com­mit­tee about his moth­er-in-law’s early-on­set Alzheimer’s. The hear­ing was sparsely at­ten­ded — not a rar­ity on Cap­it­ol Hill — and a few law­makers left be­fore Ro­gen’s speech, in which he im­plored Con­gress to help or­din­ary people deal with the fin­an­cial and emo­tion­al strain the dis­ease causes. Af­ter­ward, Ro­gen tweeted, “Not sure why only two sen­at­ors were at the hear­ing. Very sym­bol­ic of how the Gov­ern­ment views Alzheimer’s. Seems to be a low pri­or­ity.”

The single biggest help to many fam­il­ies cop­ing with de­men­tia would be to re­form the long-term-care mar­ket. Ac­cord­ing to an AP-NORC poll, 58 per­cent of Amer­ic­ans 40 and older now fa­vor a gov­ern­ment-backed, long-term-care in­sur­ance plan sim­il­ar to Medi­care. After the Af­ford­able Care Act’s ver­sion of long-term-care in­sur­ance was can­celed, Con­gress formed a bi­par­tis­an com­mis­sion to re­view next steps. From the start, there were prob­lems. The ef­fort was un­der­staffed, un­der­fun­ded, and short on time to meet its dead­line. Fed­er, one of the com­mis­sion’s mem­bers, calls the group “a con­sol­a­tion prize” that was tacked onto last year’s fisc­al-cliff le­gis­la­tion. The com­mis­sion’s fi­nal re­port ended with a stale­mate on how to pay for long-term care. “It es­sen­tially avoided the biggest prob­lem of all — the fin­an­cing,” Fed­er says. Some mem­bers be­lieved private in­sur­ance would not be suf­fi­cient, but they couldn’t de­cide what pub­lic sup­ports were reas­on­able. “There are prob­lems with the long-term-care products out there,” Chernof, the com­mis­sion’s chair, told me, adding, “I think we need a new gen­er­a­tion of plan­ning tools for work­ing fam­il­ies.”

Fed­er ar­gues that the only way to truly make long-term-care in­sur­ance af­ford­able is to man­date it for every­one. That may be a quix­ot­ic goal in a di­vided Con­gress with fa­tigue over the Af­ford­able Care Act’s in­di­vidu­al man­date. “It’s not real­ist­ic to ex­pect we’re go­ing to get a big, new gov­ern­ment en­ti­tle­ment pro­gram to pay for this from the be­gin­ning to end. We saw what just happened with the Af­ford­able Care Act and with the cur­rent polit­ic­al en­vir­on­ment,” Gleck­man says. “But provid­ing some sort of solu­tion that in­cludes a more at­tract­ive in­sur­ance pro­gram, per­haps with sub­sidies, and then a bet­ter Medi­caid pro­gram — that is something that is pos­sible.”

In the end, it may be more about in­sti­tut­ing com­mon­sense re­forms across the board na­tion­ally than about push­ing for en­ti­tle­ment re­form. What I thought I needed most as an Alzheimer’s care­giver was re­l­at­ively simple: ac­cess to an ex­pert to help me nav­ig­ate the sys­tem, wheth­er that was a doc­tor, a nurse, or a so­cial work­er. And that is one simple re­com­mend­a­tion that both the Na­tion­al Plan and the Com­mis­sion on Long-Term Care have ex­plored. My dad spent years caring for someone without any sup­port, without know­ing that she qual­i­fied for vet­er­ans’ be­ne­fits and for some Medi­caid ser­vices, or that there was adult day care and res­pite care that could have helped them both. By the time I found out these ser­vices were avail­able, it was too late.

Gitlin notes that re­search­ers like her are aware of more than 50 in­ter­ven­tions — from train­ing fam­ily mem­bers to home modi­fic­a­tions to ther­apies for curb­ing be­ha­vi­or­al is­sues — that are known to im­prove the lives and care of people with Alzheimer’s and those who are look­ing after them. They’re just not widely avail­able or in­teg­rated in­to our health care sys­tem. “There is a lot we can do, and there is a lot we know we can do,” Gitlin says. “But we just haven’t done it be­cause that’s not where our pri­or­it­ies are from a so­ci­et­al and policy per­spect­ive.”

Jackie and the author in the early 1990s, on a family beach vacation in South Carolina. (Courtesy of the Stanley Family) Courtesy of the Stanley Family

LAST OC­TO­BER, JACK­IE woke up strug­gling to breathe. A fa­cil­ity staffer called me a little after 6 a.m. to let me know she was be­ing taken to the hos­pit­al, just in case, just as a pre­cau­tion. This time was dif­fer­ent, though. It wasn’t a false alarm.

When I ar­rived at the hos­pit­al, Jack­ie no longer re­cog­nized me. She was list­less and non­re­spons­ive. Worse yet, she had lost the abil­ity to swal­low, a sign of end-stage Alzheimer’s. In her ad­vance dir­ect­ives, Jack­ie had been clear that she did not want a feed­ing tube or ar­ti­fi­cial hy­dra­tion as her Alzheimer’s worsened. Typ­ic­ally the hu­man body can live a month without food, a week without wa­ter. If Jack­ie could not swal­low, she could not live for long.

She went in­to hos­pice care, and we moved to the  skilled nurs­ing side of Agapé. Even as she was dy­ing, I struggled to get her the prop­er care. Hos­pice nurses circled us dur­ing the day, but at night, we were on our own with the reg­u­lar nurs­ing staff who typ­ic­ally man­aged re­hab­il­it­a­tion ser­vices, not de­men­tia pa­tients or pal­li­at­ive care. It was a large and busy place, and nearly every shift I had to ex­plain to a new face that Jack­ie had Alzheimer’s and couldn’t push a call but­ton or tell them what she needed. I bondeed with an ex­per­i­enced nurse who un­der­stood. When she was on night duty, I could go home. Oth­er­wise, I spent two weeks sleep­ing in a re­cliner by Jack­ie’s bed. I was with her when she died on a Tues­day morn­ing.

It is only in look­ing back al­most a year later that I can be­gin to grapple with the de­cisions I made and the ones I wish I had made in­stead. Now I think that if I had only known she had so little time left, I would have gone all out, broken the bank, and poured the rest of my sav­ings in­to put­ting her up in the nicest fa­cil­ity I could find. Or, bet­ter yet, I would have ren­ted us a two-bed­room apart­ment and an army of nurs­ing aides so I could have kept her at home, and been the one to wash her hair, sit with her at meals, and pick out her clothes. A year of that I could have man­aged, I some­times think.

I of­ten re­mem­ber the days right be­fore her death, when her de­li­ri­um and dis­com­fort were amp­li­fied, but she still had flashes of lu­cid­ity. One af­ter­noon, as I bent over her hos­pit­al bed to turn her over, she looked up at me with what I took to be a glim­mer of re­cog­ni­tion. “I know I am cared for,” she said. I only hope that was true.

Tiffany Stan­ley is a writer liv­ing in Wash­ing­ton.

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