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.
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 fifteen 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 fifteen 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 eighty-three 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.”
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 heade
d 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 policy makers 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 forty 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 fifty 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.”
Last October, Jackie woke up struggling to breathe. A facility staffer called me a little after six 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 bonded 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.
The New Yorker
WINNER—ESSAYS AND CRITICISM
“Roger Angell has written a brilliant account of life at the age of 93,” said the judges who awarded “This Old Man” the National Magazine Award for Essays and Criticism. “His tone is unsentimental, almost brusque, as he recalls his past and anticipates his death. The result is a piece of tremendous honesty and poignancy.” This was Angell’s first Ellie, and his acceptance speech, posted on YouTube, helps to explain the respect his fellow magazine journalists feel for him. The New Yorker, where Angell has been a contributor since 1944, is the most honored publication in the history of the National Magazine Awards. This year alone the magazine received six nominations and won three Ellies, including the award for General Excellence.
Roger Angell
This Old Man
Check me out. The top two knuckles of my left hand look as if I’d been worked over by the KGB. No, it’s more as if I’d been a catcher for the Hall of Fame pitcher Candy Cummings, the inventor of the curveball, who retired from the game in 1877. To put this another way, if I pointed that hand at you like a pistol and fired at your nose, the bullet would nail you in the left knee. Arthritis.
Now, still facing you, if I cover my left, or better, eye with one hand, what I see is a blurry encircling version of the ceiling and floor and walls or windows to our right and left but no sign of your face or head: nothing in the middle. But cheer up: if I reverse things and cover my right eye, there you are, back again. If I take my hand away and look at you with both eyes, the empty hole disappears and you’re in 3-D, and actually looking pretty terrific today. Macular d
egeneration.
I’m ninety-three, and I’m feeling great. Well, pretty great, unless I’ve forgotten to take a couple of Tylenols in the past four or five hours, in which case I’ve begun to feel some jagged little pains shooting down my left forearm and into the base of the thumb. Shingles, in 1996, with resultant nerve damage.
Like many men and women my age, I get around with a couple of arterial stents that keep my heart chunking. I also sport a minute plastic seashell that clamps shut a congenital hole in my heart, discovered in my early eighties. The surgeon at Mass General who fixed up this PFO (a patent foramen ovale—I love to say it) was a Mexican-born character actor in beads and clogs, and a fervent admirer of Derek Jeter. Counting this procedure and the stents, plus a passing balloon angioplasty and two or three false alarms, I’ve become sort of a table potato, unalarmed by the X-ray cameras swooping eerily about just above my naked body in a darkened and icy operating room; there’s also a little TV screen up there that presents my heart as a pendant ragbag attached to tacky ribbons of veins and arteries. But never mind. Nowadays, I pop a pink beta-blocker and a white statin at breakfast, along with several lesser pills, and head off to my human-wreckage gym, and it’s been a couple of years since the last showing.
My left knee is thicker but shakier than my right. I messed it up playing football, eons ago, but can’t remember what went wrong there more recently. I had a date to have the joint replaced by a famous knee man (he’s listed in the Metropolitan Opera program as a major supporter) but changed course at the last moment, opting elsewhere for injections of synthetic frog hair or rooster combs or something, which magically took away the pain. I walk around with a cane now when outdoors—“Stop brandishing!” I hear my wife, Carol, admonishing—which gives me a nice little edge when hailing cabs.
The Best American Magazine Writing 2015 Page 41
