by Tom Brokaw
The statistics have a kind of cold, abstract place in our lives until they land in our bodies or affect someone close to us. In the months following my diagnosis I learned of a young friend, practically a son, with stomach cancer. Another young man close to one of our daughters with multiple myeloma. An NBC colleague, same condition. I heard that a former NBC colleague, almost exactly my age, was quietly battling an aggressive form of prostate cancer.
The strong connection between cancer and aging is evident every day in the obituary section of any newspaper. Well before MM became my constant companion I was a regular patron of those pages for the lessons learned from the celebrated and ordinary lives they chronicled.
Reading the obituaries took on a new dimension. Previously I had looked first to see what kind of life the deceased had led, especially if they were in what I called the Greatest Generation, the men and women of World War II. Now I was more interested in age. Here’s a guy who made it to eighty-five and died of prostate cancer. That’s a full life. Whoops, here’s another who died at seventy-two, his family said, of cancer-related causes.
In our family, that is too familiar, for we had begun to struggle with my middle brother’s onset of dementia at the same time I was going through the multiple myeloma stages. Bill was seventy-one when something began to seem amiss. He had retired after mixed success in the restaurant and residential real estate business, and was living alone after three marriages and only episodically connected to our youngest brother, Mike, and me.
When my mother began to fail in California he made more trips from Denver to be with us, but there were unsettling signs. He’d miss a flight by three hours, tell the same stories from his U.S. Army days in Germany, and keep from us exactly where he was living and how. By the time of Mother’s funeral back in South Dakota his conversations, memory, and elusiveness were noticeably more erratic. Dr. Jennifer said, “Bill needs help now. I’ll fly to Denver, contrive some story, and get him to a gerontologist.”
I contacted some financial advisers to evaluate his net worth and budget for housing. Through her careful stewardship Mother left a tidy estate of almost $400,000, and we elected to divide that between Bill and Mike, who had a comfortable retirement program from his long, satisfying career as a telephone systems installer and supervisor.
Bill had good reason to keep us from his apartment. He’d become a hoarder. The living space was impenetrable, stacked with unopened boxes of polo shirts, cross-country skis, books, DVDs, and family photos dating back to the early twentieth century. As an avid and skilled cook, he also had a restaurant’s worth supply of cooking pots and other utensils.
One more American enterprise emerging from the reality of the population growing old: de-hoarders. A small band of retired schoolteachers, social workers, and moving van employees moved in and sweet-talked their way through Bill’s resistance, all the while clearing out the floor-to-ceiling stuff he’d accumulated.
They helped him decide what was necessary for his new digs, a middle-income apartment in a gentrified early-twentieth-century neighborhood near downtown Denver. With the help of some friends and Mary, the smart, compassionate advocate we hired to look after Bill, he quickly made the place, which had two bedrooms, two baths, and an outside deck, into a homey nest.
During my visits he was eager to show off the living room, framed by an oaken dining table restored by our father, an old-fashioned oaken dry sink that served as a bookcase, and a flat-screen television that had been sitting in its original box for six years. It all added up to a new life but it was one that Bill would never know, for his condition deteriorated rapidly. Several months before my MM diagnosis I flew to Denver to join Jennifer on a second round of geriatrician visits.
I let Bill drive a short distance to a favorite diner and it was unsettling. He stayed in his lane and drove slowly but went around the same block twice. We went shopping for an iPad but it was clear he could never master it. It was heartbreaking to watch him panic when the clerk asked for his birthdate as the beginning of a password.
He didn’t have a clue.
Similarly, he didn’t seem to fully understand why we were at the office of the doctor, Donald Murphy, a genial Notre Dame graduate and native of Casper, Wyoming. He chatted with Bill about the Denver restaurant business, all the while scanning his psychiatric and dementia screening results.
“Bill,” he asked, “what about some meds, some pills to help you with memory and stuff?”
“Nah, I don’t believe in them,” Bill, always the family contrarian, answered quickly. “Besides, I didn’t like that psychiatrist [who had examined Bill earlier].”
“Hey, I get it,” Dr. Murphy answered. “No pills.”
Dr. Murphy pulled me into another office and said, “We know what’s going on here. It’s a steep decline.”
I broke into tears. Bill was just two years younger than me but his life was light-years different. Broken marriages, failed business, a stubborn resistance to anyone who volunteered to help. Yet he was natively smart, a voracious reader and a public policy wonk. Earlier in his Denver stay I had introduced him to former governor Dick Lamm, and Lamm had said, “Bill actually knows about and cares about municipal transportation. And a lot of other issues under the radar.”
In the family he was famously stubborn and outspoken after a childhood of painful shyness. As one of his stepsons put it, “There is the way everyone agrees on and then there is Bill’s way.”
We all worried that this stubbornness would make another move difficult, this one to an assisted living facility. Mary, the advocate, found a new facility in Lakewood, a well-organized three-floor home for seniors with the onset of dementia, the middle stage, and those who are deep, deep into the dreaded disease. It had all the perks of modern living: a coffee and snack bar, a well-appointed dining room, a small theater with a giant television screen, and small but comfortable apartments. The surrounding grounds were parklike, with recently planted trees and a lawn sloping down to a new development of suburban homes.
These facilities are a growth industry, with the number of deaths from Alzheimer’s having increased 68 percent between the years 2000 and 2012. By 2025 the number of people age sixty-five and older with Alzheimer’s is expected to climb another 40 percent, to more than seven million nationwide.
The stark numbers don’t stop there. It is the sixth leading cause of death in the United States, the fifth leading cause of death for those sixty-five and older.
If a cure is not found, the cost of Alzheimer’s is expected to soar to $1.2 trillion by 2050 from $203 billion in 2013. It will drive up the cost of the already overburdened Medicare and Medicaid by 500 percent in the same period.
When I visited Bill’s prospective new home the lobby was filled with residents planning day excursions or summer bus trips to Mt. Rushmore, in South Dakota. One perky woman, about my age, gray-haired with a new permanent, said, “Say, you look familiar. Who are you?” I told her and she said, “Well, you have to come to my birthday party tomorrow. We’re going to have fun.” I said, “Oh, I am so sorry, I have to leave today.” And then, plumbing for more information, I added, “You look so young. How old are you?” She shot me a stern look and said, “You think if I knew that I’d be in here?!?” And burst into laughter.
Bill could be happy here, I thought.
He moved without much complaining and it was another opportunity to clear out more of his accumulated stuff, including wine, cookware, and sporting goods equipment, most of which had not been used in a long time.
Dealing with dementia patients is a delicate dance for family members, caregivers, and the afflicted. It is one step compassion, two steps patience, three steps deception. After initial protests about discarding some personal belongings Bill quickly forgot he owned them, and by then they were out the door and on their way to the Salvation Army.
Earlier he gave up his car when Mary persuaded him it needed a complete inspection and then conspired with the dealer to load up th
e estimate of costs so it would be impractical for him to pay them. He reluctantly agreed to sell the car and relied instead on a livery service.
Bill’s new home was part of a boom in assisted living facilities around the country, one more manifestation of our aging demographics. The staff was well trained and responsive to our inquiries and requests. He had a sunny one-bedroom apartment with a small kitchen. It was a good fit. It was also expensive. His housing, medical care, and association with the highly efficient Mary ran about $90,000 a year. We worked out a formula for Bill to pay his primary expenses from his inheritance and I picked up some incidentals, relieved I was in a position to help immediately and when Bill’s nest egg ran out.
What about those families with modest resources or none at all? Grandma goes in the back bedroom or in a warehouselike facility. It’s now estimated that five million people are living with dementia in America, and unless there is medical relief soon that number will grow steadily. The Alzheimer’s Association estimates that more than fifteen million family members and friends give more than seventeen and a half billion hours of unpaid care to Alzheimer’s patients annually. Medicare and Medicaid help but the financial and emotional price lands on the immediate family, most of them working or middle class and already struggling with their own daily cost of living.
By Thanksgiving Bill’s condition had deteriorated and he had reached a stage at which he was irascible. He argued with everyone. Nothing made him happy, especially the meal service, an area where he claimed expertise, having been in the restaurant business for so long.
As a teenager we called him Prince William because he was fastidious about his wardrobe and appearance. Those days were gone as he refused to shower regularly, often sleeping in the same clothes for two or three nights at a time. He needed more supervision, so arrangements were made to move him into memory care, a section of the home where the guests are never out of sight of the attendants and their daily activities resemble a play group for grown-ups.
Mary took him out to lunch while the staff moved his essential belongings into a studio apartment, much smaller than his original space. Everyone was prepared for him to blow up when he realized the switch had been made but he barely noticed, one more sign of how rapidly his condition was deteriorating.
So much of Bill’s bravado is a cover for what is a vulnerable and sweet personality. We see flashes of that when friends visit or during telephone calls when he remembers a long-gone pet dog or a recent photo of his nieces. Then he retreats into that private world of anger, forgetfulness, and disconnect from the orderliness the rest of us take for granted.
We’re going through the trials and joy brought on by the journey of the modern American family. Our youngest daughter, Sarah, brought the joy when she decided to become a single mom at age forty-two after a long line of suitors failed to spark the necessary fire in her heart. The sperm donor pregnancy and birth after several tries was a tribute to imaginative new approaches to fertility and childbearing. The sperm donor, a close friend, pitched right in as a surrogate father, a comforting development to Meredith and me, separated as we were from Sarah and Archer by three thousand miles.
When cancer struck, Archer became even more important in my life because he gave me more reason to survive. I found myself thinking, “Well, if I make eight years Archer will be in the second grade and ready for his first fishing rod that summer.”
When Sarah took Archer to see Uncle Bill in his new home it had not been a good week—until they arrived. Bill wept with joy when he saw Sarah and her son. As Sarah rolled the always smiling Archer through the dining room the other residents lit up and the staff asked Sarah, not entirely in jest, if she could bring him by once a week.
All these parts of our family were not on my radar screen a few years earlier. How do you plan ten years or even five years earlier for one six-month period in which you develop cancer and your brother is institutionalized with Alzheimer’s? When those disconnected realities arrived we were fortified by strong family ties and an acute awareness of our need to become even more supportive of one another. We’d been through the onset of dementia with my mother and brother Mike’s mother-in-law.
Any one of the conditions brings a unique challenge to a family. Given the trends in cancer, dementia, and aging, there are many families of our generation facing similar challenges. As healthcare costs continue to rise, or even if they level off and become more manageable under the plan President Obama struggled to put in place, the price tag for the middle and working class facing complex medical problems will continue to be a crushing burden. There are estimates that two-thirds of the family bankruptcies filed in America are the result of healthcare costs that could not be paid.
Moreover, the costs to the economy are their own form of cancer to society. If a manufacturer, small business, or giant retailer is spending an ever-larger percentage of their annual revenues on healthcare they look for the exits.
Below the middle class, there is another reality that cannot be sustained. If 20 percent of the American population is hovering at poverty levels because of the high cost of housing, healthcare, higher education, and the cultural pressures for more consumer goods, where do people turn, with so many states reluctant to fund Medicaid under the formula worked out in President Obama’s Affordable Care Act, the national attempt to control healthcare costs?
At the end of the day, the objective reality of an aging population with its attendant health issues, the demands of a highly technical workplace, and the uneven results of public education are all strains on the American assumption of a level playing field. It is not just a dollars-and-cents issue. It is a commentary on our failure as a nation to adapt to the objective realities of profound change and how it affects the general welfare of our citizenry.
A few years ago I led a discussion on this subject before an audience of some of the most entrepreneurial, financially successful executives in the country. I asked how many knew how much they spent on their healthcare the prior year. Sheepishly, they came to me to say, “I haven’t a clue.” One said, “I wouldn’t even know who to ask.”
We’re a nation of informed consumers when it comes to buying flat-screen TVs, automobiles, running shoes, supermarket specials, and gas at the pump—but healthcare? Not a clue. It’s time for everyone to get involved. For example, the older members of my power audience were all Medicare-eligible and no doubt on the rolls. My guess is that the now-highlighted 1 percent crowd would be willing to pay more into Medicare and take less to make more room for the needs of the other 99 percent.
Some argue that this would turn Medicare into a segmented welfare program and divide the country even more. I don’t buy it. It doesn’t hold up against the long-term realities of the needs and costs.
The madness of one part of the American healthcare economy filled up an entire edition of Time magazine in February 2013. It was called “Bitter Pill: Why Medical Bills Are Killing Us,” and it was by Steven Brill, a bulldog-tough investigative reporter who has turned the piece into a bestselling book, America’s Bitter Pill: Money, Politics, Backroom Deals, and the Fight to Fix Our Broken Healthcare System.
Sloan and other high-end New York hospitals are world-class facilities competing for the best and brightest physicians and to keep their beds filled with patients. They are also now part of a healthcare delivery systems arms war. New York television screens are filled with slick, persuasive commercials featuring ordinary Americans who promote the virtues of a knee replacement surgery at the Hospital for Special Surgery and New York—Presbyterian’s campaign of real patients appearing in black-and-white commercials describing their treatment.
One, featuring a nine-year-old girl sharing her story of complicated cancer surgery, and poignantly bungling the word “Presbyterian,” has been viewed on YouTube more than seventy thousand times.
New York—area hospitals are spending more than $80 million annually on advertising, including stamping their names on subway cars and jitn
eys, and buying pop-ups on search engines and Google sites. Those expenditures, twinned with the acquisition of other healthcare systems, have turned the American hospital business into something resembling those nineteenth-century land rushes in California gold country or Texas and Oklahoma oil territory. Administrators and boards are authorizing huge acquisitions and marketing campaigns, crashing through doors and spending tons of cash in hopes they hit a mother lode or a gusher. In the uncertain political and economic environment of future healthcare it is a big gamble.
Cancercenter.com, a private treatment company, buys an hour of television time regularly for an infomercial that is as skillfully produced as any documentary on ESPN. Someone has to pay for all that expensive marketing, the executives who manage it and the star physicians who can deliver on the promise of those infomercials.
New York—area hospitals and healthcare systems and hospitals across the country have adopted catchy slogans in their campaigns to attract patients: HOPE LIVES HERE—AMAZING THINGS ARE HAPPENING HERE—ANY GIVEN MOMENT.
The vice president of marketing at New York—Presbyterian, David Feinberg, says, “We don’t see it as an expense; we think of it as a strategic investment.”
Brill takes readers through the hieroglyphics of billing patients. The codes and pricing rationale more closely resemble a Monty Python skit than a transparent financial transaction. Eighteen dollars for a diabetes test strip available at Walmart for fifty-five cents. A patient with what turned out to be severe heartburn was charged almost $200 for a drug test. She was sixty-four years old. If she had been sixty-five and on Medicare the bill for the test would have been $13.94.
Altogether, her heartburn trip to the hospital, including ambulance ride, doctors, hospital fees, and tests, came to $21,000, and she had no insurance. Who did pay? If you were a patient at that hospital and had insurance, you pitched in without knowing it.