Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America's Most Urgent Health Crisis by Howard Gleckman

From the Publisher

When his mother-in-law died suddenly and his seriously ill father-in-law was left with no one to care for him, the author and his wife were thrust into the complex and overwhelming world of long-term care. Just months later his own father fell sick, and the couple struggled to help care for him too—from 1000 miles away. Over the next year-and-a-half, this ordinary family faced one crisis after another, as each day brought new struggle and pain, but also surprising rewards. They were among the 44 million Americans who are caring for elderly parents or relatives or friends with disabilities.

Someone you love will almost certainly need long-term care services before they die. Nearly 70 percent of our parents will receive such help sometime during their old age—usually at home, though often in a nursing home. It will last for an average of three years, though one in five will need this assistance for five years or more. This book tells the sometimes painful, sometimes uplifting, and always compelling stories of the families who struggle every day with the care needs of their loved ones. The costs are crushing: and the weight of 77 million aging Baby Boomers will devastate our nation’s already fragile system for funding this critical day-to-day assistance. How can we repair the tattered safety net that is so essential to our aged and disabled?

Publishers Weekly

Longtime Business Week health reporter Gleckman takes readers on a guided tour of group homes, nursing homes, assisted living and the differences between Medicare, Medicaid and long-term care insurance in his comprehensive overview of the current state of long-term care in the U.S. Through interviews with family caregivers, professionals, the cared-for and reformers seeking alternatives to the current system, Gleckman does an impressive job of explaining our current elder-care system and those of other developed nations, and proposes possible solutions to an issue of growing importance as boomers become seniors. (June)

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Ann was out with friends on the evening of February 21, 1996. I was sitting in my favorite chair, reading a book and listening to music, when the phone rang. I don’t remember the book or the music, but I will never forget the call. With just a few words, my family was sent plummeting into a painful, mysterious, and all consuming world for which we were completely unprepared.

A five- minute conversation turned an ordinary suburban couple into caregivers for an elderly parent— a role we would play without respite for the next year and a half. Within twenty- four hours, we would begin careening from crisis to crisis, grasping for solutions to problems we only half understood, all the while being undermined by a medical and financial system that was as woefully unprepared to manage long- term care as we were.

It would be, at once, the most difficult and the most rewarding thing I have done in my life.

What happened to us on that raw February evening is so common that elder-care professionals simply call it The Phone Call. If you have not received one yet, chances are you will. Nearly 70 percent of our parents will require personal care sometime during their old age. A typical senior will need it for three long years, and one out of every five will depend on it for five years or more.1 More often than not, it will all begin with the ring of a telephone.

For us, the caller was my father- in- law, Albert Kline, a quiet retired government worker. He was calling from a pay phone at a hospital in Ft. Lauderdale, Florida. In a broken voice, Al tried to explain that his wife, Ida— my mother-in-law—had suffered amassive stroke. Al couldn’t get the words out. "I can’t believe this is happening," he said again and again. But the message was clear enough.

When my wife returned a few hours later, I broke the news as best as I could. Ann first called her father, then her brother, Ron. We arranged to get the first plane to Florida the next morning, and when we arrived at the hospital, we found Ida on life support in the intensive care unit. She was, by any reasonable definition, already dead. Still, we needed to make the decision to remove her from the ventilator that was pumping oxygen through her body.

I stood frozen in the doorway of her room, unable to decide whether to go in or not. Entering felt like an invasion of her privacy. Ida, who was not a small woman, seemed lost in the large hospital bed, her breathing maintained only by a gray metal machine, a plastic tube in her mouth. I struggled to capture an image of the warm and gregarious woman who had persevered despite a very difficult life. Yet, at just seventy-two, that Ida was gone.

But seeing my mother- in- law was only the first shock of that day. While Ann, Ron, and I struggled to absorb what was happening, Al had more news. Standing in the corner of a soulless waiting room, he broke it simply and quietly: "I have a tumor."

What Al had was advanced melanoma. He had suffered a bout of this skin cancer a half decade before, but it had been successfully treated and was half- forgotten. On our recent visits to Florida, he had complained of back pain. But, deep in denial, we all convinced ourselves that this was nothing more than normal discomfort for a seventy-four- year- old.

In fact, his melanoma had returned. It had gone undiagnosed for a long time, and now the cancer was aggressively attacking the rest of his body. Al and Ida had never told anyone that the disease was back— not their kids or their own brothers and sisters, who lived nearby. For months, Ida had been Al’s sole caregiver. She’d done it with no one to talk to, or to help with rides or advice. She’d had no shoulder to cry on. The stress almost certainly had helped kill her.

Now that overwhelming responsibility was about to fall to Ann, a lawyer with the U.S. Environmental Protection Agency. Ron, a peripatetic college professor, couldn’t do it. Besides, sons rarely care for aging parents.

The day Ida was removed from life support, we arranged her funeral. She’d be buried in her hometown of Wilkes-Barre, a grim little place in the coal country of central Pennsylvania. When Ida was a teenager, she couldn’t wait to get out of Wilkes-Barre. But her parents were buried there, and Al felt this was where she should be laid to rest, too.

Al was much too sick to travel to the funeral, so Ron flew to Pennsylvania, where a brief graveside ceremony was held. Al, Ann, and I stayed in Florida and held a memorial service in Al and Ida’s living room.

A few days later, we met with Al’s oncologist, who talked about experimental treatments and drug trials. We listened, skeptical but too overwhelmed to ask him the probing questions we should have. We did ask if Al had much hope of survival, or if we should consider ending his debilitating chemotherapy and instead enroll him in hospice. An in- home hospice program would provide an aide for ten hours a week, a registered nurse who could check in on Al to be sure that his pain was being managed, and a social worker who could help us plan any additional care he might need.

But the oncologist rejected the idea out of hand. Government rules required that a doctor certify that a patient had less than six months to live before Medicare paid for hospice, and he flatly refused. "Your father isn’t there yet," he told Ann.

It took us a while to figure out that Al’s melanoma was going to kill him, and that all of this doctor’s grand plans were little more than a long- shot attempt to buy my father- in- law a couple of extra months. Perhaps this doctor, like many oncologists, saw hospice as a kind of surrender in his personal war with cancer. The doctor had no suggestions for what we could do, but what ever his reasons, hospice was, for now, out of the question.

Still in shock from her mother’s sudden death, Ann now had to find a way to care for her very sick father— from a thousand miles away. Al didn’t make it easy. He wanted to stay in the apartment he had shared with Ida for so many years, but he refused any help. He wouldn’t even consider a nursing home or assisted- living facility. He would not move to the Washington, D.C., area to be with us or to upstate New York, to be near Ron.

Yet Al was, in many ways, helpless. He could not cook. He had no idea how to use a micro wave, and in any event was too weak to stand in the kitchen, so all his meals had to be made for him. He couldn’t do any house cleaning. The idea of his driving terrified us all. We had no idea what to do.

Ann needed to get back to her job, and Ron needed to return to his. So we decided to hire a part- time aide who would come in for four hours a day, three days a week, to cook and clean for Al. We’d try this while we attempted to return to our lives. Ann, feeling deeply guilty about how little she was doing for her dad but not sure what else she should do, flew back to Washington.

After a month, there was another phone call. This one was from Al’s brother, Jake, who had met Al for dinner and was stunned at how much he had deteriorated.

Ann was back on a plane the next day, taking more time off from work. She was not sure how sick Al was, but she knew she had to find better arrangements for him. Ann began to think about taking a leave from her job to stay in Florida with her dad.

She brought Al back to the doctor. This time, he concluded that further treatment was futile, so we turned to hospice to help keep Al comfortable in the days he had left. We all met with a hospice nurse in Al’s living room. She explained how the program worked, how Medicare would pay for it, and how Al could remain at home. But this had to be Al’s decision.

At first he seemed comfortable with the plan.

The nurse took us through pages of numbingly routine forms until we got to the question of whether Al was likely to live for less than a half- year, as Medicare regulations required. And for the first time, Al heard his death sentence. No one had ever told him just how sick he was.

"So, I am going to die in six months," he said, in what was at once a question and a statement.

"This doesn’t mean you’re going to die in six months," I told my father- in- law. "It just means a doctor says so to make you eligible for hospice. They don’t really know."

And so they don’t. But Al was going to die soon, and this was the first time any of us said it out loud.

We enrolled him in the home hospice program, but by now Al was so unsteady on his feet that he needed assistance getting to the bathroom at night. He wouldn’t let Ann help him, so we had to hire aides on two twelve- hour shifts. The overnight aide mostly slept or watched TV, but she had to be there for those few minutes Al needed her.

While Medicare paid for hospice, it did not pay for those extra aides. Al paid their fees out of his pension. Ann stayed with her father for the first two weeks of his hospice care. But she had a job, and a life, back in Mary land.

Even with the aides, hospice, and Ann’s help, the toll of the melanoma was too much. Al was having trouble eating, was deeply depressed, and was visibly failing. Despite all of our wishes, he could not stay at home.

So, after just a few more weeks, Ann brought her dad to be near us. We had no idea where he could live, so we first arranged to have him admitted to a large local nursing home until we could plan the next steps.

It is not always easy to get a patient into a good nursing home on such short notice. But we had one big advantage: We could "privatepay." That is, we were willing to write very large checks without relying on government assistance. About half the total cost of long- term care is paid by Medicaid, the welfare- like government health program for the poor. But Medicaid pays about 15 percent less than the retail rate, so nursing homes are always happier to have private-pay patients like Al.

The official price— a decade ago— was $5,000 a month. With add- ons, it was closer to $6,000. We learned that in a nursing home, you pay extra for just about everything, from adult diapers to snacks.

After a harrowing flight, which left Al extremely weak and disoriented, we brought him to the facility, a large multistory building that was part of a huge seniors’ complex just a few miles from our house.

He was immediately taken to a small room. As I stood in a hallway watching the nurses struggle to stabilize him, I was convinced he would die within hours, and wondered if perhaps that might be a blessing.

But Al didn’t die— and once he recovered from the trip and got his bearings, he had one wish: to get out of that sterile and impersonal nursing home.

He was wheelchair bound by then, and struggling to manage his steadily increasing pain. There were good days. One warm early spring afternoon, Al munched hot dogs, his favorite food, on our patio. And there were bad: late- night calls from the nursing home telling us that Al had fallen, or half- coherent calls from Al himself, as he tried to grasp what was happening to him.

After one of those falls, Al was X-rayed, and we learned how widely the cancer had spread through his body. Ann and I knew we would lose him soon, but those extra weeks were a gift.

Al’s goal of escaping the nursing home became ours, and after three weeks we did get him out. He refused to live with us, so we found him an apartment in a nearby assisted- living facility. We rented furniture, put up family photos, and hired a live- in aide to care for him.

Al moved in, but said it still didn’t feel like home. The apartment needed, he decided, more artwork on the walls. So we found some paintings at a furniture rental store. Once we hung those, Al smiled for the first time in months. He was, in some way, home.

He lived there for one week.

One morning, a few days after we finally got him settled, the phone rang again. This time it was my mother, Marilyn. My dad, Herb, had been admitted overnight to their local hospital in Delray, Florida.

This time Ann stayed in Washington with Al while I caught the next available flight to Florida. I found my father in the intensive care unit, alert but ashen. All my mother could tell me was that he had suffered a heart attack and that, at two A.M., the local rescue squad had taken him to a nearby hospital emergency room.

After I saw my dad, I tried to find out what was wrong with him. It was almost impossible to get answers, but I finally cornered a cardiologist in a hallway. My father had not had a heart attack. His problem was congestive heart failure, an extremely common ailment among the elderly. His heart was literally wearing out, and was no longer able to pump enough blood to the organs in his body.

His cardiac disease was very bad. After eighty- one years, my dad’s heart was pumping at less than 15 percent of its normal strength. The doctors were amazed he was still alive. Age, a long- ago heart attack, and an old three- pack- a-day cigarette habit had finally caught up with him.

After a couple of days he somehow stabilized, and my mother and I started to think about what would happen next. Then the phone rang again.

It was Ann. Al’s regular aide had taken the day off, so Ann had gone to his apartment to check on things. When she arrived, she found Al barely responsive. She realized right away what was happening: Her father was about to die.

The fill- in aide was screaming and crying and clumsily trying to perform CPR. It was a nightmare. Ann tried to comfort her dad while hustling the hysterical aide out of the apartment. She kept thinking that she wanted her father, who even in the best of times loved the quiet, to die in peace and calmness.

While Ann and I were talking, Al stopped breathing. As he wished, Ann did not call 911. It was May 26, just three months after Ida’s stroke.

Even today, it is hard for Ann to look back on the last months of her father’s life without weeping. "Nothing," she says, "worked out the way I wanted it to."

Ann began making arrangements for her dad’s funeral. I got a plane back to Washington and we prepared to bury Al next to his beloved Ida. Al’s life had ended, but our long- term- care story was only beginning.

As soon as the doctors diagnosed my father’s heart disease, they loaded him up with drugs: ACE inhibitors to help his blood flow more easily through his body, beta blockers to improve his heart’s ability to pump, and diuretics to help remove the fluids that built up in his lungs and legs when his heart still could not do its job. At one point, he was taking a dozen different medications. Then they inserted a small device in his chest to regulate his heart rhythm and shock it back into a proper beat when necessary.

After the surgeon did his work, I asked him how much longer he thought my dad would live. "If it was me, I wouldn’t sell him a six- month life insurance policy," replied this doctor, who knew everything— and nothing— about the human heart. That was how I learned my own father, like Al just days before, would soon die.

But this doctor was wrong. Stubborn, life- loving Herb lived another fourteen months. Only once in all that time did my father and I talk about his death.

My parents lived in a second- floor garden apartment in a building with no elevator. After my dad became wheelchair bound, there was no way to get him to the street or to a car. So an outing for him became the few- hundred- foot trip to the end of the walkway outside their door.

By then, I was visiting my parents every few weekends. Each morning I was in Florida, I would roll my dad down that walkway until we found a place to sit, either in the warm sun or, on those swelteringly humid South Florida days, in some bit of shade. One morning, as we were making small talk, my father said, "I guess this is the end of the line. I’m going to die."

I was speechless. It was an almost perfect echo of what had happened with Al just a few months before. How do we talk about dying with those we love so much?

It was the subject we each faced every single day, yet never mentioned.

"Me too," I replied after a long silence. "We are all going to die. The difference is you know what is going to kill you." He smiled. I wasn’t sure whether to laugh or cry. So I did a little of both.

We knew my dad did not have long to live, but despite the heartless prediction of that cardiologist, we didn’t know how long. Years before, Herb had made it very clear that he wanted no extraordinary measures used to prolong his life. But my father still had time, and we all wanted to make sure he lived his remaining days as fully and comfortably as possible. We also knew that we needed to protect my mother, who would shoulder most of the burden of caring for my dad.

Unfortunately, we had few clues about how to pull this off. We’d learned from our experience with Al, but Ann, my mother, and I still felt overwhelmed.

Herb was deeply religious, and the most optimistic man I ever knew. He loved life, but approached the world with a special stubbornness. He was happiest listening to music, especially opera, and in the 1950s and early 1960s owned a record shop in Providence, Rhode Island. He had a marvelous time. Over the years, players from the Rhode Island Philharmonic and even the Boston Symphony would stop in to listen to the latest recordings and debate the relative merits of the musicians who’d made them.

But my father refused to sell records he didn’t like, or at least those that didn’t meet his lofty artistic standards. So the Melody Shop may have been the only music store in 1950s America where you couldn’t buy a record by Elvis Presley. To nobody’s surprise, except perhaps my dad’s, the venture failed. Later he owned a men’s haberdashery, and after that flopped, he and my mother went on the road selling women’s accessories such as scarves and belts to high- end boutiques.

They made quite a success of this. My father would breeze in, swap stories, tell jokes, and eventually display the merchandise. The shop owners loved him. But they bought from my mother. After an hour or so of Dad’s chitchat, she was the one who’d say, "So we’ll put you down for a dozen of the blue and two dozen of the yellow."

My dad could also be incredibly impulsive. Every few years, seemingly without giving it much thought, he’d pull into an auto dealership, leave our old car in trade, and drive off with a new one. He never did any research, never shopped for a good price, and never told my mother what he was about to do.

In the mid- 1970s my parents took a rare vacation, visiting friends in Florida. In the midst of that trip, at age sixty, my impetuous father decided to sell their business and move from chilly Rhode Island to sunny Florida. So they bought a condo in a day and, a few months later, moved to a hideous retirement community in Delray, a few miles outside of a once- charming beach town midway between Ft. Lauderdale and Palm Beach.

My mother, Marilyn, was a tiny woman of old school dignity and great resolve. She suffered from ill health for many years, but kept active. After they retired to Florida, she volunteered as a receptionist at the local police headquarters. The cops all loved her, especially for her ability to steer unhappy visitors back out the door long before they’d ever reach the desk sergeant.

For her part, my mother didn’t so much love people as feel curious about them. Marilyn collected stories like some people collect bird sightings. She’d go to a local park, sit down on a bench next to a stranger, and in half an hour add a new story to her collection.

She was a loyal friend, but she also kept her distance. She was never a nurturing mother or wife. But now, after fifty years of marriage, Marilyn had a new role: to care for her increasingly helpless husband.

After his May hospital stay, Herb came home. He seemed to manage well for a few months, but before long suffered another episode of heart failure and was readmitted to the hospital. This time, it was clear he would never again be able to care for himself.

On August 21, our phone rang once again. It was my mother. She was near tears— the only time I’d ever heard her lose control. The hospital had called at 9:30 A.M. to tell her my dad would be discharged by the end of the day. But discharged to where? That, said the hospital social worker, was my mother’s problem, and she had until one P.M.to make the arrangements.

The easiest thing to do, my mom was told, was to find a nursing home for him. The hospital discharge planner gave her a list. That’s when my mother called me.

Dad was not going to a nursing home. He was going to come home. But my mother could no longer handle his care without help, so we needed to find a home health aide. My mother picked an agency at random from the local telephone book, and explained her problem. It was not the first time the agency heard this story.

An aide met my parents at the hospital, and within a few hours, Dad was home. Suddenly, a two- person house hold became a three-person family. Naressa Moore was from Jamaica, but was living in South Florida with her daughter, who was going to a local college. Naressa had the beautiful lilting accent of the islands, dark skin, a round face with expressive eyes, and a gentle smile. She had been a nurse at home, and hoped to earn a nursing license in the United States. While she studied, she worked as an aide.

Naressa was blessed with an extraordinary mix of no- nonsense competence and great kindness. Like many wives who become caregivers, my mother was deeply ambivalent about sharing her home with a stranger, especially another woman. She knew she needed the help, but for five de cades, Marilyn had run my parents’ house. She’d cooked and cleaned, chosen what to buy and where to store the dishes. Now all these decisions would be shared with a woman whose culture, language, religion, and outlook on life could not be more different from hers.

As we had done with Al, we enrolled my dad in hospice. That decision proved to be incredibly important, but not for the reasons any of us thought.

Somehow it all worked. Naressa, Herb, and Marilyn became, in their way, a family. Naressa provided the difficult physical care for Herb that my mother could not. The two women shared the job of providing companionship for my dad, who was gradually losing his ability to walk, speak, and eat. The hospice nurses visited once or twice a week.

Back in 1996, my parents paid Naressa $85 a day. But even that was not simple. In long- term care, nothing is.

A few years before my dad got sick, he’d bought a Medicare managed- care insurance policy from a major national carrier. It promised all sorts of extra benefits beyond traditional Medicare: eye and hearing exams, glasses, and, if you believed their advertising, long- term care. Big, bold, full- page ads compared their insurance with traditional Medicare.

Under the Medicare column, it listed home care, and the "no" box was checked. Under the private insurance column, the home-care box was checked "yes."

None of it was true. The insurance company refused to pay for Naressa’s time, so my mother paid more than $21,000 out of her own pocket while we fought with the company. We wrote letters. We appealed. We hired a lawyer. Seventeen months after my dad died, the company finally paid.

While my mother and Naressa were my father’s caregivers, my role was to provide respite for my mom and companionship for my father, and to serve as an advocate for them both. Every few weeks, early on Friday morning, I’d fly to Florida, where I’d stay until Sunday eve ning, when I’d get the last nonstop flight back to Washington. Ann joined me on every other trip.

At first my days there were spent busily calling doctors, checking with hospice, and helping my mother with chores. As time went on, I’d spend less time doing things and more hours just sitting with my dad, listening to music or watching TV, sometimes holding his hand or quietly chatting.

The busy work, I realized, was a kind of denial. The more I chased after doctors or complained to social workers about one thing or another, the more I could avoid thinking about what really mattered: that my father was going to die soon and that the remaining time we had together was to be savored.

So I stopped running around and just sat with him.

It was so hard. I’d arrive at their apartment from an exhausting plane trip, hug my mother, and sit next to my dad, who was usually in a recliner in their family room. I’d realize how much weaker he was— even from just a few weeks before. I didn’t want him to see me cry, so I’d get up and go into the bathroom. And sob.

But those hours with him were precious, unlike any I’d ever had. That is the thing about someone dying in slow motion: As hard as it is, it gives you time.

Time to resolve old conflicts.

Time to balance the scales.

Some days, though, it was almost too much. Early one Sunday afternoon, after months of gradually fading away, my dad was in bed. We were alone, watching a football game, while my mother and Naressa were off shopping. Herb began to doze, as he often did, his breathing labored despite the oxygen he was getting through thin plastic tubes attached to his nose.

I watched him for what seemed like an hour but was probably only a few minutes.

And I thought, for just a moment, about suffocating him.

He wouldn’t struggle. No one would ever know. It would end his suffering, and my mother’s. And mine.

I got up and walked outside into the musky South Florida air— fetid and damp even on a winter’s day. My mind emptied.

Then I returned to my dad’s room. He was still sleeping. The football game— the Dolphins and somebody— was still on. I sat back down. And watched.

There was one more member of our care giving team, a hospice chaplain named Paul. He was a sixty-something Lutheran minister from Long Island, New York, with natural charm, a ruddy complexion, and the square- jawed good looks of a 1940s movie star. My dad, who was an observant Jew, had probably never knowingly met a Lutheran minister in his life, and surely one had never visited his home. But Paul and Herb became quite a pair.

They shared a love for opera and would listen to my father’s large music collection for hours at a time. Then, somehow re-creating my father’s joyous days in the Melody Shop forty years earlier, they’d argue about whether Pavarotti or Domingo was the superior tenor, or whether Callas was a better soprano than Scotto. After a while, the music would stop and they’d just talk. Their conversations were private, and neither ever shared them with me or my mom. But I knew that, after a time, they’d talk about life, and God, and death.

As the months passed, there was less music. Toward the end, there was none.

Paul and I played another important role in Herb’s life. Because his illness trapped him in his home, my dad found himself spending most of his time with two women, Naressa and my mother. Sometimes it drove him to distraction. Having a guy around was a very big deal to him.

My father and I had a complicated relationship, as most fathers and sons do. I was a rebellious only child. That I had been a sixties teenager made it even worse. For many of those years, my father and I could barely speak to each other. But I went off to college and made my own life. By the time I reached my thirties, we settled into a comfortable friendship. Neither of us was much for sharing deep thoughts, but I came to enjoy our visits, and I think he did, too. For twenty years, we were friends.

As he got progressively sicker, our relationship changed again. My father had been trained as an accountant and had always done the family finances. But his weakened heart not only sapped his energy; it was also failing to pump enough blood to his brain. His ability to think and make decisions was gradually draining away.

Fortunately, long before he became sick, my parents gave me the legal authority to manage their finances (the documents are called financial power of attorney). After a few months, I gently asked if I should start keeping their checkbook. My dad reluctantly agreed. At first I wrote the checks, but he signed them. After a time, his signature became less and less legible. Then the day came when he could no longer write his name at all. So I began signing the checks, too. This simple task became another small rite of our difficult passage.

This is what some people call parenting your parents. But it isn’t, really. You can provide for them in some ways. You can even do intimate physical tasks, such as changing a diaper or bathing them— the things they did for you when you were a child. But you will never become their parent. That is the role they filled from the day you were born— and a child can never really take that away from a parent.

What is it like to die of heart failure? The pattern of my dad’s illness was pretty typical. He slowly declined, week after week. Every once in a while he’d crash, then rebound; but like an exhausted climber fighting the gravity of a steep, rocky slope, he’d rarely recover all he’d lost.

"I’m not in any pain," my father would say throughout his illness. This amazed and pleased him. Still, his decline was hard.

At first he could no longer get around without a walker. Then, as his strength gradually ebbed, he struggled to stand. Finally, he needed help just getting from his bed to a wheelchair. At first my dad could make the few steps to the bathroom by holding on to a dresser, the wall, and a grab bar by the toilet. Then he could get there only with Naressa’s help. Finally, he could not get there at all.

In one of his hospitalizations, he had a catheter inserted to drain away his urine. This was done, we later learned, more for the convenience of the hospital staff than for my father’s comfort, and he should never have been discharged before the device was removed. He hated the catheter, and the humiliating bag of yellow liquid that hung down his leg. After we got him home, we tried several times to wean him off it. But it was not possible, and he was constantly plagued by the threat of a urinary tract infection. With the elderly, these are common and always uncomfortable. If untreated, they can be deadly.

The stress on my mother, who had her own physical problems, was terrible. She had lost the sight in one eye, and on some days her arthritis was so severe she could barely stand. Yet she persevered.

She rarely talked about it, but the pressure showed. For her, caring for my father was a full- time job. My father needed to be fed, given his medications, moved from his bed to his easy chair, and perhaps to the living room couch. On a nice day, he’d want to go outside. She constantly worried about him falling. And as he got sicker, my father would become angrier and more frustrated, and that would just magnify my mother’s own stress. If she went out, he’d complain about being left alone, even though someone was always with him.

Marilyn couldn’t sleep. She was exhausted and often overwhelmed. Naressa was her rock, but on those days when Naressa was off, my mother would come close to panic. It was clear she was reaching her limits.

About two months before Herb passed away, something extraordinary happened. Early one warm May morning, I called my parents just before I left for work, as I often did. But this conversation was unlike any other.

My father got on the phone and said simply and with great certainty, "I died last night."

I asked him what had happened, but he could not answer. Whatever it was, what ever he had dreamed or imagined or seen was beyond his ability to describe. The words did not come to him. He put the phone down.

A few days later, my dad took a turn for the worse. He began drifting in and out of awareness. He never quite lost consciousness, but he became increasingly less responsive. For periods of time, he couldn’t speak. He lost control of his bowels, and was unable even to turn over in bed without help.

It was finally more than my mother could bear. So we found a nursing home a mile or so from their apartment. The morning we moved him, I drove to the facility to make sure everything was set up as promised. Herb came a few minutes later by ambulance. When we arrived at his room, he suddenly became alert and asked where he was. I tried to explain what was happening. It was the last real conversation we ever had.

We made another decision at the nursing home. My father was being kept alive by that cocktail of prescription drugs. We asked the doctor if he could wean my dad off the pills so nature could take its course. He readily agreed.

On the morning of July 8, my mother called.

"He’s very low," she said. "You should come."

Ann and I took the next flight and got to Florida around noon. It was a stiflingly hot and humid day, the sort my father, a New Englander deep in his soul, loathed.

When I got to his room, he was barely responsive. I’m not sure he was aware I was with him, although I believe he knew. My mother, Ann, and I took turns sitting with him. Paul came for a last visit, and we prayed.

At about five- thirty in the afternoon, he seemed stable, so we took my exhausted mother home for a break. On the way, we stopped to get her dinner. While we were gone, at about seven P.M., Herb quietly died. He was three months short of his eighty- third birthday.

I am still haunted that he died alone.

When we became caregivers, my family unwillingly joined one of the least exclusive clubs in America. It is a silent society— one whose members rarely know one another and almost never discuss their struggles. They don’t even see themselves as caregivers. They are just... helping. Many, in fact, are convinced they are alone, although this club has tens of millions of members.

Today, as many as 44 million Americans care for more than 10 million elderly and disabled friends and relatives.2 Some are seniors caring for spouses. Others are adult children helping their elderly parents, or even teenagers caring for siblings with disabilities. They are all races. Some are rich. Some are very poor. No one is immune.

They quickly learn that love is wonderful, but when it comes to long- term care, love is not enough. Families are being crushed by the high cost of care. As they struggle every day with the needs of their loved ones, they must navigate a financial system that is staggeringly expensive for government, yet leaves millions of aged and disabled Americans without the means to obtain the basic assistance they need to live a dignified and comfortable life. This irrational payment system drives patients and their families into what is often the wrong care, at the wrong time, in the wrong place.

A typical frail senior has almost no money— less than $8,000 in financial assets. Most live alone.3 As many as two million may have no one at all to care for them.4 And without assistance, many go days without bathing or eating. They soil themselves. Some die with no one to comfort them in their last hours, their bodies left undiscovered for days. Others die in hospitals, connected to massively expensive— but ultimately useless— machines.

In 2007, we spent more than $200 billion on paid long- term care.5 These staggering costs are not paid by health insurance, and usually not covered by Medicare, the government health program for seniors. Private long- term- care insurance pays for less than 10 percent.6More than half is paid by Medicaid, a welfare- like government program. But in the United States, in contrast to most of the rest of the developed world, you must first impoverish yourself before getting any help.

Millions of American families are caught in the long- term- care trap. They have too much money to be eligible for Medicaid, but a typical nursing home costs more than $200 a day,7 and they are not close to having the funds to pay these astronomical costs on their own. As a result, they are at risk of losing nearly everything they have— and still getting care that one daughter of a nursing home– bound mother describes as "not fit for an animal."

Think of it as a roll of the cosmic dice. Government provides near-universal basic health care for the old and for many younger people with disabilities. That means that if your dad is sixty-five and suffers a massive heart attack, Medicare will pay tens of thousands of dollars for surgery and the hospital stay he needs to fix the damage. But if, as with my father, his heart disease leaves him so sick that he can no longer care for himself, it will provide little or no coverage for the help he needs to get through each day. If he has Alzheimer’s disease, there is a good chance that when it comes to paying the bills, your family will be entirely on its own.

Even worse, that $200 billion is only part of the cost. More than 80 percent of long- term care is informal, provided by family members and friends. Some estimate the value of that care at an additional $350 billion a year.8 Add it up and, as a nation, we may be spending as much to assist our elderly and disabled as we do on national defense.

In many ways, my family was incredibly lucky. My father had a safe place to live and a wife who could provide emotional support and some physical care. Until the last month of his life, he was alert, although he needed assistance with activities such as eating and going to the bathroom. He had a loving and capable aide and the financial resources to pay for her help.

I had enough job flexibility to take days off so I could spend time with my parents. I had the skills to find people who could answer our questions, and tremendous support from my wife. I was an only child, so the burden of caring for Herb fell to my mom and me alone. On the other hand, I had no siblings to fight with.

Millions of American families are not so fortunate. They don’t have the time or ability to help aging parents or disabled relatives. They have no idea how to navigate the extraordinarily complex world of long- term care. Old family wounds tear open under stress, and cooperation gives way to confrontation.

Still, there is some good news. Dozens of creative new housing options are blossoming, and traditional nursing homes are remaking themselves. Financial market gurus and government policymakers are exploring ways to make long- term care affordable for average families.

At the same time, policy experts and even some politicians are starting to think about better ways to finance care for the elderly. They are looking at experiments in countries such as Germany and Japan to see if they can somehow be adapted to the United States.

In many ways, caring for our parents was the most rewarding thing Ann and I have ever done. It was a special opportunity to give back some of the love and care they’d given us when we were kids. But it was also the toughest thing we’ve ever done.

This is the story of long- term care in twenty- first- century America. It is a blessing that many of us will have the opportunity to care for our parents or disabled relatives, that we can have precious time with them in their final months, and that we can give back for what they did for us. But it is a curse that the richest nation in the world has not learned to use its resources to provide that care in the best way possible.

Excerpted from Caring for Our Parents by Howard Gleckman .
Copyright © 2009 by Howard Gleckman.
Published by St. Martin’s Press.

All rights reserved. This work is protected under copyright laws and reproduction is strictly prohibited. Permission to reproduce the material in any manner or medium must be secured from the Publisher.

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Caring for Our Parents

St. Martin's Press

Ann was out with friends on the evening of February 21, 1996. I was sitting in my favorite chair, reading a book and listening to music, when the phone rang. I don’t remember the book or the music, but I will never forget the call. With just a few words, my family was sent plummeting into a painful, mysterious, and all consuming world for which we were completely unprepared.

A five- minute conversation turned an ordinary suburban couple into caregivers for an elderly parent— a role we would play without respite for the next year and a half. Within twenty- four hours, we would begin careening from crisis to crisis, grasping for solutions to problems we only half understood, all the while being undermined by a medical and financial system that was as woefully unprepared to manage long- term care as we were.

It would be, at once, the most difficult and the most rewarding thing I have done in my life.

What happened to us on that raw February evening is so common that elder-care professionals simply call it The Phone Call. If you have not received one yet, chances are you will. Nearly 70 percent of our parents will require personal care sometime during theirold age. A typical senior will need it for three long years, and one out of every five will depend on it for five years or more.1 More often than not, it will all begin with the ring of a telephone.

For us, the caller was my father- in- law, Albert Kline, a quiet retired government worker. He was calling from a pay phone at a hospital in Ft. Lauderdale, Florida. In a broken voice, Al tried to explain that his wife, Ida— my mother-in-law—had suffered a massive stroke. Al couldn’t get the words out. "I can’t believe this is happening," he said again and again. But the message was clear enough.

When my wife returned a few hours later, I broke the news as best as I could. Ann first called her father, then her brother, Ron. We arranged to get the first plane to Florida the next morning, and when we arrived at the hospital, we found Ida on life support in the intensive care unit. She was, by any reasonable definition, already dead. Still, we needed to make the decision to remove her from the ventilator that was pumping oxygen through her body.

I stood frozen in the doorway of her room, unable to decide whether to go in or not. Entering felt like an invasion of her privacy. Ida, who was not a small woman, seemed lost in the large hospital bed, her breathing maintained only by a gray metal machine, a plastic tube in her mouth. I struggled to capture an image of the warm and gregarious woman who had persevered despite a very difficult life. Yet, at just seventy-two, that Ida was gone.

But seeing my mother- in- law was only the first shock of that day. While Ann, Ron, and I struggled to absorb what was happening, Al had more news. Standing in the corner of a soulless waiting room, he broke it simply and quietly: "I have a tumor."

What Al had was advanced melanoma. He had suffered a bout of this skin cancer a half decade before, but it had been successfully treated and was half- forgotten. On our recent visits to Florida, he had complained of back pain. But, deep in denial, we all convinced ourselves that this was nothing more than normal discomfort for a seventy-four- year- old.

In fact, his melanoma had returned. It had gone undiagnosed for a long time, and now the cancer was aggressively attacking the rest of his body. Al and Ida had never told anyone that the disease was back— not their kids or their own brothers and sisters, who lived nearby. For months, Ida had been Al’s sole caregiver. She’d done it with no one to talk to, or to help with rides or advice. She’d had no shoulder to cry on. The stress almost certainly had helped kill her.

Now that overwhelming responsibility was about to fall to Ann, a lawyer with the U.S. Environmental Protection Agency. Ron, a peripatetic college professor, couldn’t do it. Besides, sons rarely care for aging parents.

The day Ida was removed from life support, we arranged her funeral. She’d be buried in her hometown of Wilkes-Barre, a grim little place in the coal country of central Pennsylvania. When Ida was a teenager, she couldn’t wait to get out of Wilkes-Barre. But her parents were buried there, and Al felt this was where she should be laid to rest, too.

Al was much too sick to travel to the funeral, so Ron flew to Pennsylvania, where a brief graveside ceremony was held. Al, Ann, and I stayed in Florida and held a memorial service in Al and Ida’s living room.

A few days later, we met with Al’s oncologist, who talked about experimental treatments and drug trials. We listened, skeptical but too overwhelmed to ask him the probing questions we should have. We did ask if Al had much hope of survival, or if we should consider ending his debilitating chemotherapy and instead enroll him in hospice. An in- home hospice program would provide an aide for ten hours a week, a registered nurse who could check in on Al to be sure that his pain was being managed, and a social worker who could help us plan any additional care he might need.

But the oncologist rejected the idea out of hand. Government rules required that a doctor certify that a patient had less than six months to live before Medicare paid for hospice, and he flatly refused. "Your father isn’t there yet," he told Ann.

It took us a while to figure out that Al’s melanoma was going to kill him, and that all of this doctor’s grand plans were little more than a long- shot attempt to buy my father- in- law a couple of extra months. Perhaps this doctor, like many oncologists, saw hospice as a kind of surrender in his personal war with cancer. The doctor had no suggestions for what we could do, but what ever his reasons, hospice was, for now, out of the question.

Still in shock from her mother’s sudden death, Ann now had to find a way to care for her very sick father— from a thousand miles away. Al didn’t make it easy. He wanted to stay in the apartment he had shared with Ida for so many years, but he refused any help. He wouldn’t even consider a nursing home or assisted- living facility. He would not move to the Washington, D.C., area to be with us or to upstate New York, to be near Ron.

Yet Al was, in many ways, helpless. He could not cook. He had no idea how to use a micro wave, and in any event was too weak to stand in the kitchen, so all his meals had to be made for him. He couldn’t do any house cleaning. The idea of his driving terrified us all. We had no idea what to do.

Ann needed to get back to her job, and Ron needed to return to his. So we decided to hire a part- time aide who would come in for four hours a day, three days a week, to cook and clean for Al. We’d try this while we attempted to return to our lives. Ann, feeling deeply guilty about how little she was doing for her dad but not sure what else she should do, flew back to Washington.

After a month, there was another phone call. This one was from Al’s brother, Jake, who had met Al for dinner and was stunned at how much he had deteriorated.

Ann was back on a plane the next day, taking more time off from work. She was not sure how sick Al was, but she knew she had to find better arrangements for him. Ann began to think about taking a leave from her job to stay in Florida with her dad.

She brought Al back to the doctor. This time, he concluded that further treatment was futile, so we turned to hospice to help keep Al comfortable in the days he had left. We all met with a hospice nurse in Al’s living room. She explained how the program worked, how Medicare would pay for it, and how Al could remain at home. But this had to be Al’s decision.

At first he seemed comfortable with the plan.

The nurse took us through pages of numbingly routine forms until we got to the question of whether Al was likely to live for less than a half- year, as Medicare regulations required. And for the first time, Al heard his death sentence. No one had ever told him just how sick he was.

"So, I am going to die in six months," he said, in what was at once a question and a statement.

"This doesn’t mean you’re going to die in six months," I told my father- in- law. "It just means a doctor says so to make you eligible for hospice. They don’t really know."

And so they don’t. But Al was going to die soon, and this was the first time any of us said it out loud.

We enrolled him in the home hospice program, but by now Al was so unsteady on his feet that he needed assistance getting to the bathroom at night. He wouldn’t let Ann help him, so we had to hire aides on two twelve- hour shifts. The overnight aide mostly slept or watched TV, but she had to be there for those few minutes Al needed her.

While Medicare paid for hospice, it did not pay for those extra aides. Al paid their fees out of his pension. Ann stayed with her father for the first two weeks of his hospice care. But she had a job, and a life, back in Mary land.

Even with the aides, hospice, and Ann’s help, the toll of the melanoma was too much. Al was having trouble eating, was deeply depressed, and was visibly failing. Despite all of our wishes, he could not stay at home.

So, after just a few more weeks, Ann brought her dad to be near us. We had no idea where he could live, so we first arranged to have him admitted to a large local nursing home until we could plan the next steps.

It is not always easy to get a patient into a good nursing home on such short notice. But we had one big advantage: We could "privatepay." That is, we were willing to write very large checks without relying on government assistance. About half the total cost of long- term care is paid by Medicaid, the welfare- like government health program for the poor. But Medicaid pays about 15 percent less than the retail rate, so nursing homes are always happier to have private-pay patients like Al.

The official price— a decade ago— was $5,000 a month. With add- ons, it was closer to $6,000. We learned that in a nursing home, you pay extra for just about everything, from adult diapers to snacks.

After a harrowing flight, which left Al extremely weak and disoriented, we brought him to the facility, a large multistory building that was part of a huge seniors’ complex just a few miles from our house.

He was immediately taken to a small room. As I stood in a hallway watching the nurses struggle to stabilize him, I was convinced he would die within hours, and wondered if perhaps that might be a blessing.

But Al didn’t die— and once he recovered from the trip and got his bearings, he had one wish: to get out of that sterile and impersonal nursing home.

He was wheelchair bound by then, and struggling to manage his steadily increasing pain. There were good days. One warm early spring afternoon, Al munched hot dogs, his favorite food, on our patio. And there were bad: late- night calls from the nursing home telling us that Al had fallen, or half- coherent calls from Al himself, as he tried to grasp what was happening to him.

After one of those falls, Al was X-rayed, and we learned how widely the cancer had spread through his body. Ann and I knew we would lose him soon, but those extra weeks were a gift.

Al’s goal of escaping the nursing home became ours, and after three weeks we did get him out. He refused to live with us, so we found him an apartment in a nearby assisted- living facility. We rented furniture, put up family photos, and hired a live- in aide to care for him.

Al moved in, but said it still didn’t feel like home. The apartment needed, he decided, more artwork on the walls. So we found some paintings at a furniture rental store. Once we hung those, Al smiled for the first time in months. He was, in some way, home.

He lived there for one week.

One morning, a few days after we finally got him settled, the phone rang again. This time it was my mother, Marilyn. My dad, Herb, had been admitted overnight to their local hospital in Delray, Florida.

This time Ann stayed in Washington with Al while I caught the next available flight to Florida. I found my father in the intensive care unit, alert but ashen. All my mother could tell me was that he had suffered a heart attack and that, at two A.M., the local rescue squad had taken him to a nearby hospital emergency room.

After I saw my dad, I tried to find out what was wrong with him. It was almost impossible to get answers, but I finally cornered a cardiologist in a hallway. My father had not had a heart attack. His problem was congestive heart failure, an extremely common ailment among the elderly. His heart was literally wearing out, and was no longer able to pump enough blood to the organs in his body.

His cardiac disease was very bad. After eighty- one years, my dad’s heart was pumping at less than 15 percent of its normal strength. The doctors were amazed he was still alive. Age, a long- ago heart attack, and an old three- pack- a-day cigarette habit had finally caught up with him.

After a couple of days he somehow stabilized, and my mother and I started to think about what would happen next. Then the phone rang again.

It was Ann. Al’s regular aide had taken the day off, so Ann had gone to his apartment to check on things. When she arrived, she found Al barely responsive. She realized right away what was happening: Her father was about to die.

The fill- in aide was screaming and crying and clumsily trying to perform CPR. It was a nightmare. Ann tried to comfort her dad while hustling the hysterical aide out of the apartment. She kept thinking that she wanted her father, who even in the best of times loved the quiet, to die in peace and calmness.

While Ann and I were talking, Al stopped breathing. As he wished, Ann did not call 911. It was May 26, just three months after Ida’s stroke.

Even today, it is hard for Ann to look back on the last months of her father’s life without weeping. "Nothing," she says, "worked out the way I wanted it to."

Ann began making arrangements for her dad’s funeral. I got a plane back to Washington and we prepared to bury Al next to his beloved Ida. Al’s life had ended, but our long- term- care story was only beginning.

As soon as the doctors diagnosed my father’s heart disease, they loaded him up with drugs: ACE inhibitors to help his blood flow more easily through his body, beta blockers to improve his heart’s ability to pump, and diuretics to help remove the fluids that built up in his lungs and legs when his heart still could not do its job. At one point, he was taking a dozen different medications. Then they inserted a small device in his chest to regulate his heart rhythm and shock it back into a proper beat when necessary.

After the surgeon did his work, I asked him how much longer he thought my dad would live. "If it was me, I wouldn’t sell him a six- month life insurance policy," replied this doctor, who knew everything— and nothing— about the human heart. That was how I learned my own father, like Al just days before, would soon die.

But this doctor was wrong. Stubborn, life- loving Herb lived another fourteen months. Only once in all that time did my father and I talk about his death.

My parents lived in a second- floor garden apartment in a building with no elevator. After my dad became wheelchair bound, there was no way to get him to the street or to a car. So an outing for him became the few- hundred- foot trip to the end of the walkway outside their door.

By then, I was visiting my parents every few weekends. Each morning I was in Florida, I would roll my dad down that walkway until we found a place to sit, either in the warm sun or, on those swelteringly humid South Florida days, in some bit of shade. One morning, as we were making small talk, my father said, "I guess this is the end of the line. I’m going to die."

I was speechless. It was an almost perfect echo of what had happened with Al just a few months before. How do we talk about dying with those we love so much?

It was the subject we each faced every single day, yet never mentioned.

"Me too," I replied after a long silence. "We are all going to die. The difference is you know what is going to kill you." He smiled. I wasn’t sure whether to laugh or cry. So I did a little of both.

We knew my dad did not have long to live, but despite the heartless prediction of that cardiologist, we didn’t know how long. Years before, Herb had made it very clear that he wanted no extraordinary measures used to prolong his life. But my father still had time, and we all wanted to make sure he lived his remaining days as fully and comfortably as possible. We also knew that we needed to protect my mother, who would shoulder most of the burden of caring for my dad.

Unfortunately, we had few clues about how to pull this off. We’d learned from our experience with Al, but Ann, my mother, and I still felt overwhelmed.

Herb was deeply religious, and the most optimistic man I ever knew. He loved life, but approached the world with a special stubbornness. He was happiest listening to music, especially opera, and in the 1950s and early 1960s owned a record shop in Providence, Rhode Island. He had a marvelous time. Over the years, players from the Rhode Island Philharmonic and even the Boston Symphony would stop in to listen to the latest recordings and debate the relative merits of the musicians who’d made them.

But my father refused to sell records he didn’t like, or at least those that didn’t meet his lofty artistic standards. So the Melody Shop may have been the only music store in 1950s America where you couldn’t buy a record by Elvis Presley. To nobody’s surprise, except perhaps my dad’s, the venture failed. Later he owned a men’s haberdashery, and after that flopped, he and my mother went on the road selling women’s accessories such as scarves and belts to high- end boutiques.

They made quite a success of this. My father would breeze in, swap stories, tell jokes, and eventually display the merchandise. The shop owners loved him. But they bought from my mother. After an hour or so of Dad’s chitchat, she was the one who’d say, "So we’ll put you down for a dozen of the blue and two dozen of the yellow."

My dad could also be incredibly impulsive. Every few years, seemingly without giving it much thought, he’d pull into an auto dealership, leave our old car in trade, and drive off with a new one. He never did any research, never shopped for a good price, and never told my mother what he was about to do.

In the mid- 1970s my parents took a rare vacation, visiting friends in Florida. In the midst of that trip, at age sixty, my impetuous father decided to sell their business and move from chilly Rhode Island to sunny Florida. So they bought a condo in a day and, a few months later, moved to a hideous retirement community in Delray, a few miles outside of a once- charming beach town midway between Ft. Lauderdale and Palm Beach.

My mother, Marilyn, was a tiny woman of old school dignity and great resolve. She suffered from ill health for many years, but kept active. After they retired to Florida, she volunteered as a receptionist at the local police headquarters. The cops all loved her, especially for her ability to steer unhappy visitors back out the door long before they’d ever reach the desk sergeant.

For her part, my mother didn’t so much love people as feel curious about them. Marilyn collected stories like some people collect bird sightings. She’d go to a local park, sit down on a bench next to a stranger, and in half an hour add a new story to her collection.

She was a loyal friend, but she also kept her distance. She was never a nurturing mother or wife. But now, after fifty years of marriage, Marilyn had a new role: to care for her increasingly helpless husband.

After his May hospital stay, Herb came home. He seemed to manage well for a few months, but before long suffered another episode of heart failure and was readmitted to the hospital. This time, it was clear he would never again be able to care for himself.

On August 21, our phone rang once again. It was my mother. She was near tears— the only time I’d ever heard her lose control. The hospital had called at 9:30 A.M. to tell her my dad would be discharged by the end of the day. But discharged to where? That, said the hospital social worker, was my mother’s problem, and she had until one P.M.to make the arrangements.

The easiest thing to do, my mom was told, was to find a nursing home for him. The hospital discharge planner gave her a list. That’s when my mother called me.

Dad was not going to a nursing home. He was going to come home. But my mother could no longer handle his care without help, so we needed to find a home health aide. My mother picked an agency at random from the local telephone book, and explained her problem. It was not the first time the agency heard this story.

An aide met my parents at the hospital, and within a few hours, Dad was home. Suddenly, a two- person house hold became a three-person family. Naressa Moore was from Jamaica, but was living in South Florida with her daughter, who was going to a local college. Naressa had the beautiful lilting accent of the islands, dark skin, a round face with expressive eyes, and a gentle smile. She had been a nurse at home, and hoped to earn a nursing license in the United States. While she studied, she worked as an aide.

Naressa was blessed with an extraordinary mix of no- nonsense competence and great kindness. Like many wives who become caregivers, my mother was deeply ambivalent about sharing her home with a stranger, especially another woman. She knew she needed the help, but for five de cades, Marilyn had run my parents’ house. She’d cooked and cleaned, chosen what to buy and where to store the dishes. Now all these decisions would be shared with a woman whose culture, language, religion, and outlook on life could not be more different from hers.

As we had done with Al, we enrolled my dad in hospice. That decision proved to be incredibly important, but not for the reasons any of us thought.

Somehow it all worked. Naressa, Herb, and Marilyn became, in their way, a family. Naressa provided the difficult physical care for Herb that my mother could not. The two women shared the job of providing companionship for my dad, who was gradually losing his ability to walk, speak, and eat. The hospice nurses visited once or twice a week.

Back in 1996, my parents paid Naressa $85 a day. But even that was not simple. In long- term care, nothing is.

A few years before my dad got sick, he’d bought a Medicare managed- care insurance policy from a major national carrier. It promised all sorts of extra benefits beyond traditional Medicare: eye and hearing exams, glasses, and, if you believed their advertising, long- term care. Big, bold, full- page ads compared their insurance with traditional Medicare.

Under the Medicare column, it listed home care, and the "no" box was checked. Under the private insurance column, the home-care box was checked "yes."

None of it was true. The insurance company refused to pay for Naressa’s time, so my mother paid more than $21,000 out of her own pocket while we fought with the company. We wrote letters. We appealed. We hired a lawyer. Seventeen months after my dad died, the company finally paid.

While my mother and Naressa were my father’s caregivers, my role was to provide respite for my mom and companionship for my father, and to serve as an advocate for them both. Every few weeks, early on Friday morning, I’d fly to Florida, where I’d stay until Sunday eve ning, when I’d get the last nonstop flight back to Washington. Ann joined me on every other trip.

At first my days there were spent busily calling doctors, checking with hospice, and helping my mother with chores. As time went on, I’d spend less time doing things and more hours just sitting with my dad, listening to music or watching TV, sometimes holding his hand or quietly chatting.

The busy work, I realized, was a kind of denial. The more I chased after doctors or complained to social workers about one thing or another, the more I could avoid thinking about what really mattered: that my father was going to die soon and that the remaining time we had together was to be savored.

So I stopped running around and just sat with him.

It was so hard. I’d arrive at their apartment from an exhausting plane trip, hug my mother, and sit next to my dad, who was usually in a recliner in their family room. I’d realize how much weaker he was— even from just a few weeks before. I didn’t want him to see me cry, so I’d get up and go into the bathroom. And sob.

But those hours with him were precious, unlike any I’d ever had. That is the thing about someone dying in slow motion: As hard as it is, it gives you time.

Time to resolve old conflicts.

Time to balance the scales.

Some days, though, it was almost too much. Early one Sunday afternoon, after months of gradually fading away, my dad was in bed. We were alone, watching a football game, while my mother and Naressa were off shopping. Herb began to doze, as he often did, his breathing labored despite the oxygen he was getting through thin plastic tubes attached to his nose.

I watched him for what seemed like an hour but was probably only a few minutes.

And I thought, for just a moment, about suffocating him.

He wouldn’t struggle. No one would ever know. It would end his suffering, and my mother’s. And mine.

I got up and walked outside into the musky South Florida air— fetid and damp even on a winter’s day. My mind emptied.

Then I returned to my dad’s room. He was still sleeping. The football game— the Dolphins and somebody— was still on. I sat back down. And watched.

There was one more member of our care giving team, a hospice chaplain named Paul. He was a sixty-something Lutheran minister from Long Island, New York, with natural charm, a ruddy complexion, and the square- jawed good looks of a 1940s movie star. My dad, who was an observant Jew, had probably never knowingly met a Lutheran minister in his life, and surely one had never visited his home. But Paul and Herb became quite a pair.

They shared a love for opera and would listen to my father’s large music collection for hours at a time. Then, somehow re-creating my father’s joyous days in the Melody Shop forty years earlier, they’d argue about whether Pavarotti or Domingo was the superior tenor, or whether Callas was a better soprano than Scotto. After a while, the music would stop and they’d just talk. Their conversations were private, and neither ever shared them with me or my mom. But I knew that, after a time, they’d talk about life, and God, and death.

As the months passed, there was less music. Toward the end, there was none.

Paul and I played another important role in Herb’s life. Because his illness trapped him in his home, my dad found himself spending most of his time with two women, Naressa and my mother. Sometimes it drove him to distraction. Having a guy around was a very big deal to him.

My father and I had a complicated relationship, as most fathers and sons do. I was a rebellious only child. That I had been a sixties teenager made it even worse. For many of those years, my father and I could barely speak to each other. But I went off to college and made my own life. By the time I reached my thirties, we settled into a comfortable friendship. Neither of us was much for sharing deep thoughts, but I came to enjoy our visits, and I think he did, too. For twenty years, we were friends.

As he got progressively sicker, our relationship changed again. My father had been trained as an accountant and had always done the family finances. But his weakened heart not only sapped his energy; it was also failing to pump enough blood to his brain. His ability to think and make decisions was gradually draining away.

Fortunately, long before he became sick, my parents gave me the legal authority to manage their finances (the documents are called financial power of attorney). After a few months, I gently asked if I should start keeping their checkbook. My dad reluctantly agreed. At first I wrote the checks, but he signed them. After a time, his signature became less and less legible. Then the day came when he could no longer write his name at all. So I began signing the checks, too. This simple task became another small rite of our difficult passage.

This is what some people call parenting your parents. But it isn’t, really. You can provide for them in some ways. You can even do intimate physical tasks, such as changing a diaper or bathing them— the things they did for you when you were a child. But you will never become their parent. That is the role they filled from the day you were born— and a child can never really take that away from a parent.

What is it like to die of heart failure? The pattern of my dad’s illness was pretty typical. He slowly declined, week after week. Every once in a while he’d crash, then rebound; but like an exhausted climber fighting the gravity of a steep, rocky slope, he’d rarely recover all he’d lost.

"I’m not in any pain," my father would say throughout his illness. This amazed and pleased him. Still, his decline was hard.

At first he could no longer get around without a walker. Then, as his strength gradually ebbed, he struggled to stand. Finally, he needed help just getting from his bed to a wheelchair. At first my dad could make the few steps to the bathroom by holding on to a dresser, the wall, and a grab bar by the toilet. Then he could get there only with Naressa’s help. Finally, he could not get there at all.

In one of his hospitalizations, he had a catheter inserted to drain away his urine. This was done, we later learned, more for the convenience of the hospital staff than for my father’s comfort, and he should never have been discharged before the device was removed. He hated the catheter, and the humiliating bag of yellow liquid that hung down his leg. After we got him home, we tried several times to wean him off it. But it was not possible, and he was constantly plagued by the threat of a urinary tract infection. With the elderly, these are common and always uncomfortable. If untreated, they can be deadly.

The stress on my mother, who had her own physical problems, was terrible. She had lost the sight in one eye, and on some days her arthritis was so severe she could barely stand. Yet she persevered.

She rarely talked about it, but the pressure showed. For her, caring for my father was a full- time job. My father needed to be fed, given his medications, moved from his bed to his easy chair, and perhaps to the living room couch. On a nice day, he’d want to go outside. She constantly worried about him falling. And as he got sicker, my father would become angrier and more frustrated, and that would just magnify my mother’s own stress. If she went out, he’d complain about being left alone, even though someone was always with him.

Marilyn couldn’t sleep. She was exhausted and often overwhelmed. Naressa was her rock, but on those days when Naressa was off, my mother would come close to panic. It was clear she was reaching her limits.

About two months before Herb passed away, something extraordinary happened. Early one warm May morning, I called my parents just before I left for work, as I often did. But this conversation was unlike any other.

My father got on the phone and said simply and with great certainty, "I died last night."

I asked him what had happened, but he could not answer. Whatever it was, what ever he had dreamed or imagined or seen was beyond his ability to describe. The words did not come to him. He put the phone down.

A few days later, my dad took a turn for the worse. He began drifting in and out of awareness. He never quite lost consciousness, but he became increasingly less responsive. For periods of time, he couldn’t speak. He lost control of his bowels, and was unable even to turn over in bed without help.

It was finally more than my mother could bear. So we found a nursing home a mile or so from their apartment. The morning we moved him, I drove to the facility to make sure everything was set up as promised. Herb came a few minutes later by ambulance. When we arrived at his room, he suddenly became alert and asked where he was. I tried to explain what was happening. It was the last real conversation we ever had.

We made another decision at the nursing home. My father was being kept alive by that cocktail of prescription drugs. We asked the doctor if he could wean my dad off the pills so nature could take its course. He readily agreed.

On the morning of July 8, my mother called.

"He’s very low," she said. "You should come."

Ann and I took the next flight and got to Florida around noon. It was a stiflingly hot and humid day, the sort my father, a New Englander deep in his soul, loathed.

When I got to his room, he was barely responsive. I’m not sure he was aware I was with him, although I believe he knew. My mother, Ann, and I took turns sitting with him. Paul came for a last visit, and we prayed.

At about five- thirty in the afternoon, he seemed stable, so we took my exhausted mother home for a break. On the way, we stopped to get her dinner. While we were gone, at about seven P.M., Herb quietly died. He was three months short of his eighty- third birthday.

I am still haunted that he died alone.

When we became caregivers, my family unwillingly joined one of the least exclusive clubs in America. It is a silent society— one whose members rarely know one another and almost never discuss their struggles. They don’t even see themselves as caregivers. They are just... helping. Many, in fact, are convinced they are alone, although this club has tens of millions of members.

Today, as many as 44 million Americans care for more than 10 million elderly and disabled friends and relatives.2 Some are seniors caring for spouses. Others are adult children helping their elderly parents, or even teenagers caring for siblings with disabilities. They are all races. Some are rich. Some are very poor. No one is immune.

They quickly learn that love is wonderful, but when it comes to long- term care, love is not enough. Families are being crushed by the high cost of care. As they struggle every day with the needs of their loved ones, they must navigate a financial system that is staggeringly expensive for government, yet leaves millions of aged and disabled Americans without the means to obtain the basic assistance they need to live a dignified and comfortable life. This irrational payment system drives patients and their families into what is often the wrong care, at the wrong time, in the wrong place.

A typical frail senior has almost no money— less than $8,000 in financial assets. Most live alone.3 As many as two million may have no one at all to care for them.4 And without assistance, many go days without bathing or eating. They soil themselves. Some die with no one to comfort them in their last hours, their bodies left undiscovered for days. Others die in hospitals, connected to massively expensive— but ultimately useless— machines.

In 2007, we spent more than $200 billion on paid long- term care.5 These staggering costs are not paid by health insurance, and usually not covered by Medicare, the government health program for seniors. Private long- term- care insurance pays for less than 10 percent.6More than half is paid by Medicaid, a welfare- like government program. But in the United States, in contrast to most of the rest of the developed world, you must first impoverish yourself before getting any help.

Millions of American families are caught in the long- term- care trap. They have too much money to be eligible for Medicaid, but a typical nursing home costs more than $200 a day,7 and they are not close to having the funds to pay these astronomical costs on their own. As a result, they are at risk of losing nearly everything they have— and still getting care that one daughter of a nursing home– bound mother describes as "not fit for an animal."

Think of it as a roll of the cosmic dice. Government provides near-universal basic health care for the old and for many younger people with disabilities. That means that if your dad is sixty-five and suffers a massive heart attack, Medicare will pay tens of thousands of dollars for surgery and the hospital stay he needs to fix the damage. But if, as with my father, his heart disease leaves him so sick that he can no longer care for himself, it will provide little or no coverage for the help he needs to get through each day. If he has Alzheimer’s disease, there is a good chance that when it comes to paying the bills, your family will be entirely on its own.

Even worse, that $200 billion is only part of the cost. More than 80 percent of long- term care is informal, provided by family members and friends. Some estimate the value of that care at an additional $350 billion a year.8 Add it up and, as a nation, we may be spending as much to assist our elderly and disabled as we do on national defense.

In many ways, my family was incredibly lucky. My father had a safe place to live and a wife who could provide emotional support and some physical care. Until the last month of his life, he was alert, although he needed assistance with activities such as eating and going to the bathroom. He had a loving and capable aide and the financial resources to pay for her help.

I had enough job flexibility to take days off so I could spend time with my parents. I had the skills to find people who could answer our questions, and tremendous support from my wife. I was an only child, so the burden of caring for Herb fell to my mom and me alone. On the other hand, I had no siblings to fight with.

Millions of American families are not so fortunate. They don’t have the time or ability to help aging parents or disabled relatives. They have no idea how to navigate the extraordinarily complex world of long- term care. Old family wounds tear open under stress, and cooperation gives way to confrontation.

Still, there is some good news. Dozens of creative new housing options are blossoming, and traditional nursing homes are remaking themselves. Financial market gurus and government policymakers are exploring ways to make long- term care affordable for average families.

At the same time, policy experts and even some politicians are starting to think about better ways to finance care for the elderly. They are looking at experiments in countries such as Germany and Japan to see if they can somehow be adapted to the United States.

In many ways, caring for our parents was the most rewarding thing Ann and I have ever done. It was a special opportunity to give back some of the love and care they’d given us when we were kids. But it was also the toughest thing we’ve ever done.

This is the story of long- term care in twenty- first- century America. It is a blessing that many of us will have the opportunity to care for our parents or disabled relatives, that we can have precious time with them in their final months, and that we can give back for what they did for us. But it is a curse that the richest nation in the world has not learned to use its resources to provide that care in the best way possible.

Excerpted from Caring for Our Parents by Howard Gleckman .
Copyright © 2009 by Howard Gleckman.
Published by St. Martin’s Press.

All rights reserved. This work is protected under copyright laws and reproduction is strictly prohibited. Permission to reproduce the material in any manner or medium must be secured from the Publisher.

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Excerpted from Caring for Our Parents by Gleckman, Howard Copyright © 2009 by Gleckman, Howard. Excerpted by permission.
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