Chapter One
The Phone Call
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 dont 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-lawhad suffered a massive stroke. Al couldnt get the words out. "I cant 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 Als sole caregiver. Shed done it with no one to talk to, or to help with rides or advice. Shed 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, couldnt do it. Besides, sons rarely care for aging parents.
The day Ida was removed from life support, we arranged her funeral. Shed 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 couldnt 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 Idas living room.
A few days later, we met with Als 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 isnt there yet," he told Ann.
It took us a while to figure out that Als melanoma was going to kill him, and that all of this doctors 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 mothers sudden death, Ann now had to find a way to care for her very sick father from a thousand miles away. Al didnt 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 wouldnt 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 couldnt 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. Wed 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 Als 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 t