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| Learn You Have Alzheimer’s, Then Invite a Reporter to Tail You? Really? | Learn You Have Alzheimer’s, Then Invite a Reporter to Tail You? Really? |
| (35 minutes later) | |
| Times Insider delivers behind-the-scenes insights into how news, features and opinion come together at The New York Times. In this piece, Times reporter N.R. Kleinfield provides background on his work covering a woman living with Alzheimer’s. | |
| The disease crouches everywhere, but I didn’t have much interest in writing about it. After all, Alzheimer’s was famous. Everyone knew its brute outlines, knew how drip by drip it transformed someone into someone else. | The disease crouches everywhere, but I didn’t have much interest in writing about it. After all, Alzheimer’s was famous. Everyone knew its brute outlines, knew how drip by drip it transformed someone into someone else. |
| Look around and there it was. Your mother had it. Or your father. Your grandparent. Your aunt. Your golf buddy. The upstairs neighbor with the poodle. The man who made sandwiches at the deli. | Look around and there it was. Your mother had it. Or your father. Your grandparent. Your aunt. Your golf buddy. The upstairs neighbor with the poodle. The man who made sandwiches at the deli. |
| My mother. | My mother. |
| My sister, Dawn, and I found out relatively late. It is often that way. Our mother lived alone in New Jersey. Like most older people, she had memory lapses. A neighbor called me. She said my mother was not acting right. Better look in on her. | My sister, Dawn, and I found out relatively late. It is often that way. Our mother lived alone in New Jersey. Like most older people, she had memory lapses. A neighbor called me. She said my mother was not acting right. Better look in on her. |
| She was a little askew but appeared to be functioning well. A few errands needed to be done. I did them. For a while, she had intermittent bad days but generally seemed all right. A friend visited her a couple of times a week. | She was a little askew but appeared to be functioning well. A few errands needed to be done. I did them. For a while, she had intermittent bad days but generally seemed all right. A friend visited her a couple of times a week. |
| A few months later, the friend called us and said she was deteriorating. We went over and found opened food containers scattered throughout the kitchen, the house disorderly, mail stacked up, bills unpaid. She was in bed, thin, and had not been eating. | A few months later, the friend called us and said she was deteriorating. We went over and found opened food containers scattered throughout the kitchen, the house disorderly, mail stacked up, bills unpaid. She was in bed, thin, and had not been eating. |
| We took her to the emergency room. The disease worked fast. Soon she was in a nursing home. Soon she no longer knew us, no longer had the right answers. The sunshine withdrew from her life. After a couple of more years, she died. | We took her to the emergency room. The disease worked fast. Soon she was in a nursing home. Soon she no longer knew us, no longer had the right answers. The sunshine withdrew from her life. After a couple of more years, she died. |
| Yes, I knew Alzheimer’s. Who didn’t? | Yes, I knew Alzheimer’s. Who didn’t? |
| Michael Luo, the editor I work with, has established a little routine to settle on new projects. We each compile a list of about 10 ideas, then we sit down, compare them and see if any light up. There were good ideas and bad ideas and middling ideas. | Michael Luo, the editor I work with, has established a little routine to settle on new projects. We each compile a list of about 10 ideas, then we sit down, compare them and see if any light up. There were good ideas and bad ideas and middling ideas. |
| One of Michael’s was to follow a person who had just received a diagnosis of Alzheimer’s. | One of Michael’s was to follow a person who had just received a diagnosis of Alzheimer’s. |
| Well, sure, good luck. How would you do that? Learn you have Alzheimer’s, then invite a reporter to tail you. Really? | Well, sure, good luck. How would you do that? Learn you have Alzheimer’s, then invite a reporter to tail you. Really? |
| It is a wicked diagnosis. People retreat from it. It carries an unfortunate stigma, encouraging people to mask their condition until it is impossible to conceal it any longer. They do not want to be cast off, seen as broken. | It is a wicked diagnosis. People retreat from it. It carries an unfortunate stigma, encouraging people to mask their condition until it is impossible to conceal it any longer. They do not want to be cast off, seen as broken. |
| Yet the idea had value. Most of the personal stories I had read about the disease dwelled mainly on its concluding stage. Of course, there would be back story, but the core of most stories was the period when a person had surrendered independence, was reliant on constant home care or was already settled in a nursing home and tuned out from the passing world. | Yet the idea had value. Most of the personal stories I had read about the disease dwelled mainly on its concluding stage. Of course, there would be back story, but the core of most stories was the period when a person had surrendered independence, was reliant on constant home care or was already settled in a nursing home and tuned out from the passing world. |
| The most important stage of Alzheimer’s, however, is the initial one — the period after diagnosis when people still largely control their lives. Then, considered decisions can be made. Something approximating normality can exist, albeit full of asterisks. But one is also waiting for what comes next. Alzheimer’s is nothing if not a cruel waiting game. | The most important stage of Alzheimer’s, however, is the initial one — the period after diagnosis when people still largely control their lives. Then, considered decisions can be made. Something approximating normality can exist, albeit full of asterisks. But one is also waiting for what comes next. Alzheimer’s is nothing if not a cruel waiting game. |
| The pace of the disease is unpredictable, but the first stage can last years. I thought it would be illuminating to write a story that, in its entirety, examined the particularities of that introductory stretch, when you meet the disease, decide how to accept it and learn how to work with its evilness. Perhaps it would suggest a road map for others. | The pace of the disease is unpredictable, but the first stage can last years. I thought it would be illuminating to write a story that, in its entirety, examined the particularities of that introductory stretch, when you meet the disease, decide how to accept it and learn how to work with its evilness. Perhaps it would suggest a road map for others. |
| I broached the idea with what was then the New York chapter of the Alzheimer’s Association, now called CaringKind. Officials liked the idea. They said they would ask around but cautioned that it might take a long time to find anyone willing and able to cooperate. | I broached the idea with what was then the New York chapter of the Alzheimer’s Association, now called CaringKind. Officials liked the idea. They said they would ask around but cautioned that it might take a long time to find anyone willing and able to cooperate. |
| A month later they invited me to meet Geri and Jim Taylor. What struck me most was how upbeat they were. Ms. Taylor, who had the disease, recognized the jolt to her life, but she was without bitterness or self-pity. Jim was very supportive. | A month later they invited me to meet Geri and Jim Taylor. What struck me most was how upbeat they were. Ms. Taylor, who had the disease, recognized the jolt to her life, but she was without bitterness or self-pity. Jim was very supportive. |
| I told them the lengthy amount of time I wanted to spend with them. They were excited. They both hated the stigma encasing the disease. They hoped they might help shape a new identity for Alzheimer’s. | I told them the lengthy amount of time I wanted to spend with them. They were excited. They both hated the stigma encasing the disease. They hoped they might help shape a new identity for Alzheimer’s. |
| One challenge of writing about Alzheimer’s in its first stage is its invisibility. Its effect is vivid near the end. Not in the beginning. It’s internal. One of the frustrations that Ms. Taylor and others have is that when they reveal their condition to people, they are told, “You don’t seem like there’s anything wrong,” as if they were playing a prank. | One challenge of writing about Alzheimer’s in its first stage is its invisibility. Its effect is vivid near the end. Not in the beginning. It’s internal. One of the frustrations that Ms. Taylor and others have is that when they reveal their condition to people, they are told, “You don’t seem like there’s anything wrong,” as if they were playing a prank. |
| I needed someone introspective who could distill what was happening inside the brain. Ms. Taylor was ideal, both bright and reflective. She was not reluctant to talk generously about what the disease was doing to her. In fact, she enjoyed doing so. Her insights enabled me to comprehend the movement of Alzheimer’s through her mind. | I needed someone introspective who could distill what was happening inside the brain. Ms. Taylor was ideal, both bright and reflective. She was not reluctant to talk generously about what the disease was doing to her. In fact, she enjoyed doing so. Her insights enabled me to comprehend the movement of Alzheimer’s through her mind. |
| Alzheimer’s is far from a cheerful illness. It eats at one’s soul. When I began with Ms. Taylor some two years ago, I did not know what the journey would be like, only her prediction. | Alzheimer’s is far from a cheerful illness. It eats at one’s soul. When I began with Ms. Taylor some two years ago, I did not know what the journey would be like, only her prediction. |
| At the conclusion of that first meeting, when we agreed that we wanted to proceed, she wrapped up the conversation by looking at me with her gentle eyes, flashing her smile and saying, “Well, you better be prepared to have fun!” | At the conclusion of that first meeting, when we agreed that we wanted to proceed, she wrapped up the conversation by looking at me with her gentle eyes, flashing her smile and saying, “Well, you better be prepared to have fun!” |
| Did we ever. | Did we ever. |