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How to cope as an Alzheimer’s caregiver

Mary Ellen Geist left her high-powered radio job in New York City to return home to Michigan and care for her father, who suffers from Alzheimer's. In her new book, “Measure of the Heart,” she writes about how she copes and advises others in similar positions. An excerpt.

Introduction: Daughter, where are you?I am one of millions of people who uproot their lives to help take care of parents who need them. Alzheimer’s disease is drawing more and more people home. No statistics are available right now on how many people quit their jobs to help take care of their parents, but it’s presumed that more women than men are choosing to do this each year. The National Alliance for Caregiving and AARP, in a 2004 study, reported that women accounted for 71 percent of those devoting forty or more hours per week to the task of caregiving. As Jane Gross reported in the New York Times in November 2005, among those with the greatest burden of care, regardless of sex, 88 percent either take leaves of absence, quit, or retire from their jobs.

It is safe to say that each day in the United States dozens of daughters and sons are contemplating transferring jobs or quitting them altogether to respond to the needs of aging parents. Some are moving themselves or their entire families from the East to the West Coast or vice versa; others are moving from urban centers to small towns in Iowa, Ohio, or Michigan to help with the daily care of a mother or a father. As I write this, cars and planes and trains are taking adult children back to their family homes as they take a leap like I did: to help take on the task of caregiving.

If you look closely, you will see them at doctor’s offices, accompanying parents to appointments. You will see them dropping off their parents at day care centers. You will see them trying to maneuver their Alzheimer’s-afflicted mother or father through the aisles at neighborhood grocery stores.

We find each other easily in crowds. The daughters — we look each other in the eye, as if to ask, Where’s your husband? Where are your children? Are you single, too? Did you leave your life in a big city to come home to help your parents, too?

We often have unkempt hair, no makeup, and a look of exasperation in our eyes. We are trying to hide the fact that we have just wrestled our parents into tennis shoes after coaxing them to finish their cereal and explaining to them what pills are and why they have to take them, and where we are going today. I see faces that look like my mother’s that seem to say, This shouldn’t be happening to me. I don’t deserve this. This was supposed to be the best time in our lives....

The daughters whose eyes I meet — we hold our parents’ arms cautiously, always on the lookout for uneven sidewalks or pavement. We have developed a new awareness of The Curb, knowing that our parents’ limbs might not do what they want them to do. Sometimes, we look very, very lost. Almost as lost as our parents who have Alzheimer’s.

Most of the time, we meet each other’s glances and then look away. We get into our cars and drive away. Some of us are going off to part-time jobs or back to our homes to be with our children or husbands. Or we are heading off to a coffee shop to have a few moments alone to breathe before we go back to the task of caregiving. Some of us will head back to the family home to do daily chores and comfort the wives or husbands of our parents with Alzheimer’s, who are suffering from broken hearts and whose lives are slowly being chipped away by the disease.

Some of us realize that we are coming home not only to help do the remembering for our Alzheimer’s-afflicted parents, but also to remember something very important about ourselves. We are coming home to learn how to measure our lives by new standards that we’ve never explored before, to measure our lives in a different way. Instead of defining ourselves by our careers, we’re defining ourselves by the amount of love our hearts can hold.

When I first came home to Michigan, my father told me every day how much he loved me. That in itself made coming home worthwhile. But I also realized that he was beginning to be unclear about where to place me. One day, as we drove in the car along country roads near our home, he turned to me and said, “Are you the youngest one?” When something like this happens with a person living with Alzheimer’s, at first, you feel this pang of pain that your own father can’t remember when you were born or where you belong in the family. Then you tell yourself not to be hurt, because it’s not that your father has forgotten you. It’s that Alzheimer’s has stolen his memories away. You say it over and over: It’s not my father. It’s his disease. Then you tell yourself once again to get over it, because each moment is so fleeting, and you must make the most of what you have now.

Right after I got home, I trained myself to respond appropriately to questions like this. Now I answer, “No, Dad, I’m the middle one,” without feeling like crying, and I take the opportunity to tell him about our family, about when my older sister, Alison, was born, and when I was born, and when my younger sister, Libby, was born. I describe our birth order the same way I would explain a news item to him or how to work a can opener. He’s always so glad to hear about the history of our family, and each time it is brand new. After I tell him that each of us went to college and what has transpired since then in our lives, he says, “Aren’t we lucky?”

Lately he has been dropping articles and prepositions and the use of proper names. So now, when he is looking for me in the house, he says, “Daughter, where are you?” It’s another one of his magnificent coping mechanisms. It’s a way to say, I know you. I may not be able to be specific about your name because of my disease, but I know you. Now, when my father calls out in the house, “Daughter, where are you?” I answer, “I’m right here, Dad. Right here, with you.”

Excerpted from "Measure of the Heart." Copyright (c) 2008 by Mary Ellen Geist. Reprinted with permission from Grand Central Publishing.

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