I Can't Remember: Family Stories of Alzheimer's Disease

Preface

PREFACE I was never close to my mother-in-law. Although she was warm and friendly and always bent over backwards to demonstrate how much she cared for me, I never quite believed her. At least not enough to feel completely comfortable. But we were comfortable enough with each other; neither of us wished to make waves. What for? Since we lived eight hundred miles apart, our relationship was not agonized over. I saw her infrequently. She aged without my active support. But when she was diagnosed with Alzheimer's disease, my involvement in her life intensified. My husband was upset; he was confused about what should be done for her. I had been a social worker before becoming a photographer, and it fell to me to make more decisions for her than I would have anticipated, given our past relationship. Her daughter, a psychologist, was too connected emotionally to her mother and was having trouble with objectivity. She was distraught , at times consumed with guilt that overshadowed her intense love for her mother. She, too, lived far away. For months, we listened to telephone reports from my fatherin -law, a man my mother-in-law constantly reminded us had made her unhappy throughout their marriage. In the early years, her three chilCopyrighted Material 15 PREFACE 16 dren had occupied all her time, and she had easily ignored him. Now that they were left with only each other, their arguments were daily and bitter. He convinced us all that she was demented and needed immediate attention. The appointment with the neurologist who would make the diagnosis of Alzheimer's was arranged in the midst of her deep depression. On a Mother's Day weekend, my husband and I, my husband's sister, his brother, and his brother's daughter and her fiance moved into my in-laws' four-bedroom, one-bath apartment in Brooklyn , New York, in order to evaluate my mother-in-Iaw's condition. At first we saw a very depressed old woman. She cried a lot and refused to get out of bed. "What's the use?" she said many times. When she was able to explain her depression, however, she made perfect sense. She did not sound demented. She said that her husband was cold and aloof. She could not talk to him; he gave her no support. She had no friends. She had nothing to do with her time. After a lifetime of caring for her children (she had also raised the granddaughter who was with us), she was left feeling useless. She loved to walk but at age eighty-four, she was afraid to walk outside alone. She responded easily to our urging her to walk with us. She almost happily went shopping for new clothes and a pair of sneakers. She Copyrighted Material went out for dinner. She was practically her old self. It was as if we were witnessing a miracle. All my mother-in-law needed was some stimulation from people who cared enough to give it to her. Her dementia receded . Her condition had to be depression, not Alzheimer's. Wow! A happy ending to a Mother's Day weekend in Brooklyn. Depression can be cured! Or at least alleviated. But, of course, that was not to be. There were more tests, more episodes of dementia. She was examined and re-examined. She did indeed have Alzheimer's disease. Her daughter, Arlene, now was able to take over the lead in making the decisions for her care. Quite by accident at age fifty-eight, I had discovered that I could make reasonably interesting photographs of people. After thirty years as a clinical social worker, I had decided to leave my practice and concentrate on looking at people's outsides rather than their insides. I wanted to photograph some of the social issues that I had worked with all those years. During that Mother's Day weekend I made the images that are presented in the first story. Then, later, following my need to present social issues on film, I asked the Alzheimer's Association of St. Louis to find some other families that would be interested in having their stories told. Hence the other two stories. I chose the images for this book by the feelings that they evoke Copyrighted Material PREFACE 17 PREFACE 18 in me. They reflect what was going on at the time, but they...