Living and dying with Alzheimer’s

08/08/2013

Doris Ober’s latest book, The Alzheimer’s Years: A Mother and Daughter Reunion, offers a glimpse into the paradoxical world of a dreaded disease and its human impacts. The author promises that readers will often find themselves laughing and, true to her word, Ms. Ober delivers an uplifting and often amusing tale. The best reason to pick up this book, however, is its graphic description of a woman’s declining years and her family’s experiences of both love and loss.

It is not the first time Ms. Ober, an accomplished editor and Point Reyes Station resident, has written about death and dying. She was a coauthor of Finding Hope When a Child Dies and Sometimes My Heart Goes Numb: Love and Caregiving in a Time of AIDS, as well as the editor of the groundbreaking report, And The Band Played On: Politics, People, and The AIDS Epidemic

More recently she published a chronicle of her life in Dogtown, where for more than two decades she lived with her husband, Richard Kirschman, in a nine-level handmade house on ten acres inhabited by an assortment of animals that Ms. Ober treated as her children. As in other books, The Dogtown Chronicles: Our Life and Times with Sheep, Goats, Llamas, and Other Creatures paid a great deal of attention to death—in that instance the deaths of the animals in her large retinue. 

In The Alzheimer’s Years, Ms. Ober writes about her mother, Betty, but she also writes about her own denial about her mother’s disease. Although she couches these discussions in terms that are more personal—and much more absorbing—than in the past, there is a basic question underlying the book: When do memory loss and forgetfulness cease to be a sign of “normal” aging and instead indicate Alzheimer’s or other forms of dementia? 

Although there were reasons to believe Betty was suffering from Alzheimer’s—symptoms such as memory loss and paranoia, among others—there was also abundant evidence to conclude that she was not. She was an extremely vigorous woman. Ms. Ober describes her as clever and funny, the “life of the party” who loved puns and wrote poetry, conducted far-ranging correspondence with many relatives, had a wide circle of friends and participated in Palo Alto’s Jewish community. Over time her activities became more limited, but she remained gregarious and alert until almost the very end of her life.    

When Betty began to suspect she had the beginnings of Alzheimer’s in her late 80’s, she asked her “cold noncommunicative M.D.” about her forgetfulness. He told her in no uncertain terms, “You don’t have Alzheimer’s.” A year later she consulted a second physician about her memory problems. The doctor assured her she was fine. (Recent reports in the New York Times have confirmed that physicians frequently discount early signs of Alzheimer’s, often preventing thoughtful planning by patients and family members.) 

Ms. Ober went to great lengths to provide emotional support for her mother. She helped her move from Palo Alto to Walnut Place, a senior housing project in Point Reyes Station much closer to Ms. Ober’s home in Dogtown. She did not move her into her own home, as she felt it would be counterproductive for both mother and daughter. The Dogtown residence was difficult to navigate, and Ms. Ober believed that living under the same roof with her mother would lead to emotional clashes and an inevitable deterioration of their relationship. They had been at odds to a greater or lesser degree for much of Ms. Ober’s early life, and Ms. Ober was fearful that past could flare up again.

Despite living apart, Ms. Ober maintained an extraordinary amount of daily contact with Betty. She went so far as to write a series of cheerful and reassuring letters before she left on vacation, which Betty’s caregiver delivered each day she was gone. Her care and attention, along with some of the more positive changes in Betty’s personality that resulted from Alzheimer’s, led to an improved relationship between the two. Although the impacts of the disease were undeniably devastating, Ms. Ober was able to derive some positive benefits from them.

As the population ages—nationally, and even more so in West Marin—Alzheimer’s is causing enormous apprehension for a growing number of people. There is both concern about how to take care of loved ones, as well as interest in understanding how to identify the affliction. The paradox is that currently the existence of Alzheimer’s can only be diagnosed posthumously. Adding to the mystery is the fact that many of the disease’s symptoms are features of normal aging. A frequent response to the onset of Alzheimer’s is denial, but the opposite—premature diagnosis—is also common. 

The Alzheimer’s Years is a timely contribution for those struggling to understand memory loss and other signs that may signal the onset of Alzheimer’s or other forms of dementia. Ms. Ober carefully limits her story to her experience with her mother, but many readers will react to her descriptions more
personally.

 

Herb Kutchins, an author and KWMR political interviewer, lives in Inverness Park.