Fresh Ideas: A new way to live with Alzheimer’s

Approximately 15 years ago I began contributing to Fresh Ideas with several columns on my mother’s seemingly inexplicable and puzzling behavior. It had begun with her referring to me as either the “big, sad Ursula,” whom she didn’t like, or the “little, happy Ursula in the green coat,” whom she did. One time, as we were companionably walking downtown to the bank, she asked me if I knew Ursula, and when I said I did, she asked if I could fill her in on Ursula’s life from age 18 to the present. Since I was 50 then, I was stunned. How could my mother have forgotten 30 years of my life?

I attributed these out-of-the-blue, unsettling episodes to various traumas because, for the most part, my mother was perfectly normal. As time went on, however, Daddy, my brother and I realized something was amiss. We took her to the doctor; tests were done, including one for cognitive impairment (Alzheimer’s), and she passed them all. At 87, she was remarkably vigorous and spry. I do remember her asking me once if she might have schizophrenia. I asked an expert who said, “No, not onset at that late age.”

Only much later did I recall my mother’s question and realized she knew very well that something frightening was happening in her head.

On May 1, the New York Times ran a special 12-page section titled “Fraying at the Edges” about a woman who has Alzheimer’s. My first reaction, “I don’t know if I can stand to read it,” was based on not wanting to relive my mother’s experience of dementia, despite the fact we never knew what exactly she suffered from, nor did I want to know in detail the specific symptoms one experiences with Alzheimer’s — because I was scared I might recognize some of them in myself. Nevertheless, I began reading it, then put it down. My fingers were cold. I didn’t even want to look at the pictures of the woman. I was afraid I’d see my mother’s blank, empty look, her blue eyes like pebbles.

But I persevered. If the New York Times believed the story worth 12 pages, I would be a fool not to read it.

The story confronted all our fears and allowed me to overcome mine. Geri Taylor, the woman, a nurse herself, shows us how to accept that Alzheimer’s diagnosis, how not to see it as the end, but rather as a new lease on life.

Geri’s first departure from the typical reaction to the diagnosis occurred when her therapist recommended she not tell anyone. To keep it hidden, as if she were no longer a real person, went against Geri’s grain. She gradually and systematically did tell everyone and dropped the therapist instead. Together with her husband (who initially suffered two weeks of depression and anger at her diagnosis), the two began making a to-do list that included when to tell their kids. This Geri did with each child individually, because every “kid wants to feel that you have an individual relationship with them. If you sit them together, you’re treating them like a package of Chiclets ... they’re going to be reacting to their siblings and their relationships.”

Their to-do list included other concerns, such as whether to keep their apartment and their little house in Connecticut; when to plan for advanced care; revise their wills; find out about Alzheimer’s assistance and units and how to reconfigure their apartment if the need arose. After that they embarked on doing everything they enjoyed, including seeing friends, bird photography, and acting lessons.

(To be continued).

Ursula Carlson, Ph.D., is professor emerita at Western Nevada College.