LIVING WITH ALZHEIMER’S: WHEN YOU ARE THE STATISTIC
Tucsonan Kathleen McCormack, an accomplished woman with a long and varied career in health policy, gerontology and career coaching, now has a diagnosis of Alzheimer’s disease.
For a health professional like her, the irony of living with Alzheimer’s disease is particularly poignant.
Having known Kathleen for 22 years, I recognized that she was showing some signs of cognitive decline. Greeting cards started coming a month or more before my birthday. She began missing birthday lunch gatherings (including her own) because she couldn’t find the restaurant.
Terry, her husband of 50 years, noticed something as well.
“When I had my first inklings that Kathleen was having short-term memory problems, I waited for awhile and also consulted with other family members to make sure before I sat down with her to discuss it. Although she was resistant, Kathleen allowed me to be present during her next consult with her doctor (an internal medicine specialist). Well, not only did Kathleen resist (at first) but so did her PCP. This surprised me.”
Eight months and several appointments later, Kathleen got her referral—and diagnosis. How is she dealing with it?
“It’s a long and winding road that plays out differently for everyone,” she notes, and there are emotional ups and downs from day to day. “This is not like surgery or an illness, when you expect to get better and to recover. In our culture, people expect to get better.”
The first step is deciding what to say—and when. “For all of us, the question is, ‘Whom do you talk to? Whom do you tell?’”
Managing the family’s response is another important consideration. “They’re going through their own feelings of anger, sorrow and denial,” she says.
Now, she wants to help others facing a similar diagnosis.
Two of her siblings also have begun to exhibit signs of memory loss. Urging them to be proactive, Kathleen has taken on the delicate and difficult task of encouraging them to have a neurological assessment.
Because of her health industry background, Kathleen understands the importance of research. She is participating in a worldwide study of individuals with early Alzheimer’s disease on gantenerumab, a prospective drug developed by Hoffmann LaRoche and Genentech. She does not know if she has the placebo or the drug.
When the study concludes in two years, all randomized participants will have access to the drug, if it proves safe and effective.
In the meantime, she has found an unexpected upside. “I’ve started writing rhyming poetry, something I’ve never done before.”
Terry also is upbeat about his wife’s journey.
“Right now, Kathleen is doing well, and I see small improvements in her ability to remember things. This may be because of the behavioral modifications that she has made herself, after doing her own research on short-term memory improvement. It could also be from the positive effect of the study drug, or maybe just a placebo effect. Regardless, I am hoping that this will continue.”
---by Jodi Goalstone. She serves on the Regional Leadership Committee of the Alzheimer Association’s Desert Southwest Chapter in Southern Arizona. https://www.alz.org/dsw
