Valerie Thaler, an alumna of the Wexner Graduate Fellowship Program (Class VIII), is Assistant Professor of History at Towson University in Maryland; she is also a member of the graduate faculty for the MA programs in Judaic Studies and Jewish Communal Service (affiliated with the Baltimore Hebrew Institute). Valerie can be reached at firstname.lastname@example.org.
The day this article was due (Oct. 22, 2010), was my parents’ 50th wedding anniversary, a tremendous milestone for any couple. My mother and father met in 1958 in the Penn Hillel choir; we celebrated two weeks ago with a big family get-together. Our relatives asked if it is a surprise party. For my father, it certainly wasn’t (he and Mom helped make the guest list).
For my mother, though, it sort of was. This year she was diagnosed with Alzheimer’s Disease. She is only 70 years old, but has had symptoms of memory loss for about 5 years. My mother, who is one of the most intelligent and creative people I know, now cannot read even a newspaper article, let alone a magazine or book. She has trouble following simple conversations, and gets confused when language is more figurative than literal. At times she makes references to things that happened twenty years ago as if they were occurring right now. All of these are classic AD symptoms.
I once heard the experience of having Alzheimer’s Disease compared to that moment when you get up in a hotel room and feel disoriented; it takes a couple seconds to figure out where you are. The only difference: for AD patients, that moment occurs repeatedly throughout the day, even constantly.
Despite the losses, Mom remembers having had a good time the day of her party, even if she can’t recall the details of who was there or what was said. She remembers being happy. She still loves to be with family, and to play with her grandchildren. Her memory of her own childhood is sharper than ever, and she makes a valiant effort to “keep it together,” even if she is completely exhausted afterwards. Despite all that she has lost, she has the same wonderful personality we’ve always loved. Her appreciation of music and the arts are as strong as they have ever been. She still does her daily crosswords (if not as well as even two months ago). And, should I ask her a question about teaching or advising students, Mom is the consummate professional. On some subjects, she doesn’t miss a beat (she was a teacher and administrator for many years).
The last two years or so have drawn my family closer than we have ever been (and we’ve always been tight). As we help my parents get the support they need (medical, emotional, and psychological), my sisters and I have witnessed the equally valiant struggle the caregiver faces in coping with this dreadful disease – in this case, my father. We try as hard as possible to think of “all that remains,” because we know the next two or three years are going to be incredibly tough for him, as he watches his partner of 50 plus years slip away from him.
While we cannot change the prognosis for my mother, we can at least educate ourselves in order to help her get the most out of life on a day-to-day basis, living in the moment (as every AD patient must do). One of the most helpful books I have read is Still Alice, Lisa Genova’s brilliant novel written from the point of view of an Alzheimer’s patient. It provides truly astonishing, if devastating, insight into what it is like to have Alzheimer’s.
Most disturbing is the rate at which the number of AD patients is growing. In terms of costs, it is slated to be the disease most crippling to the baby boomer generation. That said, the amount of money our federal government devotes to Alzheimer’s research is astonishingly small in relation to other conditions such as cancer and heart disease. The Alzheimer’s Association is currently lobbying for change on that score.
At least in my community, I have also encountered reluctance to confront the problem in conversation. People don’t want to talk about it. It seems that AD patients are frozen in many people’s minds as people bound to a nursing home, 85 to 100 years old, staring blankly into space. Since one in two persons over 85 has dementia, and 60 percent of dementia is believed to be Alzheimer’s-related, this is not an inaccurate stereotype. Of course it’s depressing, and we shy away from uncomfortable topics. But it’s happening to so many in our community, regardess of background.
When it happens to your family member at a comparatively young age Alzheimer’s Disease is no longer a problem afflicting a stranger. It is a nightmare come true. Taking action, then, is no longer a choice. Since I have begun talking about it, the people in my immediate community who have lost a relative to Alzheimer’s (or are coping with it now) have come out of the woodwork. The stigma fades, as caregivers and family members come together and share their stories. They have to. But that needs to happen everywhere for change to take place. AD forces on us lessons that we’d much rather learn through other means: the values of compassion, human dignity, and the uncompromising strength of the human soul.