But our family had truly lost her well before that. For over seven years, she had been living in a nursing home, incapacitated by early-onset Alzheimer’s disease. We had begun to see changes in her health, demeanor, and personality when she was in her mid-to-late 50’s – sudden weight loss, strange sleeping habits, difficulty in speaking, disengagement with her family and surroundings, paranoia and hallucinations – but her long-standing fear of doctors and medications caused her to resist our efforts to get her to seek help. My sister and I had both moved away, and geographic distance and the demands of our own lives limited what we could do about her situation; my dad was uninformed, fundamentally passive, and unprepared to force the issue. By the time Mom reached the point where something had to be done, there wasn’t a realistic alternative to round-the-clock care for her, and the next several years were spent in a form of limbo. By the time she died, much of our grieving had been long underway; Alzheimer’s doesn’t take the body quickly, but it does take the intangibles that make a person unique and special.
My experience with Alzheimer’s has left me with feelings of loss, guilt, and fear. I often feel that I didn’t do enough to help with or advocate for my mother. I was a young mother myself at the time she became ill, and lived over 1000 miles away for most of the years until she died, and those facts have helped me rationalize my lack of involvement. But I wonder whether I would have done many things differently if I had been there–and I’m not sure I would have. The distance and denial feel connected, and they both feed guilt, even now.
The fear comes from the scientific facts about Alzheimer’s, including these: it remains difficult to diagnose in a timely manner, lacks effective long-term treatments, and is an incurable, terminal condition. It’s still associated with many unknowns, as last year’s Shriver Report: A Woman’s Nation Takes on Alzheimer’s, elaborates:
- What causes Alzheimer’s? Is it inherited? What causes younger-onset Alzheimer’s? Is there any treatment that can delay the onset or slow down the course of the disease?
- What about new tests that may be able to tell you if you’re going to get Alzheimer’s? Are the tests ready for use? Are they accurate? Who would be a candidate to take them? If there are no foolproof treatments yet, what’s the good of knowing?
- What can we do to prevent Alzheimer’s? Do lifestyle changes really help? Should we all be hitting the treadmill, drinking tea, doing crossword puzzles, taking Omega-3 and Vitamin D?
- Why do more women get Alzheimer’s than men? Is it just because women live longer? Does estrogen play a part in prevention? If so, how much and when?
- What exactly is the natural course of the disease? Why does it play out in a few years for some patients, in a decade or more for others? Why do different people have different symptoms: some explosively angry, others hypersexual, still others mumbling or even silent? In other words, why is it that, “Once you’ve seen one case of Alzheimer’s, you’ve seen…one case of Alzheimer’s”?
- And for God’s sake, when will there be a cure?
Those living with Alzheimer’s–not just the patients, but their families and other caregivers–need resources and support now. Those who could find themselves living with it in the future need research to answer some of those unknowns.
The annual Walk to End Alzheimer’s (formerly the Alzheimer’s Memory Walk) is the nation’s major fundraising event on behalf of this disease:
“Walk to End Alzheimer’s is the nation’s largest event to raise awareness and funds for Alzheimer care, support and research. Since 1989, this all age, all-ability walk has mobilized millions to join the fight against Alzheimer’s disease, raising more than $347 million for the cause. Events are held annually in the fall in nearly 600 communities nationwide.
All Walk to End Alzheimer’s donations benefit the Alzheimer’s Association, the leading voluntary health organization in Alzheimer care, support and research. The mission of the Alzheimer’s Association is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.”
All of the unknowns can leave a person feeling that there’s little she can do about Alzheimer’s. Participating in this walk every year is one thing I can do, both in remembrance of my mother and in support of a healthier future. My family and I will be walking in Thousand Oaks, California on Saturday morning, October 29. If you’re local, we’d love to have you join us there!
I do have a fundraising goal for the Walk, and if you’d consider a donation to help me reach it, I would seriously appreciate you!