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Thursday, September 5, 2013

The Annual Alzheimer's Post: Walking to End It in 2013


Mary Ann, Florinda, and Teresa, many years ago
family photo courtesy of Teresa Lantos DeGagne
(I call this "The Annual Alzheimer's Post" because, with minor changes, it goes up around this time every year, to accompany the annual Walk to End Alzheimer's. Details on the 2013 Walk, and my team's fundraising link, are below.)

On October 8, 1999, my mother, Mary Ann Corsino Lantos, passed away. A New York City native and, after a nine-year detour to southwestern Connecticut, a resident of St. Petersburg, Florida for 22 years, she was 69 years old at the time of her death. She was survived by her husband, two adult daughters, and one teenage grandson. This is what my sister says about her:
My mother was many things: loving, smart, funny, artistic, a voracious reader, and a quiet influence. She overcame many challenges throughout her life--including being born legally blind and losing her own mother before she was six years old. (Her) story is filled with drama, hope, faith and laughter. It would have been amazing to see how it would have played out had she lived fully, longer. My mother passed away at the age of sixty-nine, after being in the full throes of dementia from early-onset Alzheimer's disease for seven years.
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 the 2010 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 is the nation’s major fundraising/awareness event on behalf of this disease:
"The Alzheimer's Association Walk to End Alzheimer’s™ is the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research. Held annually in more than 600 communities nationwide, this inspiring event calls on participants of all ages and abilities to reclaim the future for millions. Together, we can end Alzheimer’s disease, the nation’s sixth-leading cause of death.
Walk to End Alzheimer’s unites the entire community — family, friends, co-workers, social and religious groups and more --- in a display of combined strength and dedication in the fight against this devastating disease. While there is no fee to register, each participant is expected to fundraise in order to contribute to the cause and raise awareness.

When you participate in Walk, your fundraising dollars fuel our mission-related initiatives of care, support and research. In addition, your actions, both through fundraising and participating in the event, help to change the level of Alzheimer’s awareness in your community. At a Walk event, you can learn more about Alzheimer’s disease and the support programs and services offered by your local chapter. You will also have unique opportunities to get involved with the cause through advocacy initiatives and clinical trial enrollment."
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 will be doing the 2013 5K Walk to End Alzheimer's at the Thousand Oaks (California) Civic Arts Plaza on Saturday, September 21. If you’re local, we’d love to have you join us there!

I may not be able to join my sister, brother-in-law, and nephews on the Walk this year due to a schedule conflict, but I do want to help them reach (or exceed!) the team fundraising goal--I hope you'll help me help them with a donation to Team Mary Ann's Mafia!


Previous posts about Alzheimer’s on The 3 R’s Blog (sources for some of the material included in this one):