Accepting Alzheimer's one lost memory at a time

* With a slow moving disease like Alzheimer’s, there’s still time for doubt. Perhaps the diagnosis is wrong and the memory holes and struggle for words are just normal aging. Deep in your psyche, there’s still a little spark of hope. But there comes a moment when denial is no longer an option. Like Alzheimer’s itself, the moment creeps up slowly, taking care to not give away too much too soon. My moment came recently, as I was walking past the Bucks County Playhouse in downtown New Hope, Pa. I correctly remembered that my husband, Tim, and I recently saw a show there. I even remembered who went with us. But I had no recollection of what show I had seen. Tim reminded me that it was “Guys and Dolls,” but the memory wasn’t there. No songs, no story, no scenes. Nothing at all. The next morning, I sat quietly on my bed. “Tim,” I said, “It’s coming, isn’t it?” Without asking what I meant, Tim gently said, “Yes, it’s coming.” ADVERTISEMENT I cried, of course, but just a little. I’ve known, obviously, that change is coming. I’ve been tested, prodded, injected and studied for well over two years as part of a clinical trial. But looking back, I realize that I’ve still harbored a shadow of doubt. The shadow is gone. The spark of hope has been extinguished. Now we have to seriously plan for the future. Alzheimer’s will continue to steal from me, and, unless there’s an unlikely medical miracle, nothing is going to stop the creeping loss. Loss of memory. Loss of mobility. Loss of freedom. Despite this, I haven’t thrown in the towel. Deep down, I know there’s much more life to live, much more time to fight and to love. The years since my diagnosis haven’t been all bad. A few months after we learned the news, my partner of 12 years and I went to the county courthouse to get married. My sister and my nieces and nephew joined us and took pictures as we kissed for the first time as a married couple and fulfilled the Jewish tradition of breaking a glass for good luck. I was also asked to serve on a national advisory committee for the Alzheimer’s Association. During my yearlong tenure, I learned of so much wonderful advocacy and research and spoke at conferences around the country. I met the most amazing group of people including those with dementia and those working hard every day to stop the disease.