BEFORE YOU FORGET
Today I ran across some words my mother wrote in 2004: the last paragraph of the Christmas letter from that year, signed off as always with words of love and encouragement from Molly. The last thought is particularly profound as it was written by someone who would lose her life to Alzheimer's disease: "....write what you remember---before you forget".
My sister Amy found the letter as we were packing up things in the house in the Hollywood Hills, and we wondered out loud if she already knew; and if not then, when did she begin to realize that something was wrong? We'll never know, but what we do know for sure is that because of the fear and stigma surrounding Alzheimer's, she (we) waited far too long to tackle the problem head on; to see a neurologist, get the diagnosis, and take every possible proactive step as early as possible.
Would it have made a difference? In terms of the progression of the disease, no. What we know about Alzheimer's is that it cannot be cured, and the drugs available today do very little. But in terms of her comfort, and the quality of life for both her and my dad, it would have made a big difference. We would have planned better, spent more time together, been kinder and gentler to one another, and celebrated more. Plus, no one attacked a big problem like Molly Gray, and if she had been diagnosed early, I know that mom would have thrown herself into creating a memoir that we would all would cherish today.
About once a week someone here at the Atlanta Tech Village approaches me with a questioning look in their eyes - they know me as "that Alzheimer's guy" because I am one of the co-founders of The Memory Kit, and most know I lost my mom to the disease. They don't always want advice, just someone to talk to who's been there, and who understands what they're going through. But often their family is stuck where we were for too long: aware that something profond was happening, suspecting Alzheimer's, but not confronting it head on. If asked, I always offer the same advice: get proactive now. Early symptoms? Get to a neurologist and get diagnosed as soon as possible. You'll find out out if it's Alzheimer's or another form of dementia, or another condition with similar symptoms. You have absolutely nothing to gain and everything to lose by delaying the process. If you're a child with a parent (or siblings) trapped in place of fear or denial you may have to push, to be the squeaky wheel. It might be hard, and it might take some time to get everyone on the same page, but it will be well worth it, I promise.
For the record, as for me and how I handled things, I feel like I failed for the most part. I often wonder, would I have heeded the counsel I have given to others? I like to think so, but Alzheimer's is a disease surrounded with fear and stigma, and it can really throw a monkey wrench into family dynamics (as if they aren't already complicated enough!). If you have a loved one with early, or not-so-early, symptoms I encourage you to make it your New Year's resolution to push hard to get them diagnosed, and to seek out the information and resources and support you need.
For you and your family, I wish you a year filled with special moments together. And along the way take Molly's advice: "....write what you remember-----before you forget".
Jeff