Sep 182007

I recently attended the annual Dementia Care Conference in Chicago. I was there to promote my novel, STILL ALICE, and to meet with and interview six people with early-onset Alzheimer’s Disease for my next book. Two of the six I’d already become good friends with over the past year. I knew the others more recently and less intimately. But I knew all of them only virtually, through emails and phone calls, and I couldn’t wait to know these friends of mine in three dimensions and in real time.

Early-onset Alzheimer’s is Alzheimer’s before the age of 65. My friends here are all young, in their forties, fifties, and sixties. They are all also in the early stages of Alzheimer’s, so they are still able to articulate their stories. I sat with each person and asked questions aimed at understanding what it is like to live with Alzheimer’s Disease. We talked about the things you might expect, about the dramatic changes that this disease precipitates—the abrupt end to fast-paced, high-powered, personally-fulfilling careers, a shift in or relinquishing of certain responsibilities at home, and planning for a new kind of future, one they never had imagined having to age into. We talked about loss of status, loss of friendships, anger, and denial.

But then, each and every person told me about the significant ways in which they are truly and deeply happy and at peace in their lives. Even now, I hesitate typing these words. I don’t want to oversimplify or minimize. I don’t mean to romanticize this disease. This disease is dark and brutal and rips apart neurons and relationships and dreams for the future. Maybe this is surprising to hear, but there was very little talk in these conversations of doom and gloom, heartbreaking sadness, the grim reaper lurking in the shadows behind us. What I witnessed, without exception and over and over, was a joy and gratitude for life.

I saw a mental calmness and clarity, not despair or emptiness. These individuals are highly focused on the stuff that matters and undistracted by the stuff that doesn’t. They have a laugh-out-loud sense of humor about their disease. They have a strong sense of purpose and spirituality and connection to God. They are all extremely present in their lives, available to their families and loved ones and unafraid of expressing their love for them. They are all exercising and eating healthy diets. They are all living fully in the moment, these friends of mine with Alzheimer’s Disease. I felt relaxed, happy, and inspired talking with them.

They and I realize that this is all for now. For now, Alzheimer’s is a story without a happy ending. For now, this disease eventually laughs in the face of Aricept and kicks Namenda aside as it marches on its path of destruction. But for now, Aricept and Namenda are holding their ground enough. For now, my friends with Alzheimer’s are able to actively participate in life, to advocate for people with Alzheimer’s, to enjoy their families and friends and what is beautiful in the world around them, and to love fully. And they do.

Lisa Genova, author of STILL ALICE,

  3 Responses to “Life Lessons from the Dementia Care Conference”

  1. A lot depends on what question is asked. If one asks "how does it feel to have this terrible disease" one can get unhappy answers. If one asks – as Lisa does – "how are you enjoying your life" then one can get happy answers. There should be much more focus on ways people living with AD can enjoy their lives.

  2. Lisa, Your words about our members speak words beyond boundaries. The elegance and thoughtfulness of your knowledge, understanding and concern of the plight of us all is a welcomed breathe in this world that seems to ignore us. Thank you for these messages to the outer world…and hope that this disease will become more main stream for earlier diagnosis and intervention.Candy Harrison

  3. I completely agree with you when you say the people with alzheimers have such a positive attitude. My identical twin sister, Sharon Simpson, was diagnosed in 2001 at the young age of 55. She lost her battle Jan. 6, 2007 at the age of 61. She had such a positive attitude, she never let it get her down. All the way home from Mayo Clinic where she was diagnosed, I cried, she held my hand and said it would be ok. Through her disease she just accepted the things she could no longer do. She was happy. Much happier and accepting than I was. My sister and I were able to meet Chris Bakowski who I also know was at the Chicago Conference. She is an amazing woman. I am amazed at what she is still able to do. She was actually diagnosed right before my sister. I think this disease moves faster in some than in others, with my sister it seemed to go very fast. I miss my sister more than words can say. I've lost part of my identity. It is hard to put into words the connection of twins, only other twins would understand. She was half of my whole. There are days I don't feel this grief will ever end. I feel I actually started grieving her when she was diagnosed, because with this disease you know there is never a good ending. I was amazed at her wake at some of the comments, most people don't know that this disease is actually a killer, most of them think you just loose your memory. I could go on and on, but just wanted to post a comment. I really enjoyed reading what you had to say. Sheryl Hall

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