Tuesday, August 24, 2010

Life Lessons from the Dementia Care Conference

I attended the annual Dementia Care Conference in Chicago back in the summer of 2007. I was there to promote my then self-published novel, STILL ALICE, and to meet with and interview six people with early-onset Alzheimer’s Disease. 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.


Charles Moore said...

Are you one of those who are suffering from Alzheimer and finding a solution of this disease. There are so many solutions are

on the internet but all are confusing. But you don't worry. We provide you the Best Home Remedies For Alzheimer which is perfect for you and very easy

to use. Alzheimer is a long time disease so don't be careless. Just try it and avoid fake remedies.

Unknown said...

I write as a sign of gratitude to God, i am really happy to be alive today and see the break of another day, I lived and suffered with alzheimer's disease for a very long time, I was shy and couldnt say it out because of gender and ego issues, but I sought help with herbal products by DR Jose Alessio, I contacted him and he promised to help me and told me i would share a testimony like the other user, and with his drugs, prayers and instructions I was treated and now i am free!pray to God and follow the instructions of Dr Jose, he has the perfect solutions for the following ailments,SCHIZOPHRENIA,TRAUMATIC BRAIN INJURIES or TBI, DELUSIONS, BRAIN CANCER, APHASIA, AUTISM, PSYCHOSIS, PARKINSON'S DISEASE AND STROKES.He is such a genius dealing with brain issues, you can write to him on joseherbals28@gmail.com He will surely be able to help you

Jaqulin Farnandez said...

I really liked your article which was on diagnosis & alzheimer's treatment. My brother is a patient of this disease. So we thought giving him this treatment since it was really effective. So thank you very much for the information.

Leigh Schneider said...

For those people whose relative are suffering from Alzheimer’s Disease and maybe reading this, I find it hard that people are still ignorant of herbal medicine when it comes to treating Alzheimer’s Disease.
I have been through many phases over the last couple of years since my father's diagnosis, he was 53 years old and had Early Onset Alzheimer’s Disease and his diagnosis changed my life in many ways, I spend most of the time in denial and I keep thinking the tests were wrong. But deep down I knew they were correct. Though sharing his story is very difficult. He was always very successful in being able to accomplish anything he set his mind on doing. Alzheimer’s is a bitch of a disease. It began by robbing his recent memory, but it didn't stop there. It continues to steal, taking the most recent memories until it has pilfered all but the oldest memories, he experienced a decline in his ability to think, remember and make decisions. I feel a need to express my thoughts and feelings about how it affected his day to day living and how its deteriorated since despite the help of some wonderful medics and medicine.
I remind myself how lucky to come across Charanjit rychtova's herbal medicine which is able to control this disease without any side effect, I felt a moment of relief hoping that he is free from this ailment, and nothing compares to the healing power of nature. Now I believe almost every health problem can be addressed in one natural way or another. The only thing I wanted was for him to feel better. I’m proud to say my Dad is Alzheimer’s free. You can also contact him for advice and more info. charantova@gmail.com