A Request in Two Acts: Act I

For the words people:

Recently I was working offisite at the Cleveland Clinic and a man came in for an appointment with me to discuss his wife's dementia. He had aged beautifully and wore a handsome custom shirt and pants with suspenders, sleeves rolled up. When he sat across from me and we began chatting, I noticed the faded tattoo on his arm. A straight line of numbers, running up his forearm. I noticed his slight accent when he asked me not to record any identifying demographic information in our database. My heart knocked loud in my chest.

He was a Holocaust survivor, as was his wife. They were both rescued at the end of the war and moved to America, where they found one another through the informal survivor network that exists in any city with a significant number of Jewish residents. They have been married for decades and decades. His wife has been slowly dying from Alzheimer's Disease for about three years.

This man had come to see me because he needed counseling on how to handle his wife, whose disease had progressed far enough to land her brain firmly back in her childhood days. In the concentration camp. Where she saw her mother murdered before her eyes. These are the memories she has left, the life she believes herself to still be living. She cries for her mother for hours each day. She often fails to recognize her husband and lashes out at him verbally and physically, believing him to be a variety of men who did god only knows what to her, long ago. She cannot be comforted.

This couple has survived more pain and heartache than almost any other I can think of. They escaped a certain death and then were lucky enough to find romantic love. They built a new, extremely successful life in a different country and enjoyed a slow progression into great wealth and status in their community. They had children and worked and built a lovely home and advocated for those who had been in their same devastating situation. They did all of these things to get away from a past that deserves no memory.

And this woman is back there again, unable to leave. Unable to accept that it all turns out okay in the end - because it doesn't, after all, not for her. She has no recollection of what came after. Because there is no prevention for Alzheimer's Disease, her mind is a loop of unnecessary fear and panic. Because there is no treatment for Alzheimer's Disease, her husband has to keep an arsenal of heavy anti-psychotics on hand and 9-1-1 on speed dial. Because there is no cure for Alzheimer's Disease, he has to simply wait until she dies of it, hoping against the norm for random moments of lucidity when the woman he loves, his oldest friend, looks at him with anything other than hate or indifference. There are no survivors of Alzheimer's Disease. There is no remission. For now, it never surrenders.

This is just one caregiver. I currently work with over 250 caregivers - and while not all of them experience such profound sadness, each family has its own story of loss. There are 14.9 million other caregivers of dementia and Alzheimer's Disease in the U.S., each with their own story. They all matter.

This fall, show them that you care by Walking to End Alzheimer's Disease in your community. Tell Washington that you care about them by signing up to become an advocate. Promise the future generation of caregivers - our generation - that we refuse to allow this disease to continue by finding the guts to say the words. Please send this post to someone who needs to know about Alzheimer's.

Contact your local chapter of the Alzheimer's Association for more ways to fight.

(edited to add: read about college basketball's winningest coach, age 59, receiving a diagnosis of early-onset AD and speaking out about it. please note that though she mentions "managing" the disease through medication and brain exercises, these are not effective at halting the progression of AD)