CEO reflects on 24 years with the Alzheimer’s Association

This month marks my 24th year with the Alzheimer’s Association – I have been with the organization for 24 of its 31 years. My wife, daughter, Golden Retriever and I moved here in 1986 from Chicago because Mary’s company wanted her in California. I had been the director of a non-profit child care program serving low-income families on the west side for 12 years and was burned out on the hand-to-mouth nature of child care. I really thought I might get out of non-profit life at that point, but after a few months of loafing and a couple of consulting gigs, I met the volunteers from the Alzheimer’s Association.

They were very good people and I liked their philosophy about non-profit employment; they didn’t think the employees should subsidize the work with their salaries. I remember taking my wife to dinner shortly after getting the job and saying it probably wouldn’t last long.

But the work caught me. The people, the struggle, the constant balancing of hope and realism caught me. Early on we were a staff of two and I became very good at answering our Helpline. I figured out quickly that when I picked up the phone I couldn’t 1) put money in the caller’s pocket or 2) cure Alzheimer’s, but with those two fairly significant limitations, there was a great deal I could do. Time after time, callers taught me about the challenges of Alzheimer’s and we worked to leave the call in a better place than they began. We were – and I hope are – tenacious about finding resources for families. Both I and my assistant kept three-ring binders with copious hand written notes of resources, names and phone numbers.

I attended support groups where I met my first early stage individual, a man who had recently lost his job because Alzheimer’s had interfered with his work. In those days it was very rare to meet people with a diagnosis who were lucid and insightful.

I learned so much about the disease and how much each story could vary depending on any number of factors. I remember a woman coming into our office saying, “I need a book or a gun.” I told her we had books and she said a gun might be the better solution. She went on to tell me the history of an abusive father who now had Alzheimer’s with only his daughter to care about him. She proclaimed repeatedly that she “would not go the extra mile for him,” but she stayed for an hour to talk and gather materials. I learned that caregivers are the heroes, the survivors and yet Alzheimer’s doesn’t make saints of them. It is relentless and overlays stress on whatever family relationships existed before.

Today, I see my work as balanced between feeding a movement and building the infrastructure to support that movement. I spend a great deal more of my time in fundraising than I did years ago and have a much greater appreciation for the challenges of getting a nation to look at and consider Alzheimer’s.

I am immensely proud of our Association and the role we play in people’s lives. We are the oxygen in the room to policy and programs for people with Alzheimer’s. The Social Security Administration changes to compassionate allowance for persons with Alzheimer’s and the recent signing of the National Alzheimer’s Project Act are wonderful examples of our work that doesn’t put a dime in our coffers but will make a difference in the lives of millions who will never know of our work.

Last year we were voted the Number One Best Place to Work in our size in the Bay Area by the San Francisco/ Silicon Valley Business Times. I was called by a reporter to ask our secret. I think he wanted me to tell him it was the yoga class or the dogs who visit our office, but the fact is, it’s the mission. People are attracted to it and the people who choose this – as staff or as volunteers –  find their personal values reflected in our work.  The cause remains compelling and the mission continues to attract a wonderful group of people.