I had a powerful teacher in my adult life — one who was uncompromising and harsh, one who reached into the depths of my being, my soul, and rearranged landscapes. One who taught me that what I saw with my eyes and heard with my ears was never the full story — there was always something deeper, hidden from view, if I only had the patience and the softness to look beyond the surface of things. That teacher’s name was Alzheimer’s. It came for my father sometime around 1993 — like a cunning thief, sneaking in with the shadows and only stealing small things at first, but getting bolder with time until its conquest was indisputable.

People didn’t talk much about Alzheimer’s, or any kind of dementia, in those years. The world knew my father was ill, but no one asked how family members were doing, so I got used to the solitariness of the journey. I watched as the disease chipped away at my father’s memory, his attention span; I listened as his sentences became cobbled together words that didn’t make sense. I prayed for a way to learn from this strange odyssey. It dawned on me that I had to learn from the thief itself — from the disease that was now transforming our lives.

In the long decade of my father’s illness I learned that words are not the only means of communication. Much can be said in silence if you trust that the heart can send messages to another person on some invisible plane beyond the reach of language. I learned that grief is a deep river and sometimes the waters rise over your head. It can feel like drowning, but if you let the currents take you, you’ll reach calmer pools. I learned that sorrow and laughter can hold hands and help each other along. I learned that other people always surprise you — those who abandon you and those who show up quietly and calmly, willing to just be there for you. Most of all, I learned to trust in the elixir of faith — that beyond the ravages of dementia there is a soul that isn’t sick, that is simply huddled behind broken words and blank memories, hoping that someone knows it’s still there.

For the past few years I have run a support group at UCLA for family members and caregivers of those with Alzheimer’s or dementia. Twice a week, I listen to people expressing the emotions I know so well — people who feel a little less lonely by being in a room with others who are experiencing the same feelings. I titled the group Beyond Alzheimer’s because I wanted to impart the idea of looking beyond the surface of a disease that steals so much. Mine was a solitary journey, and it taught me powerful lessons. But my hope is to provide other people with travel buddies along what is often rough terrain.

I was angry at Alzheimer’s at first. Then I realized anger was pointless, and I started asking What can I learn from this? I try to always remember that lesson — it’s a good way to go through life.



  1. Darlena says:

    I couldn’t have said it better. Thank you. My mom moved in with me a year ago with moderate dementia. I am doing this alone. One of the hardest things has been that my two brothers have completely bailed on us. According to The Alzheimer’s Society that is not unusual. I have to often remind myself that my anger toward them doesn’t serve me. My mom was a good mom. I wish UCLA was closer. Thanks Patti for your good work.

  2. Kathryn Kingsbery says:

    My father was diagnosed with Alzheimers at 57, when I was 27. Really he had been suffering for quite some time, probably since I was in college, but we couldn’t understand what was happening to him. This disease has shaped my life dramatically in so many ways, and I both miss my father terribly and grieve not having had the chance to know him as an adult. And yet, as you mentioned, the essential parts of him are still there in the midst of so much confusion. Thank you for your reflections..wish I were able to attend your group.

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