I knew for certain, in 2009, that my mom had Alzheimer's; when my dad had been diagnosed with stage IV lung cancer, my mom thought he had a bad cold. Every day she would ask me what was wrong with him. I would tell her he had cancer; she would say: I didn't know that. It was clear to me that she couldn't live on her own. I brought her back to Chicago with me; she was born here, not far from the apartment where I lived.
We all are apt to forget things, no matter our age. It becomes more noticeable as we reach old age, when there are reasonable fears of dementia and Alzheimer's. I had a front row seat at an accelerated version of it. I decided to keep notes, as I took care of my mom -- as a way of understanding what was happening and as a way to share our days with my siblings: Eileen, who lives here and offers so much assistance; Maureen, my quarterly trooper; Bill; and Tim, who all live in Florida. Without their help -- physically, emotionally, and financially -- we couldn't have done this for our mom. It took all of us working in concert to make this happen.
While the disease is relentless, the days we spent were filled with love. I was guided by poetry, especially the poems, Kuan Yin, by Laura Fargas, and Hope and Love, by Jane Hirshfield; music, especially Renée Fleming; the book, Improv Wisdom, by Patricia Ryan Madson; Dr. Atul Gawande's book, Being Mortal: Medicine and What Matters in the End; by friends and family; and a great physician, Dr. Rachel O'Mara. I've shared as much as I could here, hoping it may do its work and be of help to someone else.
The journal format provides a sense of the days as they unfolded. I was able to share this story in real time with my online community, The Well. I've been a member there for twenty years. Their feedback and embrace helped me immeasurably. I love them.
