Musings on Ten Thousand Joys and Ten Thousand Sorrows: A Couple's Journey Through Alzheimer's, by Olivia Ames Hoblitzelle.
Finding meaning in the loss of the capacity to find meaning: that is the challenge for anyone whose life has been spent in the pursuit of meaning and who now faces dementia. Olivia Ames Hoblitzelle and her husband, Harrison "Hob" Hoblitzelle, both put the study and practice of meditation at the center of their personal and professional lives. Olivia's memoir of their life after Hob had been diagnosed with Alzheimer's refers to many of the difficulties they encountered, but she spends much more time describing and explaining the rewards of sharing, insight, and patience.
Hob and Olivia decided soon after his diagnosis to accept his condition and be open to the lessons it offered, and he spent much of his final years observing with curiosity the progress of the disease. It was meaningful to him, and he could share that with Olivia, and that sharing multiplied the joys of their journey together.
As I read it, I was a bit envious.
I have often wondered whether being more open with Bru about his dementia might be good for him, and for me. But his reaction to being told he had dementia was very different from Hob's. The diagnosis was deeply traumatic. For months, he refused to leave the house without me. He did not want to be alone at home, either. He was terribly anxious and grief-stricken for weeks and weeks. Only gradually did we claw our way back to a place where he could exercise a significant level of independence.
He has since lost most of that independence, but the intense anxiety has faded away. Thank God.
Though I was distressed by Bru's diagnosis—I knew he had some cognitive problems, but I hadn't realized he had already crossed over the line that defines dementia—I was traumatized by his anxiety. Now I rarely mention his dementia to him or in his presence. Really, only at the doctor's office. If we talk about his condition, we refer to his "memory problems." He knows he has lost many of his memories—he can't remember how we met, or some of the places where he taught, or colleagues he worked with every day. He knows he has trouble solving problems and can't find the words for what he wants to say. He knows his capacities are diminished, but he thinks of it as normal aging. Which it isn't, however common it might be among people in their late 80s.
Would it be better for him to find meaning in his diminishment? Would greater awareness in the moment be a blessing or a curse, a joy or a sorrow? Would it be both, and could I stand the curse for the sake of the blessing?
Though Bru didn't have as strong a commitment or understanding of meditation and spiritual journeying as the Hoblitzelles, he has long been a consciously spiritual person and did keep up a meditation practice for many years until very recently. However, he no longer understands the point of meditation.
He has found other, narrower, outlets. He still finds comfort in sharing contemplative spaces with me, for example, and he loves to study black and white photographs that he has made, as well as those of some of the great photographers he has known. He is often moved to the point of tears when he is fully immersed in an image or a moment. There is a deep joy in that, but the concepts behind such experiences are beyond his interest.
Bru's narrower outlets get narrower all the time. The narrowing seems to be the corresponding sorrow to my continuing joy in the beauty of our everyday. It is a mercy that Bru isn't aware of the narrowing as such. And I'm grateful for such mercies, though I still weep over them.