I have been keeping a journal since my husband Dale was diagnosed with Alzheimer’s disease in 2010. My writing has helped me express difficult feelings, keep track of experiences, and cope with the innumerable changes that unfold with the disease. Recently I began to wonder whether my journal could be shared in ways that might also help others facing similar challenges.
As I reviewed the pages, I saw that I had used many images to describe what I was witnessing and feeling as Dale’s disease progressed. This was no surprise really, since images often come to me much more easily than words. I decided to try telling our story by pairing visual images—my photos—with reflections—my writing.
It is my hope that by sharing this way, I am carrying forward what Dale began when he accepted his diagnosis fully and openly. Because he had Alzheimer’s in his family, Dale had thought deeply about what he might do if he, too, had the disease. He sought an evaluation early, and when diagnosed, faced the disease head-on. He entered a clinical trial that involved brain surgery, not knowing for four years whether he had received treatment or placebo. Until the disease removed the memory of its presence, he told everyone he knew that he was living with Alzheimer’s. He walked bravely with that knowledge, hoping to reduce the stigma of the disease. He has been my hero all along the way.
Dale is now in middle stage Alzheimer’s. His verbal language is very limited and retention time is down to seconds. He requires guidance throughout the day and assistance with self-care. What he doesn’t need help with, though, is finding joy in the moment. He LOVES greeting and being with people, singing, dancing, and spending time with our dog, Lucky Day. Although he no longer has access to the memory of his diagnosis or understands what Alzheimer’s disease is, he continues to be an example of someone living fully with “what is.”
As Dale said in a video filmed in 2015 for a seminary course on dementia that we were a part of:
“Okay, this is it. I don’t like it. I didn’t want it. But I’ve got it. And I’m going to do the best I can with it.”
Me, too, Dale. Me, too.