Every day, I visit my mother in a dementia special care unit at dinnertime. She has Lewy body dementia, and her executive function is toast. She has lost, for the most part, the ability to feed herself, so I sit next to her at one of the two round tables and feed her dinner, what little she eats. Two nursing assistants put out food for 10 or 11 other patients and help those who need it. I’ve worked in dementia research for more than 25 years; eating there, though, is like a practicum in all flavors of clinical dementia. But the Dementia Diner has had far more important lessons for me. Step over the squiggle to join me at the Diner.
Lesson 1: Gratitude. I’ve learned to be grateful for what we still have. My mother knows all of her family and remembers that we have visited. I’m thankful that her memory is relatively spared; some of her comrades not only do not recognize their children but do not even know that they ever had children. I’m thankful for the abilities she has today – she can still talk relatively fluently, she can transfer from her bed to wheelchair, and on good days she can even use a walker. These abilities could vanish tomorrow.
Lesson 2: Respect. The other patients are sometimes funny, sometimes sad, and sometimes aggravating. One woman had boundary issues and would sometimes reach over for my mother’s food. Another sings, “I’ve been working on the railroad” in a near-monotone, every evening. But I’ve come to know them all, and to see their efforts to be kind and tender to each other, and to love and honor them. What makes us all worthy of respect is not our intellects, or our wealth or status, but our humanity. Even when language and personality are stripped away, my companions at dinner deserve this.
Lesson 3: Courage. I don’t mean wartime courage, but the quieter courage that brings family members here every day. One nurse told me that when she first started working and observed that some patients were never visited, for months on end, she was angry at their families. Then she realized how painful it was for them to see a spouse or parent like that. My dad is 97 and has been married to my mother for 67 years. He is frightened, angry at the world for this, and yes, in pain. But he trundles over with his walker, a long walk for a frail old man, several times a day. He brings my mother grapes, and little chocolate mints, and holds her hand. He goes back and cries. His courage breaks my heart.
Lesson 4: Now. Be who you want to be, now. Be kind. Be generous. Be true. Be brave. Because someday, all that you were may be stripped away from you, and what will be left may be quite different. The memories your families and friends have of you will sustain them if you wind up with dementia. I tell the nurses that my mother was a speech pathologist. She jumped on her late chance to get an education. She loved her work, helping children. She had a wonderful sense of humor. They see a tired, sweet, still beautiful but very old woman, who needs help eating and has to wear diapers. But through my eyes, they catch a glimpse of the mother I remember, who is still there, in my heart, as I sit with her and feed her green tea ice cream, spoon by spoon.