This past week, Dave and his sister placed their mother in a nursing home. That's a difficult sentence even to write. She is only 70. With the perfect vision of hindsight, we can find evidence of early-onset Alzheimer's Disease as much as fifteen years ago. There were small changes in personality; behavior that seemed slightly irrational, but not serious enough to challenge. Over time, the questionable choices became more worrisome, the flashes of anger more frequent, the confusion more pronounced. It cost her her job, then her driver's license, then her independence, her memories, and finally, the recognition of even those dearest to her. Her daily care now mimics that of a toddler - routine tasks like getting dressed require assistance; if left unattended she can wander into danger. For the past few years, her husband dressed her, bathed her, cooked her meals, washed her clothes, kept her safe and, through it all, did his best to maintain her dignity. But it all came at the cost of his own lifestyle, freedom and health. Finally it is enough. Professional care is now the "right" thing, the best thing for all.
Follow me while I wander for a minute, please. Have you read the book Still Alice by Lisa Genova? It is an "inside look", if you will, at a Harvard professor who is diagnosed with early-onset Alzheimer's. We see and feel the loss and confusion through her eyes. At the end of the book, she sits in her own kitchen, surrounded by her family, and unaware of her connection to them. But inside, she's still Alice. Inside, she knows who she is, who she married, she knows how many children she has - but she can't connect that knowledge with the faces around her.
Now I'm finding that the process also works backwards, in a way. When I look at the overweight woman in the nursing home, I still see the slim, health-conscious woman who spent years trying to convince me that steamed broccoli is good (its not). When I look at this woman's close-cropped hair and shapeless, elasticized clothing, I see the beautiful woman with a fashion flair that I so admired. When I watch her sit blankly in a room of loud, laughing grandchildren, I see the vivacious woman who delighted in socializing and adored her family. This woman - the one who occasionally calls me Irene and insists it's time for me to go home - is a stranger. But inside, she's still Dee!
Here's how I know: Dee has a vocal talent that defies my descriptive ability. At fifteen she was performing in musicals at a nearby college. In her early twenties, she auditioned for and was accepted into the Metropolitan Opera, but when she read the fine print of the contract it stated that she would not, necessarily, be singing in New York. She could be placed in a traveling company and perform around the world. She chose to give up that dream rather than leave her young son. She became a music teacher and shared her talent wherever she could - church, school, local theater - she even sang at our wedding.
Now, with all that is jumbled or confused or lost in her mind, music remains. She can still sit at the piano to play and sing the familiar hymns. How can it be that she can no longer tell time or read a simple children's book, but the music is still there? As time passes, the words are sometimes mumbled and the endings are almost comically loud and flourishing, but the love of music still comes through. Sometimes it makes me laugh, and sometimes it makes me cry, but it always gives me hope. Because God created a beautiful, talented, loving woman and, despite the ravages of this appalling disease, she is still that creation. She is still Dee.
*While the Music Plays On by Emery Heim, recorded by Tony Bennett, Doris Day and others.