These days, when friends ask how my mother’s doing, I say she’s enjoying her Alzheimer’s. That may sound shocking, but it seems to be the truth.
She hasn’t always been this way. Her illness has been slow moving and I sometimes felt we were on a roller coaster ride of sorrow and anguish interspersed with moments of shared joy and laughter, like the day we playfully crunched colorful fall leaves under our feet.
But for several years now, my mother has been peaceful. And after a life of sleepless nights and ceaseless worry, she is finally, in the autumn of her years, enjoying the small things, like her hands and the edges of her blanket. In fact, she has become quite the explorer, examining everything with her fingers and her mouth, and she seems pleased each time she discovers things anew.
She doesn’t speak much anymore, but every once in a while she utters a perfectly coherent sentence or phrase. And she doesn’t appear to notice the card I drew for her with the big red heart on it, nor has she known my name for years.
Unfortunately, I don’t get to see her much. She’s in Iowa, near my brother, and I am enormously grateful that he’s with her almost every day. The last time I was able to visit, I hadn’t seen her for a long time and I worried about what I’d find, and how we would spend time together.
My brother dropped me off at the nursing home where my mother now lives, and to my surprise, my mother instantly fastened her eyes and her energy upon me, dismissing everyone else in the room, who noticed it before I did. The intent way she looked at me made it perfectly clear to all of them that I was still special to her. But I hadn’t understood until then that she still knows me in some fundamental way that does not need a name for my face or a label for our relationship.
The staff left us alone together, and we spent the next five hours humming a four-note little ditty that she had made up, and laughing more often than not. Yes, in addition to being an explorer, my mother is now a composer, and she made it quite clear that I had to follow her direction flawlessly! If I made the tiniest mistake or altered even one of her musical notes, she would correct me with her eyes and a pointed nod of her head. At other times, she would just laugh and start over. But if I stopped humming altogether, she would begin to hum very loudly and fix me with a wide, hard gaze. This was the mother I knew. This IS my mother.
When her lunch arrived, she ate the dessert first, eyeballing me steadily and insisting upon my complete attention. And when I tried to get her to eat the protein portion of her meal, she just pointed at the pudding and said, giddily and clear as a bell, “But this is so much better!” We laughed at that until we got tears in our eyes, and when she had finished eating exactly what she wanted, which she did with evident relish, she resumed her exploration of the world around her.
Alzheimer’s disease usually horrifies people. Does it horrify you? Must it? It doesn’t horrify my mother, and it has stopped horrifying me. Though the challenges and sadness Alzheimer’s causes are real indeed, they are usually the only part that people dwell on. But there’s more to it than that, and I learned some invaluable life lessons about selfhood from my mother and from watching her live with Alzheimer’s.
I discovered that her spirit and character are largely intact, and that she is perfectly recognizable as herself. Her indomitable will is still evident—altered, but still there. Her determination, joyfulness and laughter, wary watchfulness, sense of humor, sarcasm, love of fun, and need to control are also still there, and plain to see. She has “attitude,” and still lets you know right quick with a paranoid laugh that you can’t put one over on her. What’s missing—her anxiety, worry, perfectionism, inability to sleep, and the excessive judgment she apparently internalized from her father and applied mercilessly to herself—she can surely do without. She has, in large part, been released from these withering sources of suffering from her earlier life.
To put it another way—and strangely so—my mother has retained her dignity. She still has pride and self-respect. And I have learned that dignity has nothing to do with the fact that she’s incontinent or that her mind is changing. No, my mother is not only her mind, or even primarily her mind, and it’s clearly not the source of her dignity.
What I’ve had the great fortune to learn from her—and from Alzheimer’s—is that dignity is a declaration of her spirit. My mother still has tremendous spirit, and she makes no judgments and carries no shame.
In that, she is far ahead of many of us. And she lives completely in the moment—while we, who are counseled by wise souls to live in the present, rarely succeed at it.
My old “Mutti” has had an extremely difficult life, and she is first and foremost a survivor. Now, finally, she seems at peace. Though it would be easy and customary to think of her as slipping into darkness as her mind changes and she moves through the so-called autumn of her life, her days do not, in fact, seem to be growing either darker or longer. Instead—and astonishingly—her world seems for the most part to be filled with a new, mellow light.
So it would be selfish and small-minded to minimize the apparent reality of the fact that she is at peace, and focus only on the challenges of this disease. She doesn’t do that, and I have stopped doing it. What I could never have imagined was what I would learn.
The fact is, once you can let go of how and what you think a person ought to be, you can see that my mother is really OK. She is simply enjoying her Alzheimer’s.