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.
CORINNA, THANKS FOR SENDING THIS TO ME.
I CARED FOR MY FATHER FOR 3YRS, HE PASSED AWAY NOV 2010, AND WAS AN ALZHEIMER PATIENT. WE WERE ABLE TO KEEP HIM AT HOME. I WILL NEVER FORGET THE PRIV1LEDGE OF TAKING CARE OF HIM. WE LAUGHED AND HAD SOME VERY CLEAR AND INSIGHTFUL TIMES TOGETHER.
YOUR STORY IS VERY BEAUTIFUL TO ME.
How wonderful that you can communicate with your Mother, and she with you, and that you accept her as she is. That’s love.
Great article Corinna, and a realistic perspective on a sad disease. This brings a lot of ease and reminds us that if the disease isn’t all that bad for the sufferer, then we needn’t make ourselves suffer as well.
I have asked a number of serious Christians what they think God’s purpose is in Alzheimer’s. Seems like a legit question and one that should be in the province of the divine. Stuff like homelessness, Afghanistan, drug addiction, etc. seem clearly in our own province and within our power to fix or at least improve. But Alzheimer’s? What could possible be the point of Alzheimer’s? It just seems degrading, meaningless and let’s not forget, expensive. I dealt with dementia and obstreperous behavior on the part of my own old Ma. And I was like Corinna’s brother, the one nearby. I used to go over there to the “Home” and watch the Alzheimer’s afflicted come out of their dining room on their wheel chairs and into the wide hall way. It took them about 20 minutes to wheel down a 50 foot hallway. Watching them I was always remended of the Spanish Armada approaching the English shore. The were so slow and heavy and ponderous and unable to steer in a straight line for more than a few feet. All they were missing was a mast and a flag. They were not original like Corinna’s Mom, but the were musical. Their favorite song was “Frosty the Snowman.” It was the one they all knew and they’d repeat it for hours. So I always thought, are they going to make me keep living when I get like this. Probably. Falling over dead from a heart attack while shoveling the snow — that seems like winning the lottery. But how many tickets do I buy and where do I buy them? Anyway, I think it is so positive and loving that Corinna can take the view of it she does. And I don’t think she’s making up the afirmation she gets from her Mom. Sounds totally real to me. And as we get to old age ourselves we need good role models. For one thing you are watched more carefully than at any time since early childhood, so it’s really easy to screw up and making the people who care for you hate your guts. That’s bad. It’s what happened to my own old Ma.
Hello Corinna, as usual, beautiful writing, poignant and heartfelt.
Corinna, what a wonderful piece. It takes away the fear of finding a parent diminished and allows us, as you found you were able to do, to accept them with serenity and without judgement as they are now. I found it extremely moving. Thanks love.
I love the joy of this piece, and the way it makes me think differently about Alzheimers. Beautiful.