My mother was diagnosed with Alzheimer’s disease almost two years ago, and her cognitive functions have declined steadily ever since. The disease is relentless, incurable, and inscrutable, but—as my friend Kelly Chaston said of the nonsmoker’s lung cancer that took her life when she was only 48—her illness is not a tragedy. More than 5 million Americans over the age of 65 have Alzheimer’s, and my mother is one of the lucky few who, like Kelly, has excellent health care, financial resources, and a supportive network of family and friends to help her cope. Her situation is not tragic, but it still has pathos.
My mom was a reader and a talker. I don’t mean that she was a chatterbox, but rather than she lived in language. She read voraciously, preferring classic women novelists like Jane Austen and Barbara Pym, who were wise, witty, and wide-ranging, yet respected the limits of etiquette. She encouraged us to talk about our problems and express our feelings, and she loved to talk about and analyze interpersonal relationships. I suspect that in some ways life was for her an Austen novel, where relationships tip out of balance or fall off course, but the right dose of prose can set all things aright, especially if applied with a sense of humor.
My dad, on the other hand, is a fixer. He can fix just about anything, from a leaky faucet or a faulty wire, to the broken window panes of the dollhouse he built for me, after my two-year-old brother poked his stubby fingers through each window. My dad constructs elaborate model railroads, with tiny buildings, tunnels, and mountains; he built a dulcimer and learned to play it; and he and a friend built a steamboat, which he toots around a lake in Maine. After he retired, he learned to fix meals so well that we hardly noticed when, somewhere along the way, my mom forgot how.
As mom was able to do less, my dad did more and more: not just the cooking, but the laundry and the housecleaning and the calendar-keeping and the birthday-present giving and the Christmas letter writing and the emailing and phone calling. He can do all these things, but he can’t fix mom’s Alzheimer’s. When she wants to go home, he can’t make her understand that she is home. When she wants to call her parents, he can’t make her understand that they’ve been dead for more than 20 years. When she’s looking for Fred, he often can’t make her recognize that he is Fred. He’s wracked with frustration and grief, and yet he can hardly finds words to express his emotions: my mom always did that for him. And now my mother can hardly find the words for anything. She doesn’t read much, and speaking gets harder every day. Thoughts flutter across her consciousness, darting away before the words can form. When the words come, they often form a familiar syntax, but don’t make semantic sense.
So that’s the pathos: a fixer who can’t fix, and a literary mind deprived of language. Their 50-year marriage, a partnership that withstood job losses, illnesses, depression, deaths, parenting crises, and alcoholism, seems at last to have met its match: a disease that upsets the balance between their complementary strengths.
It’s taking a toll on me, too. I’ve inherited my mom’s love of language and my dad’s drive to fix things. Most of my life, I’ve operated under the assumption that, if I can find the right words and arrange them exactly, I can fix anything. This disease has driven me off course into a strange, new world, where words, despite their magic and power, can’t fix the problem. I can’t think or talk my way out of this one. Instead I’ve got to feel my way through it.
Your skillful use of words takes my breath away. I hope that putting your keen observations into word paintings like this one brings you some measure of comfort during this difficult time.
You cant’t fix your mom, but you are providing a powerful voice for many people suffering similar circumstances. Sharing your words will help families express their own grief and feel a little less lonely. You should post and publish this everywhere you can. If it is shared by just one other son or daughter out there who says to his friends, This is us, this is what we are going through, then you’ll have made their connections stronger and day a little brighter. What better use of a way with words?….
I am grateful for your words. It is my brilliant husband who suffers from Alzheimer’s and I am losing more of him every month.. Not every day. I will read your blog as long as you care to write it. Thank you. it is a gift.