Thanks to the artistry of the VideoWest team–Doug Fabrizio, Elaine Clark, and videographer Josh Weathers–the national online magazine Slate is going to publish the short film series of me and my family as we live with my dementia. Click here to go directly to the video. Or see it on the front page, and then scroll down a bit.
My life with dementia
Today the editor of my forthcoming book, Paul Whitlatch of Hachette Books, sent me a link to a recent New York Times article on a woman who was diagnosed with Alzheimer’s about 4 years ago. The author, N.R. Kleinfeld–a magnificent writer, by the way–says this about Geri’s Taylor’s life now, i.e., before the disease has done excessive injury to her brain:
“Right now, she remained energized, in control of her life, the silent attack on her brain not yet in full force. But what about next week? Next month? Next year? The disease would be there then. And the year after. And forever. It has no easy parts. It nicks away at you, its progress messy and unpredictable.”
I usually take this kind of article in my stride, but today I became really depressed and despondent while reading it. While Geri Taylor is, indeed, a remarkable woman–mostly upbeat, active in a dementia support community, and otherwise strongly socially engaged, Kleinfeld’s description of symptoms that I have in common with her as well as symptoms that still await me made my usual “go” drain away and I really just wanted to go sit on the couch and stare at the shadows on the wall. I did not, of course. Instead, Peter invited me on a lovely outing on the bus to get coffee downtown. I told him of my deflation and how I felt while reading: “If dementia is already such hard work for me every hour of the day while I am not even very far along in the process, I don’t know how long I could carry on with relatively good cheer. I can quite imagine that a few years of this–of course a “this” that gets worse all the time–could make me ready to call it quits.” I assured him I was fine for now, but the future did loom today rather than just be there as a space still filled with possibilities.
With a lopsided grin, I added that the fact that the New York Times published such a lengthy article about dementia must bode well for my book when it comes out in June 2016!
Here is the article. It is very long–and may have a depressive effect on you too–but if you know someone with dementia, you need this information. If I can read it, so can you! Let me know what you think. Geri Taylor’s dementia.
Peter and I do not celebrate Mother’s Day between the two of us. “You are not my mother,” he says. For those of you who may by now wonder how I have put up with such an insensitive scoundrel for 49 years, 45 of them in marriage, I disclose that we don’t celebrate Father’s Day either. Neither do we celebrate Valentine’s Day. Basically, we don’t celebrate any of the days for which Smith’s puts up a special aisle with candy and gifts, though we have been known to stock up on chocolates when they go on sale on Halloween morning and before the orange and black display is taken down with lightning speed and replaced with red and white for Christmas. We have also been known to write each other love letters at Christmas or on the other’s birthday, usually in lieu of a present. We have also been known to write each other love letters on any random day of the year, dating back to our dating days.
In response to my most recent blog entry, in which I bewail the loss of my working memory, Peter wrote me this love letter in a reply to my post: “My dearest angel, so here you give expression to your daily frustrations that I see all the time. Your wringing of hands, your impatience with yourself and your struggle with activities every day tear at my soul. But we have so much fun together and your memory loss is a great excuse for me when I forget to tell you something: “But remember I told you yesterday that ….” Now I hear you calling for me to help you find the blog page, which you have forgotten how to access, and I am on my way.”
Yes, my insensitive scoundrel also makes jokes about my memory loss—while in the same minute interrupting his own work to jump on his white steed and rescue this damsel in distress. So here is my belated Mother’s Day letter to my beloved:
My dearest Peter,
When we celebrated Mother’s Day with our kids and their offspring at Marissa and Adam’s house yesterday, I was so touched by Kanye’s 8-year-old wisdom: when he and Aliya each read a mother’s day poem, he dedicated his “to all the mothers in my life.” He did not say it, but my mind fill in, “whether they be male or female.”
You are the mother of my every day. It is you who put up with my meandering from one task to another, gently nudging me in the direction of my goal when I go too far afield. You are the one who drop what you’re doing a dozen times a day when I yelp for help. You are the one who, as you say, constantly feel your soul being torn by my increasing bumbling of things I used to be able to do. You help me with humor and patience. While you have always had your whacky sense of humor, you have chanced your character to become patient. During our years of getting to know each other before we got married, your mother more than once told me, “Peter is not patient. He has a little temper.” A few years ago, when I started telling our kids how patient you were with me, Marissa said, “Dad is not known for his patience.” We all guffawed in agreement.
I have loved you from the moment our eyes met under the desk in the Physics lecture hall when I dropped my book and we both bent down to retrieve it. I have loved you as I discovered your impatience and your “little temper.” I love you now, though your patience makes me a little sad when I think that part of it was generated by my increasing dependence on you. The bulk of it, though, belongs to the wisdom of your years. You have always been the smartest person I know—and when I sometimes forget it, your study-full of framed patents and window-sill-full of Utah Genius plaques remind me of it. While, for some time, now—say since our son and daughter completed high school—you have acquired formidable rivals when it comes to matters intellectual, you have no rival when it comes to wisdom. You are supreme in love and loyalty and dedication and fun.
I love you incestuously, you who are my mother and father, my lover and friend, my baby. I love you to the end of the universe, the end of time. Your Gertie.
Book reviewer Terry Hong made me aware of a blog by Susan Schultz, Alzheimer’s Poetry Project, that posts poetry written by people with Alzheimers, as well as other creative pieces related to people with dementia. Here is a video–originally posted on the Alzheimer’s Poetry Project–about how call and response poetry awakens people from the deep well of advanced dementia. i carry your heart.
The Paradox of Alzheimers: How Washington Turns Abundance into Scarcity–And How Silicon Valley Can Fix That
The image accompanying this blog is a painting by Lezley Saar from an exhibition section titled “Madness in the Gaze.”
After the publication of my essay in The Georgia Review/Slate, Abigail T. Fox in mentions me as follows in Breitbart.com: “Saunders’s story is a personal tragedy and a societal calamity.A woman loses her mind at a relatively young age, and her family – and the rest of us – pay for her care.” No, the bluntness doesn’t hurt or offend me. Read in context, the quote from her article makes absolute sense: using my situation as an example, Fox supports her argument that “every news item about human health has two dimensions: a personal dimension and a societal dimension.” She continues: “That is the story of Gerda Saunders. Now here’s the story of the rest of us.”
How bad can my memory be when I’m writing this? I completed a book over the past 5 years; aced the Mini-Mental State Exam, a memory test used to see how well someone is embedded in reality; recognize and know the names of the people I love most, even though I often mix up my grandsons Kanye’s and Dante’s homonymic appellations. So what is it about my memory that stresses me, makes me anxious and sometimes depressed, and drains me of energy by noon?
Take a seat by that fly on the wall and watch how my day goes: I get up, stumble upstairs to the kitchen, switch on the kettle. My favorite coffee mug is not in the cupboard. The three-step route to the sink or dishwasher takes me past the window. The driveway is wet, the bark mulch I put down is two shades darker from the rain. Is that a green patch where I sowed the ground cover the other day? Outside the back door the quail are waiting to be fed. As I pour the seeds in the stone circle we have made to somewhat contain the mess, I get a whiff of grain. I’m hungry. Oh, yes, coffee! I go inside, look in the cupboard for my coffee mug.
Sometimes I get my coffee made by the time Peter gets out of the shower. That is, if I managed to get past the distractions: the dishwasher must be unpacked, my morning medications taken, a potplant watered. Once Peter arrives, he reboils the by-now cooled water and points me in the right direction every time I get off track. Soon the smell of coffee pervades the kitchen. We sit on the back stoep watching the quail, the ring neck doves, the Asian doves, the sparrows, the blue bird. Peter lures the squirrel onto the stoep with a nut from his pocket. While he lingers afterwards to check his iPad for mail or news, I go downstairs to shower. First, I set out my clothes. I notice an item that has to be washed. I quickly put in a load. While passing the storage room, I might as well get out more toilet paper rolls. On the craft table lie photos of the grandkids to go on the notice board. I try out different arrangements for the montage.
All this side-tracking would be fine if it weren’t for a nagging sense that I was supposed to be doing a different and more crucial task. As soon as that feeling bubbles to the top, I involuntarily do this thing with my hands while trying to remember, wringing or shaking them as I have seen people with Asperger’s do. Peter’s shout from upstairs that we have to leave for our appointment in half-an-hour solves the mystery. I hurry to the shower. Oh no, I put the towels in the wash, got to get a new one from the upstairs bathroom. And so on.
The pattern I describe is characteristic of the early stages of dementia. Suddenly you—formerly a superwoman who raised kids, had a fulltime teaching and admin job, and cooked dinner almost every night for forty-something years—have the attention span of an ant. While I was still at Gender Studies, I had senior moments at work and home: a forgotten meeting, lost keys, broccoli transformed to little black fossil trees on the stove. By the time I was diagnosed with microvascular disease, these forgettings had worsened to a point where I was no longer being able to follow my lesson plan, forgot to cook a casserole that I had made the night before for Easter brunch until we all sat down at the table, and an unmooring of my spatial orientation that caused me to get lost all the time. The last straw was when I bumped into a parked car: I voluntarily ceded my driver’s license. It was really only by my second year or retirement that an attention deficit disorder of elephantine (ha!) proportions started to bedevil my productivity and sap my emotional energy. When I am on my own—at my computer writing, for example—I can still focus as long as I stay put. As long as I don’t have to go the bathroom or get a second cup of coffee, in which case all bets are off. It seems that as soon as I go outside my own head into the realm of things and people, my thoughts lurch out of control like Plato’s chariot: “One of the horses is noble and of noble breed, but the other quite the opposite in breed and character. Therefore in our case the driving is necessarily difficult and troublesome.” (Phaedrus, 246b).
I cannot focus: not on a task, not on a conversation, sometimes not even on a beloved person.
This morning I went to breakfast with two of my BFFs, Kirstin and Susan, each of whom were only in first grade by the time I finished high school and whom I met during my belated pursuit of graduate school at the University of Utah. I was present at both their weddings, saw their children—of whom I am a godmother—when they were only hours old, and spent many cherished hours over the years with them and their families. Lately when I see them, I get into a panic because I momentarily don’t remember which of the two boys and two girls belongs to which family. For now, I still manage to rehearse the kids’ names and their familial categories before my confusion becomes evident. During breakfast this morning, I found myself lost in the conversation several times—could not remember what we were speaking about. For now, I still manage to infer the topic by listening quietly for a while. I know the day will come when I have to ask.
The memory loss I bewail is not the one we usually associate with Alzheimer’s and other dementias: I have not, so far, forgotten my name. I recognize the people I love. I remember my childhood on the farm. I still have the soft-focus memory celebrated on refrigerator magnets: “A memory is a photograph taken by the heart to make a special moment last forever.” The memory loss I bewail is of a far more ordinary kind: the ability to link one second of the day to the next in a chain that makes time comprehensible and controllable. The lack of continuity between the moments of the present leads to a sense of disconnection with my self that causes stress and anxiety. Who is this person flailing through her day?
My present me is a different me from before. I miss the me who used to be able to make things happen. The me who used to be in charge of, at the very least, my self.