There are tipping points. Up until the tipping point, the resistance you have as a witness to this disease is amazing. My mom's executive function is pretty much shot; she's an unreliable narrator. That means, among other things, that boundaries that were firm and seemingly permanent, evaporate. Issues of privacy and respect have to be addressed. I am stepping into her space, but I do so by asking permission each step of the way.
I don't know if you've ever heard the bit by Larry David where he tells of attending some party when he was writing for SNL. David is a comic's comic. They were at the bar watching all these idiot men they knew coming in with beautiful women and bemoaning their single state. David finally yells out, "My name is O'Banyon; I need a companion!" I was listening to that with my mom and it broke us up. I said to her, that line would win me over, but I'd yell back, "My name is O'Toole and I think you're a fool!" Anyway, back to the privacy and permission...when I need to get in and help her in ways I haven't had to before, I now say, "I'm O'Banyon, your companion." It makes her laugh.
I try to stay at least a half-step ahead of whatever the coming troubles will be, in keeping an eye on my mom. I was a half-step behind for the first three years; I waited for the problem to appear and then dealt with it. That seemed practical, or at least, it was my style. It makes no sense now.
What's interesting is the way the brain breaks down in specific ways that results in odd behaviors that are mirrored, at some time, by enough people suffering from this disease that Alzheimers.org devotes pages telling you what to expect. There's also a site dedicated to the often neglected oral health of those suffering from this disease: Improving Oral Health for Patients with Alzheimer's Disease. My mom is squirreling away socks filled with coins. I've found the socks under the mattress; in pillow cases; in cabinets. She's also folding whatever is foldable; she's taken kleenex out of the box and folded each sheet, which she then stacks. These are common behaviors for those at a certain stage. I think there's an urge for order, maybe, some level of control. It's harmless.
She's very interested in time and dates. I figure it's some attempt at anchoring. I bought her a huge Timex that glows in the dark, when needed. My brother bought a digital clock with time/date/day/month/year on the face. It's about 15x6 inches -- practically a billboard! I purchased Amazon's Echo, which is voice activated for time; weather; music; and all things Amazon. My mom forgets the trigger name, Alexa, but has gotten close enough that the device responds anyway. I'm loving it. I realize the privacy
issues, but at this point in my life, it's not my priority.
I was in my forties when I sat down with my aunt and my uncle to ask them how they had found out about their brothers' deaths. My Aunt Ann, who was 16 when this had happened -- she was the one who provided all of the visual details -- remembers being in the kitchen with my grandmother when they saw the two military men walking shoulder to shoulder up the sidewalk. My mother, who was 12, was on the stairwell when she heard the scream. My Uncle Don, who was 7, remembers being in his wagon, one leg in the wagon, one leg pushing forward on the sidewalk, when he came to a halt upon hearing his mother's scream.
I wrote this poem in response to the stories they told me that day:
This would be the first time it would happen;
The second time would come in just six months.
My grandmother stood at the kitchen sink,
Cleaning up endless meals, why not endless?
There was a window, always a window,
It was wide open, wide open in June.
And they came, the ones they send to tell you --
There was a plane, some maneuvers, a crash,
No survivors, sincere apologies --
And they came, in their stiff formality,
Fully suited, one summer day in June.
She tried to shut the window, how she tried,
To keep them out, to keep him safe within.
There was a window, always a window,
It was wide open, wide open in June.
Now they were inside, inside of her home,
She tried to open the window wider,
Her knees on the sink, she was half outside,
Her flailing arms reaching up, toward the sky,
Then this: there was a scream, always this scream,
She screamed 'Jimmy' one summer day in June.
My maternal grandmother boarded a ship with her cousin, Nell, leaving Ireland to begin their lives anew in America. They were around 17, and the year was 1910, or thereabouts. The stories we hold to be true for their reasons for leaving home vary with the seasons. All of them sound reasonable and will do. My favorite is that my grandmother got in a terrible fight with her father because she frequented dances and she had fallen for a boy. My great-grandfather declared the boy to be a rounder and forbade her from going to anymore dances. She wasn't haven't it.
My grandmother could neither read, nor write. When she got to Chicago she got a job as a maid. All that I know about her time working as a maid was recounted in the ditty my mom recited to us, by way of her mom:
Yes ma'am and no ma'am
and ma'am if you please
shall I stuff the duck's arse
with the rest of the peas?
The noticeable forgetting -- the undeniable moment when it is recognized that this is actually happening -- is such an unsettling point, not for the person doing the forgetting, but for their loved ones. The resistance to that fundamental change is fierce.
That moment came for me over the phone. My parents had been living in Florida and I was in Chicago. I talked to my mom daily. I was writing a novel and she was always waiting for the next chapter. I made some comment about narrative details in the chapter I had read to her the day before. She said she couldn't wait to hear it. I told her I had already read it to her. I reread it; it was all new to her. That was my moment, the moment I knew something was wrong, and it left me gripped with fear.
By the time my dad had been diagnosed with stage IV lung cancer she'd ask every day what was wrong with him. She thought he had a bad chest cold. I had to retell her each time that he had cancer. She'd say, "I didn't know that."
There are, generally speaking, 3 stages of Alzheimer's:
My mom is in the late middle stage. We're living longer. More of us will be experiencing this with our loved ones. Here are some facts from a 2012 report:
•One in eight people age 65 and older (13 percent) has Alzheimer’s disease.
•Nearly half of people age 85 and older (45 percent) have Alzheimer’s disease.
•Of those with Alzheimer’s disease, an estimated 4 percent are under age 65, 6 percent are 65 to 74, 44 percent are 75 to 84, and 46 percent are 85 or older.
I opened this blog with a post on forgetting by César Aira. I understood him to be referencing memory as the particular tendency toward rumination; in that I agree with him. There's so much we don't know yet about the brain. Alzheimer's is different in that plaque formations gum up the works. Sludge in the system
can't be a good thing.
I think I have a good memory. That opinion is reinforced by the people in my life who tell me I have a great memory. Yet, it's my younger sister, who has Asperger's, who has an uncanny memory. When we were growing up, back in the time of phone books and address books, our family didn't need them. We all just asked my sister. She was like our Siri. We didn't think anything of it.
My sister was middle aged before she got the diagnosis of Asperger's. School was an impossible time for her. Nobody knew anything about Asperger's back then. My sister would prepare for tests by trying to memorize entire chapters of books. My parents didn't know how to help her. She was the youngest of five; my sister and I were away at college, my brothers were busy with high school sports.
I was trying to help her on one of my semester breaks and she said
the most insightful thing to me: I don't know what goes under what.
That notion of the order of things is no small deal. I watch it unraveling now with my mom. She announced she's going to bed and after some time I go in to check on her. She had pulled back the covers, put her pajamas on, and then forgot what her original intention was. She sees the bed unmade and starts to make it.
I keep things simple. My mantra: Eat when you're hungry; sleep when you're tired; let's take a walk. Every day she has vanilla ice-cream; a piece of dark chocolate; a glass of red wine.
My mom liked David Letterman. For the last six months his show was on, she rarely made it to 10:30 p.m., when he aired in Chicago. One night she told me that she had forgotten how to get to David Letterman's. She said she used to go there all the time and now she didn't remember how to get to the street where he lived.
I told her she could find him with the remote control, from the comfort of her bed. I would help her.
She was relieved.
We laugh a lot. She knows she has a problem. When she's fully aware, which is often enough, she can't believe the stories I tell her about things she's said and done. It's like there are two people: the Maggie that was always there, and the one that's slipping away.
"Generally speaking, I’d say I’m a fan of forgetting; it’s liberating, and usually errs on the side of happiness, while memory is a burden. It’s an ally of remorse, resentment, nostalgia, and other sad emotions." ~ César Aira
My mom is 86 and has Alzheimer's. It was clear to me at the time of my dad's death, six years ago, that she couldn't live on her own. I brought her back to Chicago with me; she was born here, not far from the apartment where we live right now.
I'm not sure that I agree with Aira's statement, but forgetting, nonetheless, is what we do. I have a front row seat at an accelerated version of it. Some of what I see may help someone else; it may help me.