Alzheimer’s disease sucks. Gawd. It sucks on so many levels, I don’t know where to begin. I guess I’ll start with a story, the story of today. My today:
I wake up at 6:20. Before I do anything else, I listen. I strain my ears toward the kitchen and concentrate. Then, wishing I could rotate my ears, catlike, I swivel my head so my ears point toward Mom’s bathroom. Silence. I breathe. I get out of bed, softly walk to the bathroom, pee, do not flush.
I pad carefully to the kitchen to start the coffee maker. I tiptoe back to my bedroom and pluck my phone from the nightstand as I quietly, so very, very quietly, crawl back into bed, phone in hand so I can check Twitter to see a) if The Dumpster resigned b) if North Korea bombed us, and c) how many followers I have. While the coffee brews, I repeat a, b, and c for Facebook, my blog, Instagram, and finally, the more traditional news sources. I check my mail, my calendar, and my messages and then I tiptoe back out to the kitchen for coffee, which has now brewed, and either a smoothie (if I remembered to make it the night before) or a banana. I grab a napkin, and I creep stealth-like back to my room. I listen. So far. So good. I eat my banana, I sip my coffee.
I continue my foray on the Interwebs: I check the local paper, the local paper’s horoscope, the local obituaries, the NYT for the latest Modern Love or Couch column. If I am feeling particularly brave, I might even watch and listen to a video without putting on my ear buds. I sip coffee and eat banana, and while I read, I wait for the coffee to work its magic. When it does, when the banana and the coffee kick in, I head back to the bathroom. I no longer try to be quiet. The jig is up, because as soon as I flush that toilet (this time I have to flush, Febreeze alone is not enough), she’ll awaken and arise. The peace, my peace, short lived as it was, will shatter, and I will not be able to reassemble it, the sharp-edged shards of my peace, until mid-to-late evening. For the next thirteen hours, I am on duty. Double duty.
I go back to my bedroom swiftly, quietly, a thief in my own damn house. I listen, not breathing, craning my ears—is she making breakfast yet? She moves fast once awakened. My running stuff is hanging in the laundry area adjacent to the kitchen, which is adjacent to Mom’s wing, which is visible via a closed set of French doors, and I might be able to get my shorts, t-shirt, toe socks, and sports bra without her seeing me, but the odds are rarely in my favor.
My home is no longer my haven. I will seek peace all day, but not here. Away. I will seek peace on my morning run at Lake Padden. I will look for quiet in my kayak after my run. I will float and read and soak in the sun for as long as I can because inevitably I will need to go home and shower and get on with my day. I have clients to see and classes to attend and questions to answer. So many fucking questions. And Mom will be waiting for me at the front door. She will hear the beep when I lock my Jeep, and she will open the front door.
“How was your day?” she asks. “Have a good run? What are your plans for the day?”
I push past her. “Good. Fine. Read the note Ma. I left you a note on the counter.” I plop my running bag, a gift from my brother, onto the bench in the entryway, kick off my shoes.
“Okay, good,” she smiles. “Mommy was just wondering.” Her voice rises an octave. She talks to me the way one talks to an infant. She totters back to her wing, behind the French doors; she will putter there while I change. I used to strip naked in front of the washing machine and then wander carefree to the shower, but now when I strip off my running clothes, I do it in my room and throw on a t-shirt and a pair of boxers so I can take my sweaty nasty clothes to the washing machine without my mother seeing me naked. Ew.
I change in less than three minutes. Mom meets me at the washing machine. “How was your day?” she asks. “How was your run? What are your plans for the day?”
“The run was good,” I say, breathing deeply through my nose. “Not too many people.” I try to smile her direction. “The jury is still out on how my day will be, though, Ma. It’s only 10:30.” I nod toward the counter at the note I left her before I went running. “I left you a note.”
“Oh,” she hangs her head and scurries back to her side of the French doors.
“Ma,” I call. “Ma, it’s ok. Don’t leave. I just . . . “ My voice trails off as she shuts the door. I can see her sit on her couch and pick up the tv remote.
My heart sinks. I suck. I should be more cheerful, nicer. But every morning it’s exactly the same. Every (mostly). Fucking. Morning. Since. September. The same questions, repeated, ten, fifteen, twenty times an hour. Every hour. All day.
I shower and get dressed. I finished my internship hours a couple of weeks ago, but I still leave the house every day as if I am still going. Coffee shops. Friends’ houses. Breweries. Whole Foods has an amazing happy hour everyday from 4-7. Three dollar pints.
Mom meets me at the front door. “You’re in Seattle today? You have to drive? Is Diane coming to pick me up for group? Is it until 1 o’clock today?”
I sigh. “Did you see the note, Ma? I’m in town at my internship. Diane knows. Yes, it’s at one. I wrote it all down for you. Have a good day.” I muster a malnourished smile as I stand at the door and wait for her to move. She stands in the doorway, unaware that she is in my way.
“Goodness,” her voice goes up an octave, and the baby talk begins again. “Mommy wouldn’t know what to do without you, Pammy Sue.”
Just a note: Hmm. I guess this is the first in a series. Possibly it’s the second in a series. Caregiving for someone with Alzheimer’s or dementia is a very strange adventure. Per my usual MO, I did not come very prepared for the ride and am learning on the fly. I’ve connected with the local Alzheimer’s Society where Mom attends groups three times a week. I am well-connected with services. That’s the easy part. The hard parts are more complex, more nuanced, more opaque. I hope to be as honest as I can here. My intentions are good. I want what is right and good for my mom, but holy shit it is really difficult to figure out what might be best at any given moment. We have entered uncharted waters, Dear Reader. Flotation devices strongly recommended. Buckle up.
Pamela Helberg 