G is for Going

Mom is moving next week. For the past six years, she’s lived the good life at a top-of-the-line Memory Care facility where she has watched friends come and go, die and “move around the corner” into more acute care as their dementia worsens. She’s maintained a sort of equilibrium since arriving, definitely on the slow train to full on incapacity, and that’s why she has to move. She’s out of money. She spent every last dime over the past six years on care so good, so top of the line, she has thrived. For someone with Alzheimer’s she’s pretty sharp, but not sharp enough. So, she and her dog Charlie are moving to a Medicaid facility in Oregon, nearer my brother. Thank god she can take the dog. Her life centers around that dog.

This afternoon I sprung her for an hour to show her my new RV—I showed her around, sat her down, and fired up the generator right there in the Memory Care parking lot so I could make her a cup of mint tea with sugar and milk. We sat and chatted. She admired the seats. I tried to keep the conversation on things she remembered, mainly the past, the grandkids, my brother and me. Mom talked often about getting an RV and traveling around the US in the years before she was diagnosed with Alzheimer’s, but she never quite got going.

My Christmas card from Sue and Linda

While I was growing up, my parents were always going. We moved around a lot when I was a teenager. I went to four high schools. So, when I moved to Bellingham to attend college, I planted myself. I completed my four years and immediately signed up for graduate school. Then, I met a woman who wanted to have children, so we did. I stayed through divorce, and bought myself a house, and remarried and divorced again. Meanwhile, kids graduated and went to college. Got married. Moved away. I went to college. Again. Graduated. Got an office. And then, spent two years working alone in my house.

That working alone for two years did some stuff to us all, didn’t it? I noticed my house in ways I hadn’t before. Noticed its slow decay, realized all it would cost me, money/time/effort to keep it limping along into my dotage. Decided I wasn’t up for that much commitment. To a house. Plus, I looked on Zillow. It was a good time to sell.

The money certainly was nice, but I also realized that my house had served its purpose—it had held me for 23 years, through many starts and stops and ups and downs. Many lives lived in those four walls, and that’s just me. I did a lot of growing up while I lived in that house—the bulk of my adulthood, 23 of my 58 years. I loved a lot of things about my house. And many things about it truly annoyed me. It was not the place in which I wished to grow old. That place is somewhere else. I don’t know where yet. I’m on an adventure.

I’m going. Going to figure it out.

Alzheimer’s Sucks

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. 

A is for Alzheimer’s

Note: Since it is also National Poetry Writing Month (or NaPoWriMo) in addition to the 2017 A-to-Z Challenge, I will try to include a poem at the end of each blog entry. Today’s poem is a Haibun, a Japanese form in which a prose-poem precedes a haiku. 

My mother only eats off of salad plates, and she will only use a salad fork. When we run out of small plates (we only have six and she will not use the one that doesn’t match the rest, the blue one with stars, the sun, and the moon) and small forks, she tells me it is time to run the dishwasher even though it may contain only her six salad plates and her six salad forks. She does not remember that she can wash the plate and fork by hand. She eats off of small plates and she drinks only tea but her teacup goes in the dishwasher rarely. It is brown with discoloration and stains and sticky from the sugar she ladles into her tea.

Her habit of eating off of the small plates is not new. She has been in the habit of using the salad plates for a long, long time now. It comes, I believe, from years of being monitored by my father for overeating. For as long as I can remember, my father scrutinized my mother’s eating habits. When I was a kid, a teenager, I remember going out for ice cream and my dad making my mom get a diet coke while the rest of us had ice cream cones. Divorced for 16 years, she now eats ice cream right from the container. It’s as if not using a bowl means the ice cream doesn’t count, doesn’t really mean anything, will not invite supervision or scrutiny.

My mom moved in with me in September. My brother and I had been fielding reports from her friends and neighbors for several months in which they outlined her memory declines and odd behaviors. She reported seeing Sasquatch in her back yard a year ago in March. She forgot that she had ever played Farkle, a dice game that she played regularly over the past several years with friends and family. She got lost driving and forgot why she went places, her best friend told us.

I expected she would move in with me last June, but she called and refused. She didn’t want to leave her community or her friends. She had book clubs and garden club and Friends of the Library, she said. I had time last summer, time to orient her to Bellingham, time to sign her up for services, time to drive her to appointments. But she couldn’t quite marshal her resources, became overwhelmed at the monumental task of packing up her house, of sloughing off unnecessary items, of sorting through the detritus. My brother and I showed up last Mother’s Day weekend and hauled a ton of stuff to Goodwill and the dump. We divvied up her Waterford crystal and boxed up the china to be auctioned off on Ebay. I prepared her room in my house, but she didn’t come in June. She didn’t come in July or August either. And when I asked, she told me she was too tired to pack, too overwhelmed to organize the boxes.

Her friends kept calling. She shouldn’t be driving, they said. She tells the same stories over and over, they said. As if I hadn’t noticed that. Each phone call was the same as the last. Each conversation might as well have been a recording of the previous one. She couldn’t muster the energy or wherewithal to travel. She had missed Thanksgiving and Christmas the previous years. She told her friends she hadn’t been invited. She told her children she didn’t feel like traveling. I know now that she couldn’t get organized, couldn’t leave her dog, didn’t know what to do to get ready.

My mother eats off of small plates. She only will use a small fork. Her life is getting smaller. The walls are closing in. On both of us.

Haibun
My mother has become an old woman before my eyes, aging into forgetfulness and dementia, a victim now of ancient routines. She flutters toward the light, safe and trapped simultaneously, unable to escape the confines of what little remains, the walls of her cerebrum wiped smooth, scrubbed of the dust and fluff of daily nuances, the surfaces there papered only in history, teflon to what is new. She hunkers inward, shuttering her blinds, while painting on a brave façade.

Memory’s threads fray,
Ragged edges and patchwork
The mind’s makeshift quilt