home

Mom and I are reading Sherman Alexie--he's a favorite of ours, mine since before I can remember and her's since 2003 when Alexie spoke his usual ironic, biting wisdom at my graduation. Usually I do the reading and both Mom and I listen. Alexie's words come at us like bullets--how they enter the skin a neat, clean piercing and then explode there among our capillaries, leaving nothing untouched, unchanged.

Of late, we are reading Alexie's "Gentrification" from his new collection of poems, Face (2009). "Let us remember the wasps/" Alexie begins, "that hibernated in the walls/ of the house next door." The beginning--"let us remember"--gives me goosebumps. Mom too, I can see her shiver under her gazillion blankets. As it turns out, Alexie's wasps both are and are not the topic of his poem. "Gentrification" is about the loss of home--about a penniless and neglected father who dies and a penniless and neglected son left behind and siblings who quickly sell the home "because it was only a home." "For months" Alexie writes, "that drunk and displaced son/appeared on our street like a ghost/Distraught, he sat in his car and wept/because nobody else had wept/enough for his father, whose ghost/took the form of ten thousand wasps."

"Gentrification" is about home, about the meanings we assign to inanimate structures and how grief becomes what binds us to these structures. "That's the lesson of this poem/" Alexie writes,"Grief is as dangerous and unpredictable/as a twenty pound nest of wasps/ Or this: houses are haunted/not by the dead. So let us pray/for the living/Let us pray for the wasps and the sons who haunt us." (Alexie's emphasis.)

I keep thinking about Alexie's conclusion--how "houses are haunted" but "not by the dead."

Mom doesn't talk about her "home" often. Back just before the stroke, there were three to four weeks where, in her Alzheimer's confusion, she kept demanding to be taken home, so such so that we had to turn to sedation (an anti-anxiety medication) as a way to deal with her weeping and screaming and near-violence with her caregivers. Dr Addison, her GP, prescribed Lorazepan, a quick acting drug which works well on the spot but only of administered before the anxiety gets too pronounced. Here at Mirabella she continues to take this drug, but not as often--maybe this is a victory? Instead, she's on 15 mg of Remeron at bedtime (helps with the incessant crying) and .5 mg of Risperdal every 12 hours (anti-depressant). When written down, these medications seem like a lot, but then again, if I was Mom, near the end of her life, trying to recover from a stroke and away from her home I imagine I would be just as depressed and anxious as her. The irony is, of course, that Mom is not a believer--she doesn't have a bit of patience for psych medications or what she terms "psycho-babble." This is one of Mom's blind spots, places she refuses to see clearly, despite being a smart, well-educated woman.

Yesterday, as I nested down into her bed, taking our usual postures--me leaning against the back rail of her bed with my feet resting by Mom's waist and Mom propped up by her pillows at the head of her bed, I ask her, "Are you cozy Mom?"

She gets this euphoric grin on her face and begins generating guttural sounds which remind of me of my dog, Beau, when he'd began to circle his chosen spot--three times at least, spinning head to tail--until he decided it was a good enough spot to nestle down for a nap. My Mom is doing a nesting dance, like Beau--she's gyrating her arms around in circles at waist-level and she's trying to accustom herself to her environment. Trying to be safe, comfortable. This is not an easy task under the circumstances.

"Almost," she answers me finally. "Almost."

"What do you need Mom?" I ask her."

More guttural noises, something like--"grrr...mmm...umm...grrr."And then this--"Just tell me about...you know...about...about."

"About what, Mom?" I ask her.

"About...you know...what you...what you...you know...did."

I'm thinking hard now, trying to figure out what she needs. What I did...what could she mean? And then it comes to me--my dinner with Kathy on Monday evening at the Trellis in Kirkland. Kathy is a long time friend of our family and a confident of my father before he died. She wants to know about this, about what Kathy and I talked about, laughed about. I'm surprised, both by the fact that she's remembered I went to dinner with Kathy and by the fact that she wants, or rather she needs to know. She's looking for something--for intimacy perhaps? She's wanting a confidence, a sense that there's something flowing between her and I beside medical decisions and therapy appointments and "how do you like your meal Mom?" In short, she wants the feeling again that we are sisters, friends, sharing secrets and experiences, even if hers are significantly limited at the present. She wants to feel home.

I am intrigued by this revelation. What is home for Mom? Where is home?

These questions have assumed significance for me of late as my brother and I are trying to discern where Mom can go once she has finished her rehabilitation at the Mirabella. "Home" has always been the goal but lately I have begin to wonder. Where is home for Mom? If I had to answer right now, I'd say home is not her house in Clyde Hill. That house is occupied by her daughter-in-law and Mom's grandchildren (two of whom are over the age of twenty). That house has never been Mom's, as ever since she moved in during the month of March her daughter-in-law and family have occupied this space. This is a complicated arrangement as Mom bought the house in February 2009 and the family live there by mutual agreement because my sister-in-law feels she doesn't have the economic resources to rent a place of her own, despite the fact that her job yielded her an income four times as much as I earn as a professor at Seattle University. Mom seems to agree, as she has with all of her children: economic independence has never been a trait nurtured by my mother. To be fair, my sister-in-law means no harm--she's just trapped by the economics of her life--a husband who is absent and contributes little towards the support of the family. Many people share this problem. Mom has supported my brother and sister-in-law for the duration of their marriage, so it's not surprising that they would expect that support to continue: this is Mom's issue perhaps even more so than it's their own. The ethical viability of this arrangement changed, however, once Mom became incapacitated by Alzheimer's and her financial resources dried up several years ago. As power of attorney, my brother and I have a new fiduciary role regarding Mom's well being. Spending Mom's money and living in her house rent-free are not designated or sanctioned activities, no matter how long Mom has funded their lifestyle. Mom is very short on funds but is not cognizant enough to understand that she is.

The reality is that her new house on Clyde Hill is not Mom's house, as it has none of the things Mom needs at present: a space where events and happenings revolve around Mom; a space where there is the quiet that Mom needs, freedom from the incessant comings and goings and needs of my brother's family; a space where there is reliable medical oversight because Mom has recurring and complex medical issues; a place where Mom can get the therapy and medical interventions she needs when she needs them and not when it's convenient. Chaos and neglect is how I would describe that household (however well intentioned) and these are not what Mom needs.

And yet, Mom must surely want to go home. Wouldn't anybody? Isn't home better than an institution like Mirabella or a "home" setting like an adult family home, two of the possibilities for Mom? The reality is, however, that Mom can't even return to the chaos of her house at present if she wanted because she is a two person assist, meaning that it takes two people to turn her, change her, lift her from bed to wheelchair and back again. For sixteen thousand dollars a month, Mom cannot pay for this level of care, care requiring two private pay caregivers. Compromises will need to be made.

I don't know how to talk to Mom about this, don't know how to tell her that "home" might not be the real estate she owns in Clyde Hill. So I wait, hoping that everything will become clear in time. It usually does.

But really what I think is this: home is not a geography, not a four walls we call our own. Home is more ephemeral--it's the things that bind us to each other. It's the son who lost his father in Alexie's poem--it's the words and the weeping, the loss and the joy that keep us aligned with those we love, whether these loved ones are breathing or ghosted. It's not the real estate we grab a hold of, not the walls that buzz with wasps.

Today was not one of Mom's best days. She slept through OT, whereas yesterday she batted yellow balls with all her might, sending them sailing across the room. Today she fell asleep with her scrapbook bowing open on her chest, where as yesterday we scoured everything from library cards and Seattle Public Library "Book Journey's for Virginia Anderson" to report cards from James Madison Junior High. On her report cards, Mom scored high in everything but "reading without lip movement or pointing when reading silently," "maintains good posture--stands and walks well," "takes care of wraps and uses them when the either the weather or room temperature requires" and "shows an interest in natural beauty and protecting useful plants and animal life." We laughed long and hard at these "deficits"--jiggling our bellies like we were watching Rowlin and Martin's "Laugh-In" when really it's just some old yellowed pamphlets, all signed, poignantly, by Mom's soon-to-be-dead mother, "Mrs. Eilert Anderson." The "reading without lip movement" got us howling particularly crazily--I mean how exactly do these qualities equate to good student performance? After this laugh, Mom even had energy to listen to Strauss and Liszt at the Oktoberfest celebration Mirabella staged late afternoon yesterday---notice the partially eaten pretzel and the toy German flag affixed to Mom's red shawl. Mom greedily ate the freshly baked pretzel (as I did) but refused the "beer"--saying it was "yuk" even though I assured her it was non-alchoholic.

Today Mom had visitors at noon and at 3:30 and by 4:00 Mom is asleep in her chair, her mouth open and lolling. There's nothing left of her but sleep. I rest with her on her bed, letting my legs curl and align themselves with the curvature of Mom's. I say nothing for at least an hour, except for when she groans or forces her face into a grimace. "Mom," I say, "are you alright?" She mumbles back to me incoherence, what I call "crazy talk"--"If I get later, I'll go...yah...I think it's enough...this is enough and then...I think it's more...and if we can get this...figure this out..." I can make no sense of this, but don't ask Mom for clarification--I'd rather she rest, even if it's an incomplete rest, a rest without REM sleep. Mom's face is not peaceful when she "sleeps." There's pain and confusion--she looks wounded, or at least this is what I see when I review her features (note the first photo of Mom).Every now and then she yawns and her eyes flutter open. I stare at her then, greedy for what I can see, as there's nothing else I'm doing here tonight but being here with Mom. No newspaper, no book, no scrapbook albums, no student papers. Just being.

I can hear rumblings in the hallway outside her door--the whirl of wheels rolling by and voices shouting partial truths like "this is too much...don't want her to be mad at me...good, good, good...push it, push it, push it." I have no idea what stories these witness, what lives they engage, what destinations they allude to.

When I do finally peel myself away from Mom's bed to retrieve some Tylenol for Mom's leg pain, I overhear Mom's nurse, Anne, conversing with a black-suited man at her station, someone sorely out of place due to both his attire and his formality. Who is this man? But it doesn't take long to discern--he's a representative from the funeral home, Bonney-Watson; one of the Mirabella patients died last night in Room HC 209 , two doors away from Mom's. I am reminded that there is more than one way to exit the Mirabella. Mom is a "lucky lady," as Lorna (Mom's caregiver) tells Mom, often but to no effect. Mom is fortunate, but I can see how this might be difficult to appreciate in Mom's present situation.

Just before dinner arrives--spare ribs with garlic mashed potatoes (something Mom will refuse to eat, yet again)--she opens her lids and says to me: "Like having everything here...here...you know...for us." She pauses then, letting me soak this in, and then finishes--"Feels like...you know...home." I smile, glad there is something I can give Mom.

Where is "home" for Mom? And how will Eric and I decide? For years he and I have struggled to resist Mom's emotional whims, her mercurial angers and reprimands, however well intended. Who can say what is best for Mom? And what if Mom doesn't agree? Can "home" be what we make it to be? Is home where Mom is, irrespective of the surroundings?

Deeply, a mother's daughter
--this is alifewithmom--