nothing personal

Today I needed full body armor, something strong and resilient to keep me safe from Mom's flood of emotions. Tears, anger, joy, these were all there, but to excess. Their flow left me exhausted, nearly senseless.

We take our first excursion outside Mirabella--it's a hot hot day, over 85 degrees--and it seems like a good afternoon to take Mom for a walk, or rather a turn in her wheelchair, provided we keep to the side of the street in the shade. We grab her red "Mountain HardWear" sport coat (Mom hates to be cold), a remnant from Mom's hiking days, and head for the elevator. Getting out of Mirabella is a feat unto itself, as the hallways on the first floor are winding and circuitous. We hit three dead ends before we hear the slurp and suck of the automatic front door and then find ourselves panting in the front courtyard opening on to Fairview Avenue. "Look Mom," I say, pointing to the sculpture we can see near the entrance--it's a fantastical thing, with blue and yellow and red balls suspended in a sea of silver. "Isn't that magical," I add. Mom is staring at the cement just in front of her, so it takes few minutes before I can get her attention and then aid her neck in looking up and out from her wheelchair, up into the sky. "Yes..." she says, "pretty." We just stand (sit in the case of Mom) there for a few minutes, taking in the differences between Mom's room at Mirabella and the world outside on the street. We look across Fairview and see The Seattle Times building, the home for Mom's favorite newspaper. We look up at the trees rooted into the cement, some kind of maples, whose leaves have already started to burn with gold. I point these out for Mom, reminding her that fall is on the way, though you wouldn't know it considering how my skin has begun to bloom with sweat. I check Mom's arms and she is dry as can be--Mom's getting-older-body regulates at a different rate than mine and Mulu's.

We begin our exploration and I remind Mom how this is like our trips to New York City where we would take off each morning and walk the streets of the city in search of new restaurants and bakeries and boutiques. "The thrill of adventure," I say to her with a smile and a squeeze of her shoulder, but I can't tell if she's understood what I've said. We walk down John and soon find ourselves at the awning for "13 Coins," I restaurant I haven't been to since I was in high school--it was the ideal hang spot for attendees of the "Junior Senior Banquet" (not dance, please note, because my small, conservative private school did not believe in dancing, thought it was the "work of the devil") because of it being open 24 hours a day. We peruse the menu and I make sure there is a place for a wheelchair at one of the tables; we talk about maybe coming back, having dinner here later this week. I take the paper menu the waitress offers me and we leave then, heading for parts unknown.

As we reverse our path and head back east on John to turn north onto Minor, we see a lovely white Lutheran church (Immanuel Lutheran). It's facade of cool white stone looks so solid and rooted amidst the up-and-coming renovation of south Lake Union. I notice Mom is beginning to shake, to sob. Mulu and I stop, bending down to try and sooth whatever may be ailing Mom. We take our hands and gently rub the skin of Mom's arms, "encouraging sensation," as the OT, Johna, has suggested, although now I'm thinking with chagrin--she's got more than enough sensation as it is, be it emotional not sensory. We don't have any Kleenex, so I wipe Mom's face with the corner of my sweater, something I've tied around my waist in case the air should cool.

"I can't...." she says, just like she did the day before. But no matter how hard I try, I can't get her to say what exactly is "too hard." I'm trying to get her to tell me because I don't want to make assumptions about Mom, don't want to think that I know what's on her mind, even though I often do. It's something telepathic, what links mothers to daughters and daughters to mothers, something that travels without words--love, pain, disappointment--all written there in the air between us in a language of our own. So I know what's bothering Mom, that it's all of this--the gap between where she is now and where she needs to be before she can come home with her current caregivers, Mulu and Lorna. Mom knows this, even though it appears she doesn't understand the nuances of her situation. How can she not? Mom's eyes screw tight with her sobbing--she becomes one red fiery ball of emotion, tears flowing like lava without a cool-down in sight.

I am surprised that I find Mom's incapacity, her emotional meltdown terrifying--she's only a woman, a mother, but she's also all I have.

After a bit, Mom stops crying, mostly I suspect she's just too tired--worn herself out. I've done my best to "talk" her out of her excess of emotion--not because she isn't warranted in her sadness (because she is--I mean, who wouldn't be sad when faced with the enormity of what has happened?) but rather because these tears will exhaust her. I remind Mom that she needs to conserve her energy for her therapy and the difficult act of getting better. While I know this is true, I also wonder at why I am saying this--the pull of grief for Mom must be so strong. As always, I tell her it's okay to be sad--after all, what else is her current situation but sad? As I'm saying all of this, however, I know how futile it is: Moms rarely responds to "logic' these days. It's the Alzheimer's--it's eaten away her brain to the point where logical connections are nearly impossible for her. But somehow, I can't help myself--I feel an obligation to try and help her see the bigger picture, at least the way that my brother and I see it. All the while, however, I have a sinking sensation that, really, she's entitled to how she feels and if she wants to cry herself sick, then, who am I to say that she shouldn't?

As we wind our way east towards the freeway, away from Lake Union, The 13 Coins and the Lutheran church, we find ourselves at a fun little dining spot--"Southlake Grill." It has taken us five street crossings and ten sidewalk navigations--no easy feat. When we sit down to rest, a waiter appears and we decide to order drinks--Pelligrino for me and Diet Coke for Mom. All Mulu wants is table water. When Mom's Diet Coke comes in a nifty plastic cup shaped like an old-fashioned Coke glass, I point this out to Mom; she smiles and nods, and I hope she's understood what I've said. This is the kind of thing Mom and I would notice, back when things were different--when I wasn't married and Mom was not-ill. The small things would take out attention--extravagant, interesting details....like vintage Coke glasses or the twisted wrought iron patterning on the backs of our chairs. Now, Mom seems to take all these things on face value. Without comment. like they simply are not there or don't matter. Of the many things that grieve me about Mom's state, this is near the top of the list, as I've gone through life feeling like I had a partner in the world of aesthetics: someone who notices everything and knows instinctively what is worth worrying about, even if it seems small and insignificant to others. So, Mom and I would both appreciate the nature of the light this morning when I got up--how it mutes the early morning hours as if a thin filmy cloud was hovering over the lake when really it's just the sunlight and the quality of the air this early in the day. We would turn towards each other and smile, take in this blanket of light, words would not even be necessary. I miss this, this communion. I am lonely in my world without her.

When I order an appetizer, chicken satay, thinking Mom would like the taste of this, I find out how wrong I am. "Hot," she says, and allows the food to systematically roll back out of her mouth, irregular blobs of partially-chewed off-white chicken meat that fall like bird droppings to her napkin. "Gamoo," Mulu exclaims crossly, perhaps seeing the spit-up food as an indictment of her care-taking skills. ("Gamoo" is the name Mom's grandchildren started calling Mom years ago; since Mom's Alzheimer's I've stopped calling her this, however, not wanting the infantilization is suggests for me.)

"Not to worry," I add, "I think the peanut sauce is too spicy for Mom." Neither of us comment on the obvious--how Mom's chewing reflexes seem to be depreciating by the minute. Earlier, it'd taken us five minutes to get Mom to spit out the gum she was chewing--five minutes of coaxing and reminding that all we needed was for her to stop chewing and spit up the gum into my hand so she could eat her snack. She'd said-"Okay" at least a dozen time, but then it was as if she couldn't tell the difference between spitting and not spitting. Finally Mulu reached in and grabbed the sticky white gum out of Mom's mouth--enough is enough at some point. And then there's the question of her sucking, how using a straw has been a God-send for so long, avoiding as it does the eminent spills from drinking out of a glass. Since the stoke, however, Mom's sucking mechanisms have not been in tact--in fact, she has been unable to suck out of a straw on demand at the request of Mulu or Lorna. Her mouth just hovers there, open and yawning, as if the idea of pursing her lips and sucking through her teeth is a new and unlearnable task. I have wondered what this might mean--if this suggests that Mom is losing her ability to chew, swallow....that soon there might be a day when Mom would require the aid of a feeding tube? It's not something we want to think about. Mom's a "full code"--meaning that she wants resuscitation at all costs. Heroic efforts, is what she's requested, but this was back before Mom was ill, or at least before she was aware that she was ill with Alzheimer's. I can't help but wonder what she would want now, now that the enormity of her body's incapacities has finally come upon her.

After paying for our snack, we meander back towards the Mirabella on Pontius Street and stop to investigate a new apartment complex called "Alley 24." I'm intrigued by the artsy look of the low brick with rows of old-fashioned white paned windows...and then the plant-lined passageway that beckons the walker back to several medium-rise apartment buildings, all done in a very high modern style--beautiful wood, concrete and rusted metal. Quite deco in appearance. I point this out to Mom, and she looks like she understands but really, I think, she is not interested at all in our architectural tour of this part of the city.

On our way back, we pass by a seagull perched on the top of one of the lighting poles on John Street. When I point this out, we stop and a miracle happens--a laugh bursts forth from Mom. Something bubbling, infectious, delicious. It bursts out from between Mom's teeth and careens her neck unexpectedly upward towards the sun. Her eyes scan the top of the pole, seeing the outline of the gull incongruously paired with the organized city life below. I want to make this laugh last all the way home as we explore out way through the side streets of south Lake Union. . And, miraculously, it does.

When we get back to Mom's room, dinner is ready and so we sit down and prepare Mom to eat her "Pumpkin Ravioli with Parmigiana Sauce" as well as her sauteed zucchini and vanilla ice cream in a Dixie cup. Eating can sometime be a fraught activity for Mom these days. Sometimes she worries that Mula and I don't have enough to eat, so she tells us, insists, in fact, that she can't eat anymore and that we must eat the rest of her meal. For this reason, I've started bringing my own food to her room--small little rounds of toast with Parmesan grated on top or thin wedges of Emmentaler cheese sealed in plastic Ziploc bags, things I can eat easily, well in view of Mom, and without too much ceremony. "Look Mom," I'll say, I'm fine--I have my snack right here." Sometimes this works, sometimes it doesn't. Tonight it doesn't.

After two bites, Mom says--"No....no...more" and begins to cry again, in earnest. Mulu and I stare at her for a just minute, trying to absorb what is happening, trying to collect ourselves. When I ask Mom what is the matter, she can't say, except to say "No." After a few minutes of tears and lips pursed closed in a determined fashion (and I do wonder why, all of a sudden, she does in fact know how to keep her teeth and mouth clamped shut when earlier this afternoon the idea of sucking her lips around a straw was a novel and unknowable idea) Mom is able to say--"This is not...."

"Not what, Mom?" I ask her.

"Not what I would eat," she finishes with surprising clarity. But instead of wonder at how she has strung this sentence together, I feel annoyance, as what she has said seems like an excuse. In fact, this "Pumpkin Ravioli" is very similar to a favorite dish of Mom's from a restaurant in Bellevue we used to go to called Andiamo. While I know it's ridiculous, I can't help myself from reminding her of this. "It's not true, Mom, you love this kind of food." Of course, this does not have a good result, as she insists, even louder that--"I can't." Soon, Mom is in a full-blown emotional meltdown, similar to many other episodes in the past when the tears flow and reason has long since departed. Mulu and I just sit there, letting her cry because there seems nothing else to do. We hold her hands and we tell her everything is okay....but we also say that she must eat her food because, without her food, she won't get better from this stroke. And after all, doesn't she want to go home, isn't this what she has wanted all along? While all of this is true, we both know our words are not having much of an effect. Mulu manages to get a few more bites into her mouth but, like the satay chicken earlier this afternoon, Mom allows her jaw to slacken and her tongue to hang down. Bites of ravioli and pumpkin cascade easily from her mouth onto her bib, collecting in the ravines of her pant folds in her lap. I reach to pick each of them out of the black crepe fabric, not wanting to spoil her fancy out-on-the-town pants from E. Fisher. Mom doesn't seem to notice--neither the food nor my mercy act of collecting her half-eaten debris.

When it's clear Mom is done, Mulu offers Mom the ice cream and I watch as she eagerly accepts each spoon of "Vanilla Bean Delight" into her mouth. A scrim of white creamy residue soon collects on the rims of Mom's lips, so eager she is to swallow her dessert, one of Mom's favorites.

When I get ready to leave I tell Mom--"I need to go, Mom, but I'll be back tomorrow."

When Mom doesn't respond, I say it again--"I need to go Mom, go home and make dinner and pet my cats."

More silence.

While silence is often the case with Mom these days, something about this silence seems different; usually Mom is loving when I say goodbye. As I kiss her forehead with my lips, I whisper--"I love you Mom" but then, for some reason, feel the urge to ask her this--"Are you mad at me Mom?"

More silence and then this--"Yes," clear as day.
"Yes," she says. No question about what she's said.

"Why?" I ask her. "Why are you mad at me?"

More silence.

"Just like Terry," she adds then. Terry is my sister-in-law, and I'm struggling to imagine what I've done that is "just like Terry" since Terry and I are about as much the same as cats and dogs, and we fight about as much.

"This," she says. "This..." as if "this" would explain it all. "Leaving..." she adds.

I'm struggling hard to understand what Mom is suggesting. Even my telepathic mother-daughter "powers" have deserted me. What can she be saying? And while I am not certain, I begin to get a sense of her thinking--wondering if there is something about my leaving that feels like a desertion to her, like I am tricking her somehow by leaving her here and I get to go out into the day. I'm thinking this because Mom has mentioned this frustration before-- how she hates it when my sister-in-law says she is going to just be gone "for a minute" and really she is gone for a the rest of day. I am sympathetic to Terry on this one, however, as Mom can be demanding and downright nosy sometimes--it's difficult to get out the door. Terry and her family now live with my mom, in the new house we bought for Mom after the State of Washington bought her property in Medina for the new SR520 bridge expansion. There must be little privacy there, I know, with all of them living within feet of each other. Terry's defense is to "slip out the back, Jack," as Paul Simon would say, or not be quite up front about where she is going or how long she's going to be gone. After all, she is an adult and has no need to explain herself to my mom. But I'm surprised, nonetheless, by Mom's outburst because it's been months since Mom's been really cognoscente enough to keep track of Terry's comings and goings.

Mom's anger troubles me. It feels too familiar--yanks me back to my growing up, to my twenties, to even my thirties, where Mom would let me know, in no uncertain terms, what she thought of my life, my doings. She'd respond just like how she is now--the cold shoulder for days, weeks, the silence, the scorn and judgment. Mom can be ruthless, not something most people who handle her now would know or understand. Mom is a force to be reckoned with and both Terry and I are well aware of this.

So, I lean over and repeat softly to Mom--"I love you, Mom" and then add--"I love you even if you are mean and mad"....but then correct myself, and say "not mean, Mom, just mad," even though I do, actually, think she can be mean. Anybody can be. Why I take this back is because of the obvious situation--Mom's incapacity troubles me. When someone is in mid-stages Alzheimer's they do not have control of their mental capacities. I can't hold Mom responsible for what she says--it's not personal, I tell myself. It's just not. It's Mom and what is happening to her. And yet, inside me, I moan and cry, just not as loud as Mom. Her words "yes" and "just like Terry" cut down hard into my skin, cause a burst of my vessels and a splaying of my muscle. I am wounded beyond belief--not because of Mom's words necessarily but rather because of how they fit so easily with what I have known about my mom for so long--that she is lovely and compassionate and fascinating but that she can cut me, her daughter, like none other. How she can wound me with her silence and her judgment and her insistence that my life must to be run by her assumptions, her values.

'Nothing personal," I tell myself, as I take the elevator down to the garage. Waiting for my car to appear, I chat aimlessly with one of the attendants and find myself laughing, nearly hysterically, as I say--"but you are lucky you don't have a mother in here," pointing to upstairs to Mirabella. The attendant nods "yes," and I then feel the need to list out loud Mom's current issues--her stroke, her Alzheimer's, her failure to eat, her interminable weeping--but can't imagine why I am saying these things, why I am letting Mom's secrets leave me lips. And yes, she does think of them as --"secrets"--things that no one else has a right to say or know about her. So I let these slip from my tongue to a stranger--a young blond headed boy who probably hasn't finished college yet--and I am appalled with myself....appalled and hysterical all at once. Nothing about this is funny, not Mom, not my grief, not what just has happened in Mom's room. None of it. But I can't help myself, can't help the need to bleed, to let the pain flow blood-like from my skin, even if Mom is unwilling to see me or bind the wound.

Nothing personal.

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