life on a slant

So I am wondering today what life must be like "on a slant." Everyday Mom greets her world with her neck ratcheted to the right--her ear just off her shoulder and her eyes lowered to about my waist if I am standing. So, if I want to see her eye to eye, I have to get down on my knees and slant my own head to an angle, hoping that between the both of us, our eyes might meet. Today, at OT, Mom's therapist, Johna, works to get Mom's neck less bent and her musculature aligned. Johna gently probes Mom's neck and shoulders, urging the rigid tissues to move just a fraction or two. She uses massage and heat packs and simple exercises like--look over here Dorin (as she's pointing to the window) and look over there Dorin (as she's pointing to the door)--verbal cues that ask Mom to change her neck position without actually thinking about moving her neck. It's the thinking that's the problem--how to translate a thought like "turn towards the door" into an actual movement. Automatic responses are better--like "give me a thumbs up, Dorin"--actions she can do without thinking about what she's doing.

When I place my own fingers there at the base of Mom's neck, I am surprised at how stubborn these muscles are--like there could never have been a time when they moved with ease to a more upright position. In contrast to Mom's left hand and leg which are, as Johna informs me, "flaccid" Mom's neck is rigid with "tone," a stiffening of the muscles as a result of stroke.

I can't tell how much of this Mom understands as her dementia is a moving force in her comprehension....and then there's the simple fact of having had a stroke--how one of the things lost is a sense of center-line. I remember from Mom's stoke in 2008, how she could be standing at a 45 degree angle with two therapists just barely able to support her 110 pounds and Mom is certain she is standing upright, completely. Renee, her PT, would say--"are you standing up straight Dorin" and Mom would answer "yes" every time, whether she was or not. Renee would then tell her "tummy to me, tummy to me, Dorin" the cue we devised to remind Mom that she is off balance and needed to lean forward towards Renee's torso. Mom would hear the cue, I am sure, but still not have an idea of how to do what was being asked. Now, here at the Mirabella, Mom is a long ways from Renee and Mom's 2008 stroke condition. The state of her body in 2008 seems like wellness in comparison to how she presents today.

Later in her room, after OT, Mom's back in bed with her neck supported by a stack of pillows. Her head careens back towards the headboard and her mouth drops wide open--she looks vacant, like a caricature of mental illness, when really she's just a prisoner of her body and it's whims. "I can't," she begins, "I can't...." and her voice trails off then. I am sitting on her bed, near her left arm and I lean forward because I want to hear everything she has to say, every pause and syllable, even the meaningless rasp of her breath.

Mom's breathing of late is soft, winded--a flutter of leaves...a flicker of wings. Each intake is shallow, labored, like for sure she's not strong enough to grab a hold of the air she needs. Her doctor, a very young Dr. Deborah Huang who works with the Harborview Geriatric Unit, says this is an expected result of stroke--that she's weak--but also that her hunched-over-body prevents her chest from fully expanding with air. While I take these facts on face value, I still find it painful to listen to Mom's lungs, as they mark her as ill, as less-than, as someone who hasn't long to be here with me.

"I can't," she begins again and I lean forward even farther, till my face is so close to Mom's that I can feel her breath, as slim as it is, flutter my skin. Up this close, her lips are translucent--nearly as colorless as the rest of her skin--and I can't help but thinking that they look washed out, water-logged, like one's fingers and toes look when soaked too long in a tub. There's none of the remnants of her make-up, nothing to dissuade the conclusion of age.

"Yes," I say back, encouraging her, "You can't what Mom?" But at the sound of my voice, Mom'a body jolts and her chin suddenly drops down to meet her chest. Her eyes startle open, looking at me, like my question is a nonsequitor, something that simply does not follow, when really all I am doing is trying to help her say what she seems to need to say. I touch her skin then, run my forefinger and thumb up her arm--a reassurance of sorts, reminding her I am here...she is here...and we are here together. Her skin feels unexpectedly soft, flaccid as Johna suggested, and the movement of my fingers on her skin creates a wake of wrinkles, tiny folds of flesh that press together with the weight of my thumb before easing back to their accustomed slack.

"I can't," she tries again, and this time I say nothing, just waiting for what may come.

In the silence I listen to everything else in her room. The way the sun patters her window, bringing a late summer bloom of heat to the glass, nearly 80 degrees they say. The staccato of brakes on someone's car, as tires come to an unexpected halt. The tinkle and chime of glass to silverware, as someone collects lunch dishes from Mom's neighbor's room. All ordinary events I would probably not be hearing but for Mom's struggle to marshal the words in her head.

"I can't...do...do...it...this," Mom says just then into the silence that is not quite silence. "I can't..."

And while I know instantly what she is saying--that what we are asking her to do is too hard--I can't help myself from asking for clarification--as if the reality of what Mom's said is too much to take in. "Can't do what, Mom?" I say to her, hoping her answer will not be what I know it will be. "Can't do this," she repeats only now she lifts the index finger of her right hand just a fraction and shakes it towards the contour of her torso, saying "this, as in, my body."

I begin to weep, I can't help it. Mom sees the messy drops, despite how I wipe them with the side of my hand and I wonder what these tears mean to her. What does she think of her forty-nine-year-old daughter who is grieving a death that has yet to happen? Mom is still here, but every incapacity, every diminishment of Mom's body feels like a death to me. I know then that we are now having one of those rare conversations, those times when Mom gets beyond the Pollyanna tendencies of her nature. "No, Mom," I want to say, "you are not going to walk again." Or, "No, Mom, you are not going to get yourself in and out of bed without a full assist." Or, "No, Mom, you are never going to feed yourself again." But I don't have to say any of this, because I can see just now that she knows. She already knows. How to live with this.

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