a room of her own

"Keep them out," Mom says to me, emphatically, when I walk in the door.

"Keep who out?" I ask Mom, unloading my carpet-bag from my right shoulder and hauling out the day's crossword puzzle for Lorna.

"You know...them" she responds, as if this is something I should know for certain, without explanation. She's waving her left hand at me, using her fingers for emphasis, conducting her own opus. This mobility makes me smile, despite Mom's serious tone.

It's week three of what I am calling Mom's "decline." Her motor functioning and motor planning seem unchanged--a struggle on good days. We still do exercises, despite the fact that therapy has ended. Lorna bats a "balloon" ball to Mom on a daily basis--Mom tries to hit the ball back or more accurately ease the ball out of her lap so that it floats gingerly over to Lorna. We also do leg and arm exercises twice a day, but none of these are as strenuous as what Mom encountered in therapy. I wonder to myself what the effect will be: will Mom lose functioning due to the absence of her therapy?

Where Mom's recent "decline" is most noticeable, however, is in her cognitive functioning. Word finding is no longer her primary issue as, instead, Mom has begun to hallucinate in earnest. At first, I thought perhaps she was tired. Andrew, Mom's day nurse, thought perhaps she had a UTI. But really, none of these can explain the fact that Mom has begun to live in a world of her own for extended periods of time. We've seen glimpses of this world, as periodically Mom has voiced her irrationality for extended periods, most pronounced right before she had her strokes. Now, during any particular visit, Mom will shift in and out of lucidity. It's no longer a question of corralling the words she needs. She has plenty of words, they just don't add up to anything that makes sense.

So when she says this to me--"keep them out"--I assume this is more of her hallucinations. Her imaginings are often long standing, like when she insists over and over again that she needs to go "home" (though she is not clear about where "home" is) or that she needs to go "upstairs" because of "people" she's afraid of or that she needs to get on a bus, right now, so "let's get going" she says. Recently, right after a perfectly lovely visit with Jennifer, Mom spent four hours insisting she's in "Sun Valley" and that she needed to leave, get on a plane, catch a bus, do something other than what she was doing. Her confusions are paralyzing. Not because I don't understand where they come from (or why she is having them) but rather because they are constant reminders that Mom and I inhabit a different world, a world that bears no relation to our shared life together. Mom is passing right before my eyes, only it's happening so slowly, so agonizingly slowly.

"Who are you talking about Mom?" I ask her again.

"Them," she repeats. And when she can't tell me anything more, I begin my remunerations--the list I provide Mom orally when she can't come up with the right word to match the person she's thinking about.

"Your nurse Andrew?"

"No."

"Your nurse's aid (I can't remember her name)?"

"No."

"Your doctor, Dr Hwong?"

"No."

"Your other nurse, Ann?"

"No."

"The 'pill lady', what we in good humor call Mom's night nurse, Cheryl, when she's dispensing medications?"

"No."

Surprisingly, Mom seems to be following each of these names as I list them. I can tell because she's making eye contact--her lids are open--and her body is parroting her language. Her neck and spine shift just a little bit more upright, straighter, in anticipation as I feed her the next name and then she slumps back into her chair, disappointed, as I miss the mark each time. None of my offerings are correct. Now I shift into the second tier list--Mom's personal connections.

"Are you talking about me, Mom?" I ask her, hoping this is not the case.

"No."

Lorna or Mulu then?"

"No."

"What about Eric or Terry?"

Then there's a silence and Mom shakes her head "yes," indicating that I've provided her with the right names.

"But they aren't here, Mom....they haven't been here all week. What do you mean--'keep them out'?"

"Don't want them here," she reiterates, but really I just can't figure it out, as Mom loves it when Eric and Terry visit. I'm glad of this.

"This is my home," she says then, in a loud voice, a very loud voice.

"But you're not home Mom," I respond, "you're at the Mirabella."

This correction produces confusion in Mom's face and body--her mouth curls into a frown, making her lower lip sag, and her hands begin to gyrate, slipping off the armrests of her chair to hang down precariously into the spokes of her wheelchair. She doesn't know where she is, has forgotten that she isn't in her house on Clyde Hill.

"Don't want them here...you know...living here."

It hits me then, what Mom is saying--it's not that she doesn't want to be visited by Eric and Terry but rather that she doesn't want to live with my brother's family. This realization is stunning.

"Why didn't you tell me, Mom?" I ask her, thinking back to all of the times I tried to confirm that living with my brother's family, in the same 3400 square feet, was what she wanted to do. I'd been slow to believe this is what she wanted at the time, finding it hard to imagine Mom would want to lose the autonomy of her own space. This is not a statement to the detriment of my brother's family, but rather the recognition of reality: that many people living together under one roof with an elderly woman and her caregiver would not be easy. It took us months to find her a new house, after the State appropriated hers, and yet each time I would ask her this question she neglected to mention her concerns. Fear? Complacency? Obligation?

Mom and I struggle arduously with our words for the next few minutes, my trying to interpret her abbreviated language and she trying to communicate as best she can. What I glean is this: it appears Mom was afraid my brother and his family would not visit her, be in her life, if she didn't allow them to move in with her when we bought her the new house in February of 2009. In her old house in Medina, Terry and her three children lived on the same property but down the driveway a bit in a separate structure. This worked out okay, as Mom still had her privacy, her home. All this changed when they moved into the Clyde Hill house together in late March.

Suddenly, it all makes sense to me--why Mom spent weeks and weeks during the early spring and summer of 2009 crying and insisting that she wanted to go "home" when in fact she was home. No one could figure this out. It's not the old house in Medina she wanted but rather a house to herself. "A room of her own," as Virginia Woolf would put this. I remember then what Lorna told me recently--about how this summer my nephews and niece were all gathered around my Mom in the living room one afternoon. My mother is saying to them, in a strident voice--"I want to go home" and they are saying back to her, attempting to placate --"you are home, Gamoo." Mom then surprises them all by growling--"Well, if I'm home then YOU ALL CAN LEAVE." All three left the room immediately, but they didn't leave her house. Lorna had chuckled when she relayed this story to me, her laughter coming from grief. Lorna is clear about what she thinks of Terry and her family, what they've "done" to Mom. For myself, I'm not sure what to make of Lorna's story, not sure how much of Mom's response reflected her thoughts and how much was her growing agitation and confusion from the Alzheimer's. But one thing seems clear, she was not comfortable with that many people occupying her home, no matter how much she loved my brother's family. You can still love four people deeply but not want to live with them.

It occurs to me then as I'm readying myself to leave Mom, reloading my bag with water, phone and camera, that maybe Mom has found herself at last--a place of her own. At the Mirabella, with all it's obvious failings in not being "home," Mom may be more at home then we think.

As I push closed the door to Mom's room with my right hip and move down the carpeted corridors of the Mirabella's second floor, the real meaning of Mom's place, her location, comes to me. Each day, Mom slips deeper into her own imaginings, her hallucinations. Without volition, she's found a "room of her own," a world only she can inhabit. No one can reach her there, not even me.

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