When I get to the Mirabella today I see through new eyes the freshly lacquered trim, the carefully chosen fabrics. As I walk Mom back from OT, I point out to her the wood (not vinyl) ten inch baseboards--extravagantly lovely--and the subtle grained carpet that lies under our feet instead of the usual institutional linoleum one finds in a skilled nursing facility. I stop and maneuver her chair to examine the pumpkin upholstery (a scrumptious deep umber brocade) that covers the occasional chairs in the game room. I say to her--"This is something I would have chosen, Mom"--referring to the quality of taste used in selecting the furnishings for her new "home." And I think to myself--who am I trying to convince--Mom or me? The answer's not clear.
This is not a good day for Mom--she seems to have acquired a cold, a development which causes me great alarm. Any kind of respiratory issues at this point in my mom's life are serious. When I arrive, she has a fever of 99.8; a dose of Tylenol seems to bring this down just a bit. Her voice remains rough and sore, however, and her cough persists. Becky, her PT, refers to Mom's vocalizations as her "Betty Davis voice" seeing how it's several octaves lower than Mom's normal voice. She sounds somber and more ponderous, like a Shakespearean rendition of my mom. We laugh at this, Mom getting a kick out of thinking of herself as glamorous Betty.
During OT Mom is less than focused, so much so Becky and I try to rearrange her wheelchair at the table so that she is not within eye shot of the other five residents who are receiving therapy in this same room at the same time. The noise level is deafening--even I have a difficult time focusing on Mom's progress rather than on what the other residents are doing with their balls and bicycles and walkers.
Becky tries a new task out on Mom today--scooping beans out of one bowl and sliding this scoop of beans into another bowl. For the first two times, Mom seems to understand the task and moves the measuring cup with relative ease from one bowl to the other. On her third attempt, however, Mom gets stymied, cannot seem to move her left hand (with the measuring cup) out of the bowl it is mired in. We sit there for five minutes, watching Mom's hand teeter back and forth on the brink of the bowl. Becky says encouraging things like--"Okay, now you can carry the scoop over here Dorin," trying to guide Mom's hand from the first bowl to the second. Instead, Mom's hand remains fixed at the edge of the first bowl. Frozen. Full of tone. "Are your eyes open, Mom?" I ask her, because I can't tell from where I am sitting whether she's actually looking at her left hand or not; sometimes Mom's eyes are just open a fraction, just enough to let a splinter of light in but not enough to actually see what she's doing. As Becky explains, looking at her task is crucial for Mom as it helps to make up for the fact that (due to her Alzheimer's) she has little understanding of where her limbs are spatially, meaning that she may not be aware that her left hand is resting on the side of the plastic bowl, unless she's actually looking at that hand. Mom's eyes flicker open just a fraction as I hear her say with a bit of a snap--"Yes, yes....I'm looking" when in fact she wasn't. All the while I'm wondering--how will Becky be writing about this later: "Patient unable to complete task" or "Spatial sensation significantly impaired for patent's left hand." Whatever it is, it can't be good.
When we get back to Mom's room, we are both hopelessly tired. Mom opts for the bed, lying inert, while I slump in her occasional chair. We are both beyond conversation. I ask her at one point--"What are you thinking Mom?" She says--"I don't know." And I wonder to myself--what must this be like to not know what's going through your own head?
I can't seem to muster the energy to read the newspaper to Mom (I have two stored up from earlier this week) nor can I think of a question to ask or a conversation to start. Not even the flat screen TV is on. In short, I don't have the energy to be positive and cheery nor serious and attentive. It's an accumulative thing, this exhaustion of mine--46 days of frantic worry about Mom, of rush hour driving to see Mom, of care-taking Mom's changing medical issues have taken their toll. All I can do is just be.
And it occurs to me then that this is what life must be like for Mom: having only the presence of mind to exist in this one particular moment. No energy to wonder about why this is so or what's to come next. Nothing more. Just be.
After checking with Mom's nurse, Ann, to make sure Mom's gets her next dose of Tylenol after I leave, I make my way down the wide freeway corridors of the Mirabella, Mom's new "home." There's panic in my gut, the kind that churns one's intestines till nothing but a long bout on a commode can rectify. I've begun to clench my jaw, a leftover of TMJ after an auto accident back in 1992. It's not really a jaw clenching but rather a subconscious tightening of all the small muscles in my neck and throat. I can't feel myself clenching, but I can feel the muscles painfully taunt, so taunt in fact that soon these pulled tissues will start to alter my voice, like Mom's. For several years post accident, my voice came out low and gravelly--a Betty Davis voice--and sometimes nothing came out at all.
I'm being warned, I know. Pay attention, my body scolds me, or maybe it's more of a scream. Something loud enough to get my attention. I believe in this, you see--that my body speaks, has a timber of its own, an inaudible symphony of sound only I can hear. Perhaps it's an issue of recognition--choosing to hear or not. No one likes to be warned, to be told--continue on this course and there will be consequences to bear. Sometimes we listen. Sometimes we don't.
Sometimes all we can do is just be.
Deeply, a mother's daughter
--this is alifewithmom--
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