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Special Concerns for Women

I am my Mother's Keeper

(continued)

I admit I haven't understood the woman, and often I haven't respected her. Loved her, yes, of course, with a strangling ambivalence, but disagreed contemptuously with some choices she made that landed me, the child, in situations I detested: boarding school, for instance. And Alabama.

Momma's basic orientation to the world seems to turn on interest, curiosity, on a willingness to appreciate the workings of things. She graduated Johnson C. Smith University in 1939 with a bachelor's of science in biology and a math minor. She has that wonderful faculty of attention which harvests an abundance of rich impressions from common and routine events. She combines the scientistís unblinking eye with a nurturer's compassion. 

The precipitous loss of such a woman's coping abilities could not be normal decline. It wasn't until 1992, however, that the Alzheimer's diagnosis was finally made, and then largely because I refused to accept general senility as a verdict. When your relatives regularly live into their nineties still in the land of the lucid, you don't give up on a spring chicken in her 70s. I was not about to let my mother go gentle into vegetable night.

***

The "why'' of my choice to stay with her is deeper than the forebrain and larger than words--and that is a wondrous statement coming from a wordsmith, especially a poet. Probing now, as at a sore tooth, I loosen a feeling, a concept: connection, and my throat aches, my eyes fill with tears. In a lifetime of severing ties and striving for a sometimes arid autonomy, this is the one relationship that commands me to endure things that are for me impossible, unbearable, or potentially obligating. Like living in the South, doing domestic dirty work myself, and opening my clamshell heart to my step-family.

I have at every point underestimated what I've let myself in for in choosing to care for a loved one with Alzheimer's disease (AD).  Remaining rational from moment to moment, day to day, takes unusual effort. The unpredictability of Momma's condition undermines my ability to order my life. I can't have expectations about her comprehension and capabilities, and it's surprising how much expectation figures in life: the sun will rise; the ground won't open up and swallow us at our next step; she pulled down her underwear when she went to the toilet this morning so she'll do the same this afternoon...I wish. I'm called on to live in the moment, as metaphysicians often advise, but that can be anxiety-producing. And, for someone like me who is used to a lot of autonomy, such interdependence and lack of control generate a fair amount of frustration and resentment.

In the current down-sized version of her existence Momma is still minutely observant. She can spot a piece of lint on the hem of my garment at 50 paces. What drives me nuts is that at the same time she will be completely unaware of her belted undergarment (adult diaper) drooping around her knees. The way AD pairs acuity with vacuity in apparently random ways can feel perfidious to the caregiver. 

Fortunately my agitation is checked and offset by Momma's intelligence, her emotional discipline, her loving disposition, and her grace. Infrequently she says, "I miss Clarissa so'' or "I miss Momma.''  Sometimes I sympathize with her, hug her and try to help her articulate her loneliness. Other times we talk about the people who are in our lives now and how fortunate we are. And sometimes I play off our shared faculty for unsentimental irony: "Remember her bad qualities and you won't miss her so much,'' I chivvied Momma recently. We both laughed and reminisced and slid past the longing. I wish I could fill in more gaps for Ma, but we've been apart much more than we were ever together; our store of shared experiences is slender.

She goes to Carver Seniors Program three days a week. It's a boon to both of us, providing her with stimulation and companionship and making me feel less guilty about not putting everything I have into keeping her going. The other seniors and the staff dote on her and I'm grateful to them for being willing to give the care she requires. Some of them know her as the teacher of their children and grandchildren. Others admire the gallantry of her struggle to remain in the world. 

They are part of the whole new world I've entered since I started caring for Momma. When I listen to the inexperienced Congressional Republicansí plans to reduce or kill these types of services with crippling cuts to social welfare agencies, I know they have no idea about the level of need in this country. At least Mom has a livable income, and she has me; still we are pressed. She needs physical therapy, for instance, but doesn't qualify under strict Medicare criteria and our budget doesn't stretch. 

Other seniors in this Third-world region of the U.S. draw their basic life support from social welfare programs. I never felt class jealousy until I was a year or two into caring for Momma and began to see how much what I can do for her is determined by how much money we have. I can't spend all day every day doing things that will enhance Momma's functioning (exercise, handcrafts, speech therapy) in addition to handling her maintenance needs and the domestic load. Why not? Because, goddamnit, I'm a person, too, not Momma's Siamese twin.

As it is every time she slips another gear--that's the way I think of it--I'm disturbed on levels I didn't know I have. Here's an example of the latest undevelopment.  Momma still knows that certain words ("shirt,'' "skirt'') refer to clothing. To be realistic about it, her understanding probably stems from being in the context of dressing or undressing; if we're sitting in the living room and I say, "Hand me the shirt, please,'' she might well touch a book and say, "This?''

Anyway, since around mid-'94 she hasn't been able to tie the name of an article of clothing to the actual garment. Except that she is able to, sometimes. 'Course those times might just be following the direction of my eyes or hand gesture, so I can't count on her pulling off her shirt on request if she's in her bathroom and I'm in her bedroom hanging up her things.

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