Special Concerns for Women
I am my Mother's Keeper
Alzheimers: Story of a Relationship
This essay was originally published in the July/August 1996 issue of Ms. and is reprinted with permission.
After evading marriage and children (the two were linked in my formative years), I am at age 51 in my fifth year of tending to my mother. She needs help to live with Alzheimer's disease and I am it, although interacting with people whose thoughts and actions proceed slowly makes me grind my teeth. I've often thought that had I followed my maternal family's teaching vocation, I wouldn't have lasted in remedial or special ed.
I've also often thought that life makes us go through certain tempering experiences whether we want them or not. So, I'm not being allowed out of this woman life without a profound lesson in patience that includes fulfilling the traditional female role of domestic and body servant.
In a Reader's Digest-like version of our heart-warming story, I would be the family-values heroine who gives up a high-powered New York media career and discovers the true meaning of life wiping bowel movement off her feisty 70-something mother, the spunky most unforgettable character of the month. My less genteel version of this travail casts Momma as indeed a game person playing a poor hand with determination, but I am a conflicted caregiver with one hard-learned tip to offer.
No matter how great a sacrifice it seems at the time, take out long-term care insurance on your parents or anyone else whose end game may become your responsibility. The policy should pay for nursing home care, skilled nursing services in any setting, and in-home custodial care without prior hospitalization. That last is crucial since life-extending medical treatment can keep an elderly person too well for institutionalization but not able enough to live at home unassisted.
My mother bought a policy like that just before I started managing her life. The absolute dumbest thing I'd ever done (recently, up till then) is take advantage of the grace period to cancel it. I thought it very expensive (what did I know?), and I didn't trust the door-to-door insurance salesman she bought it from (how could I know?), and I think insurance is a rip-off anyway (but what can you do?), and I couldn't see how a max of $75,000 would help us much if her condition went catastrophic (sister, can you spare a dime?) Even people who are well off financially should obtain such insurance because money spent on in-home custodial care for infirm elderly people is not tax-deductible as medical expense.
The death of my grandmother in May 1991 at age 100-1/2 occasioned the unsought return of this Yankee to the mind-stunting Bible Belt. When I left Mount Vernon, New York , for Anniston, Alabama, I intended to attend Grandma's funeral, then stay a few weeks to ease Momma through the transition from elderly caretaker of the aged to single, carefree retiree. Right. Momma was a worse-for-wear 75. By July it was clear to my subconscious that I wasn't going anywhere, so I resolved the dilemma of what I should do by breaking my ankle. I never saw the inside of my New York apartment again.
I had gotten a wake-up call about Momma's mortality in 1987. She had been hospitalized that September following what was inconclusively diagnosed as a transient ischemic attack--interruption of blood supply to the brain for reasons not apparent. I came South then, placed Grandma with a family that did elder care, and took Mom to New York with me for an open-ended vacation from her onerous responsibilities.
While she was with me I kept trying to identify what was wrong with her, because something was. She never wanted to leave the house; when we did, she asked me repeatedly where we were going and why. Suddenly she couldn't abide going into New York City (Mt. Vernon, pop. 60,000, is 35 minutes by train from mid-Manhattan). Yet she had lived in the South Bronx in the '50s and later, over several years of summers, had attended Columbia University's Teachers College in Harlem and earned a master's degree in elementary school administration.
Even in Mt. Vernon everything startled her--me, the cat, the wind, a car passing in the street outside. Early every morning I would find her standing in the bedroom packing her suitcase. ``I've got to go take care of Momma,'' she would say. I thought she was completely stressed out from doing that already--I knew her blood pressure was high--and dragged her to a well recommended internist. Like the physician-friend who referred me, the internist was professionally blasť. Hypertension? Hey, 71-year-old African American woman. Mental confusion? Happens to the best of us eventually.
What these people didn't know, what her physicians in Anniston didn't take into account, is that Amanda Catherine Dothard is an extraordinarily intelligent and well educated woman with an ironic turn of mind and a marvelous capacity for insightful love. They saw a little old Black lady with a Hepburn head tremor.
I saw the wide-eyed, cornflake-tan beauty with the hourglass figure my father fell for. And the zaftig forty-year-old whose mobile lips kept a hint of smile in a coal-heated classroom with fifty first-graders. And the tough daughter of the soil who picked cotton to supplement the Negro-teacher salaryeven less than the pittance rural systems paid White teachersso I could continue the piano lessons she started me on before I was four, and receive my own typewriter at seven, and get a private high school education.
I knew the astonishingly courageous woman who, at 45, committed herself to a rude widower with a laborer's lifestyle and seven children, Her comprehending love and stubborn refusal to allow human waste wrought better destinies for the five younger siblings than their birthright promised, and has definitely raised the aspirations and possibilities of their subsequent offspring.
Momma taught little ones for most of her career. She and small human animals seem to complete an electric circuit that mutually lights them up. If there are toddlers in our vicinity at the various eateries we frequent, I seat Mom so she can watch them. Her delight is wholehearted and her reading of their budding characters and desires uncanny. She seems to have infinite wells of patience and compassion.
This knowledge of her has come lately, now that I'm able to look at her through adult eyes. Our mother-daughter relationship was a case of arrested development. Since we've been living together, I've been surprised at the intensity of some feelings about her that date back to my adolescence, anger and resentment oozing from hidden niches of hurt and betrayal--like, when I was 16 and valedictorian, she didn't come to my high school graduation, and then six months later she remarried without my having an inkling that she was even interested in anyone.
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