The secret to how we spend our last days

by Melissa Musick Nussbaum

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My oldest sister and I drove to Texas to see my mother-in-law and our two remaining aunts. One aunt, our mother's younger sister, moved from Muleshoe to Amarillo to be near her older daughter. She lives in the same assisted-living residence as my mother-in-law. The other aunt, my father's only sister, lives in Tulia as she always has, in the wing of the Swisher County Hospital now used as an assisted-living facility.

We went to see these elderly women we love. We did not expect to have such a clear sense of what is right and what is heartbreakingly wrong with their care.

The residence in Amarillo looks like an upscale hotel. The grounds are landscaped and the furnishings are bright. There are flowers and paintings. Care is taken to keep the smell of infirmity from permeating the air. The dining hall, though aimed at the tastes of those who can no longer chew or digest as they once did -- men and women who must watch sugar and sodium intake, counting each gram and swallowing pills to counteract what does make it down the gullet -- looks like a country club lounge.

My mother-in-law's apartment is on the top floor, where floor-to-ceiling windows allow her to see beyond the town to the never-ending plains, the eternal horizon. It is a beautiful view. Friends from other parts of the country say they cannot understand the use of the word "beautiful," but I tell them, "You're looking the wrong way round. What the land elsewhere offers is here in the sky. Look up."

Our Aunt Jenne lives a few floors below her. She was 90 in April. Her health is good, but her mind has grown porous: Dates and names slip through. We tell stories about Mother Curry, some I first learned from her. Jenne laughs and says, "Oh, I'm so glad you told me that story. I'd never heard it before." She is cheerful in her decline.

My mother-in-law will be 88 this month. Diabetes, hypertension and several strokes have left her frail and able to move or speak only with great effort. Sometimes the effort comes to nothing and she is left frustrated and exhausted.

My mother-in-law stays in her apartment, where caregivers round the clock test her blood sugar levels and blood pressure and heart sounds. There is a needle stick before each meal to test her blood sugar and several needle sticks throughout the day to administer the insulin her body no longer produces. A pyramid of pill bottles sits atop the kitchen counter, alongside a list of times and dosages printed out for the rotating cast of caregivers. This pill must be taken with food, but not with the foods printed below. This pill must be taken on an empty stomach. This pill must be taken before eating any food and this one hour after eating. This pill must be taken at bedtime. This pill must be taken first thing in the morning. Alongside the pills she must take is the list of foods never to be taken.

My mother-in-law gets hungry for certain foods. She wants some orange juice and is given a thimbleful. She craves chocolate and is given one of the sugar-free frauds that sit, unpicked by anyone, a wallflower at the candy dance. My husband went to see his mother and brought her a sliver of cheesecake. She asked for it, ate it with relish and was scolded later because the blood sugar stick reveals her sin. Her body has become a confessional with an LED scroll running across the outside ledge; anyone can see her transgressions displayed.

The next day we drive to Tulia to see Aunt Marge. Her residence bakes in the summer sun, the little patches of iris and zinnias drooping. There is a swing, empty in the heat. There used to be a white picket fence around the browning yard until my aunt took it out with her Cadillac one day as she was returning from playing cards with friends in town. Nothing about the place says upscale hotel or country club lounge.

Marge is 92, with her own list of failing body parts and systems. She has no feeling in her legs from the knees down, little feeling in the whole left side of her post-stroke body. She cannot stand or walk unaided. Her flesh hangs from her bones.

When we walk in the tiny, single room where she lives, Marge is watching "Murder, She Wrote" and working on her Bible study. (One seems an oddly appropriate accompaniment to the other, I tell her, and we laugh.)

The tray by her chair is covered with treats: homemade cookies and candies brought by visiting friends -- the same friends who take her to church and who will take her to the annual town picnic days after we leave -- and hospital staff. While we are there, a certified nursing assistant sticks her head in the door and drawls, "Marge, we're makin' caramel corn. Y'all want some?"

We take Marge to her old house, a few blocks away, and no one asks us where we are going or when we'll be back. No one tests Marge's blood sugar or pressure. They tell her how glad they are she has comp'ny and to have a good time. We make dinner, a chicken enchilada casserole she eats with relish. She sops up the grease with tortillas. We finish with a fresh peach cobbler, in honor of the thousands of cobblers she baked and served with a pitcher of fresh cream to pour on top of the pastry.

We talk and laugh and cry and remember. We go out to the cemetery, where the wind sculpts the brave trees our brave grandparents planted. We drive around town as my sister points out the homes of distant beaus, many of them now dead.

It's a good day, the best day of our trip. Death hangs over us all but, somehow, in a little town devoid of medical specialties or expertise, the caregivers have learned the secret. My aunt spends her last days as she chooses. She eats when she's hungry and she eats what she wants. She comes and goes as she likes. She sees her friends and family. She may cross over carrying some still-warm caramel corn.

"Y'all want some?" the aide asks, and my sister and I both say, "Yes, please."

[Melissa Musick Nussbaum is an NCR columnist who lives in Colorado Springs, Colo.]

A version of this story appeared in the Oct 25-Nov 7, 2013 print issue under the headline: The secret to how we spend our last days.

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