Constance Alexander: When it comes to end-of-life decisions, it’s important for patients to have control

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When my mother hit her mid-80s, she told me – in no uncertain terms – that if she was diagnosed with cancer, that was it. She did not want to live out her last days suffering through debilitating treatment.

“Enough’s enough,” she said in a determined, no-nonsense tone.

Mother never had to make that choice, but if she had, I hope my family could have been as resilient and supportive as the family of Norma Bauerschmidt, whose end of life decision-making involved a journey of nearly 13,000 miles in 32 states, with final care in hospice.

Norma was ninety, and a widow of only two days, when she was diagnosed with endometrial cancer. The doctor recommended a hysterectomy and chemotherapy, and Norma said nothing doing.

When Norma’s son Tim and his wife, Ramie Liddle, invited Norma to come live with them, she paused as she considered their offer. Tim and Ramie lived in an RV and traveled full time. Their lifestyle was almost completely alien to Norma, who’d been married to her husband for 67 years, and lived in Michigan the whole time.

Although she’d been more of a risk-taker as a young woman – she signed up to serve in the WAVES during WWII — she had never even set foot in Wisconsin, a neighboring state.

Nevertheless, it took only two minutes for Norma to respond. “I’m 90-years-old. I’m hitting the road. Let’s go have some fun,” she said. “I don’t want to spend another minute in the doctor’s office.”

Thus begins the saga “Driving Miss Norma,” co-written by Norma’s son and daughter-in-law, Tim Bauernschmidt and Ramie Liddle, published in 2017 by GALE Cengage Learning.

The other day, sixteen women gathered in the family room at the Anna Mae Owen Residential Hospice House to discuss “Driving Miss Norma” and take a tour of the facility. Co-facilitating the discussion were Sandy Linn, Calloway County Public Library’s Community Relations Coordinator; Sherri Boyd, Director of Murray’s Anna Mae Owen Residential Hospice House; and Donna Herndon, a caregiver whose husband was a recent hospice patient.

Ms. Linn started by describing those involved with hospice as “community angels,” adding, “I think the hospice house is the finest thing our community has done.”

Sherri Boyd’s overview of the hospice concept and services emphasized that hospice was designed so people could make sure the end of life was just the way they want it. “Every one of us will pass away,” she said, “but hospice puts the patient in control, so you can be as comfortable as you can for as long as you live.”

Donna Herndon’s recent experience with her husband’s illness and death spoke of the importance of being able to make choices, one of the blessings of hospice.

With Woody’s permission, Donna also made use of social media, reporting to friends and family about how each day progressed. “He was glad for social media,” she said. “When we’d ask people to pray for him, he would wake up the next morning and say, ‘Well, the prayers are working. I’m better today.’”

The discussion lasted almost two hours, and everyone had something positive to share about the impact of the book on their own end-of-life attitudes, and the role of hospice in making end-of-life plans. The importance of families having “the talk” about end-of-life wishes was a topic that sparked lively comments.

One participant, while reflecting on the illnesses and deaths of her grandparents, recalled that no one talked about the end of life. “You’re going to be all right,” was the message given. “There were so many questions I never asked,” she said.

“Now we can open up and talk. It would have lightened up my spirit if we had talked,” she went on, “but you just didn’t.”

Two tools for inspiring discussion are: The National Day of Listening, the day after Thanksgiving, which is an unofficial day where Americans are encouraged to set aside time to record stories of their families. Log on to www.npr.org.

Another resource is Five Wishes, which sparks important end-of-life discussions and provides suggestions on structuring important conversations about care in times of serious illness. It meets the legal requirement for an advance directive in 42 U.S. states and the District of Columbia. More information is available at www.agingwithdignity.org

Constance Alexander is a columnist, award-winning poet and playwright, and President of INTEXCommunications in Murray, Ky. She can be reached at Calexander9@murraystate.edu. Or visit www.constancealexander.com.

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