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Constance Alexander: Wherever caregiving is necessary, support from hospice providers helps

“The day they said ‘hospice’ I called work and told them.”

At the time, Kristy did not have much information to share with her boss, just that she was committed to care for her mother until the end. Sooner rather than later was the verdict from medical experts.

Kristy’s mother, Glenda, had been ill for a few years, but one complication after another made it clear the end was near.

Initially, Kristy thought her mom would spend her last days at a long-term care facility with hospice. In the end, it was decided Glenda would do best at home, where her daughter would continue to provide care with support from hospice, and loving vigil.

Kristy did not realize that she would be doing most of the care. As she began to understand her role in the process, she was anxious about her capabilities. There would be some support from hospice – a chaplain, a social worker, and two other hospital advisors – but Kristy was the primary caregiver.

(Photo by Debi Henry Danielson)

As she reflects on those intense eleven days of caregiving, Kristy declared, despite the daunting challenges, “I’d have done it forever.”

Kristy was used to caregiving for her mother, but as Glenda’s medical condition worsened, the challenges became more complicated. With State 4 COPD and other emerging medical issues, she required more hands-on attention, 24/7.

“She couldn’t do much of anything,” Kristy explained.

Working for a local fast-food outlet, Kristy had organized her schedule around her mother’s needs. Working first shift made the most sense. Since she did not have a vehicle, she walked to work, leaving around 5 a.m. to make sure she arrived on time to start at 6. Her careful preparations ensured when her mother woke up, she would have coffee and meals to last through the morning and early afternoon.

Even before it was clear that Glenda did not have much time left, Kristy described her employer and co-workers as “amazing.” They all understood why she hung up her apron, grabbed her handbag, and headed home the instant her shift was over.

Because of the history of this mother-daughter team, even before hospice Kristy had acquired caregiving skills, including bathing mom and tending to other personal needs.

Glenda had made funeral arrangements in advance. “We talked about her ashes,” Kristy said in a matter-of-fact tone. “In the last two years, we knew her time was limited.”

Kristy’s voice did not waver throughout this interview, but her eyes occasionally filled with tears. She smiled when she explained that “Rock on” was Glenda’s mantra and “Another one bites the dust” by “Queen” was one of her favorite songs. Admitting that some might find it unconventional, Kristy included Glenda’s favorite line in her mother’s obituary.

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

“Anyone who knew her understands it. Mom didn’t want touching moments. We’d already said what we needed to say,” Kristy declared.

That level of trust between patients and caregivers is essential, according to Sherri Boyd, Director of Hospice Services at Murray-Calloway County Hospital. In the nine years, she has been in that position, she has seen changes in some aspects of hospice care but one constant element is that quality takes priority over quantity.

“In hospice, your focus changes from cure to simply looking at a person as a whole,” she said.

Sherri manages overall hospice activities, including the Anna Mae Owen Residential Hospice House. The 6-bed facility is available to hospice patients with around-the-clock nursing. Services include symptom control, 5-day respite or limited stays (according to hospice criteria), and room and board paid by the patient or family.

“I do have a waiting list for routine beds,” Sherry explained, adding that Calloway Countians take first priority.

COVID-19 has had a major impact on hospice, Sherry explained. Home visits had to be cut back to limit pandemic exposure. Another byproduct of COVID is that volunteers, another component of hospice care, have dwindled.

“For a while, we had to stop using them,” Sherry said, emphasizing the importance of limiting potential exposure to COVID.

The average stay in hospice is less than 10 days, according to Sherri Boyd. Kristy’s mom lasted at home for 11.

“It was not like on TV,” Kristy said, but she found the booklet provided by hospice provided instructions on end-of-life care and what the stages of the dying process are likely to be.

“In really rough moments, sometimes we’d be making jokes,” Kristy said. “Mom couldn’t breathe when she cried, so we resorted to humor.”

“Just breathe” was one mantra that was good advice for both mother and daughter.

Kristy rolled up her sleeve and showed her newest inscription. “I got a tattoo that says it. I tried to do that for her.”

November is National Hospice Month, a good time to consider signing up to be a hospice volunteer. The Anna Mae Owen Hospice House is located at 1959 St. Route 94 West, Murray, KY. Contact Sherri Boyd at slboyd@murrayhospital.org.

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