Doug Sanders has become all too acquainted with sickness and grief, yet he knows that when it comes to doing what is best for those you love, sometimes you have to ask for help.
“I decided to call Caldwell Hospice because I thought if they were seeing her regularly they might see changes that I couldn’t,” he said of the decision to involve Caldwell Hospice and Palliative Care in the care of his 23-year-old daughter Kayla.
Born at 23 weeks and weighing just over one pound at birth, Kayla has been a fighter her entire life. Although she was not expected to live to leave the hospital at birth, her strong will prevailed. It has been a difficult journey for both her and her parents—Doug and the late Michelle Bentley Sanders. Kayla has cerebral palsy, seizures and cortical blindness. Though non-verbal, she has learned to communicate in other ways.
Kayla’s mother died three years ago while awaiting a heart/kidney transplant. Doug’s sister—Kayla’s aunt—died from breast cancer with Caldwell Hospice about a year ago, so Sanders is familiar with the help Caldwell Hospice offers. Yet, he still was not sure in the beginning if calling hospice was what he and his daughter needed at this time.
He recalls that earlier this year, Kayla just “did not seem like herself.” Acutely attuned to his daughter’s needs, Sanders was concerned something was going on with her health. Her specialist at Duke pinpointed the problem. Bloodwork revealed a kidney issue, and further testing showed her kidneys, operating at only about 12 percent, had not fully formed and were full of cysts. The doctors suggested dialysis.
Very familiar with dialysis from his wife’s experience, Sanders knew Kayla, who is very sensitive to tactile stimuli, would not be able to tolerate the procedure.
“It would be torture for her three times a week,” he said, explaining his decision to forgo the process. “Kayla has struggled with so much her whole life, and there would be no end with dialysis. She is not a candidate for a transplant. It just wasn’t worth it. I chose a better quality of life rather than quantity. I want her to enjoy her life whatever amount remains.”
Kayla’s doctor at Duke and her local primary care physician suggested Caldwell Hospice to provide extra support.
At first, Sanders notes he was hesitant because he had not seen any symptoms of kidney disease in his daughter. Her diagnosis had come through lab work. After giving it some thought, though, he decided getting hospice involved now could help him and Kayla.
“Caldwell Hospice has made me feel more comfortable by knowing that trained eyes are seeing her regularly that might see changes that I could miss,” he says.
Kayla also receives other outside skilled care and both her grandmothers are able to help. Together, they and now Caldwell Hospice form a strong support team for daughter and dad.
For now, Sanders is focused on making sure Kayla’s life is full. She enjoys watching movies with a lot of music, but mostly the ones she watched over and over with her mother. Since she is visually impaired, her mother would narrate the movies as they watched. Watching the movies now, Kayla gets excited as she hears her favorite parts coming up.
She also enjoys riding a four-wheeler that Sanders specially equipped for her to ride along. He notes she likes to go fast, and lets him know she is bored if he goes too slow.
Caldwell Hospice and Palliative Care is the only community-owned, not-for-profit hospice and palliative medicine provider serving Ashe and Watauga Counties, and one of two serving Avery County. As a community owned hospice provider, Caldwell Hospice provides resources for patients and families regardless of ability to pay. Referrals for non-hospice palliative medicine and hospice care may be made by the patients themselves, family members, friends, clergy, or physicians. For more information about Caldwell Hospice and Palliative Care call 828.754.0101 or 1.844.MY.JOURNEY, visit www.caldwellhospice.org, or follow on Facebook.