This appeared in the Hillsboro Argus, a local bi-weekly newspaper, yesterday. I was interviewed several weeks ago. While a good story, I am a bit disappointed in the focus. I was supposed to have been interviewed for a story about Hospice and I think the story came out a bit too focused on us. I hope the importance of Hospice really shines through:
A family's long, arduous journey
Published: Tuesday, November 29, 2011, 9:50 AM
MANNING — Scott Adams and his family have traveled a long and difficult path since 2005.
His oldest daughter, Rebekah, was born with cerebral palsy. When she was just three, she was diagnosed with Ewing’s sarcoma, an inoperable cancer in her face and neck. She spent a year in the hospital fighting for her life. And winning. Rebekah is cancer-free.
That, however, is just the beginning of the family’s journey.
In 2007, their home in Manning burned down. They rebuilt.
Then in September 2009, Scott’s wife, Frances, was diagnosed with a genetic form of amyotrophic lateral sclerosis — Lou Gehrig’s disease.
Frances’ father, Charles Mickley, died of ALS in 1999, so Scott and Frances had a good idea of what lay ahead.
“Our motto,” after all that had already affected the family, “was ‘it’s just one more thing,’” Scott said. “After almost losing your child, it’s just one more thing.”
Genetic ALS debilitates the body quickly. After a diagnosis, Scott said, a person might have 7 to 11 months to live.
Within a year of diagnosis, Frances went on life support.
“She would have died in September 2010 without a ventilator,” Scott said. She wanted to see her daughters grow.
ALS affects the nerve cells in the brain and spinal cord, causing a loss of voluntary muscle movement and control. Bedridden, Frances had control of only her eyes. She was able to communicate her wishes through a device that allowed her to “type” with her eyes.
Scott had the help of many family members, including Frances’ younger cousin who came to live with the family and help care for the girls.
Scott had palliative care services to help with long-term care issues through the couple’s insurance company. He was able to continue his work as an adoption attorney from home.
In June of 2011, Frances decided to discontinue life support. With her death imminent, Scott decided to employ the services of Hospice and Palliative Care of Washington County.
Hospice, an independent nonprofit, started in Hillsboro in 1982 as an all-volunteer organization.
Scott said he asked himself, “Is there anything more we can do to prepare the girls?”
“There were no resources for a child who is losing a parent,” he said.
Hospice care provides a wide variety of services, both for the patients and for the patient’s family. Nurses help with pain management and a range of other medical necessities of a dying person.
Hospice counselors came to the house every day or every other day, and worked with Sarah and Rebekah through play therapy on “how to preserve the memories of mommy,” Scott said. Rainbows are now reminders to the girls of their mother.
There are also counselors who work with family members.
“Anyone who was a care provider or was important to Frances,” Scott said, “could talk with Hospice counselors.”
“They gave us control over her life and her death,” Scott said. “They were supportive of her decisions on how she wanted to end her life.”
Frances died in July. After her death, Hospice counselors continued visits with the girls. After a few months, the family transitioned to long-term grief care, with Hospice counselors pre-screening counselors outside of Hospice for the family.
“We’re doing really well,” Scott said. “Better than could ever be expected. There’s loneliness, the feeling of loss. But we were prepared for those times,” he said.
Kathy Fuller is a news reporter for the Hillsboro Argus. She can be reached at firstname.lastname@example.org.