Play Live Radio
Next Up:
Available On Air Stations

Hospice shines in darkest hour

This is the second time I've had a close-up look at how hospice operates. Again, I am struck by how wonderful the nurses are; also, what a relief it is not to have to fend off unwanted treatments.

My family's first encounter was with my father, who died a most horrible of deaths, from Lewy Body Dementia. (Lewy Bodies are plaques on the brain, named for their discoverer).

My father, Grover C. Jones,  had been a career Navy pilot who flew Super-Constellations into hurricanes to measure wind speed and direction. After he retired he headed the aviation bureau in the state Department of Transportation and then became a consultant to various aviation groups.

In short, he was used to being in command. So it was profoundly sad to see him spend two years in a nursing home bed, unable to move except to open his mouth to eat or speak. He could eat only pureed food.

One of the many unfortunate symptoms of Lewy Body Dementia was hallucinations. He kept seeing big bugs on the wall. It was scary, especially since he couldn't move. He could only cry out.

He lived in Tallahassee, but after trying a couple of nursing homes there, his wife moved him out to Jefferson County, where the aides were country people. They were always kind and gentle when I was there, without the hard edges of city people, and Dad did as well as one could expect.

In the early months, I was happy when my visits coincided with a lucid period, but after a while, I came to think he was better off not able to recognize all that he had lost.

He had a do-not-resuscitate order that precluded a feeding tube. But it did not rule out treatment for pneumonia -- an oversight. Whenever he got pneumonia, which was frequently in his last months, the nursing home shipped him to the hospital for IV antibiotics; as soon as the pneumonia cleared, he was sent back to the nursing home.

He became a ping-pong ball. I don't know why the nursing home couldn't give him IV antibiotics; that was never quite clear. My guess was that no one wanted him to die on their turf. Later, it occurred to me that there may have been additional payment if he had just been discharged from the hospital.

In any event, his ping-ponging stopped only when he was moved to the hospice house, where he died a few days later, family at his side.  The hospice staff made the experience as painless as possible for all of us, for which I am grateful.

Now it is my stepmother's turn. Frances Hunter Jones, a remarkable woman, has survived for 16 years since the day her family doctor diagnosed her with Stage 4 ovarian cancer. She has had more surgeries and chemotherapy regimens than I can count, first at Emory University Clinics and more recently at H. Lee Moffitt Cancer Center. She rallied for a family dinner last week, but now the end seems near.

Suncoast Hospice in St. Petersburg is supplying round-the-clock nurses and my family is by her side. I don't know if we could manage without the hospice nurses. I'm glad we don't have to try.

--Health News Florida, journalism for a healthy state, is a service of WUSF Public Media. Contact Editor Carol Gentry at 727-410-3266 or



(more to come)

Carol Gentry, founder and special correspondent of Health News Florida, has four decades of experience covering health finance and policy, with an emphasis on consumer education and protection.