Vol. 16 •Issue 11 • Page 26
Family Members Show Love as They Care for Patients at Home
Nine-year-old Jacob has lived with a ventilator by his side 24 hours a day since an accident nearly claimed his life three years ago. Some people say he would be better off if it had.
One winter day, he and some of his friends were skating on an ice-covered lake. Jacob slid across thin ice and fell through into the freezing, murky water below. He was submerged for 12 minutes before a search and rescue team arrived. They saved him, but Jacob has been in a coma ever since.
During his hospital stay, doctors tried many times to get Jacob’s mother to see her son would never be the vibrant young child she knew and loved. However, his mother, Diane, could not remove her “little soldier” from life support.
After three months in the hospital and another six weeks in an acute care ventilator facility for children, Diane took Jacob home. She said she had spent enough time in the hospital that she could take care of him if she had the equipment. Today, Diane cares for her son 18 hours a day, with a caregiver coming to the home to relieve her six hours a day.
There are many families in similar situations. An unexpected event will leave them caring for a loved one at home, something made possible because of advances in technology. Today, for nearly every piece of medical equipment used in the hospital, there is a home use equivalent.
“Jacob not only has a ventilator, he has a nebulizer and oxygen as well,” said Diane. “We even have a back-up ventilator I keep in the closet and a pulse oximeter I keep on his finger to monitor his oxygen level.”
Looking at Diane, an outsider may wonder how she does it. An energetic woman, once active in her community, Diane now spends all her days with Jacob. She has found an online chat room used by other people going through the same ordeal.
“The therapists who come to see Jacob are great, but they don’t really understand how I feel,” said Diane. “I found an online community of parents, children and spouses who are all caring for a loved one at home.”
Diane’s case is not as uncommon as many people think. Furthermore, a study published by the Heinz School of Public Policy, Carnegie Mellon University, Pittsburgh, Pa., in Heart Lung (1994 July-Aug; 23(4):269-78) found despite the considerable demands placed on caregivers, home placement of their loved ones is not perceived to be a negative experience.
This, despite the fact the needs of ventilator-dependent patients, as reported by their primary family caregivers, are extensive. Patients require considerable assistance with activities of daily living, and many patients have total care requirements. In addition to the health and care of their loved ones, caregivers often find themselves responsible for numerous pieces of high-tech equipment. Diane takes care of special requirements unrelated to Jacob’s ventilatory insufficiency.
Although caregivers reportedly spend an average of 8.4 hours each day caring for their family members, the majority continue to maintain full- or part-time employment. Johanne is one of those people. She cares for her mother who had a stroke a year ago. After her mother had an extended hospital stay and a brief stay in an acute care facility, Johanne felt her mother should be in her own home.
“It was tough,” says Johanne. “I took some time off from work initially, but now I, my brothers and sisters work in shifts staying with mom.”
Johanne’s mother is ventilator-dependent. Her room contains a ventilator, pulse oximeter and feeding tubes. Oxygen tanks are tucked away in a corner.
“When I brought mom home, I was scared. I didn’t know what to think,” said Johanne. “I was afraid I would do something wrong and I would hurt her. When the guy came with all the equipment, I was about to tell him ‘take it back. I can’t do this.'”
It was a rough start for the entire family. But they cared for her at home for a full year, despite none of them having a medical background.
During that year, there was only one hospital admission. There have been no major problems with the equipment at all.
Marc Willis is a Georgia television reporter.