Our allies with resources
B.J. Sandoz brought her father through a maze of medical no-man´s
land and bureaucratic ´wonderlands´ over the last eight months.
Today he´s communicating understandably, he´s regaining the
use of his hands, even the one nearly lost to an earlier stroke, and
he can sit to attend events of interest in the assisted living section
of the nursing home where he now lives.
Everyone eight months ago accepted the medical prognosis that he could not survive except in a near vegetative state, hooked to a feeding machine, something so inhumane the medical professions cannot hide the failure of their touted powers.
After several incidents, in which it was thought that his tubes had accidentally pulled loose while he was alone, the family was forced to set aside the brave face and ask the unthinkable. With the plastic letters they had brought to help him hopefully cope somehow with hospital-like life, he struggled to point, yes or no. Thinking he might change his mind, they repeated the question for over a week, each having a turn at trying to make sure they were communicating. He did not want to live like that.
The only alternative the medical profession offered was to disconnect all support and let him die of thirst, starvation or pneumonia. It was made clear by the staff that attempting to feed him normally would eventually result in food entering his lungs causing the pneumonia, even if he managed to ingest adequate amounts to support his energy requirements, which they didn´t think was possible either.
A sense of insane gallows humor made him laugh, but the answer was the same. He did not want the feeding tube put in his stomach.
B.J. and her siblings supported him, feeling that this way he could at least enjoy the tastes of eating and the sense of caregiving for as long as he was able. Realizing that the agony of dehydration was intolerable and would quickly extinguish any chance his father had of making an attempt to survive on his own eating ability, the younger son insisted on keeping the IV attached.
The skilled-nursing section of the nursing home, where he´d been consigned by the hospital, agreed to the IV but they refused to feed B.J.´s father since their professional logic was being ignored. B.J. took on the task herself, inventing the process of caregiving and physical therapy from the information gleaned by asking questions and by studying her father´s abilities as she tried each trick.
Waiting for her to give up and expecting the attempt to fail, the nursing section balked at requests and monitored her father´s temperature for signs of pneumonia. She not only persisted, enlisting streams of visitors, she monitored the charts and attended staff conferences, observed the speech therapists and coaxed more practice. She modified his dietary plans and was vigilant for each sign of discomfort, finding ways to make his life pleasant.
Finally it became apparent that he was managing to thrive and the nursing section rescinded the order to refuse feeding but she retained control of most of the feeding and had to deal with physical therapists who shirked and insurance limits that loomed, either due to time or to the fact that he had been designated as terminal.
Eight months of daily trekking to the nursing home, careful notetaking, networking with skilled-nursing staff, and later assisted-living staff, to ensure that his dietary and physical needs were attentively met. Coaxing cooperation, enlisting help in finding alternatives to get around even health department regulations that prohibited the dietary changes he was thriving on.
B.J. still monitors his diet, the billing and the charts and she´s setting out to help others with similar nightmares to find their way through the mazes. If you or someone you know is facing a similar crisis, or if your seniors club or caregivers group would like to hear more about the odyssey B.J. and her father have been on, you can contact her at firstname.lastname@example.org for possibilities.