Ventilator-Assisted Living©

Winter 1998, Vol. 12, No. 4

(continued)

ALS Update: Jim Ballard

Marcy Ballard, San Francisco, California

(A brief column on Jim and his mobility solutions appeared in IVUN News, Spring 1993.)

My husband Jim has been a ventilator user since May 1992. A newly-retired San Francisco teachers' union and labor leader, Jim was diagnosed with bulbar ALS at age 68. Told by the ALS experts at California Pacific Medical Center that he would need to use a ventilator at night, but could otherwise lead a perfectly normal life, Jim grasped the hope offered and was trached the next day. He remained in the ICU for three months where he suffered oxygen deprivation while enduring prolonged periods of attempts to wean him from the ventilator.

Jim was assessed for language/speech problems by Yvonne Gordon, the chief speech therapist at Barman Rehabilitation Center at St. Mary's Hospital. She confirmed my own diagnosis of expressive aphasia. His receptive language was intact, and he could understand what was said to him, but he had problems with his outgoing or expressive language. When he wrote notes to his nurses, he would call one of them whose name was Thelma, "Twinkle." He also reversed syllables and mixed up words that had similar meanings and associations. The use of a communication board or a computer was not in the cards as we projected and planned for the time when Jim could no longer talk.

For two years after the trach, Jim could talk, eat, and walk. He had full use of his hands and body. Then he had problems eating and swallowing, and a barium swallow test made it clear that he needed a feeding tube. Thelma, the LVN who had cared for another person with ALS for five years before caring for Jim, cautioned that Jim needed a G-tube. Not realizing there were differences, I settled for a J-tube. The procedure for placing the J-tube is simple and painless, but the food choices are totally limited to liquids. One cannot cut up an orange or add granola and some raisins for fiber to help improve regularity. (Our family found that unless we, the caregivers, investigated available information, we were reinventing the wheel every time there was a new decision to be made. At that time, we were unaware of IVUN.)

Jim had spent his entire adult life representing working people and concerning himself with those who could not advocate for themselves. He had served on the San Francisco Labor Council and was president of the San Francisco Teachers' Union and vice-president of the American Federation of teachers. Shortly after Jim was hospitalized, Mike Miller, a community organizer of national fame, organized the Jim Ballard Support Committee, a group of friends and business colleagues, to act as Jim's advocates. They arranged for two insurance companies to cover most of Jim's nursing care and worked on every conceivable problem with and for me.

I have come home (from my full-time job as a senior labor and employee relations analyst at the University of California-San Francisco) and found that bills had been paid by the Committee and anonymous donors. A 35-inch screen television was delivered to Jim one day, another time a masseuse appeared who had been paid to give Jim a weekly massage – for one year. The Committee and labor groups gave fundraising parties and over the last six years have been able to ensure that we did not lose our house and that I would not end up a bag lady in my old age. We live modestly, but we incurred huge bills for such items like a chair glide and a van equipped with a wheelchair lift. These have been paid by the Committee.

Eventually Jim became frozen, although he can still communicate fury or serenity through his eyes, and he lost his beautiful smile. However, without the Committee and the wonderful nurses, many of whom have been with Jim since he came home from the hospital in 1992 and are part of the family, the quality of Jim's life would be considerably different.

Many people question that Jim, frozen and totally dependent on others, would want to continue to live. There were those at the time Jim was trached who expressed their doubts and who could not understand how anyone could be tethered to a ventilator and want to live. One of our children, a philosophy major, remarked that everyone has a theoretical position on another person's time to die. It is only when the sword of death is over one's own head that we really know our position on dying. Jim has lived to see a granddaughter born. He sees his beloved daughter with whom he has always had a close and enduring relationship several times a year. Anyone who knows Jim or is around him can instantly tell his mood and desires. I will easily admit that there is a continuing sense of profound sadness to the whole situation. I will also affirm that being alive beats being dead and that Jim is relishing each moment of living. Our whole family appreciates the friendship of all these incredible people who help us to get through each difficult step. I have learned to accept and to receive, something very difficult for an independent person, and have reached a level of humility that I do not find demeaning. I find it rather uplifting spiritually, as my appreciation of the goodness of life and people has accelerated.

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