Marj’s Will

                                                                                                                                                                    Written for the Detroit Free Press


        The note on Marjorie Bell’s door said visitors were limited. When she heard about it, she was angry. “What am I saving myself for?” she asked.

        The note came down.

        Marj was in her Ann Arbor home, her bed in the center of the living room where she held court to an endless stream of friends. She was living to die her own way — away from doctors with sympathetic eyes, but no real answers; finished with painful medical procedures that promised no cure; free of tubes, wires, and hospital beds. Surrounded by family and friends, she was determined to be a part of every conversation, hanging on to every word. She planned the details of her own funeral service, selecting the hymns as well as the caterer. Not welcoming death, just ready to take control.

        Limit visitors? You must be crazy.

        Diagnosed with colon cancer about a year ago, Bell, 69, had undergone surgery, during which doctors discovered the cancer had spread. A dose of chemotherapy – an effort to prevent further cancer – produced nearly fatal side effects.  In June, tests showed more cancer in her abdominal cavity and there was more surgery. With little assurance that it would cure her, she decided against more chemotherapy.

        In late August, Marj signed a living will, written by the Michigan Medical Self-Determination Association, based in Ann Arbor.  The document stated that she wanted no “life sustaining procedures…to prolong artificially the dying process.”  The listed procedures included surgery, cardiopulmonary resuscitation, respiratory support and “artificially administered feedings and fluids.”

         “I desire treatment limited to measures that will provide me maximum comfort and freedom from pain,” the declaration concluded.

        She also gave her daughter, Michael Vargas, 42, the authority “to make treatment decisions on my behalf in accordance with my living will declaration. I have discussed my wishes concerning terminal care with this person and I trust… her judgment on my behalf.”

        “My aim is not to ever go back in a hospital,” she said.  “That would make me the happiest.”
        Never mind that legislators and lobbyists around the state continued to debate legal recognition for such documents. Currently, Michigan is one of ten states that do not recognize so-called right-to-die declarations.  Although in most cases, physicians, family and friends respect the wishes of the terminal patient, right-to-die advocates are calling for their legal protection as well.

        But Marj had her will – written and otherwise. Like many other terminal patients around the state, she had indicated her wishes in writing, unconcerned that nothing was legally binding. Everything was binding in the only way it really mattered to her – in the hearts of her family and friends.

        In her final months, a team assembled to faithfully execute Marj’s desires: her son, Jeff, who flew in from Virginia; her daughter, Michael; her nephew, Davis Marshall; her sister, Ruth Marshall; and later, a home health aide, Ruth Lawson, to care for Marj under the guidance of Ingrid Deininger, Administrator of Individualized Home Nursing Care Inc.

        “The best gift you can give to someone is let them have the last word. You need to march along with them,” said Deininger, emphasizing the importance of allowing Marj to dictate her wishes.

        As if Marj would let them forget who was in charge anyway,

        Vargas said that her mother died the way she lived. “She was strong, stubborn, humorous, open-minded and loving.”

        Strong enough to make the difficult decision to forego further medical treatment and accept her cancer

        So stubborn that, even until her final day, she refused to become completely helpless, insisting on performing small tasks for herself, or harnessing every ounce of energy to respond to a visitor. In no way could she just lie there. Might as well be dead, she seemed to say.

        Still humorous enough to say, “death is like Zingerman’s -- a popular deli in Ann Arbor -- “ there’s so much there.” Humorous enough to say, “I’m not sick; I’m not dying,” to family and friends after a six-hour bedside vigil during which it was assumed she was near death.

        Open-minded to the end, willing to share her experience.

        So loving that she worried that her dying was harder on her family than on her. So loving that she welcomed visitors into her embrace almost to the end,

        In the final week, the care-giving team provided the round-the-clock care that the fiercely independent Marj had resisted, but needed to live with the dignity she had requested.

        They gently turned her in her bed, seeking the comfortable position for her. They struggled to interpret her demands. They provided water from a sponge to keep her mouth from drying out. They moistened her unblinking eyes with drops. They told her it was OK – OK to need them, OK to worry, OK to be angry at death, OK to be angry at life, OK to die.

        Mary quietly drew her last breath in the early morning hours of Sept. 17.

        “Well, gang it’s over” Michael said with a sigh.” It’s been a long journey.
        It was Marj’s journey all the way.