Silver Linings

I have sat down to write this many times without success. Words failed me. My emotions have run the gamut of abject grief to anger to joy to relief to acceptance. There have been fatigue, laughter and tears so it has been difficult to settle on a tone for any piece I started to write.

After nearly a week of extreme illness, last Friday we hit rock bottom. All week since the onset of the urinary tract infection, Michael had only been consuming teaspoonfuls of yogurt or applesauce mixed with his medications. His consumption of liquids had dropped drastically to the point that I worried about his kidneys. He was producing very scant, dark urine and he ran a fever for five days. Intravenous fluids are impossible for Michael who rips out anything he doesn't understand. On Friday, he refused everything: water, food, medications. He fell into an unresponsive coma-like state. His breathing was an alarming mix of loud rattling and apnea. The visiting nurse declared that the end might be near so I made my calls to the family to urge immediate visits.

Perhaps he heard my telephone conversations. Perhaps it was just the darkness before the dawn. Perhaps we will never know the mysteries of life, especially end of life with Parkinson's disease. Tears were shed. Offspring made hasty arrangements to get home quickly. I wept my good-byes at my inert husband's side. At times he seemed to be communing with invisible beings who kept him amused and separated from this world. But then he awoke late in the afternoon fairly clear-eyed. He could not speak, probably from the starvation diet he had been on, but he was back temporarily. In fact he had had no medication for twenty-four hours and no food for longer but somehow was able to walk a few steps without stumbling. I was astounded.

Our four children arrived home with all of them under our roof by early Saturday afternoon. Michael by then had relapsed but once again rallied for a time in the evening, a pattern that has continued all week with varying levels of activity and anxiety. I was grateful for the opportunity to consult with the kids face-to-face about end of life issues for their father.

The most wonderful gift has been meeting our grandson for the first time. Michael instinctively reached out for this precious child one afternoon and held him to his chest, prompting stifled tears from those of us witnessing the event. On another occasion, Baby Emmett treated us to a noisy emptying of his bowels while we dined. Michael had joined us at the table in his wheelchair just in time to hear the eruption. His face broke out into a broad grin that I haven't seen in years. Scatological silliness obviously never fails to entertain. Incontinent himself now, Michael must have felt a kinship with his small grandson.

Michael has gone thirteen days with no more than about two hundred calories a day, if that, though he is drinking enough to sustain life. He sleeps most of the day but manages to be up and out of bed part of each day too, communing naturally but silently with us. The dogs keep him company in his room. Those of us still here tending to his needs spend our days laughing and playing with the baby. We make meals, watch television, chat and drink tea. On consultation with Michael's doctor we have all agreed to keep him at home and comfortable and avoid all hospital intervention if possible. To do otherwise would hurl Michael into a panicked state of anxiety which would require staff to strait-jacket him either physically or chemically in a foreign environment. We prefer to keep him happy and calm at home, interacting as well as he can with family, dogs and visitors.

I do not know if this is the end for Michael or, if it is, how long he might have left. But we are all in acceptance of whatever might come now and grateful for the brief moments of clarity we have been able to enjoy this week with him.

* Photograph by Claire Verney of (L-R) Anna Torontow, Michael Torontow, Emmett Seed and Laura Torontow.