EXCERPT 1: HOME OR HOSPICE?
Home or hospice? Fight to live or try to accept death gracefully?
That was the choice the doctors gave my wife, Tina, as they prepared to discharge her from the Critical Care Unit (CCU) of the local hospital.
She had nearly died of an aspiration pneumonia, the result of an exacerbation of her multiple sclerosis (MS). Her one-hundred-day battle had ended in a partial victory: she was alive, but now quadriplegic, ventilator-dependent, fed through a PEG tube to her stomach. The hospital that had saved her life was now a threat, as she started to pick up infections from the other patients.
When she had been brought by the emergency crew to the hospital in late February 2004, Tina had told them she did not want invasive treatments. She was scared and disoriented. I got there within a half hour and countermanded her instructions. I had her Power of Attorney: multiple sclerosis had made her unclear of mind at times, though often she showed the intellect that had propelled her through Cornell and Harvard and onto the editorial staff of the Encyclopedia Britannica. This was a dangerous time for fuzzy thinking.
After she spent a week in an induced coma and another week or two of intensive care, we talked about whether I had been right to insist that she receive heroic efforts to save her life. She was glad I did. Tina’s choice was to live, especially for her sons, for me, for others she cared about, and for herself.
Our first nurse, Terry Bush, who spent mornings with Tina in the hospital as our watchful eye and liaison, writes (see Tributes):
"Tina was lying in a hospital bed with pneumonia. Doug spent day and night by her bedside, hoping the doctors’ predictions were incorrect. Not wanting to leave Tina alone, but needing his own rest, Doug asked if I minded changing my position as home health aide to Tina’s private assistant in her hospital room. Although this was closer to nursing than I had been wanting, I already cared too deeply for this special lady to walk away.”
“I don’t recall the medical details, but I do remember the tears in our eyes as Doug and I watched Tina’s health worsen day by day. She was not expected to live through the night several times. But God had other plans. "
Several times the doctors approached me about signing a Do Not Resuscitate (DNR) order. I refused. Tina had already been bedridden with MS for nearly a decade, and we knew that her life was valuable to herself and others, even under that condition. Her “Quality of Life” was not optimal but still precious.
While in the hospital, she won the friendship and admiration of many of her nurses, who appreciated her cheerful nature and her fighting spirit. Many years before, in other contexts, her loving father had encouraged her to “be a brave soldier,” and indeed she was. Her attitude in the CCU went from “Why me?” to “Why not me?” to “I AM going to survive.”
She’s been home for seven years since then. Through my IBM retirees’ medical benefits, we have had round-the-clock nursing, first through an agency and then from nurses we have obtained on our own. Most of our nurses have been with us for years, as Tina is a cooperative and cheerful patient, always appreciative of the care she receives. Here, "TLC" is "Tina-Loving Care." There have been some scary times, including several bouts of pneumonia, and many trips to the doctor in our special van. There have also been lovely times. We say “every day is a blessing.” Every day is Valentine’s Day.
Tina still cares about her friends, her family, her nurses, keeps up with the news, and relishes the documentary and music channels on TV. She chats on the phone, spends an hour or two out of bed in her wheelchair daily, and provides an inspiration to those who know her. She is our heroine.
Home or hospice? Home!