"Home or Hospice?" Chapter 1 of TING AND I: A Memoir....

 

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 aspiration pneumonia, the result of an exacerbation of her multiple sclerosis (MS). Her hundred-day battle had ended in a partial victory: she was alive, but now quadriplegic, ventilator-dependent, fed through a tube penetrating 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, she and I 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.

A very frustrating period during her hospitalization was when Tina could not speak because she was intubated—a breathing tube had been inserted into her mouth and down her throat. She could not move much more than her eyelids. To communicate, we used a whiteboard to write a list of the most important queries we had and pointed to them sequentially, asking yes-or-no questions. If that did not work, we pointed out letters in the alphabet. One blink meant “yes.” Two blinks were “no.” Very slow going. If she was in pain, she was to make a clicking sound with her tongue. Fortunately, she could hear our reassuring words, especially, “I love you.” She had retained the sense of touch throughout her body. She could see and think. Later, she regained her speech with a tracheostomy and some training.

Our first nurse, Terry Bush, who spent mornings with Tina in the hospital as our watchful eye and liaison, writes

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; we knew that she felt her life was valuable to herself and others, even though her “quality of life” was not optimal.

During her long stay 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.”

Terry Bush continues:

After weeks of hopes and disappointments, Tina returned home, dependent on her ventilator for every breath of life. More nurses were hired, and round-the-clock care had begun. Doug was not a nurse, by license, but he was honored and respected as head nurse by all of us. Tina was very fragile when she first came home. Her needs were many –ventilator-dependent, unable to speak, tube-fed, unable to eat or drink by mouth; needing physical therapy to keep her joints pliable, causing pain no matter how gently it was done and medication being given on schedule day and night, interrupting the little sleep she was able to find amidst all the new noises and activity in her room.
While her body remained fragile, Tina’s spirit grew strong. (Her complaining consisted of a frown on her face.) She withstood the changes in her health condition with the attention she received from the nurses, each one caring for her as a friend as well as a patient.

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 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 specially equipped van. There have also been lovely times. We say “Every day is a blessing.” Every day is Valentine’s Day.

Each morning we sing together a little song, which–on a Wednesday–would go,

Happy Wednesday to you,


Happy Wednesday to you,

Happy Wednesday, dear (Doug or Tina),

Happy Wednesday to you.

And many more!

Tina still cares about her friends, her family, her nurses; she 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.

Recently, I returned to the Protestant faith of my youth. No longer an agnostic, I believe in the miracle of creation and in Christ’s resurrection and in His message. Now that Tina and I both are Christians, we believe death need not separate us. The bracelet charm I bought her for our 25th wedding anniversary reads, “Together Forever.”

Home or hospice? Home!