When arriving home from a hike in the woods I dreaded the flashing light on the answering machine, the death light. Back in Indiana Pop was taken to the emergency room a few times when he was having trouble breathing. A few ambulance trips later he was forced to sign himself into an assisted living facility. His friends gave me the number but I was too afraid to call--someone needed to go back east to assess the situation.
My high school chum Charley Willer, a burly saint, picked me up at the train station in Waterloo at midnight and drove me to the old house on Kensington Blvd. In the morning I drove Pop’s beat-up '78 Impala over to Village Oaks where I found him lying listlessly on the bed in his little room. Three times a day he joined the throngs of mostly old ladies down the long hallway to the dining room, a procession of walkers, wheelchairs, and veiny wrists holding onto the railing.
I visited him there for a week until I couldn't stand it any more: each day after dropping him off after a lunch or dinner out I cried as I walked down the hallway or out in the car. It was too painful--I had to take him home. I told him that he’d be leaving in a few days but first I wanted to set it up with the nurses to help deal with his pills, etc.
The day before he was set to leave I took him out for lunch in my little white rental on a rainy afternoon but when we got back to Village Oaks, or The Stables as he called it, he refused to go back in! I threatened to just leave him in the car and went in to call a taxi to take me home but it would be another hour before one arrived. I finally got him out of the car but he said he was going to wander off into the rain.
I called to an attendant to get help and very soon an ex-officio came out to persuade Pop to go back into the facility. He threatened her with lawsuits, the situation was getting out of hand, and I finally gave up and loaded him back into the car. He was quite self-satisfied and stuck to his story that he had to force me to take him home (a day early!) when it had been my plan.
He was glad to be home but there were immediate signs of trouble: the smoke alarm woke me that first morning--he had put the electric stove up to High for his morning oatmeal.
“Why did you do that?” I asked.
Then he refused to let me bring in a home nursing service to organize his pills and take his vital signs; he insisted he could sort them himself and he actually did that first time.
The next morning the smoke alarm went off again. After breakfast I gave him the “bill test” to see if he could write a cheque, address an envelope, put on a stamp, and mail it off. He actually was able to do that once though with an irregular scrawl.
I had heard good things about the hospice organization in Fort Wayne, Indiana. They told me that if a doctor gave a six month terminal date Social Security funded home-care services would kick in. We went to the oncologist who interpreted the x-rays taken at the hospital a few days earlier. He told us there were spots on the bone and the lung again and what our options were: chemotherapy and/or radiation if the pain got too severe. He outlined the various pain-killer options emphasizing that though he was a “chemo man” he didn’t recommend it in Pop’s case. He gave him six months to a year to live.
Once we had the death sentence we invited hospice into the house and the nurse and social worker told us we needed a plan for home care. At that point we were still looking housing possibilities in Garberville, Tacoma, and even considering Cleveland, his original homeland. I was naively thinking that if he stayed in Fort Wayne I could just set it up with hospice, find someone to cook, and head back west.
Hospice emphasized that Pop would eventually need very personal care and I reiterated my unwillingness to wipe--that was my bottom line. When I said that, Shirley the head nurse looked at me like I was a pathetic specimen of inadequacy but I had my limits. (Later it occurred to me that was a profound act of love.)
Pop had the choice of being upstairs or down, permanently, and we set up the death room in the dining room. That first night they set up the hospital bed downstairs he had a lot of trouble adjusting to it. He said he was too hot so I removed a blanket or two, then he said he was too cold so I put one back on. This went on for over an hour: too hot...too cold.
Finally I said, exasperated, “Well are you too hot or too cold?”
“Somewhere in between,” he said.
“Somewhere in between?” I said. “Well that's where you want to be!”
He got out of the hospital bed headed for the stairs--he wanted to go back to his bed in his room but that was forbidden. He had chosen downstairs and he had to stay there. I got on the phone to the hospice night nurse who couldn’t help me. I followed him as he lumbered up the steps, brought up the the blankets, and settled him into his bed. Later I looked in on him and found him sitting on the side of his bed with his head in his hands.
“Whats going on Pop?” I said.
He didn’t answer and I went to sleep in the next room.
In the morning I heard a terrific “Thump!” and found him on his hands and knees on the floor. He said he had slipped and fallen.
I immediately called hospice and within an hour they were all there: the nurse, the social worker, the chaplain, and even a trainee. It was time to keep him downstairs, watch him all the time, and review all the options: hospice home care, hospice facility, or nursing home.
Mission: Don’t let him fall down.
And so began the days of shadowing Pop.