Peter had a few good days after that day in the ice cream café. We had a magical day when he awoke alert and full of energy. His speech therapy session was good, and he was still alert afterwards.
My practice was always to look for “good days” and then do something outside that would stimulate him, something that I would also enjoy. The “good days” were relative. On these days, he was alert enough to be active, but he also showed more confusion. On the days when he was able to speak and move, he believed he was in Italy and needed to get back to Germany, so could only focus on packing a suitcase and getting out of here, his true home, to return to what he believed was home.
A few days before, on another good day that also happened to be sunny and warm, I finally had an insight into what all this was about. “When you say you want to go back home, Peter, do you mean you want to go back to your old life? The life you had before the stroke?” I asked. Peter nodded. I asked, “What is it you most miss about your old life?”
“Relationships ,” was his answer.
I couldn’t give him much in that way. He was receiving occasional visitors, but the number of visits had dwindled down over the years into his recovery. It is exhausting spending time with someone who can’t converse anymore, someone whose motto used to be “would rather talk”. One of his friends told me it was even depressing, agonizing for him to visit his friend who was unable to give him the stimulating relationship he once had. So he didn’t come very often.
What I could give Peter was a nice day in Cologne. Hopefully he would recognize what he saw and accept that he was indeed home. On this day, July 18, Maciek, Peter’s live-in caregiver, took him downstairs on the Scalamobil. If anyone reading this has someone living at home who is unable to negotiate stairs, this is the thing to get. It revolutionized our lives. There were months when Peter was even able to climb stairs on his own, with help, but since the medication disaster in January, he wasn’t usually strong enough for that. But with the Scalamobil we were able to get down the 20 steps to the street level and roll to the wheelchair-friendly tram stop, board the tram and whisk over the Rhine River. “Do you see that?” I pointed. “Do you recognize that? That’s the Cologne cathedral. You see? We’re in Cologne, after all.” He nodded his head. I felt relieved. He knew where he was.
We disembarked at the cathedral/train station, where I was able to push his wheelchair all the way to the river, where we bought tickets for the Panorama Rhine boat trip, an hour-long ride up and down the river. We were very early, and hungry. It was lunch-time. “How about a Currywurst and some French fries?” Peter nodded, so off we went in search of a hot-dog stand selling hot dogs with curry sauce and French fries. We found one, and bought them, and also a diet Coke. He wasn’t supposed to drink anything without a thickening agent, but today was a good day – why not? The boat attendants showed us a spot on the boat where we could get a good view and still be able to eat and drink in peace. We shared the hot dog, French fries and Coke. Peter swallowed perfectly and didn’t cough, nor did we spill anything. He spoke during the cruise, asking me the names of buildings he used to identify for me. So I gave back to him what he had first shared with me.
He had another good day on his birthday, July 26, a gorgeous, sunny day. On Peter’s 63rd birthday, he was awake and able to eat breakfast with me out on our terrace. We ate the cake I had baked for him. He opened his presents. Then he wanted to go into the bedroom, which is now my room. I anticipated what was coming – he wanted to pack his suitcase. I was alone with him because the caregiver was in the hospital, where he had had surgery. I was nervous about this, but we went into the bedroom anyway, in the wheelchair. Peter wanted to stand, to look inside his closet. I allowed this. He reached for clothes – and fell. I somehow managed to get him back up and into the wheelchair.
He was alert one more day, again ranting about “getting back to Cologne”. And then, on August 3, he came down with a high fever. I took him to the emergency room in our local hospital. The doctor wanted to talk about his living will. Should he be resuscitated if he should stop breathing? What was this, anyway? He was only in the hospital because his fever wouldn’t go down. Surely it wasn’t coming to this!
I told the doctor we had specified in the living will that there should be no precautions if he was unable to live on his own. “I want oxygen,” Peter said clearly.
They thought he may have a gall bladder attack. “I don’t want surgery,” Peter said. They did find a blockage in his urinary tract and did a minor procedure, placing a stent in his bladder.
The fever went down, and then skyrocketed, peaking at over 105°F. Only cold packs could get the temperature down to about 100°, when it would shoot up again. On August 10, I received a phone call from his doctor.
“Your husband went into cardiac arrest this morning,” He said. I screamed.
“Please don’t panic. He is still alive. We were able to resuscitate him.”
So he had received the treatment he had asked for, after all. The doctor had ignored the living will.
“I know you had told us not to do this,” he said. “But we did this in order to save his life.”
I phoned Jon, our son living in Korea. “I think you’d better come home now,” I said. He and Dayeong were with Peter in his room in the intensive care unit the very next day.
But Peter’s brain damage was so massive, there was no way to keep him alive without life-support equipment. We had to let him go. He died, while Jon, Dayeong and I sat at his bedside, talking, praying, reading Bible passages, and thanking him for his life with us. We said our final good-byes to him on my mother’s birthday, August 15.