This might be depressing to read, but I think it will be helpful for me to write it, so read at your own risk. Some of the details of my Dad's passing are fuzzy, but some are painfully clear. And today they weigh heavily on my mind, so I'm going to write them down and hopefully stop thinking about them for a while.
Two years ago this morning, Dad had his last seizure. We didn't know it was his last seizure; it wasn't his first, though, and he had already been on Hospice for 6 months. I think my sister called to tell me about it, because she was the nursing home's contact person. When I called the nursing home later in the day to see how he was doing, they said all of his vital signs were normal and he was stable. I was supposed to be going out of town to help one sister watch the other sister's kids for the weekend, so she and her husband could go away to celebrate their anniversary. Should I come by and see him before I leave? No, he's stable, he's fine.
That's what they said, and that's what my brain heard, but my gut heard something else. My gut heard the warnings I ignored in 2002, when the attending physician at the hospital said I could go out to dinner first and come see my mother later that night because she was stable. I didn't feel right about it, but I wanted to believe him, so I chose dinner first. But by the time I got there after dinner, she had already slipped into a 20-hour coma, and all I could think about was that I should have been there to see that happening - how could they not see it coming?
So, when my gut heard those same warnings on September 10, 2010, I couldn't ignore it. I decided to just stop by and look at him myself. I worked until mid-afternoon, until I just couldn't stand it, and then I left work early to go by the nursing home. I was already packed for my weekend; if he did really look fine, I could go away with peace of mind.
When I got there, I wasn't able to see him at first, because the aides were in there changing his sheets. He had apparently started throwing up. I sat outside his room and watched them bring in 3 sets of clean sheets over the next hour. There are only two residents in that room, how many clean sheets do they need? Then the nurse went in there, and she was in there for a while. None of it felt right to me, not at all. I think I called my wife, perhaps even my sister, to let them know what was happening.
Eventually, the nurse came out to talk with me. After his seizure, he really did seem fine, but at about 4pm, just a little while before I got there, his body started shutting down. They had to change the sheets multiple times because every time they got clean sheets on the bed his body expelled more waste, one way or another, and they had to clean him up again. He had a pretty high fever, and he was working hard to breathe. You could hear him out in the hallway, now that the door was open. In the room, I could see that his whole body was involved in his struggle to breathe. The hospice worker came by for her daily visit, and together, she and the nurse told me that his death was imminent, like four or five hours away. They started him on a low dose of morphine, since labored breathing is a sign of discomfort, and something for the fever.
In my mind, I was thinking "this is it." Finally, he can go. He hardly ever spoke any more, he rarely opened his eyes, I think he had been huddled there in his mind for months, just waiting for his body to stop already. The weekend before, we had thrown a 50th wedding anniversary party for him and Mom, and his two surviving brothers came, and four of his six kids. He was more awake and alert and interactive for those two hours than he had been for weeks. I knew that I had done everything I could in the past six months to bring him all the people in his life he might want to say goodbye to, so now it would just be a matter of time. But a week?
I called my siblings to let them know what was happening. I think that at first some of them thought I was over-reacting. One brother kept saying we would wait and see what happened. I think that it's much easier to accept the reality of a parent's impending death when you are in the room watching it. The nursing home brought in a cart of snacks and beverages for the family - a service they provide during the final hours for those who are keeping vigil. Every step they took in their process of preparing for a resident's passing made me feel more certain that this was actually happening.
But he didn't die that night. The morphine helped his pain, and his fever came down a bit, and by 9 or 10 that night he was sleeping relatively peacefully. Eventually, they encouraged me to go home, saying that he would probably survive the night, but they would call the family if anything changed.
The next day, Saturday, started out with Dad looking better. His eyes were open in the morning, and he was responding to questions, saying yes or no. But he wouldn't drink or eat. We kept his mouth moist with those little sponge sticks dipped in water. I downloaded the Bible to my iPad and read to him from the Psalms, which seemed to comfort him. I think it was Saturday afternoon that Jackie came and sat with me for a while. Mom came down from her floor and sat with me for a while. MG kept vigil with me for several hours. By afternoon, he was no longer responsive to questions, and his breathing was becoming more difficult again. They increased his morphine slightly at my request. It was a long day with little change for Dad. When I left him that night, he seemed comfortable, although he was obviously slipping away, just not as quickly as the nurse had originally thought he would.
The next day, Dad had several visitors. My sisters came from Albany to say goodbye, which I think was difficult for them, but really helped me a lot. Mom spent time with them, which really helped her. That night at around 11, I called to check on him. Apparently they were not giving him his morphine as often as they could, because it was prescribed "as needed". I went over to see how he was doing, and it was clear that he was agitated and having difficulty breathing. I called Hospice to complain. I sent for the nurse manager and insisted that he receive his morphine as often as possible. They assured me this would happen. By midnight I was back home. It was a rough night's sleep. Waiting for someone to die is hard. You feel guilty if you go home, but you have to try to take care of yourself because you don't know how long it's going to take.
Installment 2 will come later