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Archive for September, 2012

Ernie’s gone

On Friday,  August 31, Ernie died. During his last three days, I was with him, joined by daughter Patti, granddaughter Melissa, and grandson Patrick.

A few months ago, as Ernie became less and less able to function, I wrote to him about Voluntary Stopping Eating and Drinking (VSED). I told him that if he got to the point where he wanted to be gone, he could decide to do this. Through conversations with his doctor, the nurse manager, and the social worker, I made sure that they would accept this decision. I also made sure that Ernie understood that he had to be able to make the decision and to communicate it to the staff. Ernie didn’t talk with me about it at that time.

In June he had a series of seizures that resulted in him going from mostly independent, taking care of himself, to being dependent on assistance at all times. With the help of the aide who was staying with him, he phoned me. I had written in a follow-up message to him, that if he decided to do VSED, I would come to be with him. He asked me why would I do that? I said I’d be there to help him, if he made that decision. That was our last conversation, in July.

After that, though he was unable to talk with me, he was still able to read my daily email messages. He made the aides stop at the reception desk as they were wheeling him to the dining room so that he could pick up my messages. He was still reading my weekly letters with pictures of my doings.

On the Sunday before he died, he had a big seizure just after breakfast. The nurse who called me said that he was aphasic and virtually non-responsive. Later I called and spoke with the aide in his room. She told me that he was refusing to eat or drink.

At  my request, the nurse manager went to see him Monday morning. By this time he had recovered enough to recognize her and to respond to her questions by blinking his eyes. She asked if he wanted to eat or drink. He indicated “no.” Did he want to see his wife? “Yes.” As soon as I got that message from the nurse, I began making travel arrangements and I got there Tuesday.

And so, no longer wanting to live, Ernie decided to die, making it possible for  me to be there with him.

He left behind every email message I had sent him over the past year, and every letter. Months ago, when he was still mostly independent, he had bought file folders to hold the messages. He’d filled two of them full and labeled them Vol. I and Vol. II, and they were in the bookcase. After that, the papers just piled up in several places–on his desk, his chest of drawers, and his night stand.

As his reading ability waned, my messages became shorter. But staff and a couple of residents told me that he read and re-read them. The receptionist told  me that she loved seeing the joy in his face when she gave him the email.

It was a long good-bye. From around 2004, Ernie’s decline, both physical and cognitive, was apparent to us both and we talked about it. In December 2006, he had his first seizure–undiagnosed at the time. After that, his decline increased. He had a few more seizures, still undiagnosed by the three neurologists who saw him over several years. Then, in July 2010 he had a  massive seizure and I was told he was dying. We were both ready. But he didn’t die. The seizures became more frequent and he became more and more cognitively and physically weakened, impaired, and struggling.

In January 2011 we moved  him to assisted living, where he was still mostly able to take care of himself and where he had no seizures until June 2012. After that, there was an aide with him 24/7, and I was in the process of having him admitted to the care center, something I dreaded.

Fortunately, Ernie died in his room in assisted living, with all his art, books, and his own furnishings around him, without having to be in the care center. And with me, Patti, Melissa, and Patrick there.

Here is the Ernie I have been missing for several years. I am so glad he is no longer struggling, and no longer missing me.

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