Last night, I told her about Dad's journey. It began on July 29th, and I know it will end in the near future. It's a journey I was hoping that Dad could forestall for many more years... but it's also a journey that I know he's been awaiting since Mom left us on December 15th, 2002. I asked Mom to give him a light to help him see the way, and to be there to welcome him.
Today, there were a few mumbled words from Dad. When I first got to the hospital, I told him that we had read his living will and that we knew what he wanted us to do. I told him that I understood his final comments. And he squeezed my hand lightly and mumbled "love you." I firmly believe that he understood what I had said to him.
A little later, we had a moment or two in which he responded to us, but the responses soon turned out to be more the repetition of familiar phrases than any sort of genuine conversation. I held up a finger in front of him and said, "Can you see my finger?" He said yes. I asked, "Am I moving my finger?" as I curled and uncurled it; he said yes. I asked "Am I moving my finger now?" as I held it steady; he said yes.
Later, as Kim and I stood on either side of the bed speaking with him, we noticed that his eyes moved in our direction as one or the other spoke. However, they did not move in response to any visual stimulus at all; there's no doubt now that Dad's not seeing us at all.
His body continues to fail him. He has lost all swallow reflex; yesterday, he took a lisynopril tablet (a very small pill) with some vanilla pudding. By last night, he could no longer swallow even that. They inserted a feeding tube through his nose, but have not done the peg tube in his abdomen. We told them that they were not to do that unless we gave them permission, and verified that they would withdraw the NG tube if we instructed them to do so, showing them his living well and its specific instructions.
I spoke with Dr. Golden in gastroenterology. Dad's bloody stool is probably symptomatic of either polyps, diverticulitis, or cancer; there's no reason to go further to find out, though, because Dad couldn't survive any sort of treatment for any of those problems. And, as Dr. Golden said, his quality of life is such that there's no reason to cause him any more discomfort.
Dad still can't sit up. He can't stand. His body has become a wretched prison for the kindest, most generous, most loving, most devoted mind I have ever known. Dad spent his entire life reaching out to help others; he was so generous that he would give away things he needed because he believed that others needed them more. Me, Susan, Kim, Johnny, Cole, Jessica... none of us would have accomplished what we have in life without Dad's support and help.
There's only one thing we can do to support him, and every family member has agreed with that. We are waiting until we speak with neurology tomorrow to verify what we already know; then we help Dad into the next step of that journey.
Keep that light on, Mom. It's dark between here and there...