Some of the hardest decisions to make when taking care of a person who is nearing the end of life are not dire life/death decisions, such as taking him off a respirator, but simple decisions that continue to haunt you long after the person is gone.
The hardest decision I had to make when it came to the end days of my life mate/soul mate was whether to take him to the hospice care center. The nurse suggested the move to give me time to rest (he had what is called “terminal restlessness” and kept getting out of bed; considering how unsteady he was on his feet, I had to get up with him.) He wasn’t ready to go, wasn’t ready to face the ending of his life, and yet knowing the truth of the matter — that he wouldn’t be coming home again — he still agreed to go. I, on the other hand, believed the nurse when she said he would be away just a few days to give me time to rest, but still, I felt horrible about agreeing to take him. Afterward, that decision haunted me. I wished I’d let him stay home one more day, especially since I didn’t sleep anyway.
The decision I face now in taking care of my father is even less dire, but infinitely more complicated. Until about a week ago, my father still answered the phone, eager to talk to anyone who called, but now we’ve unplugged the phone in his room because he doesn’t like to be awakened.
He spends most of his time sleeping, getting up a few times a day to eat something — an egg or a bit of jello or a few canned peach slices. He is willing to talk to his children during those times, so that’s not a problem, but he doesn’t want to see anyone. He is very fragile, and so I have been honoring his wishes. However, some of my siblings want to make sure they see him one last time, and this is where the decision lies.
When is the cut-off point where his wishes become secondary and the wishes of his children come first? When it’s close to the end, I suppose, and I don’t think he’s there quite yet. Although he doesn’t eat much and has developed an aversion to most of his favorite foods, he does still have an interest in eating, which is a good sign. He’s also alert when he’s awake, so he hasn’t quite begun removing himself from life. (He has no interest in reading the newspaper anymore, but I don’t consider the newspaper “life”.)
I hope I’m doing the right thing by continuing to honor my father’s wishes, and that the decision to do so won’t come back to haunt me. I hope, if I make the wrong decision (or make a wrong assessment about how much time my father has left), my siblings will forgive me.
Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, and Daughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+