We’ve had to think a lot about end of life issues over the past four years. Four years ago this week, my father died, and that same day my in-laws called out of the blue to tell us they had sold their house and were moving to Waco. My father’s death was a terrible accident. As a Type One diabetic, he suffered from dizzy spells and neuropathy (deadening of nerves in his extremities). He frequently got dizzy after standing up and would hold on to a wall for a few minutes. On the night of his accident, he was holding the wall and then suddenly blacked out, fell backwards (his knees locked because of the neuropathy) and crushed the back of his head.
His body did not die, but the neurologist said that his brain function probably ceased almost immediately. My mother, my two brothers and I had no difficulty making the decision to pull the respiration tube and allow his body to go also. My father had never wanted a lingering death, in fact, because his diabetes, he had always dreaded the likely possibility that he would deteriorate until he became completely dependent. “Just put me away somewhere and don’t come visit,” he had always said. A loving, honest man, he was also very proud.
Although the shock of his death still stings and my mother, who witnessed the whole thing (she said he fell like someone in a cartoon), still is shaken by the experience (we had a long talk about it last week), my father’s death was relatively easy on us. We knew my father had been feeling very poorly and had even expressed a desire separately to several of us that he not continue to live feeling as he did.
My father-in-law’s death last June was different. He had slowly succumbed to Alzheimer’s and kidney cancer. For a long time, he was physically fit but very contentious and angry. Then he became docile, distracted and physically feeble. Finally, he was bedridden and very sweet, but not quite able to follow any train of thought. I spent a couple of hours with him the day before he died. He was asleep and peaceful. He died the same way.
I was reminded of a conversation I had with him some six years earlier. At the time, we were trying to get he and his wife to move to Waco so that we could take care of them. They initially agreed, and bought a house, putting $2000 down, $1000 more than was necessary. Then the next day they changed their mind, took the $2,000 loss and went back to Arizona. It was crazy, but a sign of things to come, which will be matter for another post.
Anyway, I was trying to get Michael to talk about end of life matters. I wanted to get some idea of what he wanted. What I got rather startled me. Michael told me the story of a friend of his who had gone hiking off in the wilderness and never returned. “I think that is the best way to go.” he said emphatically. Startled, I did not voice my thought that dying of starvation, exposure to the elements, or being eaten by a bear didn’t exactly seem to me to be ideal.
Michael’s going was peaceful, and because of the wonderful hospice care, as pain-free and gentle as possible. Now, six months later, we face end of life issues again with his wife, Nicole. We were told she would die last Saturday from severe dehydration and infection. That is typical of advanced Alzheimer’s patients whose damaged brains begin to shut down internal organs, make swallowing difficult and cause their bodies to be unable to resist infections. However, Nicole did not die. She slowly recovered over the week, and began to be able to speak a little although she still wasn’t eating much. They told us the CAT scan showed she had a stroke in the language centers of the brain.
Christopher was told he should order a feeding tube put into her. This was a decision we had not encountered before. Should we order life-sustaining treatment when the natural processes of the body were starting to shut down? We knew that neither his mother or his father had wanted to have their life prolonged if they were in a “comatose or vegetative state,” but did that apply to the slow mental degradation of Alzheimer’s?
Everyone had a different opinion, usually voiced finally as, “What I would do if it were my mother.” Most of the nurses said no feeding tube, and so did the doctors who had seen Nicole regularly over the past few years. However, after giving their opinion, everyone said, “That is just my thoughts, it is really your decision to make.” What a terrible thing to say. How could we order something that would seem to cause her to starve to death? Could we live with ourselves afterwards?
Christopher attempted to go and ask his mother whether she wanted a feeding tube. After trying to explain the situation, he asked, “Do you want a feeding tube?” She seemed to nod yes. But when he said, “Or to have someone try to feed you?” she also nodded yes. After several tries at this, he gave up and realized she could not make the choice.
Fortunately, the nursing home was able to help. They were willing to try to feed her and give her therapy to help her to swallow. The hospital, after seeing her recover somewhat over the week, was willing to release her. So for now, our decision is delayed.
Last night, Christopher came back from visiting his mom at the nursing home. He said that she now has that same blank, but pleasant stare his father had during the last couple of months of his life. There is really no way for an Alzheimer’s patient to die with dignity, but we certainly hope we can help her die in peace, gentleness and God’s great grace.