It’s never too early to start

Noel has been notorious for posting notes on our refrigerator through the years well in advance of December. The note will be her Christmas wish list along with the admonition, “It’s never too early to start!” Shopping for her, that is.

With that as my theme I’d like to discuss something much less cheery than Christmas. In fact it’s not cheery, but positively dreary. It’s death. This post is basically a public service announcement, but one from my own experience. From Michael’s experience. And it’s very important, so listen up.Michael had one advantage over many folks; he knew he was dying. But even before he knew death was certain, when it merely lurked around the edges of our hope, he began to plan for its possibility. He told me he wanted to be cremated. He let me know what he wanted done with the cremains and he planned his own memorial service. Those plans were carried out after death, though. I’m talking about the actual dying.

You’ve heard the phrase “die with dignity?” In his book As I Lay Dying Reverend Richard John Neuhaus states, “But of course, death with dignity is a delusion. Death is always the final indignity.” I agree. That phrase, however, is often used to describe being allowed to die naturally when the time comes. Not hooked up to a roomful of beeping machines. Not shocked back into life repeatedly with paddles and electric current. Maybe dying at home, surrounded by family. To many people that sounds preferable to the alternatives. The problem is that such a death must be planned, and since most of us don’t know when our time will come…”It’s never too early to start.”

Start what? Letting those closest to us know our wishes concerning end-of-life decisions. Michael completed and signed an advance directive. He gave Noel the power to make decisions for him if he and I were both unable to speak up for some reason. Beyond that, though, he communicated with me often about what he did and did not want. It’s not easy to have such discussions; believe me, I know. And he might bring the subject up at the most random of times. We’d be talking about something completely different and suddenly he would insert, “I don’t want tube feedings!” Of course I always promised to honor his wishes, and I made sure to relay the information to Noel so she would stay up to speed. I will admit there were times when I thought, “OK. No resuscitation. I’ve got it! You’ve told me three times already!” Michael was wiser than I; he knew his desires had a much better chance of being followed if repeated.

And that leads me to my point. You have no idea how hard it can be to follow your loved one’s wishes when the moment comes.

For one thing, events may occur so quickly that you barely have time to think or make decisions. What if your family member is in a bad accident? Or has a cardiac arrest during a medical procedure? Or has sudden complications after surgery?

Even if death is expected, you don’t know how it will come and you’re never quite prepared. When I awoke on Michael’s last morning, I knew immediately that something was different. For the past day or two he’d been moving in and out of consciousness, but that day he was completely unresponsive. He also had a fever. It was his breathing, though, that was my biggest clue. I was already acquainted with the “death rattle,” and it had returned full force. In addition, it sounded as if his lungs were filling up with fluid and he was struggling to breathe. His respirations were rapid as he took in air with a gasping sound. It was the gasping that nearly did me in.

It had already been difficult to see his death coming and to simply yield to it. I’m a nurse by profession. Though I haven’t practiced in my field for 20 years, my instincts are still those of helping, taking action, preserving life. Although I was morally comfortable with letting Michael die, it still felt wrong to be offering him small sips of Ensure without a bag of IV fluids anywhere in sight. And if he was spiking a fever and his lungs were congested, where were the antibiotics?

As soon as I heard him breathing that morning, I had a moment of panic. You don’t know how badly I wanted to cry out, “Forget this hospice nonsense! I’m calling an ambulance and I’m calling it NOW!” I could visualize the EMTs racing in and carting him away. I imagined doctors and nurses in the ER doing this and that — all “stat,” of course. But where would it lead? Living out his last hours on a respirator hooked to all of the tubes and machines…and then dying anyway. The cancer would still win; it already had. I stood in the kitchen and remembered all of those commands, some uttered at the strangest of times. “Don’t let them do CPR!” “I don’t want to be put on a ventilator!” “No tube feedings!” I was glad he had repeated the orders, because each repetition served as a rehearsal of the real thing. The moment had come; Michael was ready. Was I?

The hardest thing I’ve ever done was to do nothing. I hovered near Michael, waiting for the hospice nurse to come. I wish I could tell you that it got easier for him. I wish I could tell you that it got easier for me. But there was nothing easy about it. All day I clung to the knowledge that this was what he truly wanted, and by golly, I kept my promise. I kept my promise to the very end. The hospice social worker later told me that Michael and I were both very brave to do what we did. I hadn’t thought of it as courage but it was, on both our parts. Perhaps that courage is part of the dignity. You see, I cheated before. I only gave you part of Neuhaus’ quote. Let’s hear the next sentence. “Helplessness, loss of control, complete dependence on others, and imminent devastation can be borne with a measure of grace within a sacred space shared by those with whom the life now coming to an end was most importantly lived.” I know; that’s a long sentence. Read it a couple of times like I did.

Death is the final indignity. But it can be borne with grace among those you love. Prepare, even if you feel healthy as a horse right now. Let your loved ones know your wishes. Be specific. If you’re the family member who will carry out the requests, be sure you understand what he/she might want in various situations. You may want to rehearse possible scenes in your mind, much like practicing labor breathing. Then when the time comes the knowledge of what to do will give you the strength to carry it out. But like I said, it will most likely be what you don’t do that will make all the difference.

Yes, it’s difficult to talk about these things, but you must if you want to be able to make these decisions yourself. If you don’t start early, it may be too late.