Denise Day Spencer

May 28, 2010

It’s never too early to start

Filed under: Home Front,Personal reflections — denisedayspencer @ 6:53 pm

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.

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8 Comments »

  1. Denise,
    I have followed yours and Michael’s blogs for several years now and I hurt for your family when you lost Michael, even though I only know you through your writing. This piece is excellent and so pertinent. I am a family practice doctor (not practicing now due to chronic illness) and I have been with many families as a loved one died. Things were always so much better when the family members all understood the nature of the illness and the wishes of the sick person. Even young families should talk about these kinds of things. From the point of view of the medical provider, everything goes more smoothly when we are all on the same page. You addressed this issue so eloquently. Thank you, thank you, thank you.

    Comment by Catherine — May 28, 2010 @ 7:11 pm | Reply

  2. Thans for excellent advice, Denise. Praying for you and your family…

    Comment by Wendy — May 28, 2010 @ 9:21 pm | Reply

  3. Denise,

    My Husband died five years ago this next month. He had ALS, so we knew and we prepared as you share here. I’ve lived what you describe here…knowing what Rick wanted and forcing myself to carry on, carry through. For me, it was the best I could give him; the best I could love him.

    You’all have my prayers…

    Comment by Laura Short — May 29, 2010 @ 8:17 pm | Reply

  4. My heart breaks for you again. It was almost as brave to write this as it was for your dedicated “nonresponse” during Michael’s last hours.

    I don’t know, if the situation was with my wife dying and those last hours as you describe, if I could do it. I would, like you, have all the temptation to scream, screw the hospice, and bring back my wife, if only for a few more hours..

    and I would be wrong to do it.

    Life is so cruel… and death crueler still.

    And the more we love, the more dedicated we are, the more we hurt at the end.

    Comment by caine — June 2, 2010 @ 7:35 pm | Reply

  5. Thanks, Denise, for one of the sanest and most heartfelt essays I’ve ever read on this issue. My wife and I will need to discuss this matter clearly and soon. When I was thirteen, my mother died all alone in the hospital room where she had gone three weeks before. My siblings and I knew my mother was “seriously ill”, but in those days, we were not permitted to visit her in the hospital. When she died, I refused to go to the funeral home after the initial viewing, and for years afterwards, had moments when I thought I saw her walking on a street or glimpsed her on a porch. Her death haunted me well into my 30s, and I swore I would never allow that to happen to anyone I loved. I have not had to make those decisions yet, thank God. When the time comes, I hope I can apply the wisdom you’ve shared with us.

    Comment by Dan Crawford — June 4, 2010 @ 10:33 am | Reply

  6. Denise,
    Thanks for posting this. It prompted me to initiate a difficult conversation with a family member with a serious illness. It hasn’t gone the way I hoped, but I have the peace of knowing I tried.

    Comment by DebD — June 6, 2010 @ 7:55 am | Reply

  7. Mrs. Spencer,
    That was absolutely beautiful and well said/thought. I never thought I would have to think of life the way I do now until I married into the military. A couple of months after we were married, I suddenly had a last will & testament and was signing the dotted line of “who should tell me” and “when/where would I want to be told” if anything should happen. After four years I still get uncomfortable with the many thoughts, especially with upcoming deployments but I know these things are important no matter how old you are, and I’m so happy you just “said what needed to be said.” I admire your honesty, wisdom, and strength. We continue to pray for you and were so happy to see Noel recently. It did my heart good.

    Comment by Bev — June 7, 2010 @ 9:34 pm | Reply

  8. I went through this with my mother, who died of pneumonia and Alzheimer Disease in March. She never had an official DNR, but she and my dad had a note with their things that they did not want heroic efforts. To this day I have times when I ask myself if I did the right thing letting her die. I think I did, but oh! it was the hardest thing I’ve ever had to do. No child should EVER have to sign the DNR for a parent.

    You have been in my thoughts and prayers. God’s peace be with you.

    Comment by Susan — September 14, 2010 @ 6:22 pm | Reply


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