“My daughter Annette is so excited that I’m turning ninety-six,” laughed Yetta. “She’s invited thirty-two family members to our favorite restaurant for lunch. Such a fuss they’re making,” she said with a smile.
Later that afternoon, I received a call from her daughter. Her voice was troubled, but calm. “Stella,” she began, “Mom enjoyed champagne before lunch, followed by her favorite dish, beef Wellington. We all sang ‘Happy Birthday,’ ate cake, and presented her with a replica of the wedding ring she had lost many years before. The next thing I knew Mom leaned to her left as though she had fainted. We called the paramedics, but she never regained consciousness. She died in the ambulance on the way to the hospital.”
What must Yetta have done to earn such a good death—surrounded by family, having just finished her favorite meal? Most of us will not be so lucky.
Marvin and Susie. One day, Marvin and his noticeably pregnant wife, Susie, arrived at my office for an interview. At eighty-two, Marvin’s mother had been diagnosed with end-stage renal failure. “We thought Mom was perfectly healthy,” Marvin said. “She went to see her doctor for what she thought was a bladder infection, and now they’re telling us her kidneys are shutting down.”
“Is dialysis an option?” I inquired.
“She’s refusing it,” he replied.
“Has she given you any indication of her end-of-life wishes?”
Abruptly, Marvin stood and placed his hand over his wife’s stomach, visibly angry. “How can you discuss death with my pregnant wife in the room? It could be harmful to our baby.” I was taken aback by his reaction. Marvin was a sophisticated entrepreneur, yet he believed that the mere mention of the word “death” could cause harm to his unborn child.
Whether we talk about it or not, death is a natural and certain phenomenon in our lives. Nonetheless, I have often seen people knock on wood when the word is mentioned, as though a superstitious gesture could ward off the unwelcome event. Others feel that death will just take care of itself and prefer not to discuss it. Unfortunately, leaving no plan adds only more grief and heartache to an already sorrowful event. Have your parents made their end-of-life decisions? Have they left directives for your family? By discussing and preparing for death, we lessen the mystery of it and give ourselves some control.
Everyone knows how they would like to die—quickly and without pain. Contrary to our hopes, death more often comes slowly and progressively due to technology that offers options not available a generation ago. Today more than ever, preparation for death is vital.
There is no easy way to rally people’s enthusiasm for acknowledging and planning for death, but as those who have already experienced a death in the family know, death requires preparation. Bring up the subject before a medical crisis occurs. Once your parent becomes ill, it is harder to discuss.
Thelma. “I’ll tell you what a good death would be,” commented ninety-eight-year-old Thelma. She and her daughter Agnes and I had been discussing the death of Walter Matthau. “I want family around me, but not crying. I want to go quickly. No pain, please, and no tubes or needles of any kind. I’d hate to be a burden to my children, and my body will be tired anyway—it’s had a pretty good run!” she laughed.
By being clear about how she envisioned her own death, Thelma was empowering her daughter for the future. Agnes would never have to decide whether to be aggressive about her mother’s care. There would be no room for regret.
During the past thirty-seven years I have traveled through the dying process with thousands of families. I have witnessed peaceful, pain-free death. I have also witnessed death prolonged far longer than it should have been, with more suffering than necessary. Too often, I have seen families emotionally and financially drained because their parents left them no directives.
Megan. Megan, eighty-four, was admitted to our nursing home following a massive stroke, which left her unable to swallow. The question arose: Should a feeding tube be inserted into her stomach? Her two daughters found themselves confused and at odds. When Jeannie stated emphatically that she wanted no heroics, Monica countered, “I can’t make that call. No one can. We need to put the tube in.” Since Megan had left no plan, there were hard feelings between her daughters, both of whom were arguing for what they assumed their mother would want.
For families of frail, elderly parents, the question of whether or not to extend life can be agony. We must be clear about when to take advantage of technology and when not to. According to Robert Butler, founder of the National Institute on Aging, “Americans are only beginning to wrestle with the emotional issues of life support. That’s a national conversation that’s going to take twenty years.”
Taking Control
Just as you want control over your life, you will want that same control over your death. Frightening as the topic is, much of the fear lies in avoidance. Talking about death and planning for it can give you a measure of control over your parent’s death as well as your own. In fact, discussing end-of-life preferences with your parents is one of the most meaningful and compassionate conversations you can have. Since the majority of us do not wish to be kept alive by a tube or a machine, it is essential that your parent’s wishes regarding end-of-life decisions be honored. Talking about the final journey as a family enables each of us to make appropriate decisions and increases the probability that a parent’s directives will be carried out.
Everyone’s death is as unique as his life. Those of us who have been fortunate enough to have one or both of our parents reach their eighties, nineties, or even one hundred realize that the downside of a long life is meeting the challenge of adult caregiving as their needs intensify and they become more frail. More than death itself, people fear a prolonged dying process. Given that death is inevitable, there may come a time when your focus on aggressive medical curing shifts to nonaggressive, compassionate caring.
How Do You Talk About Death?
“Only my daughter,” laughed my father as we sat on a bench in the backyard, “asks me about dying on such a beautiful, sunny afternoon.” I could sense that Dad was debating whether to proceed with the conversation. As my parents entered their mid-seventies, I knew they had made no preparations, nor had they talked to anyone in the family about their end-of-life wishes. That particular afternoon, the timing seemed right. I tried to keep the tone of the conversation unthreatening and focused on the fact that if Dad communicated his wishes now it would allow him to keep control in the future. The conversation with my father shed new light on the awkwardness of this emotionally loaded subject.
“Honey,” Dad said, “I don’t worry about what happens after I die. I do worry about what it will be like before I die.” Many years passed, and our summer conversation became the first of several on this personal topic. At the time of each of my parents’ deaths, I felt empowered to follow through on their directives. Each parent left clear, complete directions. Any uncertainty or anxiety I experienced was greatly reduced. I took comfort in knowing I had followed their wishes.
Should you find that your parent is not ready to discuss the topic, try again later. The right timing will increase the likelihood that your message will be heard. Rehearse your words and wait for the right opportunity; the subject may come up unexpectedly. Sensitive issues are better discussed in person, since it allows you to observe your parent’s body language and facial expressions. If he is looking uncomfortable, you will be better able to decide if it is time to back off or to change your approach. Sometimes a light touch will let him know you are there for him. The manner in which you speak is as important as what you say.
The subject of death is a two-edged sword. On the one side, we contemplate our parent’s death, and on the other, we face our own. During the question-and-answer period following a workshop I presented on death and dying, an eighty-six-year-old gentleman raised his hand and asked, “What if I’m ready and want to talk to my kids about my wishes and they can’t deal with the subject?”
If your parent says, “You know, I’m not going to live forever,” or “I hope I’m still here five years from now,” he may be opening the door for some meaningful conversation. It is normal to want to reassure him by saying, “You’ve got lots of years left, Dad,” or to laugh it off by joking, “Don’t be silly, Dad, you’re going to outlive us all!” But are you listening to what he is saying to you? If your parent is ready to discuss final wishes, and you cut the communication off, he may feel that you are unable to deal with his possible illness or death. He may move into “parent mode” to protect you from a disturbing conversation.
You may have to enter uncomfortable territory in order to talk about death with your parent. One way to keep this conversation going and hear more about your parent’s wishes is to repeat the end of his sentence with a question. If you parent says, “You know I’m not going to live forever,” you can answer, “Not going to live forever? Does that frighten you?” Don’t miss this opportunity to allow your parent to share his feelings. Getting in touch with your own feelings on this topic will affect your ability to have a meaningful discussion.
Letting Go
“Mom just won’t let go,” cried Tina, visibly shaken as she walked into my office. “How can anyone so weak continue to live? She hasn’t had anything to drink or eat for five days. The thought of losing her is overwhelming, but Mom is worn out and—as heartless as it may sound—she needs to slip away.”
I have witnessed families who prayed that their parent’s death would take place sooner rather than later. Then, in the next breath, they accuse themselves of being unloving. “Tina,” I said, “holding on to your parents is a basic human instinct. However, holding on is no longer as important as letting go.”
There are times when a resident’s dying process goes on longer than usual. Remind your parent how much she is loved, and how important she has been to you and your family. Tell her something like, “I’m okay, Mom. My children are okay. You have taught us well. When you are ready, complete your journey in peace.” Have other family members give similar affirmations and reassurances. My experiences with families are by no means a scientific study, but I have often seen that giving people permission to die can be an invaluable final gift. You will find that the peace you share with your parent will bring you peace as well.
Charlotte. “How could this happen?” said Charlotte, crying in her mother’s room. “I was by Mom’s side for twelve straight hours. I left for thirty minutes to get a hamburger and she died while I was gone. It’s not fair.”
Her experience is not uncommon. “Charlotte,” I replied, “I have seen residents die when a family member leaves the room for a short time; I have seen others wait until a certain family member arrives. Our parents will travel through death in their own way, in their own time. There was a reason for your not being with your mother at the final moment. She may have continued to mother you and protect you as long as you were sitting there. Once you left, she was able to slip away.”
How we anticipate our parents’ death—with acceptance or with dread—will depend on how much we have prepared for it. Only they can tell us how they want their final days managed. No one can predict the future, nor can we guarantee it will be trouble-free. But you can help make your parents’ final journey a positive experience. Their deaths will always remain in your memory. Work together to make it a peaceful one.