“It’s too early until it’s too late”

I recently attended a workshop called The Conversation Project. This grass roots initiative, founded by Pulitzer prize winning author Ellen Goodman, encourages people to communicate their end-of life-wishes. Driving to the event, I wasn’t sure what to expect; perhaps a grim discussion about death and dying? Instead I found the evening focused on life and living. I left the program with the firm belief that making the effort to have what may be an awkward conversation with loved ones now can provide much comfort later for all involved.

Goodman started this initiative after caring for her mother with Alzheimer’s disease for many years. They never discussed end-of-life care, and in the end, she was responsible for the care decisions. “I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made,” Goodman recalls.

“This is not an older person’s issue…it concerns people of all ages. This is not an ill person’s issue…it effects all of us.”

Laurie Miller, program facilitator and owner of Apple Care & Companion , and Zelene Lovitt, Inclusion Initiative Chair at Congregation Beth Torah , stressed that young adults need to have this conversation as much as the older generation. There’s an old saying, “Man plans and God laughs”. Despite our most careful planning, life is unpredictable. Since none of us knows what tomorrow will bring, chances are it’s not too early to have “the conversation” whether you are age 25 or 65. How else will your loved ones know how you want to be treated when the time comes?

It’s personal

What is comforting to one person may not be to another. Why don’t more people discuss this topic?Many people just don’t think about it and may not even know what they want. Others find it difficult to broach the subject.

Consider the numbers: According to the 2018 Conversation Project National Survey, 92% of Americans say it’s important to discuss their desires for end-of-life care, yet only 32% have actually had the conversation. 95% of Americans say they would be willing to talk about their wishes, and 53% even say they’d be relieved to discuss it.

Laurie asked our group to think about how we might want to be cared for at that stage of life and share if comfortable. The large variety of responses, some very specific, clearly demonstrated that what is important to each individual is unique and very personal. One person said she did not want to be alone, even if only a stranger was available to sit with her. Another said he would like to be with close family, but if not possible, prefered to be completely alone. Someone else expressed the desire to wear glasses 24/7 and keep the lights on in the room. Still others had different wishes altogether. This exercise was eye-opening for me as these seemingly small requests have the potential to provide huge amounts of comfort at a difficult time.

Goodman states on her website, “Too many people die in a manner they would not choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain.”

This exercise, based on the Go Wish Game, made me think back to when my mom was in the end stages of her life. Though we had not discussed this specific aspect of end-of-life care, I knew mom would not want visitors unless she looked presentable in clean pajamas and wearing her favorite bright red lipstick. Happily, I was able to easily make this happen. But the many other decisions I made for her during that time were based on what I thought she would want. I did the best I could, but I don’t know if she was truly comforted by my efforts. How I wish I had thought to find out more about her specific wishes when she was still able to communicate.

Have the conversation early and often.

The Conversation Project recommends you start slowly, just to open the door to the conversation. Look at your initial attempt as the first of many discussions. Be patient as some people need more time than others – remember that this topic can be uncomfortable. Think about who needs to be part of the discussion. Where the conversation takes place is another important consideration; the kitchen table is better than gathered around a hospital bed.

The Conversation Project starter kit provides excellent information on how to begin and the website offers many FREE resources as you continue the discussion. ConversationReadyNTX is another extremely helpful resource specific to North Texas.

The Bottom Line

This workshop was my first direct exposure to The Conversation Project. The evening left me feeling empowered to think about how I want to live the end part of my life and determined to learn more about the specific wishes of my husband, father, and children. I know the conversations may be difficult, uncomfortable and unsettling, yet they are necessary. Being prepared and knowing our loved one’s wishes will help at that most difficult time in life.

Contact Laurie Miller for more information about The Conversation Project