Sometimes the most important end-of-life conversations don’t happen out loud.

That was one of the revelations I had after leading a Conversation Starter Kit workshop at a church in a suburb west of Boston last year. There were about 40 people seated at round tables in the brightly-lit social hall. A couple who appeared to be in their 80s sat right up front. She was bright-eyed and chatting with the people at her table. He sat with his chair turned toward me, leaning on his cane, not talking with the others.

The workshop begins with reflecting on questions from our Starter Kit:

• What do you need to think about or do before you feel ready to have the conversation?
• Do you have any particular concerns that you want to be sure to talk about?
• What do you think will matter most to you at the end of life?

After people think quietly to themselves, we encourage them to write down their answers and then share them with the people at their table. I scanned the room and noticed the gentleman still leaning on his cane. His wife was crying softly. I approached them and knelt down to be at eye level.

“How are you doing right now?” I asked.

The woman picked up her husband’s workbook. She said, “He has dementia and he doesn’t talk very much anymore, but he wrote this. I didn’t know he’s been thinking about this.”

She handed me his workbook. He had completed the sentence “What matters most to me at the end of my life is _______” with “to know that my wife is safe and secure and she knows how much I love her and appreciate everything she does for me.”

Having the Conversation Without Your Loved One

It’s understandable to assume that there’s no way to determine a person’s end-of-life wishes when they have advanced dementia. But even when someone can no longer express themselves verbally or in writing, The Conversation Project’s Conversation Starter Kit For Families and Loved Ones of People with Alzheimer’s Disease and Other Forms of Dementia offers some guidance.

If your loved one is no longer able to have the conversation, then it’s up to you and your loved one’s circle of care to do your best to give voice to his wishes to insure they are respected. The disease interferes with his capacity to answer abstract questions — so you need to do your best to answer them as you think he would. This is not about your opinion versus your siblings’ opinion. It’s all of you doing your best to express and respect what your loved one would want.

Complete the Starter Kit as if your loved one were filling it out. Instead of inserting what you would want for yourself, or what you think would be best for your loved one, try to “bring your loved one into the room.”

Honor her by focusing on what she would want, what she would say if she could. Ask, “How would Mom answer this question?” “What mattered most to Mom?” Do your best to fill in the “Where I Stand” scales with the answers she would have given:

• Would she worry about not getting enough care? Or that she would get overly aggressive care?
• Would she be okay with spending her last days in the hospital? Or would she really want to spend her last days at home?
• Would she want us to take care of all her needs ourselves, or would she want us to get some help from professionals?
• Would she prefer to be alone most of the time? Or would she prefer to be surrounded by loved ones?
• If we had to list the three most important things she wanted us to know about her wishes for end-of-life care, what would they be?
• What was she especially concerned about?
• What was really, really important to her?
• What kinds of treatment would she want (or not want)?

When a loved one has dementia, it is tempting to postpone talking about what’s most important until tomorrow, or the next doctor’s appointment, or after the holidays. But if we are to be their voice when they lose the capacity to make decisions, it is crucial to summon our kindness, compassion, and courage and have The Conversation. Don’t wait. It’s always too soon, until it’s too late.