25-31 Francis Lewis Blvd
Flushing, NY 11358


Knowledge is power

Talking with Ellen Goodman about Death, Alzheimer’s and The Conversation

Despite documented evidence showing that even thinking about your own death can create a feeling of peace and calm that may lead to a generally better state of health, we’ve seen that people still resist talking about this important subject. We’ve explored with Ellen Goodman, Co-founder of The Conversation Project, the great strides she’s made in helping families to embrace an open dialogue about our end of life wishes. We also know from our own experience here at LifeCycles that direct communication about the more frightening aspects of aging, including preparation for death, tends to make everything less threatening. Taking proactive steps such as drafting a health care proxy or a living will can decrease overall anxiety and establish the basis for further communication.

Clearly, we are in the midst of a cultural shift, by necessity! According to the U.S. Census Bureau, the number of people age 65 and older will more than double between 2010 and 2050 to 88.5 million. In this third installment of our dialogue with Ellen Goodman, we’ll explore the specific ways that The Conversation Project has distinguished itself amidst this shift. We’ll also take a look at the latest tool they have developed to address the needs of families coping with Alzheimer’s Disease and other forms of dementia.

LifeCyclesYou have noted that there is a cultural shift now, with death being talked about more readily. Do you think the shift is significant?

Ellen GoodmanI do think there has been a change. Part of that is in the aging of the baby boom generation. And the baby boomers have been the change agents in our culture all the way through. They brought about the Civil Rights Movement, the Women’s Rights Movement, the Gay Marriage Movement… and we now know that the longevity revolution means that we are living 30 years longer than Americans did a century ago.

So we’re dealing with the frailty and the death of our parents, and we are a generation that speaks out, Lord knows… this particular generation is the one… that changed the way we give birth in America… some time ago it was not the doctors who said, please, let’s go into the birthing room, get your feet out of the stirrups, bring the video camera, let’s have the baby in a bathtub. It was not doctors who said that, it was our generation who said you know what, giving birth is not just a medical experience, it’s a human experience. And now we’re saying this about dying. We have a different attitude towards the medical establishment, too… instead of seeing doctors as God, we see them as partners.

LCDo you think that this sort of move towards allowing people to have more control and have their wishes met around dying has the potential to be a unifying issue among people of different beliefs?

EGWell it is. It is a unifying issue. I mean if 90% of the people think it’s important to have the conversation, 90% of the people don’t agree on anything, including the national anthem… The thing that really connects people to this issue, too, is storytelling. This generation of… adult children of elderly parents who have children themselves, the “club sandwich generation,” has begun to tell the stories. You mentioned before the cultural change piece … I think that’s a huge part of the cultural change.

When I was a young woman, every woman of my generation had experienced discrimination and harassment – sex discrimination. But we thought we were the only ones. And it was only when we began to share stories that change happened. And now we’re seeing this around end of life. It’s only when we’ve begun to share stories that change is happening. And the thing that’s remarkable to me with my journalist hat on, is that everybody has a story. Everybody. I tell people that I’m involved in encouraging end of life conversations and there’s kind of half a beat, and then out comes a story. And this storytelling piece is really at the heart of the culture change.

LCWhat distinguishes the work you are doing from what other people are doing in this field?

EG We’ve had an initiative that brings the Conversation Project to people where they work, where they live and where they pray. So we’ve been outside of the medical system as well as inside. We’ve had a faith initiative, because people often talk with their spiritual leaders in crisis, and they haven’t necessarily been comfortable having these conversations. We’ve had projects in the business world, because every workplace understands that caregivers are stressed, and that part of meeting that stress is to have comfortable conversations both before and after a medical crisis. And to have them in their communities.

We have PSA’s, and we have a public messaging campaign that has been very wonderful, and people are more than welcome to join our community and have access to all of our materials. We also have about 300 communities in 40 odd states who are connected to us and trying to bring the Project to their own [people].

We also have a bunch of tools… our tools are different. Our tools are about values, our Conversation Starter Kit is about values – what matters to you at the end of life, not what’s the matter with you. We also have a tool for families who are facing serious illness in their children, and we’re just putting one together that should be up in another month that’s out for review by our experts, for families that are experiencing Alzheimer’s and dementia. And that has been something that we were asked for, because that is really one of the hardest pieces of this whole world.

*   *   *   *   *   *   *

Well good news! The new Conversation Starter Kit designed specifically to help families and patients with Alzheimer’s and other forms of dementia is now available. Here’s some information excerpted from The Conversation Project’s latest press release:

At the heart of the project is the Conversation Starter Kit, a free downloadable step-by-step guide that helps individuals and families have “the conversation” about their preferences for end-of-life care. Once the Starter Kit became widely used by health care professionals and families, The Conversation Project began receiving requests for a guide specifically designed to help those affected by Alzheimer’s disease and other forms of dementia.

“We responded eagerly because we, too, have had personal experiences caring for family members with Alzheimer’s disease,” says Ellen Goodman, Pulitzer Prize-winning journalist and founder of The Conversation Project.  “We appreciate the difficulty and the importance of having these conversations and collaborated with caregivers, social workers, geriatricians and experts to bring forth a guide to help ease families into this topic. We hope this new resource helps caregivers begin these talks in the early stages of decline. It’s always too soon – until it’s too late.”

Goodman founded the nonprofit after serving as caregiver to her mother with Alzheimer’s disease for many years. She realized that while she and her mother had talked about everything, they never discussed how she might want to spend her final days. With each passing decision, Goodman became unsure if she was doing right by her mother and upholding what her wishes would have been. This new resource hopes to change that fate for families in similar situations.

The new Starter Kit created specifically to address the issues associated with Alzheimer’s disease and other forms of dementia is the first of its kind and is now available free for download on the organization’s website. It provides questions that can help caregivers navigate the approach to the conversation based on the cognitive level of the impaired, and can also guide decision making even if the illness is so advanced that the loved one has lost the ability to communicate.

*   *   *   *   *   *   *   *   *   *   *

As always, our goal here at LifeCycles is to help families manage the multitude of practical and administrative concerns they face when dealing with the changing health status of their aging and/or medically challenged loved ones. It’s also an exciting time to be working in this space, as a number of new innovations are being made in clothing, nutrition, housing, architecture and design in general, all of which open new possibilities for ways we can care for our loved ones.

If you are a caregiver and feel overwhelmed by the many issues that need to be sorted out, or would like to discover new alternatives for meeting the needs of your family, contact us to see how we may be able to help. Our goal is to take the stress out of managing all of the practical concerns, so that you can get down to the business of sharing quality time with your loved ones when they need you the most.

Comments are closed.