We don’t like to think about it, much less talk about it. Bringing it up is seen as morbid, depressing, even impolite. But talk is key to a healthy attitude toward death, says Dr. Lani Leary, paving the way for us to reintegrate this natural event into our lives and creating opportunities for meaningful connection with our loved ones.
Leary is in town this week as the guest of The Foundation for End of Life Care in Juneau, a nonprofit that supports end of life services including hospice, bereavement care and education. Leary will give a free talk Friday night, “Death in Our Community: From Grief to Hope,” beginning at 7 p.m. at Centennial Hall. She said she hopes the discussion will help initiate real change in people’s lives.
“I don’t want it to be theory,” Leary said of her talk. “My hope is that they walk out and they do something different. They have a conversation that they’ve never had before.“
While she’s in town, Leary will also lead a workshop for healthcare providers, educators, clergy and hospice care personnel on Saturday from 10 a.m. until noon. The workshop will focus on improving communication between professionals and patients. Reservations are required for the workshop; contact Ginny Palmer, board president of the The Foundation for End of Life Care, at firstname.lastname@example.org or 907-957-0227.
One of the messages of Leary’s talk, and of her book, is that the avoidance of discussing death can lead to an isolating experience. Leary, who has more than 25 years of experience as a psychotherapist working with chronically ill, dying, and bereaved, has counseled hundreds of people through the death process, and reports that isolation and loneliness are what the dying generally fear even more than death itself.
“People experience being alone, which is the greatest pain of all,” she said.
In her book, Leary offers direct, practical advice for learning to help loved ones through the process of dying. She also presents strategies for dealing with grief, making a distinction between the grief following a sudden death and one following an illness. Leary includes sample dialogs and questions to help people find the words to broach uncomfortable topics, while reminding readers to allow the person who is dying to have as much control over the conversation and death experience as possible, part of what she calls giving the dying “sovereignty over her death.”
Overcoming resistance to talking about death with loved ones can create a more meaningful and less traumatic experience for both the caregiver and the person who is dying, she writes.
Leary believes open conversations should begin very early on. Children should be encouraged to see death as part of the life cycle, not only through family conversations but through their schooling, she said.
“I absolutely believe we can change the culture if we include it in education,” she said.
With her own daughter, now 33, Leary began discussing death as early as age five.
“I’ve had very direct conversations with her using very blunt language from the time she was little,” Leary said.
Leary became involved in end of life issues as a result of two life-changing events in her own life. First, the death of her mother when she was 13. The loss of her mother was sudden, and young Leary didn’t know how to talk about it to anyone, her father included. Returning to school just three days later in an attempt to hide, Leary was humiliated and ashamed by her classmates’ visible discomfort around the issue, an experience that spurred her desire to help others avoid this devastating experience. Second was a near-death experience when she was 29, which reinforced her belief that consciousness doesn’t end with death, nor does one’s relationship with a loved one.
Leary said that experience was most valuable for what it taught her and how shes uses it in her work.
“I use it by not being afraid of death or the dying process and being able to be very comfortable with people at the end of their life,” she said.
When her father told her he had stage IV lung cancer in 2003, Leary used the skills she’d built up over her career, to make his death as comfortable as possible. Key to this was finding out what he wanted, and giving him control over his situation as much as possible.
Ginny Palmer, board president of the Foundation for End of Life Care in Juneau, also became involved in end of life issues after a personal experience: the death of her husband of Alzheimer’s disease in 2004. Having the time to talk about what he wanted, before the disease made such discussions too difficult, was crucial in helping not only her husband, but Palmer herself, both during and after she cared for her husband.
Palmer, a retired research associate and management analyst, said the Juneau community was great in supporting her through her husband’s death, from the staff at Ron’s Apothecary to the caravan driver to the workers at the Bridge Adult Day Program her husband attended.
“Juneau is an amazing place in that regard, as far as puling all these resources together and I think the main thing is that people don’t know about them,” she said.
Palmer put together her own book, published in 2008 by the Foundation for End of Life Care, called “When you’re not here … a guide for helping those you love.” This book walks the reader through the process of dealing with a loved one’s death, offering lists of who to call and when to call them, how to deal with legal and financial issues, and what to do the immediate aftermath of a loved one’s death (headings include “the first hour,” “the first day,” etc.) Included with the book are two journals for people to write down important information so family members have everything in front of them when the time comes, including space for writing an obituary.
At the back, Palmer lists local resources for Juneau residents. Among them is Hospice and Home Care of Juneau, now operated by Catholic Community Services. The Foundation for End of Life Care was originally created to support Hospice and Home Care, becoming a separate nonprofit organization in 2002 in order to broaden its role in the community. Find out more at www.ccsjuneau.org and www.foundationforendoflifecare.org,
One thing Juneau could use, Palmer said, is something along the lines of the Beacon Hill Village, a nonprofit group of more than 400 Boston residents over age 50. The group works to help members stay active and in their homes through a network of providers, some of whom are members of the group themselves. At the core of the program is the idea that the group is taking care of themselves and each other, rather than being taken care of by others.
“That is what we need in Juneau,” Palmer said.
Like Leary, Palmer stressed the importance of open communication and familiarity with the topic of death between loved ones long before it becomes crucial.
“If we could just figure out way, by talking about death, to realize that this is just part of life,” she said.
Or, as Leary writes, “We will either make friends with death, accepting it as a part of life, or we will deny its power and potential to teach us how to live.”
Leary’s and Palmer’s books are available at Hearthside Books.