Tag Archives: End of life

Marge Curtis, May 1,1918 ~ December 18, 2011

Mom at twenty-three

Those of you who are regular readers of my blog know that every Monday is devoted to Monday’s Link Roundup. This Monday is different. Yesterday Mom died at Victoria Hospice at the age of ninety-three.

Mom always believed that when she transitioned to that other side, she’d be met by my Dad,  Ed Curtis, who died in 1990. I like to think she was right.  And whether by coincidence or design her death took place on their seventy-second wedding anniversary. They were married December 18, 1939.

Throughout my life Mom was one of my biggest fans and supporters. In many ways she introduced me to story telling at an early age. An avid reader, her favorite activity before going to sleep was to read a few pages from her latest book. Every morning I would eagerly run into her bedroom to sit by her bed. There, she would relate the latest installment – no doubt censoring some of the racy bits for the ears of an eight-year-old.

She also regaled me with stories from her teenage years when her family homesteaded in the wilderness of northern British Columbia.  Eagerly absorbed by a young boy were tales of encounters with grizzly bears, hunting, and snowy winter nights, hunkered down in their log cabin.

People have remarked that it’s sad that Mom’s death came so close to Christmas. In part that’s true. I certainly haven’t had time in the past few weeks to think much about the holiday season. But central to this time of year is the message of peace, comfort, and joy. And I’ve experienced all of those in a personal and profound way. Mom and I were surrounded at Victoria Hospice by loving and compassionate care. Her final days brought her comfort and her death was blessedly peaceful. And we had joyful moments – reminiscing about Christmases past, enjoying cups of her favorite tea from her favorite cup, and laughing at this comedy called life. One of the last things she said to me, opening her eyes briefly was, “Having fun?”

I miss her dearly. My world has changed forever. But surrounded and supported by my loving partner, friends, and colleagues I’ll carry on doing honor to those values she tried to instill in me – kindness, loyalty, grace, and a good sense of humor.

Thanks, Mom.

Monday’s Link Roundup.

In this week’s Monday’s Link Roundup, if you self-publish, don’t miss Book Design for Self-Publishers: Raw Materials.   This is a terrific site for anyone involved in book design.  And if you’re like me and don’t include pricing on your website, you might change your mind after reading Why We Are Afraid to Talk Pricing.

  • Telling Life Stories Through Quilts. “Generations of women have been telling stories in fabric — with quilts. Lisa Morehouse paid a visit to one quilting bee in Mendocino County’s Anderson Valley. Many of the group’s members emigrated to work in the local apple orchards and vineyards.”
  • End of life: You shared your stories. “As part of the Globe’s in-depth series on End of Life decisions in the 21st century, we asked you to tell your stories around this difficult topic. Readers from across the country joined the conversation.”
  • The Life Reports II. “A few weeks ago, I asked people over 70 to send me “Life Reports” — essays about their own lives and what they’d done poorly and well. They make for fascinating and addictive reading, and I’ve tried to extract a few general life lessons.”
  • Not Your Grandmother’s Genealogy Hobby. “Wikis, social-networking sites, search engines and online courses are changing genealogy from a loner’s hobby to a social butterfly’s field day. New tools and expansive digital archives, including many with images of original documents, are helping newbies research like pros.”
  • Why We Are Afraid to Talk Pricing. “Think about the last time you went to a website for a product or service that you couldn’t buy outright online. Did it list prices? Or did the site encourage you to call for more information? How many times do you walk away from a purchase simply because you couldn’t get enough information on pricing to make an informed decision?”
  • Book Design for Self-Publishers: Raw Materials. “When you sit down to design a book, there are organizational tasks you have to address right at the beginning. Getting your raw materials organized and making sure your workflow will produce an efficient publishing process are important enough to spend some quality time on. Let’s take them one at a time.”
  • Family Tree Magazine Podcast Episode Notes. “Tips on how to get relatives to discuss family history, a discussion of the Historic American Cookbook Project, and news on the Genealogists for Families project at Kiva.com. Plus: Learn more about creating a family history book from Family Tree University’s Nancy Hendrickson.”

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Monday’s Link Roundup.

If you’re searching for a way of creating a free professional promotional video for your business, look no further. Check out My Business Story in today’s Monday’s Link Roundup. And reenacted photos in Back to the Future will forever change how you look at childhood pictures of yourself.

  • Moby Offers Up Free Music to Filmmakers. “If you’re an indie filmmaker, non-profit filmmaker or film student, you can head to MobyGratis.com, register for the site, and then start browsing through a fairly extensive catalogue of recordings — 120+ recordings in total.”
  • The Late Word. “When we speak of literature, we should not imagine that we are speaking of some stable and enduring Platonic entity. The history of literature has always been about its highly mutable institutions, whether bookstores, publishers, schools of criticism, or, for the last half century, the mass media.”
  • StoryCorps Gives Voice to Critically Ill. “[StoryCorps]has created the StoryCorps Legacy initiative. Partnering with hospitals, hospices and cancer centers, it helps people with life threatening medical conditions record their stories.”
  • My Business Story. “Google and American Express know every small business has a BIG story. So we’ve created MY Business Story to help you make a professional-quality video. It’s free and easy. Just tell your story and we’ll take care of the rest.”
  • A Plethora of Writing Prompts for Creative Writing and Journaling. “Having a list of prompts that you can pull from every day in order to help you practice your craft, even if it’s just for ten minutes a day, can be very helpful. In addition, sometimes creative writing prompts can help spark an idea when you’re stuck on a short story or some other fiction piece that you’re writing.”
  • Back to the Future. “I love old photos. I admit being a nosey photographer. As soon as I step into someone else’s house, I start sniffing for them. Most of us are fascinated by their retro look but to me, it’s imagining how people would feel and look like if they were to reenact them today… A few months ago, I decided to actually do this. So, with my camera, I started inviting people to go back to their future.”
  • miniBiography and the 99%. “David Lynch’s Interview Project,[is] an online series of short video documentaries centering on the lives of “normal” people across America. In Interview Project’s 121 mini-biographies, the filmmakers (including Lynch’s son Austin) ask complete strangers piercing, existential questions. It is a source of ever-renewed wonder that each stranger has an answer, and that the answers are so often so rich and brimming with hard-luck stories and lived experience.”

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Encore! Life Stories and Palliative Care. When Time Is Running Out, What Do You Focus On?

At  Victoria Hospice we’re into the third year of a Life Stories  service for patients registered with Hospice.  This is a program that I initiated and continue to be involved with as  a trainer and a mentor for our Life Stories Volunteer Interviewers… Read more.

Monday’s Link Roundup.

This Monday’s Link Roundup has two terrific lists, 100 Resources for Writers and 50 Best Memoir Blogs. And if you want to read about the value of life stories for terminally ill patients, be sure to check out For The Dying, A Chance To Rewrite Life. 

  • Objects and Memory. “The documentary film Objects and Memory depicts experiences in the aftermath of 9/11 and other major historic events to reveal how, in times of stress, we join together in community and see otherwise ordinary things as symbols of identity, memory and aspiration. In its exploration of people preserving the past and speaking to the future, Objects and Memory invites us to think about the fundamental nature of human interaction.”  [Thanks to cj madigan of Shoebox Stories for alerting me to this item.]
  • Blast From the Past. “Wondering what hot topics your grandparents discussed with the neighbors, or what tunes your mom whistled as a teen? Want to flesh out your family’s story with facts about everyday life? Enjoy reminiscing about days gone by? Our book Remember That? A Year-by-Year Chronicle of Fun Facts, Headlines and Your Memories, by Allison Dolan and the editors of Family Tree Magazine, is an accounting of the whos, whats, whens and wheres of the 20th century.”
  • 100 Resources for Writers. “I don’t necessarily use or outright endorse all of these resources myself. Thing is, in compiling this list I started thinking, “Who am I to judge what is helpful for other writers?” My goal is to provide you with a starting point for online exploration, not tell you what to do. So if you hate some of this stuff? Fine, not my fault! If you love it? I take full credit!”
  • For The Dying, A Chance To Rewrite Life. “For several decades, psychiatrists who work with the dying have been trying to come up with new psychotherapies that can help people cope with the reality of their death. One of these therapies asks the dying to tell the story of their life.”
  • The Women’s Museum. “A Smithsonian affiliate, The Women’s Museum™: An Institute for the Future makes visible the unique, textured, and diverse stories of American women. Using the latest technology and interactive media, the Museum’s exhibits and programs expand our understanding of women’s participation in shaping our nation’s history and create a lively environment for dialogue and discovery. Thousands of stories recount public and private triumphs and the struggles of those who would be denied their freedoms in all its forms: political, social, and spiritual.”
  • 50 Best Memoir Blogs. “Our list of the 50 best personal memoir blogs is full of poignant childhood tales, scandalous anecdotes, and valuable resources for any aspiring writer. They may even inspire you to write your own!” [Thanks to APH member Catherine McCrum for alerting me to this item.]

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Have You Written Your Legacy Letter Yet?

“My friends, love is better than anger.
Hope is better than fear.
Optimism is better than despair.
So let us be loving, hopeful and optimistic.
And we’ll change the world.”

~ Jack Layton, (1950-2011)  MP and  Leader of the Official Opposition, Canada

These were the inspirational closing words of a farewell letter to Canadians written by Jack Layton  days before he died on August 22nd.

While  not known widely outside his native land, Layton held a special place of affection and admiration for Canadians. This could be seen in the unprecedented outpouring of sorrow during a week that culminated in his state funeral on August 27th in Toronto.

Globe and Mail columnist Sandra Martin in her article Why a farewell letter can comfort and inspire wrote:

Jack Layton wasn’t the first person to send a public deathbed letter to friends, colleagues and supporters and he won’t be the last…Memories fade or become altered with time, but a letter is a literary document that retains its original text and ensures that your words– rather than somebody else’s interpretation of them–are passed on…Writing a farewell letter, even in conjunction with others, forces you to think deeply and hard about the message you want to send and how you to express it… For mourners, the letter can become a talisman. You can carry it in your pocket, consult it when grief wallops you, and reread it like a gospel to help you make decisions in keeping with the deceased’s wishes.

Reading Martin’s article, I was reminded of the value of these “legacy” letters. Even if we’re not dying, a  legacy letter, sometimes called an ethical will, can be a source of comfort for  those who will one day be left behind. I’ve written about ethical wills in a previous article What Do Sidney Poitier and Ethical Wills Have In Common?

For those of you interested in writing your own or in teaching others to write an ethical will,  check out my free Ethical Will Course here.

Have you written your legacy letter yet?

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How Prepared Are You to Interview Terminally Ill Clients?

Life continually challenges us with the unexpected.  And only a fool would attempt to prepare for the unforeseen. It does help though to go into uncharted territory with our eyes open to potential risks.

Interviewing terminally ill people for their life stories is  satisfying, worthwhile, and often moving work. Though it does come with precautions. I’ve previously written about some of these in Interviews May Unlock Traumatic Stories. and 7 Essential Questions to Consider.

Now imagine yourself in the following situation.

You’re interviewing an 80-year-old woman, Rose, who lives with her daughter, Sandra. The daughter provides much of the caregiving. Rose suffers from a number of heart-related problems.

This is your third visit. The daughter tells you that she’ll be out doing errands while you spend the next hour interviewing her mother. Sandra assures you she’ll be back within the hour. It’s just you and Rose alone in the house.

About halfway through the interview Rose develops severe pains in her chest. She asks you to hurry and get her nitro pills in the kitchen. You find a tray with numerous medications but nothing labeled nitro.

Back in  the living room you  explain this to Rose. She suggests you call her daughter whose cell phone number is on a message board in the kitchen. But when you try to find the number, it’s nowhere to be found.

Rose is becoming increasingly agitated and calls out to bring the tray of medication to her in the living room. A number of questions race through your head.

  • What if she picks the wrong medication with calamitous results?
  • If something goes wrong, what should I do?
  • I’ll have to leave soon for an urgent appointment and Sandra hasn’t returned home. Should I leave anyway?

What would you do?

As a general rule, it is vitally important that as a personal historian working with a terminally ill person, you don’t begin to undertake caregiving tasks. You weren’t hired for this and indeed may put yourself and your client at risk if you step into such a role.

Having said that, you could find yourself in a situation similar to the one described with Rose. And with no one available to help, you may have to step in.

Some suggestions.

There are a range of possible responses, none totally satisfactory. But here are some suggestions:

1. If Rose is registered with a local Hospice, there may be a number you can call for just such a crisis. Someone there would have a list of her medications and be able to help you. If she isn’t registered with Hospice, then go to step 2.

2. Assuming Rose is clear mentally, bring the tray and ask her to point to the nitro pills.  Read out the name of the drug and ask if these are indeed the nitro pills. If she confirms they are, then allow her to select the bottle and  take the prescribed dose. Don’t select the bottle for her.

3. Stay by Rose’s side and monitor her progress. If she shows signs of recovery, you can breathe easy. If her condition worsens, call 911.

4. Assuming all is well, you still have an urgent appointment to keep.  Sandra, Rose’s daughter, hasn’t returned. And you feel uncomfortable leaving Rose on her own. Here’s what you might do:

  • Ask Rose if there is a neighbor who could come over and stay until Sandra returns. If there is, contact the neighbor and have that person come over.
  • If there’s no one who can come over, I’d opt to stay until Sandra returns. As urgent as your appointment may be, it is not worth risking someone’s safety. Call and re-schedule your appointment.

A final word.

One way to avoid the kind of predicament  I’ve described is to make certain that you’re never alone with a person whose health is severely compromised. Don’t allow a family caregiver to use you as a means to get out of the house. Pleasantly and firmly point out that your arrangement with your client doesn’t involve caregiving responsibilities.

I’d appreciate your responses to this scenario. Please post your thoughts in the comment box below. I promise to respond to each one.

Photo by jan van schijndel

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Monday’s Link Roundup.

To spice up the beginning of your week, this Monday’s Link Roundup includes  Vanity Fair. Writers Reading with  Susie Bright reading from her memoir Big Sex Little Death.  If you’re new to video editing, head over to The Basics of Video Editing. It’s a terrific resource. One of my favorites this week has to be The Book Surgeon. To say it’s incredible doesn’t do this work justice.

  • Cooking Tales: 10 Delicious Memoirs from Chefs. “The past few years, we’ve watched “foodie” culture explode into prime time, elevating many chefs to celebrity status. It’s no wonder, then, that the chef memoir has become as much of an art form as cooking itself.”
  • For Dying People, A Chance To Shape Their Legacy. “Imagine that you’ve just been told you have only a short time to live. What would you want your family and community to remember most about you? In St. Louis, a hospice program called Lumina helps patients leave statements that go beyond a simple goodbye.”
  • Vanity Fair. Writers Reading: Susie Bright Reads from Big Sex Little Death. “Susie Bright has never been one to shy away from discussing sexuality, erotica, and feminism, becoming one of America’s leading “sexperts.” In her new book, Big Sex Little Death: A Memoir (Seal Press/Audible), Bright traces her entertaining and influential political/sexual revolution—from a fearsome Irish Catholic Girl Scout to teenage radical in The Red Tide and International Socialists to co-founder of On Our Backs, the first erotic magazine created by women.” [Thanks to APH member, Catherine McCrum for alerting me to this item. ]
  • The Book Surgeon. “Using knives, tweezers and surgical tools, Brian Dettmer carves one page at a time. Nothing inside the out-of-date encyclopedias, medical journals, illustration books, or dictionaries is relocated or implanted, only removed.Dettmer manipulates the pages and spines to form the shape of his sculptures. He also folds, bends, rolls, and stacks multiple books to create completely original sculptural forms.” [Thanks to Beth LaMie of One Story at a Time for alerting me to this item.]
  • The Basics of Video Editing: The Complete Guide. “These lessons concentrate primarily on editing video in Final Cut Pro and Adobe Premiere Pro, but that doesn’t mean they won’t be helpful for other editing software. The idea behind having the lessons with both applications is to demonstrate that when you learn one editing application it’s pretty easy to learn another.”
  • Before I die I want to… “A little over a month ago, installation artist Candy Chang turned the side of an abandoned house in her New Orleans neighbourhood into a giant chalkboard where passersby could write up their personal aspirations.”

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What Everybody Ought to Know About Life Stories and Palliative Care.

I’ve been writing about the value of life stories in palliative care since 2008. I felt it was time to assemble these articles in one place for those of you who are interested in this subject. The posts are arranged chronologically from the most recent to the oldest.

Photo by David Hsu

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From the Archives: Caution: End-of-Life Interviews May Unlock Traumatic Stories.

Caution: End-of-Life Interviews May Unlock Traumatic Stories. Previously I have written here about interviewing people who are living with a terminal illness.  There are benefits for patients  in capturing the stories of their lives and conveying special messages to loved ones, but a word of caution. It can also be a time when traumatic incidents from a person’s past can resurface. These could involve physical or sexual abuse, loss of a child, and so on. You’re not likely to encounter such stories  but it … Read More