Showing posts with label end-of-life conversations. Show all posts
Showing posts with label end-of-life conversations. Show all posts

Tuesday, August 4, 2015

When We Do Not Start the Conversation in Time, Sometimes, There Are Just No Time for Answers:

Tonight I wanted to share from the first edition of my book, The Last Adventure of Life. It's one of the most powerful stories in the book - a poignant article from the American Journal of Nursing that came to my attention thanks to a hospice R.N. The nurse shares in this piece a thought-provoking incident she was a part of when she encountered a dying man on her shift at the hospital. More than anything he needed compassion, and yet she felt she was unable to provide this for him in his last moments of life. She may have provided more than she realized by her very presence, even though the hospital’s protocol left much to be desired. I found myself wondering how things could have been different for this man’s last hours on earth if he, his doctor, and his family had started a conversation about his death much earlier. Then, he might have been able to be on a hospice or palliative program when the following circumstance unfolded.

No Time for Answers: When Clocks and Heartbeats Pause

Mike Soreneson was the second patient on my initial rounds that afternoon: A man in his fifties, youngish but with a tired heart. From the doorway, I could see his distress. It filled me with dread. He was drenched with sweat and his breathing was labored and choked with rattles. Fear was in his eyes. I knew from a report that he’d already suffered two myocardial infarctions, and it was clear that his damaged heart, stretched and weakened from cardiomyopathy, was rebelling against its unrelenting workload.

It took just a nanosecond to sprint from the door to his bedside, apply the blood pressure cuff, and push the call light in frantic summons of the cavalry. Before it arrived, in those seconds that dragged with waiting and the taking of vital signs, he grabbed my wrist and turned his bewildered eyes toward me. Struggling to sit up, he whispered in a voice tight with panic, “Where am I? What’s happening to me?” There was no time for answers as he crossed quickly into the shadows.

Time can stop. It did that afternoon. In that diastole of realization—when clocks and heartbeats pause—I saw him wonder at things beyond my mortal edges. And then, in a finger snap, his eyelids flickered and drooped, and he sighed once before leaving me suddenly alone. Tensions and years eased from his face. He became youthful and handsome, with the promise of life seeming to stretch before him.

As he fell back slowly onto his pillow, the world rushed in: resuscitation, in its chaotic and technical splendor, took control. The room filled abruptly, people crackling with energy arriving together as if from the same train. White coats snapped like battle flags. The code cart, red and bulky, was pushed squealing into the room; a defibrillator and an electrocardiogram machine followed quickly around the corner. A leader barked orders. Sterile packages were ripped open and disemboweled. Mike’s body was stripped and assaulted with needles and tubes. White adhesive tape fringed the room, and us, in little strips, while drops of his blood, imbued with drugs that proffered false hope, rubied sheets and shoes. Paper banners snaked and curled around our feet, documenting the story of a dying heart in unemotional peaks and valleys. Then, straight lines. A life ended.

As the code stopped, I was standing where I started, next to a heart I had compressed and shocked yet never known. The cavalry scattered, as the empty room filled with the smell of defeat. I trembled with adrenaline, yet felt drained. After removing tubes, catheters, tape, and electrodes from Mike’s body, I covered him with a clean sheet and began to clear the debris. Strips of tape had wandered away on the bottoms of shoes to other units, other crises, as this corner of the hospital settled back into familiar routines.

A colleague helped with postmortem care. We talked of the code as if in instant replay, even sharing quiet, guilty church laughs about comedic moments. We didn’t speak about Mike. We didn’t know him. We treated his body with professionalism and respect, but without memories or words of goodbye. I didn’t tell her about his fear. I didn’t mention his last words. They somehow seemed too raw and private, still undigested in my mind.

For weeks after Mike’s death, his impersonal end filled me with sadness and regret. I wish I had comforted him in his final moments—did he recognize my detachment, and feel one final, mortal ache? In the many years that have passed since that afternoon, I’ve made an effort never to shrug away compassion. With every finger-squeeze of thanks, I was enriched. And I hope that when my death is near—before stepping into bright beginnings or overwhelming silence—I will feel a caress on my cooling cheek, or smell the salt of a single tear. Smiling, I will turn from the shadowlands to see someone who loved me, standing in a pool of soft porch light, hand raised in goodbye.                                          --  Pamela Sturtevant, R.N.



There is a land of the living and a land of the dead and the bridge is love, 
the only survival, the only meaning.


— Thornton Wilder

Monday, August 3, 2015

A Powerful and Practical Handbook for Caregivers Struggling to Do the "Right Thing" while Taking Good Care of Themselves


Recently, Carolyn A. Brent of The Caregiver Story interview me on her BlogTalkRadio Show. Here's the link to that interview - which I enjoyed immensely, by the way! I'd received Carolyn's second book called The Caregiver's Companion some time ago, so I decided to write a book review for it. It is very comprehensive and well written; and believe that many of you hardworking caregivers out there will appreciate it. Please take to heart Carolyn's plea that you take GOOD CARE of yourself. I would concur that his is most important!

Here's my review:

Carolyn A. Brent is the perfect author for this book, The Caregiver's Companion: Caring for Your Loved One Medically, Financially and Emotionally While Caring for Yourself, because she was very close to and appreciative of her father, a minister, who she needed to care for as his aging began to take a toll on him. After her father lost his second wife and he had to start going it alone, he began to need Carolyn's help. His needs were serious, so Carolyn had to travel from her home in the Bay Area to assist her father in the Denver area. Eventually, Carolyn convinced her father to move in with her and come to the Bay Area. Some time later, when Carolyn's father's health was in a more critical state, Carolyn had to deal with her siblings, some of whom she had not grown up with. They made life very difficult for her - and her father - toward the very end of her father's life. At a pivotal juncture, Carolyn was not even allowed to visit her father in the private care facility he was living in, and she had to find out about her father's death - after the fact - from a distant relative. This, after acting as her father's caregiver for twelve years, with virtually no help from her siblings.

The point being, Carolyn has had extensive experience working through many complex and complicated issues around caregiving. She is the perfect one to be writing about how important communication and the "crucial conversations" she refers to are, between family members, caregivers, and the loved one facing death. As she writes, "you can never be too prepared." 

I want to mention some of Carolyn's chapter titles here so you can get a feel for the thorough content she offers in her book: "Talk Early, Talk Often," "When Should You Step In?", "Caring for Your Loved one At Home," Moving Your Aging Loved One...", "Emergencies and Life-of-Death Decisions," "Hospice Care," "Crucial Emotional (and Financial) Conversations," How How to Have Crucial Conversations," "Crucial Legal Conversations," and "Taking Care of Yourself." By the way, this last may be the most important chapter in her book?! And Carolyn offers at the very end of her book, "The Caregiver's Cheat Sheet," a comprehensive 14-page list of things that caregivers need to keep in mind, from "empower yourself ... with the right questions when checking out a long-term care facility for your loved one" to "Ask for help and stop having an 'I can do this by myself' attitude."

Needless to say, I highly recommend this beautiful, practical "handbook for caregivers" that many of you current or would-be caregivers around the globe could benefit from. Much of this book is written in a Question & Answer format. Therefore, if you have a burning question, you could simply look for your question in the book and most likely find it. An index has also been provided for the reader's convenience. At the end of each chapter there's even a Question Checklist which summarizes the topics covered in each chapter. 

There are many dedicated caregivers out there working without fanfare or much appreciation. Of the 76 million or so baby boomers in our society, it is likely that a good third of them are caring for a loved one. I read a statistic that said "43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer's disease or other dementia" (November, 2012 - Family Caregiver Alliance). See this article for more.  Carolyn interviewed 1500 caregivers across the globe as part of her research for this book and for her legal campaign to change the law "to protect the caregiver and the person he or she is caring for." My hope and prayer is that many will find this magnificent, very interesting and unique resource for caregivers that Carolyn has spent a great deal of time and effort putting together! In 2011, Carolyn wrote her first book, Why Wait? The Baby Boomers' Guide to Preparing Emotionally, Financially, and Legally for a Parent's Death.

For those of you interested in exploring further, the link to Carolyn's website is here.

Thank you, Carolyn, for your very fine and thorough work on caregiving. I'm very pleased to be associated with you, and look forward to more conversations with you!