Thursday, November 28, 2019

Essential Service ...





When one is sick, two need help.

The Well Spouse Association





Hi Everyone,

It's been a stressful few days here in Vancouver. A labour dispute between transit workers and Coast Mountain Bus Company left many scrambling as they faced the possibility of a three day transit interruption. Amongst those most stressed but least acknowledged were family caregivers/carepartners and their care recipients - young, old and in-between.

Many family caregivers depend upon the support of homecare nurses and care aides to provide assistance in moving, bathing and feeding their loved ones plus the provision of medicines and treatments. They also need professional respite support so they can go to work, run errands, buy groceries and prescriptions, attend medical and treatment appointments and tend to self-care. When  professional helpers are unable to take transit to work or between clients, as 40 - 50% of them usually do, the stress on families they serve rises exponentially. (As if it were not high enough already.)

In looking through the online, television and newspaper articles about this incipient crisis, there were many more articles about the impact of the strike upon students and their final exams than about the needs of our most vulnerable. It makes one wonder just how cognizant the decision-makers were (on both sides of the table) regarding the risk they were imposing upon populations already at risk.

(And that is to say nothing of people with serious medical conditions who do not have family caregivers and depend entirely upon care provided by community health agencies, or who simply care for themselves. I have a friend who, while receiving treatment for breast cancer, travelled to and from her chemo appointments by bus because taxi fares were too expensive and she didn't own a car. How would she have managed during a three-day transit strike ...?)

It seems to me that people like these - family caregivers and those managing their own illness or disability - deserve to have basic transit declared an essential service so they are not subjected to additional strain and risk. We are constantly telling family carepartners and those with chronic conditions to take better care of themselves but, as a society, we owe it to them to at least make that possible. Caring for the caregivers and those with serious health conditions is the responsibility of us all.




Thursday, September 12, 2019

Enduring Somatic Threat ...



Once you ... put the pieces back together, 
even though you may look intact, 
you (are) never quite the same
as you were before ...

Jodi Picoult


Hello, Everyone,

Over the summer as I was writing an article on Chronic Sorrow, I tripped over some interesting new medical research on a proposed subset of posttraumatic stress called enduring somatic threat (EST). Have you heard of it? Well, to be honest, neither had I -  though in retrospect I recognize aspects of it in my husband's seven year journey with heart failure.

Physicians and psychologists in the cardiovascular field have been studying the 12 - 25% of people who have posttraumatic stress disorder (PTSD) responses after life-threatening medical events such as heart attacks, unstable angina, TIA's and strokes. The response they describe is similar to traditional posttraumatic stress disorder but is said differ from it in four ways:

1. The initiating event and continuing source of threat come from within the body rather than the external environment so there is nowhere to go to escape the threat. 
2.  The person's threat-oriented thoughts and intrusions are focused more on the dangers of the present and future than memories of a past event. Because the underlying illness persists, there is constant concern regarding a present or future recurrence of the life-threatening event or something similar. 
3.  Avoidance behaviours focus on reducing reminders of current and future cardiovascular risk rather than triggers of a past event. (eg Patients may avoid prevention medications and physical activity because they are reminders of the continuing threat.)
4.  Hyperarousal behaviours and their consequences are also different from traditional PTS. People become hyper-aware of internal body sensations vs external environmental cues (fear becomes velcroed to an increased heart rate, irregular heartbeat, breathlessness, the first stirrings of chest pressure or pain, slurring of speech, loss of balance, numbness, tingling etc).

While I'm not completely sure that all the above distinctions are true distinctions - perhaps it's more a matter of both-and than either-or when it comes to past and present/future somatic threat - it will be interesting to see how this research progresses and whether it begins to explain some of the differences we see between "patient" and family caregiver manifestations of Chronic Sorrow.

I think it is wonderful that medical and psychologically-oriented folk are working together to explore the traumatic impact of life-threatening events on their patients and families. I am hopeful that they will include previous research on Chronic Sorrow and Somatic Experiencing in their explorations and models so that grief and trauma can be addressed together (they're usually entwined in serious chronic illness) and that somatic treatments will be considered for this somatic distress.

If you are interested in reading some scholarly articles about enduring somatic threat, perhaps begin with the articles below:

Edmondson, Donald E.  An enduring somatic threat model of posttraumatic stress disorder due to acute life-threatening medical events. Soc Personal Psychol Compass. 2014 Mar 5; 8(3): 118-134.


Edmondson, DE et al. A challenge for psychocardiology: Addressing the causes and consequences patients' perceptions of enduring somatic threat.  American Psychologist. 2018 Vol. 73, No 9, 1160-1171.








Thursday, June 13, 2019

Jan's Summer Reading 2019 ...




Fill your house with stacks of books,
in all the crannies and all the nooks!

Dr Suess



Hi Everyone!

I've just finished the last workshop of the season, the new Compassion Fatigue: Going Deeper - Trauma, Spirituality and Resilience, and it went wonderfully well according to the evaluations. So now I can turn my face to the long, happy days of summer with the wedding of my goddaughter, Rebecca, at the end of the month and, two days later, a flight to Toronto followed by the long drive and boat ride to the Kahshe Lake cottage of friends. There I'll enjoy two glorious weeks of rest, writing and rejuvenation. (Thank heaven for dear friends willing to share their waterfront retreat!)

As usual, I'm having trouble deciding how many books I can fit in my suitcase! Here's the list from which I'll be choosing this year:

1.  Work Fuel: Boost Performance. Improve Focus. Eat Your Way to Success. by Graham Alcott and Colette Heneghan. (2019)
This book focuses on viewing food as fuel and making choices that will give your brain and body the best chance for optimum performance. For those of us who work (pretty well all of us) it promises ways to boost energy and productivity and fit healthy eating into already busy lives. I'm a sucker for books on healthy eating and this book's post-it phrases like "ditch the al desko lunch" and "be a fuelie" promise a light touch.
2.   The Art of Typing: Powerful Tools for Enneagram Typing by Ginger Lapid-Bogda. (2018)
This new-to-me book by one of the organizational experts in the Enneagram field, is written to help people to type themselves or to help them type others in a more accurate way. It offers detailed differentiating questions to help others clarify their type and, specifically, to differentiate between type pairs from the nine Enneagram personality types. I like Ginger's straight-forward teaching style and look forward to gleaning some new pointers in Enneagram typing. (If you're interested in the amazingly accurate and powerful Enneagram, I will be offering a beginners workshop on Friday November 22nd on Granville Island. You're very welcome to join us!)
3.  Life on the Ground Floor: Letters From the Edge of Emergency Medicine by James Maskalyk, MD (2017)
This award-winning memoir has been waiting on my shelf for the past year and, remembering my own years in critical care nursing, I'm looking forward to hearing how things have changed (or not) as I've gone off in other directions. I understand that it is a somewhat raw read so it may be a book to pace slowly over a couple of weeks.
4.  Rumi's Little Book of Life: The Garden of the Soul, the Heart and the Spirit by Rumi and Maryam Mafi (Translator) (2012)
A collection of 196 poems, previously unavailable in English, from the 13th Century Sufi poet, Rumi, focusing on coming to grips with the inner life. This small book is a guide to the inner journey, one which I hope will make a good companion for contemplation on quiet sunrise mornings by the Lake.
5. Braving the Wilderness: The Quest for True Belonging and the Courage to Stand Alone by Brene Brown (2017) My good friend, Sandra, and I have been reading this book together -  she, as she faces into widowhood after years of carepartnering and me, as I make one more attempt to complete a book on chronic sorrow. For each of us, there is a sense of vulnerability and an enhanced perception of what Brene calls "the wilderness" as we walk our individual paths. Brene defines the wilderness as an untamed, unpredictable place of solitude and searching, a place as dangerous as breathtaking, as sought after as feared. It is where we show up as our true selves and brave uncertainty, standing alone, and potential criticism. 
6.  Slow Dancing With a Stranger: Lost and Found in the Age of Alzheimer's by Meryl Comer (2014) This is a re-read for me. Since I first opened the pages of this book five years ago, three friends have been diagnosed with early onset dementia and I want to go through Meryl's poignant writing once again to resensitize myself to the experience of spousal caregivers dealing with dementia. (I say "re-sensitize" because I've often thought that caregiving is a little like labour and delivery - excruciating in the moment but the intensity is gradually forgotten once the pain ends.)
7.  The Black Ascot (2019) and A Forgotten Place (2018) by Charles Todd.  These books will provide my escape reading while lying on the dock. Each is one of a series - the former about a British police inspector returned from World War I with shell shock or PTSD and the latter about, Bess Crawford, a returned WW I nursing sister. Both struggle with personal demons as well as a murder mystery in each volume in the series.

So, there's the list for this summer. I intend to enjoy as many books as I can while at the cottage and hope you might enjoy a few of them as well.



Monday, April 8, 2019

A Word About Words: Chronic Sorrow ...



Where there's change there's loss
and where there's loss there's grief.

Bill Bridges




Hi Everyone,

I've been writing about the grief of family caregivers this weekend and I was struck by how many terms now exist to describe this experience. The professional writings about caregiver grief are fraught with confusion and contradiction due to the increasing number of overlapping terms and concepts.  This differing terminology arises from different professional fields, the study of different medical conditions, research in different nations and cultures, and studies from different times in history. I'll share a few of them with you here:

1.  Anticipatory Grief is the earliest of the overlapping concepts applied to the natural and expectable grief of family caregivers.  It was coined by German psychiatrist, Erich Lindemann, in 1944, to describe grief we experience before a loss actually occurs.  Later, Therese Rando expanded the concept, defining it as:

The mourning, coping, interaction, planning and psychological reorganization that are stimulated and begun, in part, in response to the impending loss of a loved one and the recognition of associated losses in the past, present and future.  (2000, p29)

Many writers assume that anticipatory grief is synonymous with caregiver grief.  However, in my personal and professional experience, anticipatory grief comprises only a portion of a family caregiver's heartbreak. To a great extent, caregiver grief also includes responses to current loss.  Workshop participants tell me that while the pain associated with the anticipated death of a loved one is certainly part of their reality, their greatest source of sorrow is the daily losses associated with current changes and adaptations.

2.  Chronic Sorrow (CS) is the second term used to describe caregiver grief. It first appeared in the literature in 1962 in an article written by American social worker and advocate for families of developmentally delayed children, Simon Olshansky. At the time, family caregivers were seen as being unaccepting of their children's diagnoses, stuck in their grief and, therefore, difficult to deal with. Olshansky offered  another viewpoint, saying that these parents were suffering from  expectable, continuing, episodes of grief that flowed from the losses occurring across their children's lifespans. He pushed for caregiver support rather than medical attitudes of pathologizing and criticism.

After an initial flush of interest in Olshansky's ideas, CS disappeared from the literature until the mid-1990's when the Nursing Consortium for Research on Chronic Sorrow published several studies confirming the concept and studying its characteristics. Later, in 2002, family caregiver and psychologist, Susan Roos, PhD, gathered the research to date and combined it with her considerable personal and professional experience to publish the first (and only) psychotherapy textbook on CS. Her book included this comprehensive definition of caregiver grief, one which includes both the grief of people with serious, permanent, medical conditions and that of those who love them:
Chronic sorrow is a set of pervasive, profound, continuing and recurring grief responses resulting from the loss or absence of crucial aspects of oneself (self-loss) and another living person (other-loss) to whom there is a deep attachment. (2000, p29
At its core, CS is the grief resulting from resulting from an aching discrepancy between life as it is and life as it could or should have been had the illness or injury not occurred.
Since 2002, multiple research articles have continued to be published.


3.  Ambiguous Loss is the third concept to describe the unresolved grief of family caregivers It appeared in the literature in 1999, much later than Chronic Sorrow. The notion was developed by educator and researcher, Pauline Boss, PhD, with little or no knowledge of the prior CS research.  Arising from the study of families whose soldier relatives were missing in action, and then applied to the dementia and adoption fields, it describes the losses and grief related to caring for people who are physically present but psychologically absent or psychologically present but physically absent. Thus, the reality of the loss remains ambiguous or uncertain.

(I see this and the other concepts described here as subsets of Chronic Sorrow.)


4.   Non-finite Loss, our fourth concept, was developed by Bruce and Schultz in 2001 to describe the lifetime of continuous and insidious loss and grief experienced by parents of developmentally delayed children.  They focused attention on the parents' gradual discovery of the impact of illness or disability with the accompanying loss of hopes, dreams and expectations.  This term has also been applied to family caregivers of those with degenerative diseases such as MS, motor neurone disease and dementia. It has been used to describe the reactions of families with non-medical losses such as those with a relative waiting on death row as well.


5.  Pre-death Grief  is the fifth and final term to be considered here.  It was coined in 2014 to provide a standardized  definition of caregiver grief upon which to base professional theories and research questions.  Pre-death grief is defined as the caregiver's emotional and physical response to the perceived losses of a valued care recipient.


While facilitating workshops on caregiver grief, I tend to use the term, Chronic Sorrow. Why? Because, while the other terms all reflect important aspects of caregiver grief and there are logical reasons for their presence in the literature, they are all in some way incomplete. CS, on the other hand, has a specific, comprehensive definition that includes the grief of both patient and caregiver, it offers the clearest demarkation between pre and post-death grief, it has a long medically and psychologically-oriented research history, and, most importantly, it has the most immediate and profound emotional resonance with family caregivers.

When I ask workshop participants which term they prefer in describing their grief, they are emphatic, and usually unanimous, in choosing Chronic Sorrow.  It most accurately and empathically communicates their experience and that, it seems to me, is the single most important reason for choosing any terminology.

I'm hoping to offer a community workshop on Chronic Sorrow for family caregivers in Vancouver again next spring. If you think you might be interested in attending, just subscribe to the mailing list in the left hand column of the website and you will automatically receive a registration brochure.





Monday, January 14, 2019

NEW CF WORKSHOP: Compassion Fatigue: Going Deeper - Trauma, Spirituality and Resilience




Every moment is a fresh beginning...

TS Eliot




Hello, Everyone! 

A slightly belated Happy New Year to you all! I'm later than usual with my first post of the year because I have been pouring my creative juices into one of TS Eliot's "fresh beginnings", a new workshop designed to follow the now familiar Caring On Empty: Creative Tools for Compassion Fatigue Resilience.  

After Christmas, what began as the light revision of an earlier, second-level CF workshop turned into the development of an altogether new workshop, Compassion Fatigue: Going Deeper - Trauma, Spirituality and Resilience. It will be offered for the first time February 1st for the wonderful folk at Canuck Place Children's Hospice and again on June 7th in the form of a multidisciplinary community workshop at the Granville Island Hotel in Vancouver.  I'm so excited to be taking our basic CF understandings just a little deeper!

Spirituality is at the forefront of trauma research these days. There have been more research papers written on the topic of spirituality and trauma resilience in the past 5-10 years than in the previous 100. Why? I'm not really sure but I wonder if a general thirst for authentic, healthy, personal spirituality; psychology's recognition that it has too often avoided the topic; and the realization that our current trauma treatment strategies are not always enough, haven't led us quietly but steadily toward this research focus. 

You will find the following description of spirituality in several (unattributed) places on the Internet:

Spirituality is a broad concept with room for many perspectives. In general, it includes a sense of connection to something greater than ourselves and it typically involves a search for meaning and purpose. As such, it is a universal experience - something that touches us all. We all have spiritual experiences, whether or not we label them as such. Some people describe these experiences as sacred (connected with the holy), some as transcendent (outside the range of mere physical existence), and some simply describe them as a deep sense of aliveness and interconnectedness.

However we define or describe spirituality, we are learning that spirituality and trauma are often inextricably intertwined. Trauma affects our beliefs in the sacred/transcendent in ways that may interrupt or even jettison those beliefs. At the same time, or alternatively, trauma can affect us in ways that strengthen them. As a result, trauma recovery and resilience is inherently spiritual and must include a focus on our belief systems.

Christine Courtois, PhD, a respected, longtime complex trauma expert, says that a damaged spirituality is at the core of traumatic injury.  If this is indeed the case, we need to shine a brighter light on the role of spirituality in both perpetuating trauma and supporting its healing and resilience, something the field has been reluctant to do until relatively recently.

This new workshop is designed to introduce helpers to the topic of spirituality and trauma resilience and, through poetry, story, artwork, self assessment tools, mini-lectures and discussion, to help you to:

- Define spirituality, trauma and resilience
- Better understand the impact of traumatic stress on personal spirituality
- Clarify the role of positive personal spirituality in promoting resilience and vitality
- Reflect upon your personal state of spiritual wellbeing 
- Become better acquainted with a variety of practices found to promote spiritual wellbeing while working in high stress, high risk environments
- Consider ways of incorporating spiritual practices/activities in your personal resilience plan
- Review and use exercises learned at the Caring On Empty workshop to help you return to the Window of Tolerance during the day  

If you loved Caring On Empty, do plan to join us as we "go deeper" into our conversation about Compassion Fatigue resilience. (Registration brochures are available February 4 at caregiverwellness@shaw.ca)

Or choose to bring this new and engaging discovery-based workshop to your own organization!