Book Review: The Comfort Garden - Tales From the Trauma Unit ...

I'm late posting this week after spending two days on the livingroom floor, resting and exercising a wayward lumbar disc back into place. While the view from the floor was not exactly exciting, the opportunity to read Laurie Barkin's award-winning new book, The Comfort Garden, was.

Laurie was a psychiatric nurse consultant on the surgical trauma service at San Francisco General Hospital for five years before leaving to heal her own vicarious trauma. Her book is a memoir of her work with traumatized patients; her relationships with her coworkers and family; her interactions with a healthcare system losing its way due, in part, to managed care and compassion fatigue; her own journey through the pain of secondary traumatic stress; and the healing and sustenance she finds in SFGH's Comfort Garden.

This is a book worth reading by anyone who works with traumatized people and their families. Between Laurie's compelling stories lie many insightful observations and pearls of wisdom:

There's a word for people like Rochelle: counter-dependent; people so phobic of being weak and dependent on others that they deny their own normal needs. Lots of nurses are counter-dependent, caring for others but unable to care for themselves or to allow others to take care of them. I should know. I'm one of them.

Too many of us nurses are bad about self-care. We're overweight; we smoke; we overwork; we slip into addiction. We're so used to being the helpers that we can't see when we ourselves need help.

I had begun to wonder if I was in danger of losing my grip; if the random trauma and human cruelty I've witnessed every day at work for the past four years has been affecting me because of some defect in my character. Now I know that it may have something to do with the dose of trauma I'm exposed to every week in the absence of enough support to ameliorate it.

Our director ... created a buoyant work environment and hired energetic and idealistic staff... he taught us to exaggerate and celebrate miniscule moments of success with our patients. I have applied that lesson to my work with all patients ever since...

I walk in The Comfort Garden when I need to clear my mind (of the trauma stories).

According to the most recent journal articles, people who dissociate in response to trauma are the most likely ones to develop PTSD. However, a good social support system can protect a person from developing PTSD. 

Resonance between people - the warm and responsive embrace between two souls - protects and heals us from the world's ills and makes possible its greatest bounties. 

From the point of view of style, I found The Comfort Garden an easy read but from a content standpoint, I was introduced to people and situations so authentic and well-drawn that I had to pause from time to time to pace my emotional response. That is not to say that Laurie uses gratuitous descriptions in her story-telling. Quite the opposite, in fact. There are few "gory details". Rather, it is her accurate depiction of unrelenting trauma exposure that took me back to my work in hospital settings and triggered familiar emotions.

The feelings I felt most strongly, though, as I finished this book, were those of gratitude for fine nurses like Laurie Barkin and hopefulness for a future that acknowledges the impact of secondary traumatic stress and strives to provide support and build resilience for all trauma workers.

This touching and inspiring story received the American Journal of Nursing Book of the Year Award for 2011 and it is deserving of the honour.

If you are interested in ordering a copy of The Comfort Garden, you can go to the online store at Moss Communications Publishing.

Baby Steps Toward a Healthy Heart ...

February is Heart Month and as a former coronary care nurse, a former cardiac spouse, and a woman-of-a-certain-age, I take a particular interest in heart health.

I've always rather prided myself on not having any of the risk factors for heart disease but over the past few years, since stopping running and power-walking due to running injuries in both feet, I've noticed my weight beginning to creep up and my waist circumference increasing. This week, while doing the Canadian Heart & Stroke Foundation Risk Assessment, I had quite a rude awakening - one that has motivated me to clean up my dietary habits and to find an alternate way of getting The Montreal Heart Institute's recommended minimum of 30 minutes  exercise a day.

I have decided to reduce my sugar intake (my Achilles heel - I'm the original cookie monster!) and to ride my stationary bike at intervals throughout the day when its too cold and wet to want to take my usual walk around the lake. These two changes seem small enough to be manageable, (we so often sabotage ourselves by taking on too much at once), and yet large enough to make a difference. I will report back to you on my progress in making these changes over the next month. (And, if anyone wants to join me in making some "babystep changes" toward a healthier heart, you're more than welcome to post your intention here.)

While perusing the Heart & Stroke Foundation website, I found a number of great resources including 10 healthy eating guidelines and some delicious heart-healthy recipes. On their February calendar there are different dinner recipes for each day of the the month, including a particularly good one for Hearty Tuscan Soup.

There are also many fantastic, flavourful recipes in two of my favourite heart-healthy cookbooks  -

1.  Lighthearted at Home: The Very Best of Anne Lindsay by Anne Lindsay

2.  The Best of HeartSmart Cooking by Bonnie Stern.

Whatever your current state of heart health, I hope you will join me in taking the Heart and Stroke Foundation's Risk Assessment and then in deciding, with your own health professional, how you want to optimize your cardiac health. (Another gentle reminder that those of us who care for others do better when we care for ourselves first!)

Keeping the Love Alive ...

While some people seem to regard Valentine's Day as a commercial venture best avoided, I tend to think of it as a yearly opportunity to be intentional about expressing your love and appreciation in your most significant relationships.

It is easy, when caring for others all day long, to arrive at the evening hours exhausted, depleted and less than interested in conversation, let alone the amorous expressions of your significant other. The observance of Valentine's Day (or week), can offer a focused opportunity to begin to renew your connection with your loved one.

Research over the years has taught us that the work of physicians, nurses, psychotherapists, police, lawyers, clergy, and other professional helpers can have a profound impact on primary relationships. And a survey of 300 + family caregivers, published today at caring.com, revealed that although some believed that caregiving had enhanced and strengthened their relationships, 80% of respondents felt that caregiving had strained their relationship, 89% said that caregiving had kept them away from their spouse, 48% said that caregiving was causing them to drift apart, 46% felt that it was having a negative impact on their romantic relationship and 34% thought it had taken a toll on their sexual relationship. Harsh numbers, indeed.

So, how can we begin to re-pair our heart connection with our partners? It can be surprisingly simple, though not necessarily easy.

1.  Take care of yourself so you have the energy to nurture your relationship. Think back over the past year and acknowledge the times when you have really cared for yourself. (Don't be critical if there aren't too many. Just see today as a starting point for improving your self care.)

2.  Talk and listen to each other. Make space and time to reconnect with each other every day - even if it's only for a few moments. Protect that space and time. Reach out to each other, vent, and talk about your feelings, problems, expectations, frustrations and appreciations.

3. If possible, create a regular pattern of getting away together so you can connect at a deeper level - being geographically away from the sources of your stress can do wonders for your perspective. If you can't get away, create a vacation at home (or at a friend's home while they're away). Unplug from the electronics, don't answer the phone, eat delivery meals or cook together, watch a DVD, nest. (Remember to tell your family and friends that you're taking a break so they don't go into a in a state of panic when they can't reach you.)

4.  Get help with the responsibilities that drain energy from your relationship. Together, identify the top three or four drains on your relationship energy and brainstorm out-of-the-box ways of getting help. I spoke with a young woman recently who said her hectic life as the young mom, dancer and choreographer, and family caregiver had eased considerably when she and her husband decided to get a bookkeeper to handle their business books, to ask a local nursing student to babysit one evening a week for date night, and to share the housekeeping and baby care more evenly.

5.  Pamper each other. Do one small thing to pamper each other every day whether a neck rub, drawing a bath, buying coffee or a glass of wine to share in the garden, putting a love note in a bag lunch, breakfast in bed, making or going out for a special meal, offering to do one of your partner's chores, getting a massage together, going for a walk without the kids. If your partner is ill, he or she can recruit a friend to bring a selection of cards or gifts to your home to choose something for you on special days. Or try online shopping.

6. Remember that there's more to sexuality than intercourse. Even if you're seriously depleted or your partner is ill, you can still express your love physically. Spoon, hold, cuddle, stroke, touch each other tenderly without the expectation of intercourse, allowing loving closeness to be the goal.

7.  Take time to reflect upon your lives together. Remember the hurdles you've overcome and the pleasures you've shared. Visualize all the threads of memory that tie the two of you together. Early in my husband's illness we recognized that, in all the stress and grief, we might lose track of some of these stories, so we bought a beautiful "memory book" and wrote down, in detail, all the happy memories we could think of in our years together. It's now a wonderful gift to look back on on Valentine's Day.

8. If the loss of your loved one's cognitive abilities or the loss of the love in your relationship or the lack of a romantic relationship altogether makes you hate the very thought of Valentine's Day, tell someone you trust about your feelings or write about them in your journal or burn them out in some physical activity. Expressing them will usually bring some relief. Consider giving yourself a gift of flowers or chocolate or a spa certificate. Start a tradition of sharing time, cards, or small gifts with a friend or family. (My sister is taking me out to Barbara-Jo's Books to Cooks, tonight, for dinner and a lesson on cooking for one!)

Valentine's Day will mean something different to each of us but I wish each one the opportunities to make it a happy day.                  

A New CF Resource for Helping Professionals ...

I have just finished reading my friend and colleague, Francoise Mathieu's, new, revised, and expanded edition of The Compassion Fatigue Workbook and it's a keeper.

Written in Francoise' trademark bright and informal style, the book synthesizes basic compassion fatigue theory from experts such as Charles Figley, Beth Stamm, Eric Gentry, Anna Baranowsky, Babette Rothschild, Laura Lipsky, Laurie Anne Pearlman and Karen Saakvitne, and others.

In addition, she offers sage, practical strategies for reducing CF risk and increasing CF resilience including the use of low-impact disclosure in informal debriefings, tracking stressors, improving work-life balance, self-care, relaxation and stress reduction, and committing to change.

This workbook will be particularly useful to helpers at the beginning of their professional lives, as they establish healthy patterns for sustaining themselves in their work. It will also appeal to those of us who are of sufficient years to have missed newly-discovered CF information in our original training programs.

So, congratulations to Francoise!  And, if you're interested in purchasing a copy of her workbook, you can go to her website store and find one there. Enjoy!

Chronic Sorrow III: 12 Ways to Live More Comfortably With CS

Welcome to the last in a series of three posts on Chronic Sorrow.

While I don't believe that Chronic Sorrow (CS) can be cured, aspects of it can be healed and we can learn to live more comfortably in its presence. I will share some strategies here that have worked for me and for others in my workshops, hoping that some of you will do the same. The more we share our positive experiences, the more comfortable we can all become.

I do have one caveat though. CS is such a complex and individual experience that what eases life for one will not necessarily work for another. So, please do pick and choose the ideas that feel right for you and adapt them to fit your needs.

1. Acknowledge the natural sorrow that comes with your life situation and treat yourself with all the compassion and care you would a grieving friend.

2.  Tell your family and friends about CS so they can have realistic expectations about your sadness and their ability to "fix it". Also, let them know what helps you most when you're grieving.  (Personality type and other factors make a difference to what we might find helpful.)

3.  Form a support team of two or three trusted people whom you can contact 24/7 for emotional and practical support if your grief or trauma symptoms are intense. (Discuss boundaries around late night calls.) Post their phone numbers by your landline and on your cell and carry their email addresses with you. You may use the individuals on your team rarely, but knowing that they're available can make all the difference.

4.  Anticipate predictable grief and trauma stress points and arrange the option of extra support in advance. It is often the days prior to an anniversary date, medical procedure, assessment, or family celebration that are hardest so call your supporters several days ahead with a heads up.

 5.  Remember that you may have trouble thinking clearly or concentrating when the grief is intense so be particularly careful if you're driving, operating machinery, giving medications or treatments, or making important decisions. 

Write down important things in a small notebook so you can remember them. (Where did I put the insurance numbers? Who do I call about respite? Is it time for a physical? ...). Put a hook in the wall and place your keys there every time you enter the house. Never let your gas tank get below 1/4 full. Place a large calendar on the wall by the phone for everyone's appointment and activity times. 

6.  Exercise regularly to reduce stress and to increase endorphin levels. A daily walk in the fresh air is one of the best gifts you can give yourself, even if it's only around a tree in the garden.

7.  Spend time quietly in nature whether in your back garden, at a nearby park or walking in the woods. Allow the changing rhythms of the seasons to give you a message of hope for better hours or days ahead.

8.  Consider seeing a therapist who will companion you through the CS - not because you are "sick" and in need of "treatment", but because therapy will afford you an hour of time to focus entirely on yourself  with someone who will not be personally affected by your grief. (I found, when my husband was ill, that when I attempted to share my sorrow with family and friends, it often triggered their grief and I ended up comforting them.). 

In my opinion, when looking for a therapist, people with CS are well served by someone whose basic orientation is one of parity and companioning; who understands CS (or is willing to learn about it); who has an eclectic theoretical background and experience in grief work, trauma work, and, if possible, bodywork; who is flexible, compassionate and empathic and who can allow the client to determine his or her own goals.

9.  Find safe and personally congruent ways to express the sadness.  CS is a complex, and often complicated, experience that can carry intense feelings - emotions that sometimes seem overwhelming if felt and expressed all at once, without regulation or pacing. 

Some people have had the opportunity to learn healthy ways to self-regulate strong emotions. Others haven't. If you are one of the ones who hasn't, a good grief and trauma therapist, especially one who offers both talk therapy and bodywork such as Somatic Experiencing or Sensorimotor Psychotherapy, can teach you those skills.

Once you know how to regulate and, thus feel safe with, your feelings, choose ways of expressing the sadness (and other emotions) that fit best for you - writing a journal, talking with your loved one or a friend or therapist, painting, poetry, music, dance, prayer. The list is endless.

Sometimes services designed to help us grieve can exacerbate the grief instead. So, if you attend caregiver workshops or retreats, participate only in exercises that feel structured and safe. ie those that approach only a small piece of your loss at a time and that leave you feeling less anxious rather than more.

10. Cry if you want to.  In North America, we live in a culture that gives us mixed messages about what to do with our tears. The self-help movement tells us to "feel, feel, feel" and yet many social settings and cultural traditions tell us to hold our tears until we can cry alone - or to be stoic and not cry at all. 

As caregivers with CS, we need to be able to chose what to do with our tears each time they surface. Sometimes we will want to cry spontaneously and uninhibitedly in the moment, other times we will want to wait until we are alone, yet other times we will choose to use busyness as a distraction so that we won't cry at all. There will even be days when our chests are bursting with unshed tears and, perversely, we'll find that we can't cry.

There is no single "right" answer to the question of crying. Do what feels right at the time. And if you find you can't cry and want to, try using a sad movie, poem or music that has made you cry in the past, to trigger your tears. (I used the movies, Truly, Madly, Deeply; Shadowlands; and A Rumour of Angels, several times over the years to trigger my own tears and ease the tightness in my chest.)   

11. Try writing a gratitude journal. Writing a gratitude journal, (ie writing down 5 things every night for which you've been grateful), will not take the sorrow away but it will help to balance the sadness and, slowly, to balance your perspective.

There is a double "giftedness" in writing a gratitude journal - first, a change in outlook, and secondly, after the care-recipient's death, a recorded history and legacy of many of the small, positive moments in your life with your loved one.  

12. Nurture your spirituality.  (Here, I define spirituality as one's relatedness to oneself, to others, to the world and universe, and to one's Higher Power.)

If possible, carve out daily time for quiet and stillness; pray or meditate regularly according to your personal practice; use this illness or injury as a time to learn about receiving, making meaning, forgiveness, acceptance, trust, equanimity, gratitude, compassion, peace, grace, hope; discuss the difficult existential issues that arise in care-giving with a wise elder, trusted spiritual leader, or therapist; find ways to tell your story to yourself and others; read or listen to material that nurtures and inspires you; live in the present as much as you can, drawing wisdom from the past and hope from the future.

    

This short list is just a beginning. We would all like to know what has worked for you as you've learned to live more comfortably with CS. Would you take a moment to share your discoveries with us?

If you would like to learn more about Chronic Sorrow:

1.  Read Susan Roos' book, Chronic Sorrow: A Living Loss  (This is a psychotherapy textbook and a little dense, but well written by someone who understands CS both personally and professionally.)

2.  Read the research of the Nursing Consortium for Research on Chronic Sorrow. 

3.  Call or email me to inquire about booking a CS talk, workshop, or retreat:  

       Jan Spilman at (604) 297 0609 or caregiverwellness@shaw.ca

 

                

Chronic Sorrow II: Characteristics of CS ...

Hi everyone - I have to say I've been quietly amazed and very pleased to see the large number of views the first post in this series has received. People seem to have found a strong resonance with their personal experience. Thank you to each of you who commented or emailed, sharing your stories.

Today, I'd like to share with you the 12 characteristics of CS in family caregivers that Dr Susan Roos, PhD shared with me when I first started to learn the theory behind my own Chronic Sorrow:



1.  CS is a nonpathological grief response 

Chronic sorrow is not about mental illness or pathology. It is a normal grief response to a significant living loss for which there is no foreseeable ending. If CS is not complicated by other issues such as PTSD or depression, there is generally no need for medication. Family caregivers can do very well given information about CS, empathic companioning and, if in therapy, appropriate therapeutic goals. 

2.  The grief of CS is largely disenfranchised

Disenfranchized grief is grief that is not recognized or acknowledged by others. In CS, this lack of recognition can be found in our families, in our professional helpers and in the wider community. Few people or institutions realize the impact of the catastrophic loss at the core of CS. 

Because CS is disenfranchised, there are no formal rituals to help CS sufferers through crises or milestones, no naturally expectable supports for those experiencing CS, no self-help books to explain the symptoms. (Though the positive response to the last post has motivated me to dust off a partially-written manuscript of a small book on CS for family caregivers!)

3.  There are 2 types of CS loss: self-loss and/or other-loss

To keep our understanding of CS clear, Dr Roos uses the term self-loss to indicate the grief of those who have lost significant aspects of themselves, and other-loss to indicate the grief of people who mourn a loved one's losses.

4.  CS usually has a traumatic onset

Our journey with CS often begins with a traumatic event, whether that event is a traumatic injury or the trauma of receiving a loved one's life-changing diagnosis. Thereafter, people can experience trauma or emotional wounds over the course of a lifetime with a permanent impairment.

We know that at least 10-25% of those who experience a traumatic event go on to develop posttraumatic stress (PTS). When this happens, we say that CS has become complicated by PTS.

Some signs that you might be experiencing traumatic stress include prolonged irritability, exaggerated startle response, restlessness, intrusive thoughts and feelings related to the traumatic event, flashbacks that get triggered by things that remind you of the event (for example, hospital smells, ambulance sirens, certain words or facial expressions, a particular location or person), overuse of substances or activities in order to help your mind and body feel more comfortable, social isolation, or emotional numbing. Each subsequent crisis in the illness/injury can become a trigger for a resurgence of these traumatic stress symptoms.

5.  The core loss of CS is ongoing, without foreseeable end

Because the condition causing the grief is unending, so is the sorrow.

6.  There are constant reminders of the loss

Reminders of the loss are everywhere - in the medical equipment that fills your home, in the health care appointments that fill your days, in comparisons with the "normal" lives of those you see around you, in the celebrations and milestones you won't enjoy, in the plans and goals you won't accomplish, in the multitude of "small" changes that revise your life, in the photos and memories of "life before".

7.  Permanent adaptations or resolutions are not achievable

Because there can always be a deterioration in a care-recipient's condition and because the family is a dynamic, ever-changing system, there can be no final and permanent adaptation to the loss of health. The best adjustment we can hope for is a flexible adaptation to the unpredictability of our new lives.

8.  There is a periodic resurgence of the intensity of the grief

Every time our fantasy of what-should-be or what-could-have-been is activated, our sorrow deepens. The disparity between our wished-for dream and the harsh reality is highlighted and we can grieve with all the intensity of the early days of the loss.

9.  There are predictable and unpredictable stress points

There are a number of predictable stress points in life with CS, times when stress increases and grief intensifies. They include the time of initial diagnosis, times when your loved one no longer meets developmental milestones, onset of puberty, during discussions about placement in residential settings, at times of deterioration of the chronic condition, and during discussions related to the death of the care recipient or guardianship after the death of the caregiver.

More unpredictable are the crises related to unique aspects of your loved one's condition - the blocking of a hydrocephalus shunt, infection in a dialysis catheter, failure of a cardiac stent and others. As Dr Roos says, these stress points are: 

... unpredictable, episodic, and draining, usually mandating decisions and action, and they compete with other priorities of living. They differ from stress points in other types of grief and bereavement, where stress points are nearly always predictable (anniversaries, certain holidays, and so on), and where they can be anticipated and prepared for. Although they can be very upsetting, stress points and emotional resurgence in grief and bereavement relative to death or finality rarely require crisis management, that is, urgent and critical decision making.

10.  The affected person continues to function

Despite the ongoing grief and trauma of life with a loved one's permanent impairment, most family caregivers continue to function at a relatively stable level - even when fatigue and sadness are intensified. Their feelings of responsibility for their loved one's care can motivate continued functioning even when the small voice inside them whispers words of exhaustion and the desire to escape.

11.  CS is not a state of permanent despair

Contrary to the perception of many who have not been caregivers, CS is not an unrelieved state of hopelessness and pain. In fact, living close to the edge of life with someone you love can be a source of grace, joy, meaning and a deep appreciation of and gratitude for the ordinary experiences of life.

12.  Transformational processes are possible within the context of CS

Through the experience of healing (not curing) CS, family caregivers can resolve PTS symptoms, develop wisdom and maturity, create a refined appreciation for life, and grow in spirituality and meaning. Relationships can grow and an exquisite intimacy can flourish.

I hope these 12 characteristics have fleshed out the notion of CS for you. In the third post, we will focus on strategies for living more comfortably with CS - if you have suggestions to offer of things that have helped you live more comfortably, please do add them to that post as a way of supporting others who journey along side you.

Chronic Sorrow I: What it Is & Who is Affected ...

Early this week, I received two emails from family carepartners asking for more information regarding Chronic Sorrow (CS). As a result, I've decided to expand an earlier post over the next three blog posts, focusing on three particular areas - what CS is and who is affected, the characteristics of CS, and how to live with CS more comfortably. I hope this series will help to normalize the experience of family care-givers and to broaden the understanding of those who support them.

What Chronic Sorrow Is

Chronic Sorrow is the natural, yet often unrecognized or misdiagnosed, recurrent and continuing grief that can be experienced by people with permanent impairments and those who love them. It is my hypothesis that it is also one of the factors (along with primary traumatic stress, secondary traumatic stress, burnout and moral distress)  contributing to compassion fatigue in family caregivers.

Many family caregivers describe CS as an ever-present foundation of sadness underlying the ups and downs of everyday life. The sadness sometimes hovers outside our awareness and at other times we are plunged deeply into its intensity, triggered by a new loss, an anniversary date, a missed developmental milestone, a family celebration, an awareness of others' "healthy" lives, or the illness or injury of another loved one.

CS is, essentially, ongoing grief over a continuing living loss. It doesn't resolve over time but lasts, with recurring intensity, until the death of the care recipient. At its core is the aching discrepancy between life as it is and life as it should or could have been.


What Chronic Sorrow Is Not


CS is neither a type of bereavement, complicated grief, nor clinical depression though it will eventually lead to bereavement, and can be the forerunner of complicated grief or depression.

Unlike bereavement, CS is continuing grief about the condition of a living person, grief that does not diminish or lighten over time. 


CS is usually pervasive, affecting more areas of our lives than complicated grief. Almost no aspect of life is untouched by CS whereas, in complicated grief, it is likely that the sadness arises from a more discrete aspect of the loss.

CS differs from clinical depression in that the CS sufferer, with a history of a continuing living loss, usually remains relatively functional, lacks biological symptoms like characteristic sleep disturbances, and generally recognizes when he or she has crossed the line into depression.

People with CS also tend to have a range of spontaneous feelings and the ability to express those feelings in their relationships. Their sadness is intermittent and often situationally influenced rather than arising from a consistently depressed mood. Most retain the ability to experience appreciation, gratitude and pleasure, sometimes more than the average person due to the exquisite perspective that can come from companioning a loved one at the edge of life.


Who is Affected?


The concept of CS was introduced in 1962 by American social worker and child advocate, Simon Olshansky, to describe the normal grief responses of parents to their child's severe developmental disability. His compassionate description of their sorrow came at a time when, according to American psychologist, Susan Roos,  "... the professional community...often viewed them as difficult, morose, neurotic, self-pitying and unaccepting of their child."  Since then, the term has been expanded to include people with a variety of chronic conditions and their family and friends.

Even more recently, (while trying to guard against overuse of the term), mental health professionals have included in this category others suffering a continuing, living loss. These others have included families of MIA's, POW's, runaways, the kidnapped, and the adopted in closed adoptions. Here, families have been left with an ongoing grief and uncertainty regarding their loved one's location and condition.

Now, CS is not found in all families where there is a continuing living loss. For example, in some belief systems and faith traditions, people believe that whatever happens in life is "fate" or "God's will".  In  such cases, they don't experience the core discrepancy between how life is and how it should or could have been - life is how life was meant to be - and, thus, they don't experience the ongoing grief in the same way.