Wednesday, January 25, 2012

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


Saturday, January 21, 2012

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.

Tuesday, January 17, 2012

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.


Monday, January 2, 2012

Your Special Word for the New Year ...

Most of us are used to making (and breaking) resolutions with each New Year - I'll lose some weight, I'll exercise more, I'll have a better balance between life and work. This year, my friend, Elaine, told me about a different way of approaching the New Year - a practice of finding a special word to guide your year.

This practice is rooted in ancient times when certain men and women left their homes to live in the desert where they gathered in small communities and dedicated their lives to spiritual and psychological growth. This time in the desert was seen as a threshold time - a time of refining and transformation from which one emerged altered in some way.

As these desert abbas and ammas (desert mothers and fathers) grew in wisdom and wholeness, they were often asked by others for "a word" to guide the others' growth - a word to ponder and reflect upon  throughout the year or throughout an entire lifetime. According to spiritual teacher, Christine Painter, PhD, one's word was something "to nourish, to challenge, to wrestle with and to grow into".

The New Year's word is like a seed that invites you to cross a threshold. With continuing attention - through contemplation or prayer, reading, thoughtful reflection, journalling, expressive arts, or conversation -  it ripens slowly, changing your life, your attitudes, your beliefs, your feelings, your ways of be-ing.

In modern times, spiritual teachers suggest that, rather than making an intellectual word choice in order to "improve yourself", it can be more helpful to allow your word to choose you. Christine Painter suggests a number of ways of doing this:

1.  Discovering your word isn't about a cognitive process of choosing the "right word". Rather, it is an opening of your consciousness to receive an intuitive gift. "The word (or phrase) is one that will work in you rather than you working on it. Remember that a word that creates a sense of inner resistance is as important to pay attention to as one that has a great deal of resonance."

2.  Ask a soul friend, spiritual teacher or wise elder for your word, as in the desert tradition. (Remember to give them time to contemplate which word fits best.)

3.  Create a retreat of a few hours, uninterrupted, to be still and silent, to journal and to reflect upon the year past.  Write about your dreams and desires for the year ahead. Notice whether a word, image or phrase arises in your mind.

4.  Go for a contemplative walk. Notice Nature and listen to hear whether she has a word to offer you.

5.  Listen to your dreams and consider whether their images hold a word for you. Also, pay attention to the day's synchronicities - are there repeated images or words?

6.  Allow time for the word to ripen slowly:

"If you hear a word calling, sit with it for a couple of days. ... Eventually there will be a tugging inside you, where you feel yourself drawn again and again to this word. ...  Allow yourself to be in a space of unknowing. ...  This is a journey of transformation and the word may not make immediate sense to you, but trust that over time more of its meaning will be revealed."

I'm quite excited to have found "the intuitive gift" of my New Year's word for 2012. My word is act and it has great meaning for me, being one who can be overly cautious in putting my creative ideas into practice. By the end of the year, I hope to have been transformed in some way by my attention to the nuances and levels of meaning in this "word that has chosen me".

If this practice appeals to you as a way to greet the New Year, and if a particular word "finds you", why not  drop by and leave a comment here to encourage others to find their own?

Happy New Year, everyone!