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.


Kerri said...

Only one word...

Jessica Burke Church said...

Wow, yes - thanks! My wife died for 6 minutes 1 1/2 yrs ago, & it has been a very difficult road to recovery. Even people close to us told me maybe it was a good thing to let her go, since she couldn't remember me anyway... Never! God made her for me, & I am still thankful to have her in my life - even with the unfortunate brain damage she lives with today. Thanks for helping me see I am not alone! Sincerely, Shane G. Church