Transforming from the Embedded Grief while Providing Ongoing End-of-Life Care

March 10, 2015

 

    How do we endure an “ongoing funeral” or “living death” while caring for a family member stricken with a lengthy, progressive, debilitating illness such as Parkinson’s, MS, ALS, Acquired Brain Injury, Alzheimer’s/Related Dementia, etc?  We often hear that to endure and maintain resiliency, it is best to have a healthy lifestyle which includes a good diet, rest, education, and utilizing available supports.  What we often do not hear is about the series of losses that family care-givers experience while on the end of life path. These losses can impact their well-being, affecting their ability to carry out the care-giving role.  Making a conscious effort to acknowledge, assess and assist in addressing the losses and grief can contribute towards moving forward with strengthened resiliency.

 

     Experiencing the “living death” and “ongoing funeral”, caring for a progressively ill family member raises other questions as well. When does End of Life Care begin? Does it begin years prior to the actual physical death? If this is the case, when does the grieving process begin for the families providing care, travelling on the path alongside those afflicted?  

 

     It is prudent to start early in addressing the family member’s loss and grief stemming from having a chronically ill parent, spouse or child. Processing the grief from situational losses that stem from the illness plays a big part in strengthening resiliency.  The grief can easily get overlooked since the losses are ambiguous and the grief is disenfranchised, buried under the care demands. Overlooked also due to the fact there has not been a physical death.

 

     We live in a culture where grief is automatically associated with death. In addition, our tolerance of grief is low. Tears and emotional display are discouraged, considered a weakness and many people are uncomfortable with it. We are expected to “move on” shortly after the death. As a result, the emotional turmoil brought on by loss gets easily buried and repressed.  

 

     If the grief experienced following a death is only acknowledged as a brief encounter, how can the disenfranchised grief that caregivers experience get any acknowledgement?  It can be detrimental to possess such a narrow perception of grief since there are so many circumstances of loss that are not death related – loss of a job, a relationship, finances – all of which can also occur stemming from the loss of family members to chronic illness.  By broadening our perception, we gain access to grief intervention, the tool for addressing loss. Intervention entails processing the grief, heightening the chances of bringing back the hope and faith that may have been lost due to the struggles being faced.

 

      In order to assist in raising awareness and addressing caregiver grief, Eleanor Silverberg developed the 3-A Approach: Acknowledge, Assess, Assist. These components operate simultaneously in identifying the losses, grief reactions and coping behaviors. By being cognizant of the loss context, one can intervene using this approach to work through it, assisting care-givers or ourselves as care-givers to make the changes required to move forward with strengthen resiliency and well-being....

 

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Updated October 2019

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