Care for Caregivers: Talking About Ambiguous Loss

"There is no grief like the grief that does not speak." - Henry Wadsworth Longfellow

 Loss comes in many forms, but there is a certain kind that often goes undiscussed despite how deeply it impacts caregivers. This experience is called ambiguous loss. Often, one does not hear the words, "I'm sorry for your loss," until a loved one has passed away. Before that happens, though, we can experience loss of the relationship we once had with a loved one -- before their health changed, routine changed, brain changed, etc. Though they are still alive, there may be understandably drastic changes in who they are and how you can relate. 

The Alzheimer Society describes how, as a caregiver, you may grieve: 

• The loss of your dreams and plans for the future 
• The loss of a confidant and partner 
• The loss of shared roles and responsibilities 
• The progressive losses in the life of the person within your care 

Without words to describe this experience, caregivers can become isolated without the care and support they deserve. That's why therapist and author, Pauline Boss, coined the term "ambiguous loss" over 40 years ago to describe situations where someone we care about is "physically present but psychologically absent." A loss with a "lack of information or closure." (Sources: Ambiguous Loss Pioneered by Pauline Boss and The Cleveland Clinic). Learning about ambiguous loss can help us honor our grief, care for ourselves, and support those we love. 

Ambiguous loss can impact anyone and grief looks different for everyone. Here are some ways that caregivers and their families have built hope and resilience through ambiguous loss, as described in The Alzheimer Society’s resource for individuals and families dealing with Ambiguous Loss and Grief in Dementia: 

• Normalizing & acceptance: Putting words to your feelings and talking about them with others "can help you understand your losses and grief, and see that this is a normal and valid response to a disease that changes the person over a period of time." It can help to feel less alone, "knowing someone is truly listening to and acknowledging your concerns." 
• Grieving the losses along the way: "Grieving is a normal and healing response to loss.” Caring for a person with dementia involves an ongoing process of grief and loss, “not a one-time trauma.” As a variety of changes happen, “it can be helpful to identify and acknowledge the losses, and turn to your circle of support to talk about your grief in response to these events." 
• Honoring different grieving styles: “Each person grieves losses in their own way.” Some people prefer to grieve through “feeling,” where it may be helpful to share their feelings with a supportive listener or peer support group. On the other hand, some people prefer to grieve through “doing,” where it can be helpful to “get practical information, find solutions to problems, or do things for yourself and the person with dementia.” Many caregivers find it helpful to incorporate parts of “feeling” and “doing” styles into their own grieving process. 
• Reaching out to your circle of support: "These are the individuals who may be able to understand the losses and grief you are experiencing, acknowledge your remarkable efforts and successes, and give vital support." This might include a diverse group of: friends, neighbors, co-workers, faith leaders, family members, peers at a support group, a counselor or therapist, staff at an adult day program or long-term care home, a geriatrician, family doctor or other healthcare provider. The right people who "get it" can help you "understand and grieve the losses, and learn how to ease their effects."  See the rest of this newsletter for information on support groups and call the Aging Helpline at (919) 968-2087 to request a list of community-recommended therapists. 

For more details on building resilience through ambiguous loss and personal quotes from caregivers, see the full Alzheimer Society’s Resource. There is no one "right" way to grieve and yet you’re not alone. Sending care to all caregivers – you help make the world go 'round! 

This month's article was written by Karlie Kemper, one of three social work practicum students working with OCDoA's Aging Transitions team this academic year. Karlie is a second year student with UNC's 3-year MSW Program.

FREE Nutrition Supplements

If you have NC Medicaid, you may be eligible to receive free oral nutrition supplements, like Boost or Ensure. Contact the Aging Helpline for more information at 919-968-2087.