On Nov. 14, I listened in to a tele-workshop sponsored by California Caregiver Resource Centers called “Here But Not Here: Finding Hope When a Loved One Has Memory Loss.” The speaker, Pauline Boss, PhD. offered some insightful suggestions to the many caregivers on the call dealing with loved ones suffering from some sort of memory-loss condition.

Boss discussed the concept of ambiguous loss which occurs when one cares for someone who has had a prolonged illness or serious memory impairment, such as Alzheimer’s disease, stroke, Parkinson’s disease or Traumatic Brain Injury. Family members may begin grieving the loss of the person’s “former self” long before the time of death and this can be just as painful as losing a life. This ambiguity, in that the person is still alive but not necessarily here, can hold back a caregiver, confuse decision making, and block coping. The possible effects on a caregiver are significant: depression, anxiety, guilt, shame, illness, lack of interest in self-care, substance abuse and elder abuse.

In response to this problem, Boss provided six guidelines for finding resiliency and discovering hope in the mist of stress and uncertainty:

Find Meaning: Find a way to meaning in your life. She recommended an exercise called “both/and” thinking. This is where the caregiver writes statements such as “She is both gone -and still here,” “I am both a caregiver -and a person with my own needs.” Such statements can help cope with ambiguous loss. A caregiver can also look to spirituality, practice forgiveness, do small good works, and implement or change family rituals to help find meaning.

Recognize you have less control over your life: Recognize that the world isn’t fair; stop blaming yourself for what’s happened with your loved one - blame the situation and disease instead. Meditation and prayer are also suggested activities to help with this guideline.

Who am I now?: Redefine family and marital boundaries. Determine who plays what roles now given the situation. Boss told the audience about a story where a woman redefined her role with her husband (who had Alzheimer’s and often didn’t remember her) by discontinuing to wear her wedding ring while she continued to care for him. This helped her define her role as caregiver and less as wife. After he died, she put the ring back on and went back to her role as grieving wife. This helped her cope with the loss.

Mixed Emotions: Nothing is ever black and white especially with ambiguous loss. The more one can cope with and recognize that he/she may be angry, sad, and even hopeful all at the same time. Conflicted feelings are normal and talking about them with someone can be very helpful.

Letting Go While Hanging On: Find new human connections while recognizing that your loved one is both here -and gone. Grieve what’s lost, celebrate what’s still there.

Discovering Hope: Find or rediscover your spirituality, increase your comfort with ambiguity, laugh more, redefine how you perceive justice (life isn’t fair), find forgiveness, imagine new options and dreams for yourself, and try to feel good about yourself even if things aren’t going your way.

Ambiguous loss is the most difficult loss because there is no closure unlike death. It requires we do dual thinking - “There is both the anxiety of no closure AND the opportunity to move forward with new hopes and dreams.” Ideas about this topic can help a caregiver process his/her loss and find new hope.

Additional resources:
www.ambiguousloss.com
www.californiacrc.org

Filed under: Alzheimer's, Caregiving