Caregiving for a loved one can cause stress in many ways. To manage the stress—which we know can be dangerous to a caregiver’s health—we must first know what the problem is. Surprisingly, many caregivers of individuals with memory disorders or dementia report that the main problem is not the illness itself, but the ambiguity and uncertainty it causes.
It’s a difficult challenge to care for someone who is here, but not here—here physically, but gone mentally and psychologically. You feel alone, and in some ways, you are. For many caregivers, it’s as if there’s a stranger in the house.
Adding to the stress, disorders such as Alzheimer’s disease or traumatic brain injury cause unpredictable memory loss that comes and goes—one moment here, the next moment gone. This roller coaster of absence and presence is a very stressful kind of loss—what author Pauline Boss calls ambiguous loss. Unlike death, there is no closure, no official validation, and sometimes little community or religious support. You feel you are left to cope on your own; even the strongest caregivers feel anxious and depressed. The challenge is to learn strategies to cope with this ambiguity that is so much a part of memory loss.
Symptoms of Overwhelming Stress
Caring for someone with a cognitive impairment—and the ambiguous feelings that arise—can create a constancy of sorrow that can immobilize caregivers. For example, decisions are put on hold, tasks pile up, chores delayed. Doubt, confusion, helplessness and hopelessness set in, and caregivers can feel anxious and depressed. Friendships are in limbo as caregiving takes more and more of your time. Conflict increases with spouse, children/stepchildren, siblings. Family gatherings and rituals that were the glue of enjoyable family life are cancelled or changed. When a caregiver feels increasingly isolated, the possibility of depression, anxiety, abuse, guilt, shame, lack of self-care, illness or substance abuse increases.
Tips for Coping with the Ambiguity of Memory Loss
To manage the stress of caregiving, try to connect with other people: if possible, join a support group either in person or on the Internet, attend a book club, social event, or faith-based group. Here are some ideas, questions and tips to help: 1. Name your problem.
2. Practice both/and thinking.
Here are some examples:
“I am both a caregiver—and a person with my own needs.”
Now add your own examples. “Both/and” thinking may come faster if you practice with another person.
3. Know your “family” and community information and support systems.
4. Continue—but revise—family holidays, celebrations and rituals.
5. Revise family roles.
Finally, based on roles, think about how you see yourself now. You might ask: Is it right for me to take time off to go out with friends when my spouse is suffering from Alzheimer’s disease? Do I still feel like a son or daughter or more like a parent to my parent? If my spouse has memory loss, do I still feel married? How should I act?
6. Be aware of family rules.
7. Understand that anger and guilt are normal, but avoid harmful actions.
8. It seems contradictory, but imagine something new to hope for.
Given the stress from caregiving and the ambiguity of memory loss, what can you plan for the future that is clear and certain? How about an outing, a firm date for dinner with a friend, a hobby that has clear outcomes, a TV program that you clearly enjoy? New hopes and dreams will emerge when you can balance the ambiguity with some activities that have clear outcomes, no matter how small.
9. Check on your own health.
When you are a caregiver for someone with memory loss, the stress of ambiguity adds to the usual pressures of caregiving. You have a duty and a right to take care of yourself.
This Fact Sheet is a caregiver’s guide to managing the extra stress from ambiguous loss. To sum it up, think of managing the ambiguity as learning to walk in the fog. Keep moving forward, despite the stress of not knowing what lies ahead. But at the same time, reach out for support and human connections to stay resilient and strong.
About Ambiguous Loss. See www.ambiguousloss.com/about_ambiguous_loss.phpBoss, P. (2000, paperback). Ambiguous loss. Cambridge, MA: Harvard University Press.
Boss, P. (2006). Loss, trauma, and resilience: Therapeutic work with ambiguous loss. New York: Norton.
Bayley, J. (1999). Elegy for Iris. New York: St. Martin’s Press.
McKeithen, M. (2006). Blue peninsula: Essential words for a life of loss and change. New York: Farrar, Straus, and Giroux.
Schulz, R., & Beach, S. (1999). Caregiving as a risk factor for mortality: The caregiver health effects study. Journal of the American Medical Association, 282(23), 2215-2219.
Sparks, N. (1996). The Notebook. New York: Warner Books.
Film adaptation: Cassavetes, N. (Director), Harris, L. (Producer), & Johnson, M. (Producer). (2004). The Notebook [Motion picture]. New York: New Line Cinema.
TeleCaregivingsm Workshop Audio Archive
Here but Not Here—Finding Hope When Your Loved One Has Memory Loss (Podcast)
Caregiving and Depression
Caring for Adults with Cognitive and Memory Impairments
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Family Caregiver Alliance