Understanding Ambiguous Loss & Changing Roles in Caregiving
Caregivers live with a painful paradox – grieving what has changed while still loving the person who physically remains. This experience is an example of ambiguous loss.
The term “ambiguous loss,” coined by family therapist Dr. Pauline Boss, describes loss that is unclear and lacks resolution or closure. Once the "losses,” or changes, associated with dementia and other chronic conditions begin, they do not end.
Understanding this type of loss can help caregivers make sense of their emotions and show greater compassion for themselves and loved ones living with dementia.
How Ambiguous Loss Shows Up in Caregiving
Unlike traditional grief that we associate with death, ambiguous loss isn’t marked by a single, final moment. Caregivers experience many of these changes — some small, some big — throughout their journey.
Each change elicits a wide range of emotions. You may experience grief, anger, frustration, sadness, loneliness or even moments of relief. You might have thoughts that make you feel guilty or ashamed, like:
- “I miss who they used to be. I don’t recognize them anymore.”
- “I feel trapped in this role, and it’s making me resentful.”
- “I need a break, but I feel guilty when I seek respite.”
- “It will be easier when this is over.”
It doesn’t always feel good, but complex, conflicting reactions are a normal, deeply human response to the difficulty and uncertainty of caregiving.
You aren’t a bad person for feeling that way — and you aren’t alone.
Healthy Ways to Cope
Ambiguous loss doesn’t go away. Caregivers must learn to “live in the middle” with it by identifying healthy coping skills that support their own emotional well-being.
In her book, "Loving Someone with Dementia," Dr. Boss outlines seven guidelines for caregiver survival:
- Learn to acknowledge the paradox. Your loved one is both here and not here.
- Balance control with acceptance. Realize that the dementia cannot be problem-solved and focus on what you can control.
- Broaden your identity. Make time to do things that you enjoy, lower stress and remind you that you are more than a caregiver.
- Manage mixed emotions. Regardless of what you feel, recognize it and express it verbally or in writing.
- Hold on and let go. As chronic conditions progress, relationships change. Challenge yourself to let go of what was and make peace with what is.
- Imagine new hopes and dreams. Throughout caregiving, remind yourself that there are things to look forward to, whether during or after caregiving.
- Take the time to mind “self.” Acknowledge that you are a caregiver and it is hard. You’ve earned the right to ask for and accept help.
Even as roles change and abilities shift, remember that relationships can still hold moments of connection, compassion and care. Those moments matter more than you realize.
When to Seek Support
Caregiving can be emotionally demanding, and it’s important to ask for help, especially if you are feeling:
- Persistently overwhelmed
- Isolated or alone
- Unable to rest or recover emotionally
- Consumed by guilt or shame
Connecting with resources, such as the Family Caregivers Center of Mercy, can help reduce stress and provide guidance and support during difficult moments.
Connect with the Family Caregivers Center to discuss current and future needs and to access resources that will benefit you and the person you are caring for.
(319) 221-8866 | fcgc@mercycare.org | 9000 C Ave. NE Cedar Rapids, IA, 52402
