Navigating Ambiguous Loss & Grief

By Dementia Alliance of NC

Your loved one is there. Your loved one is NOT there. They may be sitting right next to you, looking in your eyes, but they are no longer present in quite the same way as before.

This roller coaster of absence and presence common to most dementias can cause a stressful form of loss for caregivers—what author Dr. Pauline Boss calls Ambiguous Loss.

Unlike death, there is no closure or official validation. Caregivers often bury these feelings of loss and grief creating situations that leave them immobilized:

  • Major medical and financial decisions are put on hold
  • Tasks pile up and chores are delayed
  • Doubt, confusion, helplessness, and hopelessness leads to anxiety and depression
  • Friendships take a back seat as caregiving takes more and more time
  • Conflicts increase with spouse, children/stepchildren, and siblings
  • Family gatherings and rituals are canceled or changed
  • Caregivers become more isolated increasing the possibility of depression, anxiety, abuse, guilt, shame, lack of self-care, illness, or substance abuse

Along with caring for their loved ones, caregivers must learn strategies to cope with the ambiguity that comes with memory loss. Here we will focus on tips that both acknowledge losses as they emerge and encourage hope for caregivers through practicing self care.

Tips for Navigating Ambiguous Loss:

  1. Acknowledge your sadness and take time to grieve. Feelings of fear, anger and guilt are normal. Share them with supportive friends, a support group or a healthcare professional.
  2. Let go of what you can’t control. You can’t control your loved one’s memory loss, but you can control your reaction. Take hold of what you can and how you respond to situations.
  3. Connect with others. As your relationship with your person living with dementia becomes more one-sided, connect with others who can be fully present and support you.
  4. Ask for and accept help. Change past roles played by family to include everyone in the caregiving journey. If that is not attainable, seek out others you can rely on for support like a caregiver support program specific to dementia.
  5. Remind yourself you are doing the best you can and it’s OK to ask others for help and support when you need it.
  6. Take care of yourself. Your role as a caregiver continues to change as your person does. Give yourself permission to take care of yourself while caring for your loved one, both are equally important. Stay physically active, eat well, take personal breaks and do what you need to relieve stress.
  7. Find a creative outlet. You can find creative ways to express your grief and loss through writing, painting or other visual art forms.
  8. Allow yourself to still have hopes and dreams. Allow yourself to grieve the changes in your life plans but give yourself space to transform your expectations and make a new plan for the future based on the positive things you have in your life.


Artwork: Mom by Susan Kern