Chapter 4: Grieving as a caregiver

Unrecognized or unacknowledged grief

The grief expert says
Betty speaks about the unnamed grief around dementia.(3:22)Video transcript

Other people don’t see it as grief. Some people think that I’m doing okay because I’m still on my feet and because he’s still alive, but I’m just happy to be upright. 

If someone tells me to have a great weekend, I am annoyed and saddened. There are no great weekends for me, but I am doing the best that I can. Being told to have a “great weekend” feels thoughtless and superficial.

When it comes to loss and living with illness, people often focus their attention and support on the person who is ill. As someone caring for a person with illness, you may have also experienced loss and drastic changes in your life. Others may not recognize these changes and, therefore, may not ask how you are doing or offer the additional support you need. 

If the person you care about is still living, others may not understand what it feels like to “say goodbye without leaving” or to care for someone as their illness progresses.

When your experience of loss and grief is minimized or unrecognized, or if your feelings are dismissed, your grief goes unseen and unknown. This can leave you doubting your experience, adding to feelings of isolation. Sometimes this is called “disenfranchised grief.”

What may help

  • Name and acknowledge your own losses and your experience. You may find it helpful to write them down.
  • Consider sharing your experience of loss with someone you trust, whether a family member, friend, or someone from your community.
  • If you’re not receiving the support you need from family and friends, consider reaching out to others who may be better able to understand your situation. This might be through a local community or online service created for caregivers like you.
  • Consider limiting your contact with anyone whose advice, comments, or suggestions are hurtful or not helpful to you.