Ask us anything: Ambiguous loss
Many family caregivers experience ambiguous loss. It can be confusing to process, especially when the person they are supporting is still physically present. Lived experience partners have found writing or speaking about the emotional aspects of their caregiving experience meaningful.
Many family caregivers experience ambiguous loss. It can be confusing to process, especially when the person they are supporting is still physically present. Lived experience partners have found writing or speaking about the emotional aspects of their caregiving experience meaningful. Here are reflections from caregivers on ambiguous grief, loss and feelings of guilt.
"The The emotions…barrel up inside me until numbness takes over. A numbness that cannot be explained to anyone who has not lived alongside prolonged loss. It is not the absence of feeling; it is feeling too much for too long.” – Martin, caregiver
"I often feel guilty about not measuring up and that guilt can grow until it overshadows all goodness, turning even kindness into self-reproach. I am already drowning in the quiet demands of each day. I watch myself hesitate, lose patience, feel fatigue, and then the guilt rushes in — thick and familiar. I don’t want to deny my guilt but to see it clearly — to notice when it stops being my guide and starts being my torment.” – Tobias, caregiver
“When I’m burnt out and tired it seems like the more I sleep the heavier my heart gets. Truthfully, I can not bear the silence of the ambiguous grief and the loss. Volunteering has been huge for me…it gives purpose to the pain and the pressures that are stuck inside my heart.” – Eric, caregiver
The Lived Experience Partner Program’s Artist in residence role provides an opportunity for people affected by dementia to share their experience through writing or art. We invite you to read Tobias Jesso’s insightful reflections here.