Ambiguous loss is related to both absence and presence.
In some cases, the body is present, but as is common with dementia, psychologically and emotionally, a person seems absent or changed. In other cases, the body is absent (as in missing), but mentally, the person is still very much present to the loved one.
It is common that others may not recognize the loss you are experiencing or acknowledge that grieving is ongoing for you on a daily basis.
As in the case of someone who is caring for an older adult living with dementia, the changes that are happening can be confusing and unpredictable, with a combination of lucid moments, along with odd, unexpected, and/or challenging behaviors. The person we are caring for or visiting does not seem the same as the loved one we once knew - they may seem distant, confused, or unresponsive, or not recognize who we are - which alters our interactions in a way that can feel foreign and sad.
Might it be possible to find ways to adapt and accept the changes as we also experience the ongoing loss of the person as we knew them? We may discover new ways to connect and interact with our loved ones that are meaningful, rewarding, and emotionally satisfying in a different way. This complicates the process of grief because it is a continuous experience of loss where one must grieve and constantly adjust to a “new normal.” We continually redefine the relationship, acknowledge what has been lost, and try to stay present for what is the current reality.
The positive side of ambiguous loss is that it provides a pathway for a caregiver to accept and live with a new reality as they learn to appreciate their loved one for who they are now; instead of thinking, “My Mom is gone,” think “My Mom is different now.”
When a loved one has Alzheimer’s, many family members experience repeated grief responses to the continual decline, and each new stage of decline brings on another stage of that process. It can be emotionally and physically draining to be in this cycle. We don’t know when it’s going to end, how it will end, or how long it will go on, and along the way, we are seeing and experiencing losses of some sort, whether we are aware of it or not.
It can be most comforting to have another person and/or a grief support group to process incremental losses. There is great value in having that validation as we share these losses and changes with others; to feel and know that someone “gets it” when others may not. Although each person's process is an individual and unique journey, being with others going through their own ambiguous loss can be a source of strength and support.
Contact your local Alzheimer’s Association for a list of support groups (both in-person and online) that are available to families and caregivers. You are not alone.