The Center for Brain/Mind Medicine > Support & Education

Grief & Loss

Types of Dementia Caregiver Grief

The grieving process starts at the time of diagnosis.  “What will my life be without this person?” is a common thought and fear.  This is anticipatory grief.  You feel the weight and pain of future loss.  In addition to the dread of your loved one’s eventual physical death, each loss of ability can feel like a little death.  You may grieve losses of memory, awareness, personality, and ability to communicate long before your loved one passes. 

Another aspect of grief for caregivers is ambiguous loss.  This happens when a person with dementia is still physically present but is not mentally or emotionally present as they once were.  Contrast this with an actual death, where the person is clearly gone.  When that happens, you are more likely to have support from family and friends and may find comfort in rituals and memorials.  Ambiguous loss is more like an ongoing death, where there is no predictable ending or closure and for which there are no rituals or memorials.

One of the most difficult parts of ambiguous loss is the gradual loss of the previous relationship.  When the person is still physically present but no longer “themselves,” you may no longer feel you are in a marital relationship, the parent-child relationship you always knew, or a mutual friendship.  Dementia changes relationships.  It is a challenge to learn new ways to relate to the person with dementia. 

Using “both/and” instead of “either/or” thinking can help.  This allows caregivers to accept that presence and absence exist at the same time as dementia progresses.  It can help you find pathways to preserve the relationship—for example, “I am BOTH a caregiver AND a wife,” or “My father is more like my child now AND we can still have laughs together.” 

Another part of ambiguous loss is having mixed and conflicting emotions.  Anger, guilt, sadness, and wishing it were over are all normal feelings.  Here again, “both/and” thinking can help.  “I BOTH wish it were over AND that my husband could keep on living” is a sentiment often reported by caregivers.  You may feel like “wringing his neck” AND feel sadness for his distress at the same time, or feel guilty about not being more patient AND “fed up” at the same time.

The kind of grief caused by the death of a loved one with dementia is more familiar to most of us.  You will probably feel a mix of emotions then, too: relief and heartbreak, freedom and longing, numbness and anger.  Even though anticipatory grief and the grief of ambiguous loss have been constant companions throughout the illness, the death of the loved one brings another sort of grief.  While you are likely to have support from family and friends and public acknowledgment of the loss, some may think your grief is less because the illness was dementia and caregiving is burdensome.

How Does One Manage?

With grief at every stage from diagnosis to death, how does one manage?  First, recognizing that you are having feelings common in grief can help.  Of course, feelings of sadness and feeling down or blue are to be expected, but so are all those mixed emotions we mentioned before.  They are all part of grief.  Ask yourself what you’re feeling.

Second, sharing what you’re feeling and thinking with others who understand can help ease the pain of grief.  This can be a friend, family member, or caregiver support group.  The important thing is that the person or group has some idea of what it’s like to be in your situation and can compassionately listen to your real feelings.

And third, professional support from a counselor or therapist can be extremely useful in helping you cope with the heavy stresses of caregiving.  Establishing such a relationship early in your person’s illness can help you recognize and process emotions before they become overwhelming.

Keep in Mind…

Grief is the normal human reaction to loss, not an illness to be cured.  In the words of grief expert Megan Devine, “It can’t be fixed, only carried.”  So although it can’t be cured, as with anything that must be carried, sharing the load with others makes it easier to bear.