END OF LIFE

Caregiving in rare disease involves a delicate balance between trying to create and live a “normal” life and grieving daily for the life that could have been—for themselves and their loved one. But at some point, raregivers must grapple with how best to prepare for the end of their loved one’s life. For some, this involves the experience of bereavement while the loved one being cared for is still living. This experience, or anticipatory grief, can last many years. 

Preparation/Bereavement

Anticipatory grief can be supported through compassionate care, decision support, and counseling, as well as by finding opportunities to discuss the future, death, and dying with others. As a caregiver it’s difficult to know what the future will look like after the passing of a loved one to whom intensive care has been given. 

Emotions: Stages of Grief*, “Navigator”

Can look & feel like: 

Denial

Avoidance, forgetting, distraction

Shock, numbness, confusion

Anger

Pessimism, cynicism, irritability

Frustration, impatience, rage

Bargaining

Over-thinking, comparing self to others, judgment about self/others

Guilt, shame, blame

Depression

Sleep/appetite changes, reduced energy, reduced social interest 

Sadness, despair, hopelessness

Acceptance

Being present in the moment, able to tolerate emotions, adapting

Felling “good enough,” self-compassion, validation

Finding Meaning

Remembering those who have died with more love than pain

Honoring loved ones who have died

*Kübler-Ross E. On Death and Dying. What the Dying have to Teach Doctors, Nurses, Clergy, and their Own Families. New York: Scribner. 2011. Kessler D. Finding Meaning: The Sixth Stage of Grief. New York: Scribner. 2019. 

Raregivers say that it’s easy to become, and be seen as, the Navigator at this stage—the person who is the in-the-moment problem-solver trying to find a way through their own feelings of loss, as well as the feelings of others. We can support your navigation with training and resources.

Caregiver Support: Practices for Being in the Moment

• Talking about end-of-life with trusted sources can help caregivers adjust to life without their loved one, consider a different future for themselves, and explore how family roles and routines will change. 

• Self-care practices such as journaling can help to process the grieving process before and after death.