5: 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 care for is still living. This experience, or anticipatory grief, can last many years.
“It's a hard topic. pre-grief with a terminally ill child. The mind wants to start preparing. Being aware of the 5 stages of grief. It's not linear. I get caught between depression and acceptance. The reality has set in. No more bargaining. Go easy on myself on a depression kind of day. Other people's grief shows up in different ways. When you hear about other children with your child's diagnosis died is harder than I thought. There's something important in facing it. A premature death is the reality. It's hard to have a child with another person and be isolated from that other parent's grief over that shared child. I'm sure it's been very painful for her and I have no window into that. It's something that I wasn't prepared for.”
- Sean M., Alexander Dad
