Caregivers' Fear of the InevitableBy , Caring.com contributing editor
Taking care of an aging relative at home comes with a known terminus. Not that anybody talks about it much. And therein can lay a problem: Unspoken fear of death.
I don't know about you, but I rarely hear about it except in one-on-one, confessional tones. Seems everybody's thought about it, though.
When my mother, who had terminal cancer, transferred herself from the hospital to home hospice, we all felt a kind of relief that pain and invasive treatments would be over. A calm, saintly hospice coordinator named Mrs. Arthurine Brown organized the bed, the nurses, the medicines, the instructions for how we could keep her comfortable.
Amid all this efficiency, my sister and I traded secret big-eyed looks I'll never forget. Looks that said, Mom will die at home. Are you a little scared, too? In the hubbub of hospitalization and crisis, we hadn't truly focused on that. The feeling never left the air for the next 11 days.
For those dealing with regular home eldercare, death is a less immediate specter but the anxiety can still be there. In the back of your mind, you know how the story will end. Just not when.
Some say the fear intensifies after a crisis. "I was in denial about Mom dying even though she is 93 and has Alzheimer's," one person told me. "But after she collapsed one day "“ even though it was just a reaction to a test "“ I found myself doing really obsessive things like listening at the door for her breathing and worrying if she overslept."
What helps? Knowing that:
Your fear is a kind of grief"¦and grief is inevitable. Especially as a person diminishes a great deal physically or mentally (as with Alzheimer's or another dementia) it's natural to mourn who they once were. The idea of their leaving you entirely is almost too intense to contemplate.
Admitting fear automatically shrinks it a little bit. Denial is a common first-stage of coping with death. It's easy to engage in the "magical thinking" that somehow things will get better after all. Hope that stops short of complete denial keeps you better braced to deal with whatever might come up.
Accepting the inevitability of death shrinks fear a lot. The whole point of caregiving is to make everything comfortable, safe, and right for our family members. And we're great at it! On the other hand, life itself isn't fully dependent on whether you've made a nutritious meal or avoided bedsores. Often caregivers say that they're less fretful once they surrender to the notion that while they do the best they can, they can't halt death; that's beyond the best caregiver's control.
Recognizing that the unknown is always unnerving. Why shouldn't you be a little scared of death? It's not like most of us grew up in an era where it happened right in front of us all the time. This is where it helps to know others feel the same way.
It's really not morbid to make practical plans. It helps. Practical knowledge can build confidence. For example, what happens at the final stage of Alzheimer's? Especially if you're facing hospice, ask the specific signs of impending death. Consider, even if it's still long before you'll actually need to take action, what to do when someone dies.
You won't jinx anything. To the contrary, you might free up some emotional energy to better hang on in the here-and-now.