On Long-Term Caregiving: An Unavoidable Uncertainty
This is a series of articles about long-term caregiving.
A friend called to chat. She is a caregiver. The only caregiver. Her husband is in declining physical health. Unless a miracle happens, he will only get worse. There is no cure. She knows this. But, what she does not know is WHEN. When something will happen to him. To his fragile health. Will he fall? Have a stroke? To his mind? His memory? Will he begin to wander off? She said, “I live in fear. I worry all the time. I never can completely relax. I keep wondering what will happen next. When? Will I be able to handle it? I am worn out. When will it end? Will I have to put him somewhere? Can we afford it? I live with uncertainty every day.”
Long-term caregiving, of whatever kind, has a dark cloud of uncertainty hovering over it. And it hovers over the caregiver. A reality, yet a mystery. Not a matter of “if,” but of “when.” Mentally, a caregiver may be able to accept that the day will come. The day for an unavoidable and dreaded decision. But, emotionally it is a daily life of trying not to think deeply about it. Deny the thoughts. Deny the emotions that suddenly surface. Instead, just try to live one day at a time. Don’t give in to the feelings. A shaky balance between mentally knowing and emotionally denying.
Each situation is different. Some caregivers may have a relationship with the sick person in which they can talk openly about what is happening to them. To each of them. About their choices as time goes by and changes come. Talking can be a relief. Talking can deepen the relationship. In other situations, it may be best that the family talk together openly about what is happening to them as a family, not excluding the sick person who may be able to express her or his desires as changes come. The sick person may ask to remain in the home if it is at all possible. (But, dementia can prevent this kind of patient participation).
Not only is caregiving unavoidable generally speaking, but also it is a life of unavoidable uncertainty. What can a caregiver do to prepare for what is to come?
First, be practicable. Make a list of what to do when a crisis happens. Know how and whom to call for medical help. Make a list of medications. Decide which ER to go to when necessary. Relatives to call. Friends and neighbors who have offered to help. Know where to find important documents (insurance, donor information, living will, etc). Have an overnight bag for yourself ready when needed.
Second, prepare yourself. Join a caregivers support group. Get personal counseling. Make a regular time to talk with God. Talk with family members about the changes, the loss, the inevitable. Support each other. Have a life beyond the demands of caregiving. Do not neglect yourself. Stay healthy. Pace yourself. Accept what you can’t change.
Prepare emotionally for what you cannot prevent.
About the Author
Hugh Burns is a Licensed Marriage and Family Therapist and an ordained clergyman in the PCUSA. Hugh graduated from Presbyterian College and Columbia Theological Seminary. He leads DPC’s Caregivers Support Group and has previously served as a Clinical Chaplain in a mental health center and a hospital. You can reach Hugh by email, at firstname.lastname@example.org.