Common Bonds of Caregiving
What is caregiving and how do you define a family caregiver? What is the common thread that ties together those of us who care for spouses, children, parents, siblings, partners or friends who are chronically ill, frail, or disabled?
It certainly isn't the tasks of caregiving.
- They vary so much, from helping a developmentally delayed child learn new skills, to taking an aging parent to frequent doctors appointments, or suctioning a spinal chord injured spouse virtually every hour every day.
It surely isn't the number of years involved.
- Caregiving can last a few short months. It can last three to five years. At times, caregiving is a lifetime commitment.
Location varies from situation to situation.
- Although most caregiving goes on in the home, and most caregivers and recipients live under the same roof, talk to anyone whose parent is in a nursing home and you'll quickly learn that caregiving doesn't end when someone else is responsible for day to day care, or when caregiving takes place long distance.
If it isn't the responsibilities or tasks, and it is not the length of time, if it isn't the location - what is the essential bond of caregiving?
In 1994, when the National Family Caregivers Association (NFCA) conducted its first caregiver member survey, we were seeking to find that common bond, to define the link between all caregivers. We found in no uncertain terms that the common bond of caregiving is its emotional impact. In 1997 when we surveyed our members again, we found the same thing.
The Common Bond of Caregiving are:
- The intense sadness we feel because someone we care about has suffered a brain injury, is losing their mobility, will never achieve normal life functioning. It is the sadness that comes from wanting the miracle of normalcy.
- The upheaval of changing family dynamics that occurs because life has been turned upside down and because there is no set timetable for working through the painful stages of grief which caregivers and care receivers all experience in their own personal and private way.
- The sense of isolation that comes from living outside the norm, from having everyday activities of life - dressing; walking; toileting; breathing, thinking clearly - that everyone else takes for granted, become such a big focus in your own life.
- The frustration we all experience because it is so hard to get things done, because non-caregivers just don't understand, because healthy people park in handicapped parking spots, and because people who are supposed to have the answers often don't.
- The stress we feel because we don't have enough leisure or personal time, and the common bond of caregiving is unfortunately often the severe depression that so many of us suffer.
- It is the fortitude to go on despite the pain It is the wellspring of hope we always dip into. It is the power to make a difference. It is the clever way we solve a difficult problem. It is the knowledge that we have been tested by fire, and we have survived.