Contributed by Sharon Aubrey
In the past fourteen years, we’ve lost nine family members and close friends. Three were terminally-ill, to which my husband and I were primary caregivers: cancer, dementia, and COPD. The recent passing of my brother-in-law was our most heartbreaking experience to date. While the loss of a loved one is always difficult, after you’ve personally provided for someone’s physical needs, mental health issues, and medical requirements for years, death is far more complex. Grief is not the same for a caregiver than experienced as a close family member or fringer. Many assert grief cannot be compared, but after living through many types, I disagree.
Scientific journals also outline caregiver grief as surpassing many others. Not only do caregivers lose a loved one, but long before death, they suffer the loss of independence; freedom; sleep; time; finances; and family harmony. A caregiver’s life constantly revolves around the emotionally-draining, physically-demanding needs of another, who often cannot or does not acknowledge or appreciate your sacrifices. Worse, displaced paranoia and anger from patients onto caregivers creates additional frustration, disappointment, and an ongoing sense of loss.
Caregiving is the most important and under-appreciated job on the planet. Most never get paid for their time, and statistics substantiate caregivers provide financially from their own pockets to meet the needs of the patient. Essentially, it’s a thankless job you pay and sacrifice everything to keep. Then death comes.
As family members are contacted for imminent death, the caregiver is displaced. Close family and friends who maintained regular contact with the patient are surprised by a sudden loss. Additionally, fringe family and friends may also feel an unexpected loss. Fringers aren’t distinguished by relationship status as they might be a sibling, cousin, or grandchild but rather defined by whether or not they stayed in regular contact the patient or caregiver. In death, there are always more fringers than close family members, although most self-identify as a close family member.
For the caregiver, death is not entirely new. They have been wrestling with it for a long time. As a result, their behavior versus a close family member or fringer looks very differently. Caregivers often express relief or anger instead of excessive weeping. As such, many misinterpret their behavior as uncaring or cruel. Thus, caregivers can be rejected by family members shifting blame.
This April, after thousands of hours providing care, my husband’s brother died. He didn’t only lose his brother of seventy years; he also lost his hero, best friend since childhood, cribbage partner, next-door neighbor, and daily companion. And sadly, thanks to the Haldol and morphine given the last week of his brother’s life, he also lost the agreements his brother made with him, resulting in a sense of betrayal. Unfortunately, his anger was misinterpreted. One person accused him of greed even though he gave her all the assets that were only supposed to be split with her and never spoke an unkind word toward her. Regretfully, as a result of her accusations, my husband didn’t attend the celebration of life service.
While the rest of the family has returned to their regular daily lives, my husband is left navigating a new normal, completely alien to his daily routine of the past twenty-five years. His grief and loss haven’t subsided. Caregivers rarely have that blessing. Close family members and fringers experience grief moments, but caregivers can experience daily grief for many years.
Grief is unequal. For caregivers, it’s a traumatic and permanent scar.