There is a critical question many caregivers share only in support groups, therapy sessions, and confidential meetings with clergy. The topic is so complicated and controversial that caregivers hesitate to talk about it in public. That topic is the decision-making process involved in reshaping the relationship with a partner or spouse who has been permanently changed by brain injury. One form the question takes is “Should I stay married or divorce?” Another form is “Should I continue to care for my spouse, or should we live apart?”
As a psychotherapist who facilitated support groups for several years, I heard many caregivers consider how to move on and meet their own needs while living as a “married widow or widower.” Their partners had severe physical, emotional, or cognitive impairments that required intensive care years after the brain injury. Caregivers felt the stress of role and responsibility changes, ongoing grieving, financial pressures, mood disorders, and communication challenges.
Other caregivers explored separation or divorce when a partner’s emotional abuse, substance abuse, or violence endangered their family’s safety. The choices were suffused with years of loneliness, grief, guilt, anger, or anguish for one or both partners.
“Love Him Back to Health”
Ilene has been married to Gary for thirty-four years. In 1995, Gary was in a serious head-on collision that left him with a traumatic brain injury. Their children were seven and ten at the time, and Ilene worked full time in their business. Gary was hospitalized for eleven months, until insurance refused to pay. Like many caregivers, Ilene learned all she could about Gary’s treatment and brought him home. “I was determined to love him back to health,” says Ilene. “It was a dream. Reality did not hit me for many years.” Even with a devoted aide for seven years, Gary’s complex care, safety needs, and incontinence became overwhelming.
The staff at Gary’s adult day health program noticed the toll that caregiving while parenting and working were taking on Ilene’s health. They encouraged her to consider the transition to a nursing home. Ilene admitted Gary into a nearby nursing home and visited daily. She later found a more distant, but highly skilled nursing facility for him. Now she visits weekly. “I’ve tried to regain some normalcy in my life,” she says.
Redefining Love and Support
Ilene says that although she feels like her marriage to Gary ended sixteen years ago, she has never considered divorcing him. “In some ways I consider myself to be separated, not by choice but by circumstance. There is no conversation, no companionship, and no intimacy,” she says. Professionals have not held out hope that her husband can recover those capabilities. “I love him very much anyway, but I have to live my life too. I think I found a good balance for me.”
Janet Cromer, RN, MA, LMHC is a psychiatric nurse and write the Caregivers Compass column for the magazine Brain Injury Journey – Hope, Help, Healing published by Lash and Associates Publishing/Training.
Used with permission from Brain Injury Journey magazine, issue #5, Lash & Associates Publishing/Training, Inc.