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.
Comments (6)
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Anonymous replied on Permalink
'Russell Smith - reading your comment tonight just may have saved my twenty year relationship. I just told him today that I haven't heard I love you or felt appreciated and that all the stressors we are under were about to make me consider running away. After you shared your experience, I am confident that my friend and I can work through this. We've been through this for so long, how could I possibly consider abandoning him at this time of need for him? I am a warrior and a worrier, but I will continue to stay strong for him, and I'm leaving right now to walk the six blocks to the nursing home where I will be greeted by his huge smile. That smile says it all. Thank you, I am grateful for your words, and now I know more about what my friend is going through.
~Robben
Anonymous replied on Permalink
As a carer of a person who sustained a TBI 40 years ago and I've care for over the past 8 years, to the person who wrote about his relationships with his daughter and family, can I say - please make an attempt to communicate. I am currently doing a PhD and my topic is about stability and resilience in relationships. It is hard I know and communication, plus isolation are major factors in relationship breakdowns. Family therapy is a good place to start if your family members will agree to attend. Counseling for yourself is good if you can access it. I don't know where you are from but in Australia we have a system where our GP's can do a mental health care plan and under medicare you get 10 free psychology sessions. If you have those and can access them that would be good for you especially if the psychologist knows about brain injury. I wish I could help you more, some of my clients have brain injury that I work with as well. You do not have to leave your home you should stay in it. Work on communication even if you have to type it out or write it out say what you are thinking and ask how your relationships can be repaired. Often it is a lack of understanding about brain injury and the changes that occur and those are the areas that mostly distress me because there should not be any negative outcomes for all concerned. I hope things improve please let me know.
Anonymous replied on Permalink
This is definitely a huge issue and I would like to chime in as somebody with a TBI that has a great spouse and caregiver. Even though I know at times it is extremely difficult for my wife to understand how or why I do the things that I do I am internally grateful for her and the support that she provides to me and my family. Without her I am almost certain that I would crumble and become a hot mess. I would encourage any spouse with a situation like this to always take solace in the fact that even though there is an absence of affection present at times somebody with an injury like this can deeply love but have an incredibly difficult time showing it of affection present at times somebody with an injury like this can deeply love but have an incredibly difficult time showing it and even worse they may not realize that they're not showing signs of appreciation and I and even worse they may not realize that they're not showing signs of appreciation and at times they may not even realize what they are doing entirely. I am faithful and luckily my bride is as well because I believe that our faith is what kept her strong enough to see me through the toughest times. She is twice the warrior that I was in my best years of service and I hope that somebody reading this will find some peace and joy in knowing that they are loved and appreciated by the person the day support even if that individual does not show it. Please never give up on the ones you love because of something that happened to them. It is a spouses love and compassion that heals and covers the wounds that we and those are the same ones that we hate. There is no worse feeling in the world than to know that you are heard and that your actions or lack of can and do affect the people that you care about. I have reached what they would call a plateau and I have continued to push Succeed and to better myself and at times that has lead to issues such as substance abuse and instability. Some days it feels like you're pushing the throttle but you're sitting in neutral while everybody at the red light is watching you fail to be able to navigate and when those people steer clear of you it makes a bad situation worse . The one thing that has always kept me from the darkest thoughts have always been the love and prayers of my beautiful bride. The one thing that has always kept me from the darkest thoughts have always been the love and prayers of my beautiful bride SFC(RET.) Russell Smith
Anonymous replied on Permalink
I have apparently ruined my relationship with one of my children and partner. I don't remember a lot stuff from before my injury(TBI). Which was 5 years ago. All I hear is bad stuff. When they do talk to me, which isn't much from Jacquie. My daughter hasn't talked to me since xmas. Everytime she comes home from college I dread it. I was just told if I want to leave, leave. I don't know what to do if I do leave. All I have is home to remember mostly of last few years. When I feel I need someone the most and they can't handle how you are is hard to explain.
Anonymous replied on Permalink
joe and i have been married for almost 40 yrs,..joe sustained tbi/stroke in '05, he sustained a psuedo anuerrism, and two mini strokes..he was in a coma for two and a half wks..he woke up was sent to a rehab hospital for 6 wks, then onto a neuro rehab nursing home..suppposedly the best...i did all that i could to get him outta there..16 months later, he has been home going on 8 yrs, I am his caregiver and chief cook bottle washer..i talk to the v.a. at least once a wk and the state i live in is usleless..so i have to pick my battles even though i know i wont win the war..
Anonymous replied on Permalink
My boyfriend left me after 5 years as he could not handle my circumstances anymore. So now that i am on my own, i am unable to look after myself properly and, i no longer can have a social life with my friends, except via the computer.
So i now just have to plod along with life and not worry about what i cannot do. As i continue to struggle with diagnosis of injuries and chronic pain management, and no family remember around for support, I hope that someday things will be easier for me to cope with, before i end up in hospice care.