Focus on Caring
Krista Davis, R.R.P., CBIS Clinical Examiner
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Television, movies, and books speak freely about human sexuality. Even with the constant exposure to sexuality in the media, moms, dads, siblings, and rehabilitation professionals still find it difficult to discuss sexuality openly and without discomfort. While our ability to provide for the medical and physical needs of persons with brain injury has advanced to a level of excellence, our ability to provide proper emotional support, particularly in the arena of sexuality, has been slow to keep pace.

As I looked through my internal mail one morning, I came across an incident report stating a female staff member had witnessed “inappropriate sexual behaviour” between two participants at a community event. She observed a male participant holding hands with a female participant throughout the afternoon and later kissing her. The report indicated that the participant was non-compliant to cues to cease hand-holding. The staff member requested direction on dealing with this situation. When I met with her to discuss the concerns, my question was “What is it about what you witnessed that was inappropriate?” She indicated that she felt that the participant should not be involved in a relationship with the young woman. As she said the words, she realized that it was not her decision to make and that this was an opportunity to support personal goals of our participants. The discussion quickly turned to identifying ways to support the participants with their consensual relationship.

Too often, issues of sexuality and intimacy are overlooked, minimized, or suppressed in a rehabilitation setting. It is important to remember that young males between the ages of 18 and 30 are the most common victims of injury to the brain. This is the stage of life when men are experimenting with relationships and intimacy. Intimacy is one interaction that defines human experience. Therefore, to neglect or avoid the topic in rehabilitation fails to address the needs of the persons served. It is the role of caregivers/rehabilitation professionals to assist our clients with brain injuries to learn to develop relationships to whatever level their physical and/or cognitive abilities allow. Family members should feel comfortable requesting information of a treatment facility regarding how the direct care staff and the rest of the treatment team will address relationship and sexuality issues and concerns. Guardians or family members may wish to discuss their expectations in this regard, giving valuable input into treatment goals. Education, on all fronts, is essential. Concerned family members as well as front line staff need to be educated to the facts that the desire to be intimate and to express emotions are a natural course for everyone, whether there is a disability or not. All individuals, regardless of their handicap or disability, have a right to their sexuality and the right to develop meaningful relationships that may or may not be intimate in nature.

Peggy:
My husband had an excellent recovery. He returned to his job and, while very different, our marriage is alive and well. When I look back at what I gained from the Approach for Spouses program, I am amazed that I was able to deal with as much as I did on my own. I also realize how much easier it became when I knew that there were others I could rely on to understand my position and call on for needed support. I still meet with members of my group for dinner and talk to them on the phone. I know that these friendships are enduring. When you have laughed together, cried together, discussed your most intimate feelings, and exposed your soul to others, the bonding is total. We sometimes call each other at the precise moment when support is needed and are asked, “How did you know I needed you?” We have even introduced our husbands to each other and go out to dinner as couples. While we all have different stories, as you will see as you read on, we share the common bond.

And, now we will hear from two other participants:

Barbara:
It wasn’t supposed to happen to him/us! We were always the lucky ones. We were always the healthy ones. Then, in October 1996, my husband was stopped at a red light when an inattentive driver slammed into the back of his car. The man I married died that day and a different person emerged. We continued to be lucky – he walked away from the accident. Thankfully, an alert police officer questioned him and, when my husband could not remember the day of the week or the President of the United States, he was whisked off to the emergency room. The neurosurgeon said it was bleeding on the brain. He was released within 24 hours. The neurosurgeon said there would be headaches; he didn’t say they would be debilitating and reoccur throughout my husband’s life. The neurosurgeon didn’t educate us about the mood swings, the anger, the inappropriate responses, the apathy, the inability to remember, or the lack of desire to participate in conversation or socialize with friends. When my husband returned to work, we did not know there was a possibility that he could no longer perform work-required tasks. By the time my husband and the workplace “separated company” we were referred to a rehabilitation program and appointments with specialists and on-going therapy afforded us the opportunity to explore the person he had become. It was incredibly lonely – I lost my best friend to TBI and I felt I couldn’t talk to my family and friends because they wouldn’t understand. Three years later the invitation to become part of the spouse support group arrived. We talked about our innermost thoughts, feelings, experiences, and fears. It was not easy! My coping mechanism, to ignore or make light of what I could not understand or fix, was exposed. I cried tears of grief for the loss of the person I married. The tears were the beginning of my healing. Within the spouse support group I can openly share my true feelings. Together we can laugh, bound by the shared common problems of living with TBI survivors. When I am down, they are only a phone call away. Our group continues to meet informally at dinner to share the on-going challenges. It is a very important part of my life. I am thankful to call each person in this group “friend.”

Helping a person with brain injury achieve the goal of developing and maintaining meaningful relationships can be challenging. Following a brain injury, one of the most common deficits noted is the inability to inhibit thoughts and copes and (2) how the individual will adapt. When a traumatic event occurs within a family unit, coping and adaptation must occur in order to move forward and remain as a unit. Family coping is a specific effort, covert or overt, by which an individual family member or the family as a whole attempts to reduce or manage a demand on the family. Adaptation is defined as the outcome of family efforts to bring a new level of balance, harmony, coherence, and a satisfactory level of functioning to a family following a crisis situation (McCubbin & McCubbin, 1991). Through the wives’ adjustment group, we discovered that the individuals that reached out to each other and did the hard emotional and spiritual work of participating, completing weekly questionnaires, and journaling, were the individuals that were committed to reducing or managing the demands on their family. They were striving for adaptation, a level of harmony and balance in their family unit. When family adaptation occurs, even when brought about by only one family member, the groundwork is laid for the family to “redefine” itself and move on.

Linda:
My husband suffered a massive brain aneurysm that ruptured. He is one of a small percentage of survivors of this malady that has lived to tell his tale. He is walking, talking, working…Ain’t Life Grand?!!!? Well, not exactly. Before the brain injury my husband was best described as “wide open.” He was a hard worker and an avid athlete. He taught a Sunday school class for teenage boys, headed up special projects, served as a deacon, and was a “natural” in our drama presentations. Where there was a need, he was there. I could go on all day about his charisma, strength, and kindness; and, to top it off, he loved his wife (that’s me) very much. He was the most wonderful, sweet, supportive, fun, exciting, and considerate husband that ever walked this earth – I am not exaggerating one bit.

Did you know that people don’t “get over” a brain injury like they recover from a broken leg or the chicken pox? Well, I didn’t. He had made so much progress in rehab; he learned to walk, gained strength, etc. I just couldn’t wait for us to get home so things could get back to normal. Within the first 24 hours I had a pretty good idea that things were very different. He continued to go to outpatient therapies three or four days a week and it was
during one of these sessions that I decided to visit a friend whose husband was still hospitalized. I found her in a room with several other people and when some “official-looking” lady entered the room I figured it was time for me to leave. I was, instead, invited to stay. I had stumbled into my first support group. Everyone introduced him/herself and told a little about their loved ones who were in the hospital. That day I had one big question to ask – “How do you get used to the new personality?” One of the group members said, “You kind of get used to the new personality and they kind of go back toward their old personality and the two meet somewhere along the way and you adjust.” Now, that gave me something to think about until the next week when I rejoined the group. I continued to participate in the group until my husband completed his outpatient therapies. This was a very diversified group with many different needs due to the various injuries presented. Much of what I heard wasn’t particularly applicable to my situation, but there was enough to keep me attending.

About ten months out from my husband’s injury, I was afforded a great opportunity. It was a spousal support group just for wives of survivors of brain injury. Over a ten week period, we met once a week for two or more hours and discussed a different topic each week. It was a road trip to get there from where I lived, but it was worth every mile. There were other spouses and a facilitator in this group. Have you ever thought about the difference between sympathy and empathy? We ladies had a truckload of empathy for one another. I am blessed to have many close and caring friends. However, embarrassment or guilt kept some topics out of the conversations with them; but within this group – we shared everything, and I do mean everything! We became fast friends and I call them if I get in a tailspin. For example, I was devastated when my husband said, “I hope I don’t treat you the way you’ve treated me if you ever get sick. You were so wonderful to me in the hospital but that same person didn’t come home with me.” Even when I explained that he had five therapists helping him “get back,” and once at home I suddenly had to become all of those folks, his response was the same. I had to try to get him to do the exercises, both physical and mental. All that my former “high energy” husband wanted to do was eat, sleep, and watch TV. My empathetic friends helped me to realize that the anger directed at me was a normal reaction and that from now on, when he gets frustrated or angry, he will say the same things, be it old history or not.

When we get back together, as we often do, to share our “Adventures with the Brain Injured” and to give and take advice, it is like we are Cheerios in an ocean of milk; we bobble, but we manage to stay afloat. Sometimes the answers you get are not what you want to hear. On one occasion I asked; “How long is it before you stop grieving everyday for the person you’ve lost?” They answered that it had taken them two to three years. I cried all the way home that night, but the next day, I thought, “Hey! I’m halfway there!” I knew there was hope!

There is always something there to remind you. The day after Christmas of this past year I was very “low.” My husband had not given me a Christmas card or even a little token present. He had asked earlier in the month what I wanted and, even though my first thought was to say nothing, I made a couple of simple suggestions like perfume, slippers, or earrings. Just anything he wanted to get me would be great. I got nothing! This was a man who had always surprised me with really wonderful gifts. I began to think he really didn’t care for me at all. I called Peggy and after giving her the lowdown, found out that her husband had not given her a gift for Christmas, anniversaries, birthdays, or any other occasion since his accident almost five years before. Yippee! I have a perfectly “normal” husband with a brain injury. It helps knowing you are not the “lone ranger.”

Conclusion

“It helps knowing you are not the lone ranger.” With that said, I hope that professionals and family members will responsibly take this group model and customize it to meet the needs of your community. Although a brain injury may have turned your world “upside-down,” your world, and your life, did not stop turning. There is no grave to stand beside and mourn; there is no memorial service to attend. You must do your grieving and your celebrating of the life that is intact in your own way – in the manner that makes sense to you and your family. In the great words of Oprah Winfrey, never forget to
“remember your spirit.”

References:
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