Coping with Brain Injury - An Approach for Spouses
Jane Greer, M.R.C., C.R.C., and Peggy Philbrick
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This article reviews some of the literature regarding family functioning following brain injury, provides first hand accounts of wives of spouses with brain injuries, and outlines the topics addressed in an adjustment group that is custom-designed for spouses of individuals with brain injuries. It is the authors’ hopes that families and professionals will take this model for a psychosocial adjustment group and appropriately customize it to meet the needs in the reader’s community.

Jane:
The spouses of brain injury survivors face many new changes. Typically, they become caregivers for their spouse who has been injured. They plan appointments with doctors, provide transportation, and become the “money managers.” To learn more about the needs and concerns of families of persons with brain injuries, a grant-funded project was conducted. Many families and, specifically, spouses were interviewed and, through this, their needs were identified. While no quantifiable data from this grant is available at this time, there are many reports from spouses about “being stressed out” or “at my wits end.” In addition, it is very common to hear statements such as, “I don’t know how to deal with it anymore,” and “He’s not who I married.” Such reports and statements prompted the development of a psychosocial adjustment group for the wives of brain injury survivors. The structure of this group is outlined below. First, I will review some of the literature that laid the groundwork for the group. immediate impact of the brain injury on the family unit. The family unit, however, is not only affected immediately after the injury. Family functioning is negatively affected by changes in the person with the injury and the day-to-day strain of meeting his or her needs for up to 15 years or more after the injury (Thomsen, 1984). An important step in customizing rehabilitation plans and services is to recognize that, just as each individual with a brain injury is different, each family that is impacted is also different.

A study reported in 1999 focused on family variables that impact functioning (Kosciulek and Lustig, 1999). Functioning was assessed using a scale that was based upon cohesion and adaptability. Researchers measured families’ responses to various situational and developmental stresses. On this scale, “cohesion” represents the degree of emotional bonding of the family members. And, the term “adaptability” is used in reference to a family’s ability to change and adjust roles, rules, and relationships in response to situational stresses. Based on the responses, families were classified as falling into one of three categories: Balanced, Mid-range, and Extreme. Families that are located in the middle of this two-dimensional scale – once again, using cohesion and adaptability as the two dimensions – are categorized as balanced types. Families that are positioned at the poles are considered extreme types.

And, the families given that the responsibility for the lifelong well-being of persons with brain injuries rests primarily on the individual’s family, brain injury affects not only the person who sustains the injury, but the individual’s entire family system. One of the most profound changes following a family member’s brain injury is the social isolation of the families (Kozloff, 1987). Professionals in rehabilitation recognize the that fall between the balanced and extreme types are termed mid-range or moderate. Balanced families operate as one might expect – they are highly supportive of one another, share in decision making and responsibility, spend time together, and are open to new ideas and opinions. Extreme families tend to be just the opposite. An extreme family will have more difficulty exchanging opinions and sharing emotions, they are more individualistic, and they are more rigid in their family roles and responsibilities. Mid-range families, as stated earlier, fall midway between the balanced and extreme families on these characteristics.

Three analyses were performed using eight variables to differentiate between the family types. The eight variables researched were: age of the primary caregiver, family income, family adaptation, age of the family member with the brain injury, time from the injury, and the affective, cognitive, and physical functioning of the member with the brain injury. Of the eight variables used, results indicated that the following three factors were the strongest factors in differentiating family types: (1) affective and cognitive functioning of the family members with the brain injury; (2) family adaptation; and, (3) primary caregiver age. These results may be beneficial for improving the efficacy of family intervention following brain injury and facilitating the development of long-term family supports (Kosciulek and Lustig, 1999).

Psychosocial adjustment groups are one form of intervention that can be invaluable in the process of rebuilding relationships and improving family funtioning. Psychosocial adjustment groups help bring together people who are struggling with similar issues, people who are in search of support and reassurance. Through such groups, people are able to realize that they are not alone in dealing with unusual circumstances. These groups can offer a place to discuss issues that commonly occur following a brain injury and yet are seldom discussed openly in other settings. For example, following a brain injury, spouses often see and feel changes in sexuality and intimacy. In the general population, intimacy is not discussed openly. Couples struggle to find a way to discuss and share their true feelings.

The impact of a traumatic brain injury on sexuality and intimacy is a truly complex issue. The symptoms and behaviors that an individual exhibits may be primary or secondary sexual dysfunction. Primary sexual dysfunction refers to a dysfunction that is organic; it is caused directly by the injury (changes in the control of hormones, loss of motor control, etc). Secondary sexual dysfunction refers to a person’s reaction to the primary injury, which in turn impact functioning. Usually it is an emotional response to the loss of function. For example, if a person lost the control of one side of their body, walks with a limp, or has other physical injuries, the awareness of this loss or change can be accompanied by depression, performance anxiety, low desire, feelings of inadequacy, and difficulties in the initiation of an intimate relationship (Aloni & Katz, 1999). These symptoms are not caused directly by the brain injury, but are residual results of the injury and impact sexual functioning. Aloni and Katz note that sexuality and intimacy dysfunction is an issue that is faced by many couples that include a partner who has suffered a brain injury. They emphasize that spouses must be comfortable discussing these issues with their doctors and therapists, as these issues are complex and involve both medical and/or psychological issues. For example, the arousal process of the human sexual response can be affected by communication problems. When either verbal and/or non-verbal communication is missed or misunderstood, the results are often stress, frustration, and withdrawal (Kruetzer & Zasler, 1989). Anxiety and stress are known to inhibit sexual arousal. Distractibility in the sexual stimulation process caused by impulsivity, irritability, altered concentration, and impaired ability to fantasize can also play a role in sexual dysfunction (Burton & Volpe, 1988). Spouses of persons with brain injury are very familiar with the impact of non-physical changes on intimacy and sexual functioning. The wife of a gentleman who has experienced cognitive and personality changes following his brain injury reported that she feels as if she is going to bed with a stranger – this is an example of how a brain injury can encroach on a relationship’s intimacy.

In addition to these deficits, there is the issue of medication. As more data is accumulated, the varying side effects of many medications are coming to light. And, it is becoming ever more apparent that many medications commonly used to treat TBI survivors affect sexual functioning in some manner (Aloni & Katz, 1999).

In an anonymous survey of survivors and partners, 70% of individuals with brain injuries and 100% of partners described their relationship as great or good prior to the injury. Six months post-injury there was a shift to 70% of the individuals with brain injuries describing the relationship as poor or terminated (Merritt, 1999). Maintaining a healthy relationship seems to be a challenge for everyone these days, but it becomes especially difficult with the added deficits and strains on a relationship that result from a brain injury. Peggy, whose husband sustained a brain injury, describes the challenges of maintaining and redefining family relationships.

Peggy:
Sometimes when we experience trauma in our lives we reach out to others for comfort and understanding, but more often, we hold our emotions in check and try to battle the aftershocks alone. This is what I did for over a year.

As a result of an auto accident in January of 1996, my husband suffered multiple injuries, including a traumatic brain injury. Having no concept of what a TBI could entail, I focused on the broken bones and other injuries, until the trauma doctors informed the family that the outcome of the brain injury could lead to his being in a persistent vegetative state or severely impaired. If we were extremely lucky, he would be able to live at home with nursing care.

After emerging from his coma, he was transferred to a rehabilitation hospital and it was here that he began the process of learning life’s functions for the second time – things like speaking, sitting alone, and walking. His response to the therapies was amazing and within two months he was well on his way to regaining his mobility and was able to do many daily functions for himself. It was decided that he could return home and continue his therapies as an outpatient. It was this homecoming that forced the realization that life, as I knew it, was forever changed.

During the acute trauma stage and the inpatient rehab that followed, my major focus was the physical injuries and being a cheerleader for each accomplishment. I was in no way prepared to handle the reality of the “new husband” that had emerged during his rehabilitation. He looked the same, but that was where the similarity ended. I continued to wait for the “old husband” to return, until finally accepting, after a long period of limbo, that the changes were permanent.

It is hard to describe the emotional roller coaster ride that followed the realization that our lives were permanently altered by the brain injury. I felt that my best friend and confidant was now self-centered and could not care less about what I thought or did, as long as his personal needs were met. I found myself totally responsible for every aspect of our lives. Fifty/fifty was no longer an option. I had to do my 50%, his 50%, and an extra 50% due to the issues arising from the brain injury. Emotions such as anger, frustration, and grief all were warring with each other for control. A weekly support group became my anchor, but many of the issues I faced were not topics to be discussed in an open participation support group.

A year after the accident I became involved with starting a Brain Injury Support Group in our community and was soon working with TBI survivors as a staff member of a grant program. Fortunately, this job also gave me the opportunity to work with a Rehab Counselor. Over the ensuing months my coworker was exposed to all of my “ups and downs” and she graciously helped me through the grief process that accompanied the transition from denial into acceptance. She was my mentor through the adjustment period and then through the process of rebuilding a meaningful marriage relationship.

As we interviewed survivors and their family members, the need for support in dealing with issues that arise in a marriage that includes one spouse who has sustained a brain injury became more and more apparent. The spouse must cope with all of life’s details with little or no emotional support from the injured spouse. Many of the issues are too private or sensitive to discuss with others; and, while family members or friends may listen, their ability to understand the depth of the emotional upheaval is limited. Spouses reported that most family members and friends focused on the survivor and failed to recognize the needs of the spouse.

Developing a means to offer the needed support became a focus of the project staff. We had several things in our favor – a professional counselor and the spouse of a survivor, as well as a consumer base of TBI survivors. The initial thought was to create a support group for spouses; however, there was concern that the randomness of the support group environment and non-directed conversation flow would fail to address the most pertinent issues. We determined that an open support group venue would not accomplish our objective. In order to get to the heart of the most difficult issues, we would need to create a method to direct the topics of discussion, with focus placed upon the painful personal issues that spouses are least likely to discuss.

I felt that having “been there and done that” would allow me to easily define the format for the sessions. What I failed to realize was just how difficult it would be to backtrack my journey through the “ins and outs” of being the spouse of a TBI survivor. By using journals and notes it was easy to come up with the subject matter for the sessions, but as I started to construct the questionnaires for each session I was forced to revisit issues that I had assumed were reconciled. I soon discovered that there were many with which I had only partially resolved. To say that the process was painful is an understatement.

As we assembled the session content and discussed each topic in detail, the discussions often became therapy sessions for me. I frequently vented my frustrations and pain. Jane did not complain; in fact, her input and professionalism made it possible for me to look beyond my specific issues and work toward a program that would meet the needs of spouses in many situations. Her oversight was the key to making this program workable. I will let her explain.

Jane:
Peggy has provided us with an explicit view into her personal journey, which shows us a rare and beautiful mixture of love and commitment. It may come to the surprise of many, but her story is not so dissimilar from the stories of many women across this country and the world. I recently heard a rather famous psychiatrist, speaking on human connection, state, “Love never goes wasted, especially love that is translated into action.” I would like for the many wives who have spouses with brain injury to know that their love-actions are not wasted upon their spouses. Many families are unaware of the consequences of brain injury and are ill prepared to assist with post-acute cognitive/behavioral issues (Rocchio, 1998). It is at this time, as an individual or family unit realizes they are not prepared, that they start the long and baffling search for “answers.” And two of the answers that are discovered during the group process are (1) how the individual 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.

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.”

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:
Aloni, R. & Katz, S. (1999). A review of the effect of traumatic brain injury on the human sexual response. Brain Injury, 13, 269-280.

Burton, L.A. & Volpe, B.T. (1998). Sex differences in emotional status of traumatically brain injured patients. Journal of Neurological Rehabilitation, 2, 4-8.

Cron, E.A. (2000). Couple Rating Scale: Clarifying problem areas. Family Journal, 8, 302.

Hibbard, M.R., Gordon, W.A., Flanagan, S., Haddad, L., & Labinsky, E. (2000). Sexual dysfunction after traumatic brain injury. Neurorehabilitation, 15, 107-120.

Kruetzer, S.J. & Zasler, N.D. (1989). Psychosexual consequences of traumatic brain injury methodology and preliminary findings. Brain Injury, 3, 177-186.

Kosciulek, J.F., & Lustig, D.C. (1999). Differentiation of three brain injury family types. Brain Injury, 13, 245-254.

Kozloff, R.(1987). Networks of social support and the outcome from severe head injury. Journal of Head Trauma Rehabilitation, 2,
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McCubbin, M. A., & McCubbin, H.I. (1991). “Family stress theory and assessment: The Resiliency Model of family stress, adjustment, and adaptation.” In H.I. McCubbin & A.I. Thompson (Eds.), Family assessments inventories for research and practice (pp. 3-32). Madison, WI. Family Stress, Coping, and Health Project, University of Wisconsin-Madison.

Merritt, L. (1999). Relationship issues in traumatic brain injury. Brain Injury Source, 3, 12-20.

Rocchio, C. (1998). The family perspective on psychotherapy service. Brain Injury Source, 2, 36-37.

Thomsen, I.V. (1984). Late outcome of very severe head trauma: A 10-15 year second follow-up. Journal of Neurology, Neurosurgery, and Psychiatry, 47, 260-268.

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