Brain Injury Caregiver: Learning to Love a Stranger

The Resilient Caregiver Series- Tip Sheet #5

After a moderate-severe brain injury, you might notice changes in your loved one’s personality, memory, or communication skills. In the beginning, it’s hard to predict if these changes are temporary or permanent. Sometimes it’s enough to make a distressed caregiver say, “Who is this person? I want my old partner back.”

When my husband Alan had a severe anoxic brain injury, his personality changed in several ways. In time I could also recognize some of Alan’s familiar qualities and habits as they re-emerged.

While Alan was in Spaulding Rehabilitation Hospital we started to build on those familiar parts while getting to know the new parts. This is a long and emotionally challenging process for any couple. However, making the choice to rebuild our relationship was the first step forward in our new marriage.

Here are ten tips to keep in mind as you tend to your relationship:

1.      Take your time. So much will change in the first months. Gradually reacquaint the survivor with who he/she is and who you are. Tell short stories, show photographs. Repeat the most important information in a calm, kind tone. Less is best.

2.      Admit and grieve the losses and changes before deciding to commit to a new relationship. Consider talking honestly with a counselor, friend, or clergy. Write in your journal.

3.      Pace your expectations to the survivor’s capabilities. Memory problems, communication struggles, and emotional upheaval may prevent the survivor from showing recognition or love. Ask the staff how you can connect.

4.      Find new reasons to like and respect this person. For example, I had the utmost admiration for Alan’s courage, determination, and resilience. In time, you might fall in love again, as we did.

5.      Prioritize what matters most to you. I was very sad that Alan could not remember our marriage. So, I wrote a list of “Six things to know about Janet.” The list included how we met, why we loved each other, and a bit about my career. After months of drilling, Alan could recite the correct answers.

6.      Treat the survivor as an adult. Explain your expectations for behavior within her/his control. Go out on “dates” to practice social skills. Divide chores according to abilities and interests. Celebrate small steps forward together.

7.      Find new ways to have fun together. If you can’t socialize or be active in the old ways, invent new ways. Let the survivor introduce ideas.

8.      Seek mutuality in other relationships. The person with a brain injury may not be capable of knowing and supporting you in the mutually supportive way we expect of a partner. Consider finding mutuality with close friends or family members.

9.      Anticipate changes in intimacy and sexuality. Medical, cognitive, and emotional problems can change your relationship even in the bedroom. If the healthcare team doesn’t ask or offer suggestions, be sure to bring up your concerns. There is sex after brain injury. We just need to be open to modifications. Alan and I found it helpful to recognize when a problems was caused by a medication side effect or illness, rather than assuming it meant we didn’t love each other.

10.  Reinvent the relationship or marriage that works for both of you. There are no neat templates for a brain injury marriage, but there are many unique and successful examples!