Brain injury affects the entire family. Relationships change. Finances and employment can change. The familiar story changes, leaving us feeling adrift and isolated. It’s a big adjustment for everyone, and not all families or family members are able to adjust. Yet some are, and they learn to create good, post-injury lives.
One of those people is Terri Hicks, who is both wife and caregiver to her husband, Mike, who sustained a severe brain injury several years ago. They have both attended my journaling groups, so I knew some of their story. Terri graciously agreed to answer some questions for me about her life today, and her honest, insightful answers cover important issues such as coping with a vastly different reality, self-care, mourning, resilience, strength, and love.
My huge thanks to Terri!
Below our interview are some journaling prompts for you, so you can explore your post-injury life as a caregiver or person with brain injury.
• When your husband sustained a brain injury, how long had you been married? How did your relationship change?
When Mike’s injury occurred, we had been married 29 ½ years. Mike is, and always was, the love of my life. We basically grew up together. We got married in our teens, so not only is he my husband, but also my best friend. Our relationship changed quite dramatically, and it took some time for me to adjust to our “new normal,” which put me in more of a caregiver role and less of a partner role. We are 5½ years out from Mike’s very severe TBI, and slowly, since the accident, some of the partnership has returned, but due to the extent of his injuries it will never be the same relationship that it was before. I don’t say that in a negative way, but in order to continue to function in a relationship impacted by TBI, one does have to face that the relationship that once was a reality is not likely to be the same as pre-injury. It isn’t that we haven’t adjusted to our new relationship, and there are still snip-its of the pre-TBI relationship sprinkled in here and there, but it will never be the same as pre-injury.
• Once the reality of your “new normal” set in, how did you as Mike’s wife and now caregiver cope with it?
There are a few reasons I was able to cope as well as I did. First, I have a very strong faith in God. I know that I may not understand why something has happened, but I have faith that through trusting in God, it will all work out. Second, I had (and continue to have) very strong extended family support, without which I could not have continued to work or been able to push for Mike to get all of the therapy available to him. Third, I am a very strong-willed person. When someone says “you can’t” or “it won’t happen,” it just challenges me to make it happen and be more determined to accomplish whatever it is I am trying to do. And lastly—and this took a long time for me to learn—I now take time for myself. I get away for a few days, or my husband goes and stays with our daughter for a week or so and I get a little time to just breathe and take care of me. At first, I felt guilty for wanting/needing some time away from the situation, but I have learned that I am a much better caregiver when I take some time to rest and rejuvenate a little. Being a fulltime caregiver can overwhelm you, and you have to remember that you can’t take care of your loved one if you aren’t taking care of your self emotionally, spiritually, and physically.
• What was required for you to come to terms emotionally with your changed life?
Coming to terms emotionally with my changed life meant that I had to mourn the life I lost. I really believe when someone’s life is changed so dramatically in a blink of an eye, that it is vital to go through the stages that one goes through when there is a death; shock, pain, anger, bargaining, depression, reconstruction, and acceptance. If you try to suppress these feelings, they will continue to keep you from being able to move forward and learn to find some happiness in your changed life. I did not want to be defined by this accident. It had taken so much from me, my husband, and my family already, and I refused to let it continue to have a hold on me, but in order to get to that point, I definitely had some dark times where I just needed to cry and just needed to mourn the loss of a very happy stable life that once was so I could look to the future.
• What were some of the things you did to take care of yourself then? Now that it’s been several years, has your self-care changed? How?
In the beginning, my husband could not be left alone, so my family members and our friends would come over for a few hours and stay with my husband so I could just walk around the mall, go to lunch with a friend, or take a little extra time at the grocery store. I will say that that has changed in the past year or so. I can now feel comfortable leaving my husband for a little longer. I am an avid walker and love to hike a few times a week. Up until a about a year ago, if Mike didn’t want to go with me I wouldn’t go, but now if I want to go (because I NEED exercise for not only physical health, but emotional health), I take off and go…and Mike will usually tag along because he doesn’t want me to go by myself…so it ends up working out for both of us, because we both get some exercise. I also take 2-3 day trips with my daughters, leaving Mike with a family member to check in on him. I have realized that it is okay for me to do that in order to be a better caregiver to Mike. Mike was 47 when this accident happened, we hopefully have many years to look forward to together, and if I am unable to take care of myself, I will not be able to take care of him for the long haul.
• How honest were you with your children, some of who are adults, about what had happened to their father? How did they react?
I was as honest as I could be from the very beginning. This was new territory for all of us, so none of us knew what each day would bring, or ultimately, what type of future Mike would have once he survived the initial physical traumas of his accident. My oldest daughter is a radiologist, so she was very aware “medically” of what her dad’s injuries were. Our middle daughter, who fainted at the sight of blood, became one of the strongest, and most formidable caregivers to her dad in the days, weeks, and months to follow, and our son, who was 14 when his dad’s accident happened, probably was impacted the most negatively in the immediate aftermath of Mike’s injury. We had adopted him at age 7, and he was just starting to build a father and son bond with his dad, and that was ripped from him that day. For a while he became very reclusive, and sometimes seemed annoyed by how his life had changed. I have always been a very outspoken and sometimes brutally honest person, and I handled this in the only way I knew how: to tell the truth. We did not know from one day to the next what Mike might be able to do, or if he would ever even come home. Obviously, things were explained to my son differently than they were explained to my two daughters, who were older, but this was a learning process for all of us; none of us knew what each new day would hold, so we grabbed on to any information we could as we navigated through the tragedy that is TBI. I don’t think I would have even known how to “soften” the information I gave my kids, because there was nothing “soft” about it. We were on an unknown journey together, and we all needed to have the facts in order to be able to process what had happened and be ready to face the unknowns that were to come in the days, weeks, and months to follow.
• What advice or guidance would you give to other spouse/caregivers in similar situations?
- Don’t be afraid to ask for help. It takes a lot of strength to let go and allow yourself to accept help. It is vital to your ability to cope for what is likely to be a very long and difficult road.
- Even though it might be difficult to learn certain “facts” about TBI, read as much as you can, not that everything you read will apply to your situation, but you may learn something here and there that will help you navigate through this tangled web of TBI.
- Don’t give up: if you listen to every negative thing you hear, and then believe it, you may give up on something that is attainable. I remember reading that I should not expect any real improvement in my husband’s condition after a year…and we are 5 ½ years out and he is still improving! Just think of the person you love as yourself—no matter how old you are, you CAN continue to learn new things, so can the person with a TBI.
- Learn to appreciate the very small increments of improvement you see…they are monumental to the person with a TBI.
- Take time for yourself. In doing so, you are ultimately helping the person you are trying to take care of.
Be sure to subscribe to the first magazine for the entire brain injury community, Brain Injury Journey – Hope, Help, Healing. A digital subscription delivered to your email is FREE, or you can have the paper edition for $48/year. Click here to subscribe. The first issue will be available in early April 213.
If you’re ready to do some private writing in your journal, choose one or more of these prompts to get started. Do your best to write for at least five minutes, and I encourage you to write for 20 minutes if you’re able. Remember, though, if the topic feels too uncomfortable or scary, don’t force yourself to write.
If you’ve had a brain injury:
• My relationship with (name) has changed because…
• Write a letter to your spouse/partner/caregiver, explaining what you appreciate about him or her. Begin: Dear…
• Coming to grips with our new life after my injury required…
• One good thing I could do for my (spouse/partner/caregiver) is…
• To do that good thing, I can…
If you’re a family caregiver:
• How did your relationship with your loved one change after the brain injury? You can make a list, and then choose elements from it to write about. Or simply begin with: Our relationship changed…
• Write a heartfelt letter to an aspect of your life that has changed as a result of becoming a caregiver. Those aspects include relationships, activities done together or separately, employment, friendships, health, etc. Begin: Dear….
• Coming to terms with our new reality required…
• As a spouse and caregiver, I most would appreciate guidance on…
• I could get that guidance from…
• To take good care of myself as I care for another, I…
Read the rest of this post »