The Effect of Brain Injury on Caregivers

On the third Thursday of every month, Laura Nordfelt inspires and uplifts caregivers in the Salt Lake Valley at the Intermountain Medical Center in Building 1. I met Laura and her husband, Greg at the 2013 Annual Brain Injury Conference. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the desire to return to a familiar way of life are very similar.Our hearts knitted together as they shared their story with me and their goals for helping those affected by brain injury.

At the last caregivers’ meeting on March 17, 2016, Laura shared some of her feelings on how brain injury effect’s the caregivers. I was unable to attend, but Laura emailed me the handout she’d put together. I was impressed with how accurately she’d expressed my own feelings. When I called to tell her how well she pinpointed my thoughts, she said many others at the meeting told her the same. With her permission, I share them with you.

Written by Laura Nordfelt

 Feelings of Isolation – You may be worried or sad because your loved one doesn’t “know” you or “understand” you the way he or she used to. Sometimes your new life may feel like a life sentence of solitary confinement because you are alone with the thoughts you used to share with your significant other. Remember its ok to feel frustrated. You may feel guilty for having thoughts of “not living up to the task.” Forgive yourself.

Brain Injury is Contagious – With shock and stress your brain might stop working the way it used to. You may experience memory loss, forgetfulness, following through with plans, lack of organizational skills, etc. TBI caregivers deal with a new plate of responsibilities in epic proportions. Some caregivers find it necessary to write every detail down (i.e. wash my hair). There are even stats to back up our forgetfulness and occasional depression and anxiety.

I Don’t Know How to Ask For Help – This was by far the hardest for me. I had too much pride and began to develop guilt and inadequate feelings like, I’m not doing a good enough job. Should I be leaving him to go to work? Is it ok for me to have free time?

Taking Care of Myself is a Group Effort – It sometimes means that you have to say “no” to phone calls, emails and events that you used to say “yes” too! Those very people who told you to take care of yourself may even get offended. Saying “no” will give you permission to get the much needed quiet time away from the world.

To truly support a caregiver in successful self-care, expectations need to be substantially lowered. This will lift the caregivers load enormously! Telling a caregiver to “take care of themselves” initially after an incident, may be too overwhelming. This advice needs to be delicately communicated in a loving manner at the right time and phase.  The closer a loved one is, the better they will be able to discern when it is essential to help a caregiver understand the “self-help” concept.                                                                                                         

I’m Not Perfect and There’s No Manual – Some days you will shine at caregiving and some days you won’t and you may doubt yourself. This is an intense situation. It’s a brain injury and it’s not just packaged into a small amount of time. It’s a lifetime role change. Just do the best you can and forgive yourself.

We received a large packet of TBI and Neuro Rehab information when we were discharged from the hospital, but I have no idea what happened to it.  I was in survival mode during the first 6 months after Greg came home.  Details and instructions were difficult to remember and organize. There was significant pressure coming at me from all angles. Keeping things straight became a foreign strategy.                               

Brain Injury Doesn’t Go Away – I received a lot of help at first and then support started to get quiet. In some ways it’s comparable to a death. Family and friends sort of go away over time. I realized its natural, but I was still trying to handle significant TBI rehab issues. Brain injury doesn’t go away. It goes with you on vacation and it’s with you everywhere. People will have to adjust to a new way of interacting with you and your survivor. Your friends and family may miss the old you, who you were individually and as a couple. That’s okay too.

I found that the first year is about surviving.  Then it’s about processing all the things you’ve lost while still being grateful for what you still have. This is much harder work!      

Making Lemonade from Lemons is an Art Form – Most of the comments I heard from Greg’s accident were positive and supportive. However, a few caught me off guard making me feel as if our lives were ruined. I refused to accept his brain injury as a life in ruins. If anything, it has provided us the challenge of living better and more productive lives than we were before.          

Volunteering in the TBI Community – Greg’s brain injury provided us both with volunteer opportunities that we never would have imagined. It’s brought us closer together in so many ways. It’s about looking for the silver lining in life.  It’s about lowering our expectations and getting real about what really matters in life like relationships, joy, time with loved ones, great meals together, sunsets, etc. What we would have considered small accomplishments are now huge victories.

Some of Laura’s thoughts and ideas originated from Abby Maslin, Reinventing our family. Ref: http://www.abbymaslin.com/ I’ve been reading Abby’s blog and I highly recommend it. She expresses herself very well and also writes articles for  http://www.brainline.org/abbymaslin/

For more about Greg and Laura Nordfelt’s story, see the articles I shared on March 30, 2014 and their news interview on September 20, 2015.

Thanks Greg and Laura for all you do for the Brain Injury community.