Sometimes the best medicine doesn’t just come from the pharmacy or from a doctor, sometimes the best medicine comes in the form of attention, conversation and connection to other people who have experienced the same challenges. After the chaos of a brain injury has settled, a new reality hits, one fraught with obstacles such as; pain, memory loss, personality changes, disability, and more. Not only are those with brain injury impacted, but so are the caregivers and family members. We at the Brain Injury Alliance of Utah are committed to helping provide resources and connections to those who are suffering, and for many, attending a support group can greatly enhance the courage and strength that is required to carry on.
Kiera Berggren, Speech Language Pathologist at the University of Utah leads the Sugarhouse TBI Support Group, along with co-coordinator Jennifer Estep, which meets monthly on the fourth Tuesday at 7 pm. This group has been meeting for more than 20 years. “There are people who have been there since it started, and there are people who are new to the group. There are people who are high functioning, and others who need assistance with daily living tasks. Our support group has a good mix of abilities, both physical and cognitive.”
Three key benefits of attending a support group can be easily recognized by both presenters and participants. First is realizing that you are not not alone, that other people have been through similar situations. After a recent meeting, presenter Mark Fox, a Speech Language Pathologist for Intermountain Healthcare shared, “The educational component [to support groups] is really important but probably the most important thing is that people get together and feel like that they’re not alone.”
“I’m strongly encouraging anybody who had any kind of brain injury to come to this group or another group just to receive help,” shares a support group member. “What I love most, is not necessarily the speakers who come and teach, but the comments that are made by people in the audience about how they’re progressing with their experiences. It gives you the feeling you aren’t alone.”
Second is networking with others. Berggren observed, “I see brain injury survivors pass phone numbers to contact each other outside of the group. The veterans are super welcoming, and quick to provide tips, tricks and resources for the new families.”
And lastly, support groups provide education and resources. One support group participant shared her experience of attending, “[Support group] helps you understand your condition, I mean it’s not a simple thing to figure out. With new problems coming up all the time, you don’t know what to expect, and trying to find out where your limits are. All the information that they share is very helpful.”
Salt Lake resident and entrepreneur Laura Nordfelt lived life to the fullest with her husband Greg, adventuring cross country on motorcycle and participating in extreme sports. Three years ago their world transformed in an instant when she watched from behind as her husband crashed his motorcycle. Besides the PTSD that she experienced, their whole life was flipped upside down because of his brain injury.
“I felt a need to have a caregiver group, and talk with others who have been in my shoes, dealing with the same kind of issues.” She explained that it was difficult to really open up about her concerns and frustrations at a survivor’s group, because she didn’t want her husband to feel bad, or worse, for the burden she was carrying. “Greg went to survivor group meetings. I wanted to talk to caregivers and ask, ‘how are you dealing with this?’ I needed to start a group.” And that is just what she did. With the support of a few friends, and with some connections at TOSH, Nordfelt started a caregiver’s support group which is held simultaneously to the survivor’s group, on the third Thursday of every month. “At first we had 3-5 people come, and now we sometimes have 40 people show up. People are driving from Heber, Ogden, and Provo.”
Her experience gives her great empathy for the the unique challenges that caregivers face. “Caregivers are overwhelmed, there are so many changes over night. Survivors are surrounded with therapist and doctors, who provide support and medical plans. Caregivers are surrounded by no one.”
Because of the success, Nordfelt is currently working with the Brain Injury Alliance of Utah, alongside the CEO of Intermountain Healthcare to expand the caregiver’s support group all across Utah.
Nordfelt recognizes how blessed she and her husband have been, he is one of the few TBI survivors to go back to work in the same job he had before the accident. While 60-70% of couples who face brain injury end their relationships through divorce, she is determined not to be included in that statistic. “I have felt the need to have people to talk to, I need to surround myself with someone who understands. I wanted to get support, and now I want to give back. I want to help people in similar, or worse circumstances. I want them to have a place to come to.”
Looking back at the years filled with the unknown and looking forward to a new realty Nordfelt offers a few nuggets of advise for others who face similar challenges. “Life isn’t going to be what you expected. You have to change your expectations. I have to remind myself everyday. I had to completely change what I thought my life would be, if not, you are setting yourself up to be disappointed for the rest of your life. We live life differently now. And it’s okay.
“[As care givers,] we are overwhelmed with tasks that we are supposed to do. We have to be gentle to ourselves, and take care of ourselves. That can be really hard to do, but essential.”
In Utah right now there fourteen support groups dedicated to those suffering from a brain injury and for brain injury caregivers. They are located across the Wasatch Front, and down to Southern Utah; from Ogden to Provo, from Salt Lake to Tooele, and even down to Southern Utah in St. George. Nordfelt is currently working with BIAU, and Intermountain Healthcare to expand the caregiver’s support groups to every county in Utah. For an up to date list of support group locations, contact information and more, please visit https://biau.org/support-groups/.