Several years ago my sister Rosanne said, “I often hear the phrase ‘you live and learn’, well I’m tired of learning, I want to start living!”
We laughed and the memory of the conversation still makes me smile. We were both raising children at the time, and learning all sorts of things we didn’t ever expect to learn. It’s one of those conversations etched in my memory that brings sisters or friends close as they share experiences.
It’s true sometimes we don’t get to choose what we learn. As a caregiver, often I have thought I didn’t sign up for this course, or I don’t want to know about this. There’s a certain amount of responsibility that comes from knowledge, so sometimes I think, ignorance is bliss!
In reality, it’s the unknown which causes fear. Whether it’s about a disease, injury, grief, or even raising children, the more we learn about it, the better we can handle it and usually it then becomes less dreadful. Knowledge gives us opportunity to improve and cope better. Knowledge makes us useful and compassionate. It’s the key to understanding others as well as ourselves. Knowledge makes a difference in how we live.
Because we’re always learning, we change through our experience and knowledge, therefore our relationships change. Some get better, some seem to stagnate and some come to an end. My experience is that every relationship, no matter how long it lasts, serves a purpose. Some teach us to be better than we are. Some show us what we don’t want to be, while others remind us just how blessed we truly are. Some keep pushing us forward helping us become what we are meant to be. Every relationship teaches us something. Don’t regret those that end for they were worth the effort if you grew from the relationship.
So when you get a course you didn’t sign up for or have a relationship that changed or ended, look at it as an opportunity to learn and grow.
Continuation from February 16, 2014, Survivor—Nich Sorensen’s Story
Written by, Jamie Sorensen
From the time of the car accident in 1999, Nich has gone from one job to another. Having a brain injury makes it extremely difficult to do even the most mundane jobs. He can “land” the job, but keeping it is a whole different story. For the last 5 years, he has been our stay at home parent, while I work outside the home. There are days he struggles with the fact that he can’t work. He’d love to be able to provide for his family and goes through ups and downs of feeling helpless. As often as I tell him that being a stay at home parent is more demanding than most jobs, he still has a hard time realizing he can’t hold down a normal job, or work a regular 40 hour a week job – it’s not physically or mentally possible. Having him stay home with the kids has its definite advantages! One of the side effects of his brain injury is OCD; it comes in handy when he does the cleaning! To me, his “job” is priceless.
Emotional insecurities are another struggle. Almost everyone that Nich was close to at the time of the accident, are now gone. People have a difficult time understanding what he goes through and deals with on a daily basis. When you look at my husband, you see a “normal” looking person; nothing stands out, or screams “I have a brain injury!” They are quick to judge, quick to think that he is lazy or unproductive, quick to think that he is ‘normal’ and should be doing everything a ‘normal’ person is doing. Many think his brain injury miraculously healed because they can’t see it. It’s hard for people to remember what he went through, and what he will be dealing with for the rest of his life. Since the accident, Nich sometimes doesn’t know how to feel, and has a hard time expressing grief or sadness. There are times when he knows he should be sad, or cry, but he can’t. There isn’t a day that goes by, that he doesn’t think about the accident, or about his best friend Melissa. It’s taken Nich years, to try and learn how to deal with his emotions of grief, sadness, loss, guilt, anger, and resentment. It’s still a work in progress, but he’s making improvements.
Life feels lonely and secluded at times. So many people have refused to take the time to understand what happened to Nich, or care about what is currently going on with his brain injury. Sadly, the people in our life (with the exception of his sister Amanda – who has remained such a close friend to Nich) have failed to remember the trauma that Nich’s brain and body went through; that it is something he will be dealing with for the rest of his life. We have ourselves, our three amazing children, and Nich’s fantastic neuropsychologist (who has been a true lifesaver time and time again). We don’t have outside help. It’s very exhausting at times, both emotionally and physically. I wish I could quit my full time job, stay home with the kids, and be a full time caregiver for my husband. Then I wouldn’t worry and stress so much when I’m away, and could be more helpful around the house. I also wish I could help him realize we will never abandon him and he will not be alone. My goal is to help others realize what he deals with every single day, and understand that his brain injury won’t just magically go away.
Our kids have had to grow up a little faster than we wanted. They know their Dad’s brain isn’t like everyone else’s, and he struggles with things most people don’t. They have to be patient and explain things more than once. They can’t always go outside and play when Dad has an “off” day. If I’m at work, they have to stay home and play inside, so they can keep an eye on Dad. Because he can’t drive, they have to walk a lot in the summertime (a good thing!). They know that Dad doesn’t remember things (no short term memory), and has A LOT of doctor appointments! Sometime they wonder why Dad isn’t laughing with them when they watch movies and something funny happens. When we go on vacation, they feel bad, because Dad can’t always participate in everything (like ride all the rides at Disneyland); he has to sit on the ‘sidelines’ watching.
The kids know Dad loves them and would do anything for them. They have him wrapped around their little fingers! If they ever want something, they ask their Dad first; if they have any problems they deal with Dad, rather than wait for me to come home. Dad is the fun parent. When he’s feeling okay, he’s the one who will play basketball, video games, walk to the store to buy treats with them. Dad is the one who begs and pleads with me to let them stay up late, and go to school late on occasion.
Having a brain injury has completely changed my husband. I can’t honestly say that the struggles we deal with have gotten any easier over the years—they’re just different struggles now. Even with his injury, he is an amazing, wonderful, astonishing husband and father; I couldn’t hope or want for anything more. Knowing all that I know now, I’d still marry Nich in a heartbeat.
I just want to send a quick THANK YOU to Ann, Amanda, the BIAU, Barbara (for this amazing opportunity), Melissa (in our thoughts every single day), the Benson Family, and to all of you out there who are taking the time to read this story. Hopefully there will be something in our story you can relate to, or help you understand what someone else is going through with a TBI.
Thank you Jamie for sharing your thoughts and feelings. Nich truly is a survivor!
The Winter Olympic Games are upon us and it is evident there are countless hours in many years of training for the athletes to compete. The hosting city and country plan and prepare four years and it’s a proud time for them as they show off their beauty and hospitality to the world. It’s sensational to watch it all unfold. Various athletes from all over the world coming together in Sochi to do their very best, showing their strengths and abilities.
It’s obvious there are many people behind the athletes as they prepare for the games. Besides family and friends that encourage and help them, there are coaches, technique specialists, apparel consultants, etc. All have the same goal and vision for the athlete to succeed. They’re amazing to watch and usually you’re only seeing one person competing, but in reality there’s a team of people standing behind the one athlete you’re watching. All making their success possible.
We all need others to succeed in our endeavors. No one makes it alone. It’s wonderful to have family and friends help and encourage us. They hear and see us with their hearts. It’s also beneficial to build relationships with others who share your goals, stress and struggles. They hear and see us with their experience. A meaningful and comforting way to boost one another. This is my goal with Uniting Caregivers. Together we can learn and improve our abilities. Sharing our stories and how we cope encourages and gives us strength.
Support groups are formed for most anything you are dealing with; addiction, brain injury, cancer, divorce, epilepsy, mental health, stroke and the list goes on. Mark and I have benefited from the Brain Injury Support Groups and the Epilepsy Support Group. We have learned much and it’s comforting to be with people who know and share our experience.
Tomorrow night a friend and caregiver of a brain injury survivor, Laura Nordfelt, is starting a new Caregiver Support Group in Murray, Utah. The meeting is in conjunction with the Brain Injury and Stroke Survivor Meeting from 7-8 pm. It will be held at the Intermountain Medical Center, 5121 South Cottonwood Street, Building 6, Classroom 8. The caregivers and survivors will meet first together and then split into two separate groups. The facilitator, Lynn Anderson, who has a MS in Social Work will meet with the caregiver’s group.
Support groups are a wonderful way to share and improve your experience. I encourage all to Goggle “support groups” in your area to find the help and support you might need. There is strength in numbers!
Written by, Jamie Sorensen
Our story began more than fifteen years ago. I met my husband, Nicholas, in high school; we were just acquaintances in our junior year. Nich sat behind me in our history class; he usually slept, or doodled on his homework, and then asked to copy my notes. He was very outgoing, social, and flirtatious. We were complete opposites and after high school, we went our separate ways.
On Saturday July 24th, 1999, at age eighteen, Nicholas was involved in a horrific rollover car accident. After spending a week at the Sand Dunes, Nich, his friends and family, were driving home in three separate cars. Nich’s family was in front, followed by Nich and his two best friends Melissa and Sean, and bringing up the rear was Melissa’s family. Nich’s Mom, Dad, and sister, in the lead car, lost sight of Nich and his friends, so they pulled into a rest stop to wait for them to catch up. That unfortunately never happened.
At approximately 6:34 p.m. near Tremonton, Utah, the Highway Patrol received multiple phone calls from witnesses, saying that a white Jeep hit the center median, swerved, over corrected, and rolled two or three times end over end. Nich and his friends were thrown from the vehicle. The driver, Sean, had the least extensive injuries; he was awake and talking. Nich, unconscious was taken by ambulance to the local hospital in Tremonton. Melissa, suffered the most serious injuries, and was life lighted to the University of Utah hospital. Tragically, she did not survive.
Nich was at the Tremonton hospital for a short time. He had difficulty breathing, because his lungs were filling with fluid. They transported him immediately by ambulance, to the McKay-Dee hospital in Ogden, Utah for two days, and then another transfer to Cottonwood hospital, for the next three days. Upon his release, he was referred to a neurologist (for the brain injury), and attended rehab three times a week for six weeks. He had to re-learn how to walk, talk, eat, and do all the everyday functions we take for granted. With the Traumatic Brain Injury, he began having multiple seizures.
In 2007, I stumbled upon Nich’s name online, through our high schools web page on MySpace. We were both coming out of unhappy and unhealthy marriages. I sent him a message saying “Hello do you remember me?” Surprisingly he did! We started talking a lot; learning everything about each other since our junior year of high school. We dated for a year and were married, February 17, 2008.
I knew, about Nich’s horrible accident before we got married, but I couldn’t have fully known what my responsibilities would be as the wife of a TBI survivor. You can’t prepare for things you’re going to have to deal with until you’re actually living with that person on a daily basis.
Nich has had two major grand mall seizures since the accident, but he suffers from petite mal seizures almost daily. He’s currently on three different seizure medications, all at maximum dosages, which keep the seizures at bay for the most part. A year and a half ago, Nich blacked out, fell and hit his head in the shower, causing another concussion. Two days later a golf ball size hematoma showed up on his head, and he started throwing up. The concussion caused his seizures to become more prevalent again. His driver’s license was taken away and since then, he’s had some major setbacks. He often forgets how he got from upstairs to downstairs. He has fallen down our staircase due to another black out.
I could’ve never expected many of the things we’ve had to deal with the past six years, but I don’t regret a single second of it. It’s taken a lot of patience and understanding. I’ve had to learn how my husband’s brain works. I’ve had to change my expectations and how I do and say things to him. Nich is one of the strongest people I’ve ever known. He is loving, kind and compassionate. He says what he’s thinking, when he is thinking it. He is romantic, sensitive, and takes great care of me and our three kids. He constantly puts our needs before his own, and is always seeking ways to make others happy. I feel so lucky to have my husband at home with our kids every day; he’s a tremendous father. I feel so blessed to be married to my best friend who helps me appreciate the little things in life. I try to be thankful for what we have, and try not to stress about the things we don’t. My husband and I look forward to every day we get to spend together.
It’s true, I wouldn’t have married that “boy” I knew back in High School, but the man I know now (post TBI, and accident), is the love of my life.
Jamie will share more of their story next Sunday, with Survivor—Nich’s Story, Part 2. Thank you for sharing your heartfelt story.
Marriage use to be new, fun and exciting. There is definitely a shift change that happens in romance over time. Not that this is a bad thing—just reality as far as I know it. I’ve been married for 35 years in June. Sounds and feels like a long time until I compare it to my parents who have been married for 63 years. How can you live happily ever after? This is what I’ve learned from my experience.
Physical contact is important.
I will never forget how much I missed physical contact with Mark for the three months he was in his coma. Sure I could hold his hand, but he was not capable of holding mine and I missed it! After my collarbone healed from our car accident, I was anxious to help the nurses and aids bathe Mark, rub lotion on him, and transfer him in and out of bed. I wanted so much to touch and care for him. I needed that closeness. The nurses and aids were willing to let me help and I loved doing it.
I’ll never forget the first time I slipped into the twin size hospital bed next to Mark, hoping no one would care. It felt so good just to be able to lie next to him and since the nurses didn’t kick me out it became a routine. I have never taken for granted the need for physical contact since those lonely long months after the car accident.
I love to see my parents holding hands as they walk or sit on the couch next to each other. To watch my father help my mother out of a car, down steps, or out of a chair is endearing. They have grown in tenderness with each other over the years. It is clear to me that they love one another and appreciate the time they have together. I am grateful for their example.
Positive reinforcement is a must.
Mark is especially good at accentuating the positive. He always makes me feel wonderful. He calls me S.U.G.A.R. and spells it as an acronym for Sweetheart, Unmatchable, Girl of my dreams, Awesome, Reason to live. He often reminds me and others who will listen what S.U.G.A.R. stands for. I love it and it makes me feel so special.
I’ve also noticed when I tell Mark he looks handsome, he sits up a little straighter and holds his head a little higher. We all need and enjoy complements.
Express appreciation for the other.
Every relationship is different. It’s not possible for me to have a relationship like my parents, but I am capable of having a loving relationship. Mark and I aren’t able to travel to far away romantic destinations or even go out for a romantic dinner and dance. But I can provide a romantic dinner at home and turn on some music so we can sway back and forth. I believe that no matter where you are in your relationship you need to appreciate it for what it is.
I feel so blessed to have the opportunity to be a caregiver for Mark. I know that by caring for him my love as grown more than I imagined possible. I appreciate every bonus day we have together. When a person only has a five to ten percent chance to live and no chance of coming out of a coma due to the extensive damage to the brain, you know every day is a bonus day.
Sure there are some things I miss about the early days of our marriage, but I wouldn’t trade them for the love, peace and contentment that are relationship as grown into.
Written by, Silvia Caswell
My husband, Elijah, had a slip and fall on icy steps while working outside the week before Thanksgiving, 2013. He hit his head on the stairs and we think he was unconscious for about 10 minutes.
When he came to, he was completely disoriented and his speech was slurred. No one actually saw Elijah fall because he was outside by himself. He was able to call a co-worker who found a work colleague who lives in the area to come and pick him up. He didn’t know where he was so he looked on his iPad for the location. He then could tell the work colleague where to find him. He didn’t remember what car he drove or where he had parked. He was immediately taken to the Emergency Room to be evaluated. He had a severe headache and the CT scan showed no bleeding. He was released from the hospital with a simple concussion and we were told that he would be better in less than three weeks.
Elijah is 28 years old, so he’s in pretty good health otherwise. At home, my kids and I began noticing that he had some issues with confusion, short term memory recall, inability to read out loud, and his balance was severely off. His headache was unbearable and we returned to a bigger trauma center ER to have his pain managed because it was out of control. Again they checked him with a CT scan, but no bleeding. We were sent home and referred to a concussion specialist at the same hospital.
After two hours of neurological testing, the concussion specialist put Elijah in the “severe concussion” category. Again they believed that he would get better soon and that we would be back to normal quickly.
A few weeks after the accident, and with each visit to the doctor, we began finding more problems. Memory recall was pretty poor, disoriented to time and place, headaches out of control, and he began falling. Our doctor then decided it was best to keep him supervised at all times because he had driven to a nearby fast food restaurant and left the children at home by themselves (ages 5 and 3), and had no recollection of ever getting there, ordering, and driving home. Now I hide his wallet and car keys so it won’t happen again!
Long story short… we’re two months out and he has fallen down our stairs at home three times. The last time, a few weeks ago, left him unconscious. The doctor believes he re-concussed himself. Also, he developed right side weakness, and his symptoms continued to be severe. So far he is seeing a neuro-psychologist, two neurologists, one cervical physical therapist (to help with the limited mobility he developed from being in so much pain constantly), and a balance physical therapist. He was then moved out of the concussion spectrum and into the “mild to moderate traumatic brain injury” category.
All family members have been highly concerned about Elijah and it has pretty much turned my world upside down. We have 3-5 medical appointments every week. I had to quit my job at the hospital (ironically enough I worked in Shock Trauma ICU, where we get these types of patients constantly), to be able to stay home with him. We have three kids (ages 5, 3, and 11 months), and they know that sometimes daddy’s brain plays tricks on him (that’s how we deal with his confusion), and that he needs lots of rest in a dark, quiet environment so his brain can get a chance to get better.
We have friends and family that help us tremendously by watching our kids when we need to go to our appointments. It has been a huge blessing. It is overwhelming to go to the hospital that many times per week and sometimes I wonder if I have the strength to keep up with everything. I am a huge exercise fanatic and exercise 5-6 days/week, as well as eat healthy. Most of the time I get up very early to do it because I need the energy to keep up with our small kids, tending to my husband and taking him to various places (obviously, he cannot drive).
I am currently attending college and am preparing for taking the MCAT this summer and applying to medical school later in the summer. It’s definitely thrown everything off track, but I have learned to be disciplined and schedule everything in, even workouts. I feel that if I do something to help myself be a better person every day, then I can take care of everyone else in a better way. I have had a past history with severe depression so I always need to keep myself in check.
The results from Elijah’s last trip to the neurologist where further neurological testing was done, show we are looking at another 3-6 month recovery. His physical exam did not correlate with his MRI, so we have an MRI/MRA scheduled in a couple of weeks. He will go under general anesthesia for the procedure because he does not tolerate the MRI machine noise at all (we found out the hard way). The doctor thinks he may have a microscopic bleeding that was not caught in the CT scan or a regular MRI.
I appreciate your blog and I am grateful for finding other caregivers who are going through a similar situation. Thank you!!!
Thank you Silvia for writing Elijah’s story. Best wishes for a full and speedy recovery.