Living with Brain Injury

A brain injury can change your life in an instant. In this section for people with TBI , you'll find information about getting a good diagnosis, managing and treating.
Table of contents

According to the CDC, 1. Fifty thousand of these traumatic brain injuries result in death each year. Carla might never be able to communicate with her children meaningfully. She certainly will not be able to get back to her work any time soon if ever. Her social network will be disrupted; her schedule will be a series of medical appointments and consultations. Unlike a fracture or an elective surgery, the ordeal does not end after the medical procedures are through.

When a person sustains a TBI — in most cases families face some of their toughest challenges after the immediate palliative procedures are complete. The patient goes through acute care, an inpatient rehabilitation program, and then may be discharged to their home. In some cases, if they are medically unstable they are required to stay at post-acute settings and also receive outpatient rehabilitation. Some states in the USA also offer long-term care centers for those patients who might never be able to function safely and independently in their homes.

Caregivers are often torn between running their homes and visiting their loved one; living their own life and accompanying their loved one to various medical appointments. The residual physical impairments are only one aspect of the injury. Patients with TBI are prone to emotional disturbances, outbursts and attacks of a myriad of emotions ranging from depression to frustration to extreme rage. They also elaborated upon two styles of coping — non-productive coping avoidance, self-blame, resorting to drug and alcohol use, etc and adaptive coping accepting the problem, and taking proactive steps, incorporating humor and enjoyable activities, etc.

The results of their research study suggested that there was a statistically significant correlation between the type of coping mechanism used and ability to overcome the emotional problems. As a physical therapist, I have spent more than 10 hours a week with one patient and their families. This intense, one-on-one time gave me a glimpse into their current lives and a hint of how things were before this terrible episode dictated every aspect of their lives.

I worked with moms who did not recognize their children, with professors who had completely lost the function of speech and teenage boys who would spend all of their adult lives confined to a wheelchair. I saw families attend session after session, hoping to find a fragment of the person they once knew and loved. The same study also suggested that partners of people with a TBI scored higher on stress indicator scales than parents; for the most part, women appeared to be more stressed than men. For most people who have not been through these experiences, this information may be unfamiliar, and difficult to relate to.

Bring enough medications prescription and over-the-counter as needed. Include an extra day or two to allow a buffer should travel plans change. Be sure to include extra pain medications. Always keep medications and any critical care items in your carry-on baggage should flights be canceled or delayed. Pack a variety of comfort items and activities such as a travel pillow and blanket, books or audio books, portable electronic device loaded with music or games, headphones, and snacks.

Sean packs the items he needs in his backpack whether we are flying or driving so he has them close at hand. If you have a service dog, be sure to include treats and comfort items along with necessary care tools and plenty of food. When flying, allow enough time to comfortably get through security and to gates on time. TSA offers a service for disabled veterans that will provide assistance at the airport.

If you are staying in a hotel, locate nearby restaurants or choose a hotel with a restaurant onsite.

Living with a Brain Injury

Dine at off-peak hours to avoid crowds. If using public transportation, study the routes and fares ahead of time. Have taxi fare and reliable cab company numbers on hand. If driving, know the best routes around town and the locations of your destinations.

Remember that when you return home extra recovery time will be needed before starting your normal routine. Sean received training in safe cooking techniques during his blind rehab programs and is interested in becoming more independent in the kitchen.

You might also try make-ahead freezer meals that can be reheated by following instructions taped to the container. Convenience meals such as microwave meals, frozen dinners, or sandwiches are another easy way to share in the cooking responsibilities. Preparing to be away from home or, gasp! By planning ahead of time when possible you can make your absence easier for all parties. Pre-planning is especially valuable when absences come as a surprise. Being helpful and providing care for you is an easy way to put anxieties to rest. Always carry emergency information in your wallet or purse.

A new option available for purchase is My ID band which allows medical professionals to electronically access your emergency information. Smart phone users can download an app such as ICE In Case of Emergency which displays emergency information on the lock screen in case you are in an accident. I know what to do in an emergency involving Sean. I carry his critical medical information and know his history.

Living with a Traumatic Brain Injury

But what if an accident occurred and I was not the person on the scene? What if something happened to me, would he know what to do? Creating an Emergency Binder could literally save a life. If you are interested in a free, ready-made packet you can print and fill in, email me at melissa familyofavet. Also, be sure to post emergency numbers in a visible location and include suicide hotline numbers.

Check them out and see what might work for your situation. Sean also uses Brain Fit and Brain Trainer apps occasionally. He has the MyLocation app which allows a user to find their location and share with others. It can be incredibly difficult for family members and friends to understand the changes that happen after injury.

This is especially true when dealing with an invisible injury like TBI. Be prepared to have difficult conversations. Whether discussing care concerns or expressing a need for space and privacy, conversations with family members can be touchy post injury.

31 Strategies for Living with Traumatic Brain Injury

Every member of the team has different abilities, skills, comfort levels, and limitations. Be clear about who is in charge of making care decisions, and what medical information will be shared. Share strategies that work. Encourage others to get involved in positive ways by following the model that works for you.

Most importantly, be sure all members are educated about the nature of the disability and expected outcomes. Share information on TBI that you find helpful. Visit your local county extension office, or do a quick google search, for local brain injury agencies or support groups. Journaling has been shown to help reduce symptoms of anxiety and depression and improve overall feelings of self-worth. Taking time each day to jot down notes about the events of the day and how you felt throughout the day is an excellent tool to help get in touch with emotions and process feelings.

By reading through previous journal entries you can identify common stressors or triggers and develop a plan for positive coping strategies when those triggers arise. Depending on your preference, a personal journal can be shared with doctors or counselors for more insight. For those with TBI, a journal can also serve as a reference book to record events and memories. Eliminate what you can. Start by reviewing activities for each family member. Why are you involved with each activity? Is this activity meaningful and necessary?

Does this activity enrich our lives in long-term ways?

Living with Brain Injury

If not, consider eliminating it. Keep in mind that the goal is to streamline your home life and relieve stress and tension from your family. Talk to other parents about carpooling to activities. There are usually other parents who would be relieved by a rotating schedule. Choose activities where your child is adequately supervised and time is structured to gain time for yourself. Use this time to run errands, or, bring a good book and enjoy a little down time. What can you outsource? Do you have a neighbor who can share carpooling duties to and from school? Is there a friend or family member who can take the kids off-site for playdates?

Can you afford to have someone come in to clean or have groceries delivered? Utilize available services such as Occupational Therapy, Speech Therapy, Physical Therapy, or Recreation Therapy along with services through any available caregiver programs. These trained professionals have a wealth of information and resources. No one is prepared for major life changes.

We all struggle to get through the day at times and find it takes much longer to recover after setbacks or when new issues arise. Sleep is essential to good physical and mental health. Lack of sleep over a period of time causes your physical health to decline and can lead to increased depression and anxiety. To combat sleep deprivation and allow your body as much rest as possible, establish a sleep schedule by going to be and waking at set times each day. Take naps, if needed, early in the day.

Avoid if napping disrupts nighttime sleep. Keep the room dark and cool. Make the bedroom a quiet space, or use a white noise machine to create an audibly peaceful environment. Invest in a comfortable mattress, pillows, and bedding. Alcohol and nicotine can also be factors in quality of sleep. Take time to unwind before bedtime. Read, meditate, or practice deep breathing exercises.

Take a warm bath. Listen to soothing music.

Further Reading

This can help your body and brain get into sleep mode. Independence is a critical component of recovery after TBI. While your loved one may not be able to do all their former activities to the same extent as before the injury, implementing support and modifications can maximize independence. Melissa Johnson and her husband, Sean, were married in and raised their three children in Aberdeen, SD. Melissa taught for 15 years in Special Education and First Grade.

Sean served in the US Army and was deployed three times in his year career in the military. Sean was injured by a mortar blast on March 25, , in Balad, Iraq. The blast resulted in a traumatic brain injury. Sean is also legally blind and struggles with post-traumatic stress disorder. Melissa eventually left her teaching job to become a full-time caregiver to her husband. Read more from Melissa on her blog: Bringing the Battle Home. My TBI happened 33 years ago when I was Head injuries were not understood nearly as well then, especially in children.

At 46 years old, I finally have a Psychiatrist that is treating me as a person with TBI instead of a person with various psychiatric disorders such as Bipolar or Generalized Anxiety. After just 2 months of recognizing the head injury as a primary cause of my difficulties, I am finally seeing some positive results and feeling some amount of hope for a better functioning future.

Although I suspected the cause, I'm just beginning to truly understand why I have such a hard time accomplishing the most basic, daily goals. It helps to see how you and Sean have found ways to maneuver through day to day living. This makes me feel good! I've been living with my tbi now for the past 17 years.

No one told me about this stuff. This is how I coped with life minus the phone apps cause I wrote notes everywhere. I still struggle with things and yes, I do use my phone for a lot of reminders. Strategy no 32 - the most important one. Have a wonderful person like Melissa to help you with all this. Hats off to you Melissa for everything you do, and Sean, I know how hard it is. Melissa Johnson, Bringing the Battle Home. Use a Mobile Calendar App I created a calendar for Sean in my iPhone and shared it with him see brief instructions below or click here.

Sign up for Cozi Visit cozi. Hold Daily Meetings Choose a time of day that is structured not over dinner, while doing homework with the kids, or while distracted with other activities and is a typically a good time of day for focus. Try setting a timer to: Break tasks into smaller steps Allow for scheduled breaks Set start or end times for activities Allow transition time 6.

Use Labels TBI can make it difficult to remember where items are stored, and looking through multiple cupboards and drawers can add frustration. Keep Things in the Same Location When our daughter was home last summer she helped put groceries away and moved the yogurt to the opposite side of the refrigerator shelf. Simplify Household Chores Keep chores simple. Create a Safe Space Sensory overload and stress can lead to fatigue, anxiety, and anger. Using Tools to Aid Memory Highlighters and Post-It notes or sticky tabs are great for marking important information in books, binders, and manuals.

Track Health and Activity It is important to document health changes and symptoms to identify patterns and track changes over time. Manage Medications Medication errors can be harmful or even fatal. Find a Hobby Keeping the mind and body active is an effective tool against depression, anxiety, and even pain. The following are key areas that can impact success when completing tasks and activities: Difficulty sustaining concentration for a period of time Inability to filter or combine information Losing track of time Fixating on one aspect of the task, unable to move forward Inability to make decisions, or making quick decisions which are not thought out Memory and confusion issues Slower processing time It is important to allow time to think and respond, and provide prompting as necessary.

Good ways to assist include: Be generous with wait time. Limit the number of steps. Use note cards or prompts. Remember building toward independence is a process. Manage Stress Stress is a normal physical response to events that make you feel threatened or upset your balance in some way. Eat a healthy diet. Practice good sleep habits. Reduce caffeine and sugar intake. Avoid alcohol, cigarettes, and other drugs. Learn to say no. Take time to connect with others.

Find activities that replenish your soul. Stick to a Routine Individuals with brain injury may have difficulty planning and organizing their daily tasks. Travel Wisely Travel can be stressful even under the best of circumstances. Always keep medications and any critical care items in your carry-on baggage should flights be canceled or delayed Pack a variety of comfort items and activities such as a travel pillow and blanket, books or audio books, portable electronic device loaded with music or games, headphones, and snacks.

If driving, be prepared to make stops along the way and allow break time. When you arrive at your destination, allow time to settle in before starting activities.

Have a clear but flexible itinerary with planned breaks and meal times. Plan the menu and shopping list. Choose meals with fewer steps to follow. Use a tray to gather ingredients at preparation time.