2277 Highway 36 West, Suite 200 Roseville, MN 55113-3830
Toll Free: 1-800-669-6442
Hours: Monday-Friday, 8 a.m. to 4:30 p.m.
Consumer Guide - Living with Brain Injury
After you or a loved one has sustained a brain injury, your life and the lives of those around you may be impacted in different ways. The way you see yourself and others may change. The following information will help describe some of the changes you or a loved one may experience after a brain injury and how to adjust to these changes.
Changes in Identity
Identity is defined as the characteristics that make a person who they are and is typically formed from childhood through adolescence and into adulthood. Brain injury can impact people during any of these phases of life, altering the perception of themselves and how others may see them. People may view themselves differently after a brain injury, this change can be a result of not being able to do things they once did. You and your loved ones may need additional reassurance and support during the recovery process.
"It took several months for me to discover that I wasn't who I thought I was. The more I tried to fit into that old identity, the more alien it felt... It was no longer who I was. It was like I was re-inventing myself, except it was actually a case of finding out that I had been reinvented! At first I did not like this new me; this me who could not do anything and was very vulnerable. It took time, many years, to create a new identity that I could even be comfortable with, if not actually proud of. It took years of hard work, and of 'staring down' desperation, to reach the point I am at now. Healing a brain injury is not a task; it is a way of life." – Mike Strand (Mind Matters Fall 2014, page 5)
After brain injury, some people feel lonely despite being surrounded by loved ones. This sense of isolation may arise from a variety of factors, such as:
- Difficulty communicating with others
- Difficulty understanding what others are saying
- Difficulty explaining thoughts and feelings
- Difficulty relating to others
- Feeling misunderstood
With many physical injuries – a broken leg, a routine surgery – there is a predictable amount of recovery time and successful rehabilitation can be attributed to how hard an individual works and their own strengths, abilities and personal motivation. Recovery after brain injury isn't always predictable – people on similar recovery journeys may heal at vastly different rates – so, it’s important to maintain hope during this lengthy process.
"Recovery does happen. Doctors tell families that the recovery is a two-year process and that the survivor will plateau and it stops. Well, there are things I can do today that maybe I couldn't do yesterday. The recovery never stops."— Ric Johnson (Mind Matters, Winter 2013, page 11)
Changes in Communication
Communication is complex and involves speaking, listening, writing, reading, and gestures. After experiencing a brain injury, you or your loved one may have difficulty expressing yourself, paying attention, understanding others, or learning new information.
Communication is fundamental in order to maintain relationships. Below are a few suggestions of ways loved ones can help with communication:
- Speak slowly and clearly
- Have difficult conversations when your loved one is rested
- Use simple words or short sentences
- Talk about familiar subjects
- Introduce new information slowly
- Use pictures, gestures, facial expressions, and written words to help explain information
- Reduce distractions and outside noise
Changes in Roles and Relationships
During the recovery process, individuals with brain injury may need additional support and reassurance from their loved ones and support network. The roles you and your loved ones play may be different following an injury. Changes that occur as a result of brain injury may impact your ability to be the same type of friend or partner that you were before your injury. After brain injury, you may need to give up home or work responsibilities in order to focus on recovery. You may be less independent and have to adjust to others doing for you what you used to do for yourself. Your spouse, children, or parents may take over roles you previously held. This can be a difficult time for the individual, family, and friends as the future may be unknown. Your loved ones may have new or increased responsibilities such as managing healthcare, handling finances, and caring for you.
When you have a brain injury a lot of people don't know how to handle it, what to ask or how to treat you. Sometimes family doesn't know how to react to you.'— Angela Halgrimson (Mind Matters, Fall 2014, page 7)
Changes in Sexuality
Sex can enhance the quality of life for people. When people feel good about themselves it can be easier to engage in a healthy sex life. However, after brain injury, some people may experience changes in sexuality and sexual functioning. During times of transition and strife people may begin doubting themselves and may not feel confident about how they look or move. This can impact a person's desire to engage in sex.
Since brain injury can impair reasoning, judgment, and inhibition, some people may notice inappropriate sexual behaviors after brain injury.
Sex after brain injury may also be more physically difficult. A person who has experienced brain injury should be cleared by a doctor before participating in sexual activities. If sex has become painful or difficult due to physical changes, it is important to speak to a primary doctor and rehabilitation team.
If you or a loved one has questions or concerns regarding this topic, please contact a healthcare professional you feel comfortable talking with. Some people find it difficult to talk openly about sexual issues. Begin by gaining the support of one trusted professional on your team who can start this conversation. It is important to problem-solve any medical, emotional or behavioral changes that have made participating in sex difficult.
Caregivers are responsible for making sure a person's needs are met. This may include tasks such as bathing and personal care, preparing meals, providing transportation, managing money, preparing medications, and scheduling appointments. Since each brain injury is unique and recovery varies for each person, the amount of support or assistance you may need from a caregiver also varies. Some people need assistance for a short amount of time after a brain injury, while others could require support from a caregiver throughout their life.
Since brain injuries occur unexpectedly, people often become caregivers for a loved one with no warning or time to prepare. Abrupt changes like this can be difficult for both individuals involved in the relationship. The role of caretaking can be overwhelming, exhausting, and stressful. Caregivers have mentioned feeling confused, alone, helpless, angry, and sad. Caregiving can also be rewarding and satisfying. Caregivers can find comfort in knowing they are helping to improve the life of their loved one with brain injury.
As a caregiver, it is extremely important to take care of yourself. Your wellbeing is very important and can be easily overlooked when caring for someone else. In order to maintain health as a caregiver, it can be helpful to maintain a healthy diet and lifestyle and visit a doctor regularly. Also, take time to engage in hobbies and activities that are important to you and your physical and emotional well-being.
If being a caregiver becomes a long-term arrangement, find out if there is funding available through state or federal programs. Caregivers, short or long-term, may utilize respite care that provides temporary relief to a caregiver in which a professional cares for your loved one for a short period of time so you can take time for yourself. This service may be provided in a variety of settings such as your home, adult day centers, or respite centers. There is sometimes a wait list for securing respite care.
Grief and Loss
After brain injury, people may struggle with grief and loss. You and your loved ones may feel as though they have lost the person they used to know. It may be helpful to open up to loved ones, acknowledge changes, and recognize feelings of grief and loss as a result of the changes.
Grief is a common emotion associated with loss. People with brain injury and their loved ones may feel this emotion with the realization that life may never be as it was before; your dreams for the future may no longer be possible. Grief is a process, not an event. There is no set time and each individual may react or behave differently while grieving. Some people find it helpful to journal, writing their thoughts and feelings. It can be helpful to connect with support groups, or seek professional counselors for guidance.
Aging with Brain Injury
Aging is a natural part of life; however, people who have sustained a brain injury may experience the effects of the aging process sooner and/or more severely. Activities of daily living, mobility, energy levels, and physical function may become more difficult. Brain injury should be viewed as a chronic condition, not a single event. Therefore, conditions and disorders may develop long after the injury. People with brain injury should visit their doctor regularly to assess for the development of conditions that may arise after the initial injury.