Brain Injury is the Silent Epidemic - Support and Resources
Based on the most recent data from the CDC, there were approximately 223,135 TBI-related hospitalizations in 2019 and 64,362 TBI-related deaths in 2020.
This represents more than 611 TBI-related hospitalizations and 176 TBI-related deaths per day.
While these statistics are startling, know that you are not alone, every day people have their lives forever changed by a brain injury (stroke, concussion/mTBI, anoxia, moderate to severe TBI, ABI) and there is hope in life after an injury to the brain.
CDC TBI Statistics: https://www.cdc.gov/traumaticbraininjury/index.html
Heart and Stroke Statistics: https://www.stroke.org/en/about-us/heart-and-stroke-association-statistics
Caring for a Brain Injury Survivor
Finding your balance takes times
Millions of adults in the United States are living with an injury to the brain, keep your hope alive and know that many others are in (or have been in) a similar situation as you.
During the recovery process most people living with a brain injury currently have (or have had) a caregiver who is journeying with them. Maybe the caregiver was/is a spouse, parent, sibling, kid(s), friend and/or professional; whoever is involved this caregiver has a vital role to play and this role usually lasts for months and / or years. Caring for a person recovering from a brain injury (mTBI, concussion, stroke, anoxia, TBI, ABI) is often overlooked.
Additionally, the critical role of caregiver has a unique set of challenges. Being a caregiver is a role most people feel unprepared to fulfill, it is normal for everyone to adjust to the changes. Caregivers carry the burden of worrying about the health of the person they are supporting, caregivers are trying to balance the demands of their new responsibility while simultaneously managing the myriad of other factors.
As a caregiver you will fulfill many roles, including but not limited to:
• Medical advocate, medication management, navigating the medical system, attending appointments and overseeing paperwork
• Nurse, taking care of the patient’s physical needs, Activities of Daily Living (ADL’s)
• Therapy assistant, home exercise programs, Instrumental Activities of Daily Living (IADL’s)
• Counselor, emotional support, motivational speaker, the voice
• Household manager, meal planning with food prep and meals, laundry, paying bills and caring for children and self
• Working to maintain income and access to health insurance.
As a caregiver you undergo a change in roles that has a significant impact on the person for which you are caring, yourself and everyone else around you (spouse, family, friends, work, etc).
Often people go from spouse to caregiver, from adult child to caregiver with no notice, no preparation and having to figure out everything on-the-fly or from professional caregiver in one setting to caring for people in another setting. Regardless, unexpectedly caregivers are thrust into being like a nurse, a counselor and a medical advocate in addition to being a spouse, parent, professional… its hard to be everything to everyone, life happens fast and it can be very lonely.
When a brain injury happens, you will eventually experience strain in your relationship with the person you are supporting. It takes time and understanding from everyone to adjust to this change and the new expectations it brings.
You Can make it through This brain injury!
Caring for someone with a brain injury can be draining:
Improve your longevity, avoid caregiver burnout:
Caring for someone with brain injury is physically, mentally and emotionally draining.
Physically, you will likely experience fatigue, difficulty sleeping, changes in appetite or problems staying active.
Mentally, you will likely find yourself swimming in medical jargon, paperwork, developing new systems for tracking information, feeling exhausted and at times confused.
Emotionally, you may feel anxious, guilty, angry, frustrated, helpless, hopeless and uncertain.
Experiencing responses like these is normal and you are not alone in the struggle.
Too often, caregivers focus exclusively on the needs of the brain injury survivor and do not take into consideration their own needs. Unfortunately, caregiver burnout happens frequently and can express itself in ways such as but not limited to:
• Increased anxiety
• Social withdrawal
Caregiving is hard, it's important to be mindful so that you avoid common challenges that lead to burnout.
Despite all the challenges, taking care of a person (even someone you love) can be (and should be) fulfilling for you (the caregiver) and the person you are supporting (brain injury survivor)… you both can grow through the recovery journey.
In the beginning (and throughout the recovery journey) it is normal to feel alone and ill-equipped. Rest assured that on this journey you will find strength, compassion and courage through caregiving that you never knew you had!
Quick Tips For Brain Injury
Caring for a person with a brain injury
Educate yourself. Learn (or know) as much as possible about the person and then the mechanism of injuries to the brain and body. We all are people first and even though the trauma to the brain and body changes things, the person inside is still there and should be heard. In time specific information about the parts of the brain and body that have been injured will help you know more about treatment options and timelines. Ask professionals (doctors, nurses, case managers, etc) about caregiver and patient education materials, trainings, resources and the overall plan of care. The more you know about the person and injury severity the better prepared you will be to help identify treatment goals. The more confident you (and the brain injury survivor) are the more empowered you will feel about making decisions that move rehab forward.
Find a brain rehab team you can trust. Find a team (doctors, therapists, wrap-around supports) who are experienced in brain injury rehab/care. A team approach to provide individualized care is important. An integrative approach is most important to help each survivor of brain injury make the best recovery for them. Also, having doctors, therapists and direct support specialists / caregivers in the same location provides greater convenience and more streamlined care.
Stay organized. Keep timeline and record of the medical history, test results and medications. Find ways to write down (or use an app) to manage / track appointments, physician names, after visit summaries with contact information, including the pharmacy number. Consider making a list of daily responsibilities and prioritize what needs to be done.
Keep all physicians informed. Electronic Medical Records (EMR) are good BUT there are still significant gaps in communication between EMR systems. Know who the prescribing physicians are so you can update doctors about new symptoms they exhibit, such as changes in sleep, seizure, mood, bowel habits or appetite. These side effects may stall treatment, delay recovery and hinder quality of life. Don't wait for the next appointment to contact doctors about an important observation(s) you experience.
Follow your loved one's (the TBI survivors) lead. Don't tell the person who survived a brain injury what to think, how to feel or how to act. Since you don’t know what the person is going through at that moment – don’t judge them & don’t attempt to control them – instead let the person take the lead. Instead of saying things like, "I know how you feel," try saying, "I am here for you and we'll get through this together.”. Of course, if the person is going to put themself or others at risk of being hurt, please immediately intervene and always maintain a safe and supportive environment.
Accept hard days. It is normal for caregivers and the brain injury survivor you are supporting to experience bouts of frustration, depressing thoughts / feelings, anger or just having a bad day. Find hope in your recovery and know that staying positive all the time is hard for everyone, be realistic for yourself and the person you are supporting. Accept the hard days, give each other space, have grace with each other and try not to take things personally.
Find a balance. It doesn't always have to be about therapy goals and “getting back to being your old self” (pre-injury life). You (the caregiver) and the brain injury survivor may need a break from talking about TBI rehab. If you touch on hot topics that create negative emotional responses then try not to bring up the subject for a little while and seek out help to process the topic(s). Re-focus conversations on other things, like spending time together doing something fun. Find good distractions that you both can enjoy.
Remind the person that you care. Everybody needs some body and just because you are present may not be enough. Some people (caregivers and brain injury survivors) may need extra reassurance that he or she is still needed and loved. Find gifts that reflect who he or she is apart from the brain injury. Consider things such as: art, books, cars, fishing, music, sports and the like. Letting people know that you still see him or her as a person, not as a brain injury.
Grieve your losses. You may miss your old life, this is normal. Take time to grieve your losses and seek professional help as a caregiver and/or family member. Try not to get caught up in focusing on the past and why this happened. Instead, think about what you can do now (remain focused on the present and future). Take it one day at a time, understanding there will be both good and bad days. TBI recovery is a journey with no end... day by day make the most of the time you have.
Be easy on yourself. Professional caregivers just like family, often feel the need to do everything perfect, to have all the answers. When you make mistakes, you may feel like you could have done something better. You may also feel guilty. Try to let go of the guilt of a mistake and don't be too hard on yourself about not having all the answers. Most importantly, recognize that protecting your own health is essential to being a good caregiver.
Avoid family drama and conflict. Hard feelings can develop if one caregiver (professional, family or friend) feels they are doing all the work and other family members or caregivers aren’t doing their “fair share”. Everyone reacts differently in this type of situation. First off, be patient with others (family members and fellow caregivers). Don’t try to solve all interpersonal family dynamics and/or workplace issues/conflicts while the TBI survivor is trying to get better. Remain focused on what is most important at a given point in time. “Do for one person what you wish you could do for every person” – Andy Stanley. Be kind, listen, ask questions and take action to serve the needs of those around you.
Prioritize responsibilities. Make lists of daily tasks and prioritize what needs to be done today and in the future. Create space so that activities, rehab programs and life coincide with short rest periods. Remember that as a person recovers the share responsibilities you have assumed as a caregiver (or family member) are likely to change over time. Most people want to feel and be independent and in control as possible. Be mindful of yourself and the person you are supporting. Consider creating a “your job and my job” list so that there is clarity in roles and responsibilities (remember to start simple and small to build confidence and routines).
Manage time. At times caregiving (as a professional or family member) is isolating and lonely. You don't have to feel guilty about needing some time for yourself. Know that the person recovering will likely feel the same way too. Build into your schedule small increments of time for yourself each day. Take deep breaths, go for a walk, watch a movie, call a friend, read a book, listen to music, do something to re-charge your batteries. Doing something you enjoy can help you feel refreshed.
Monitor your own health too. Your health is just as important because if you are not well then you will not be able to care for others well. Don’t ignore physical and emotional symptoms, such as loss of appetite, difficulty sleeping or difficulty concentrating. Stay on top of your doctor's appointments and any medications you are taking. Getting enough sleep, regular exercise and balanced nutrition all work together to reduce irritability and fatigue. As mentioned above consider mind-body techniques, such as relaxation strategies or deep breathing, these reduce stress and anxiety.
Write it down - journal. Many caregivers feel more emotional than usual as they try to cope with how fragile life is. You may feel angry with the accident, the brain injury itself, the situation, yourself, other professionals, family members, doctors, etc. These feelings are all normal. Find your way to process the situation in healthy ways. It may help to keep a journal, write a letter or paint a picture to release your thoughts and feelings so you can better manage them.
We all have limitations – know yours. It's common for caregivers (and family) to feel that they aren't doing enough to help. Try not to take on more than you can handle. You may be struggling to balance your caregiving duties with your other full-time responsibilities. Look into what training and supports are available for you at work. Consult with your leadership, your doctor to determine if/when other professional resources may be needed.
Accept help. All too often caregivers (and family) think they are the only person who can do the job. While you may be good, no one is perfect and we all have limitations – accept help! Sharing the responsibility with others, being specific about what you need done (such as cooking, cleaning, shopping, laundry, yard work, etc.) and collaborating to achieve shared goals is essential to your longevity. Use technology, some websites provide calendars and other tools for coordinating help from others.
Build community and connection. Staying connected with people can be harder than you think. After the initial rush of support post-injury there may be a draught in people checking in on you the caregiver (of the family). If you are alone as a professional caregiver (or family member) you need to find a community of people that support you and where you feel connected. This may be a place you share feelings and concerns or a place you can relax. As a professional caregiver see about joining a committee to connect with peers, a caregiver support group where you can talk about your experiences and advice. You may also consider speaking with a professional counselor or spiritual leader.
NOTE: This information is not intended nor implied to be a substitute for professional advice. Always seek professional advice when making important professional decisions. Always seek the advice of your physician or other qualified health provider about making healthcare decisions.