RECOMMENDATIONS FOR NEWCOMERS
TO THE SEVERE BRAIN INJURY ENVIRONMENT
The following tips were provided by a group of experienced Brain Injury Caregivers from all over the U.S. in 2022. These are recommendations only and should not be considered “Medical Advice”. These are opinions developed by caregivers who have been through the best and worst of Brain Injury Care and may not apply to every situation. Caution: they may be overwhelming at first. Take them in slowly
Advice for after your survivor gets through the initial trauma care
TO THE SEVERE BRAIN INJURY ENVIRONMENT
The following tips were provided by a group of experienced Brain Injury Caregivers from all over the U.S. in 2022. These are recommendations only and should not be considered “Medical Advice”. These are opinions developed by caregivers who have been through the best and worst of Brain Injury Care and may not apply to every situation. Caution: they may be overwhelming at first. Take them in slowly
- Don’t be afraid to be a loud and frequent voice. Brain injury caregiving requires advocacy!. Advocate, Advocate, Advocate!
- Don’t believe 100% that what you hear from medical professionals is going to be true for your survivor. Get input on the same question from several sources. No two Brain Injuries are exactly alike (If you’ve seen One brain injury…you’ve only seen One brain injury).
- Take advice about outcomes, plateaus, etc. with a grain of salt. No one can predict exactly how the brain will recover after a severe injury.
- Remember that not all medical professionals know what they’re talking about – especially when it comes to Brain Injury.
- Surrounding your survivor with family and friends is critical. Even if they are in a “coma”. Low family interaction is not good for healing.
- Move your survivor out of care facilities, hospitals, LTACs, etc. as soon as possible if the facility is not good and/or not providing adequate care. This may be extremely difficult but well worth it in the end.
- Don’t just accept substandard care, advice, or determinations from medical professionals. Ask around.
- Attend therapy sessions whenever possible, so when insurance runs out you can continue the therapy yourself. The insurance hurdle for discontinuing therapy due to “Not Making Sufficient Progress” is very low.
- Filter mixed messages – especially “Pull the plug”.
- Hospitals (in general) know very little about how to get a TBI survivor into the appropriate next level of care – like an LTAC or a SNF.
- Sometimes the best care locally is as good as the best care nationally if it means having a lot of family around.
- Be aware that there are many, many facilities that will promise they provide good Brain Injury care and rehab. But like everything from grocery stores to mechanics, there is good, better and best. Finding and getting into the best will not be easy – but the survivor usually only has one shot at a Brain Injury rehab facility. Its important to find the best one you can get into.
- Often times bad, incorrect information gets into the survivor’s medical file. This can follow the survivor for a long time and possibly prevent appropriate care decisions, admissions etc. Find out what is in the medical file. Follow up on decline decisions for reasons why. They may be based on faulty information.
- Be aware there are many air ambulance pricing scams. Find a Brain Injury Caregiver support group and ask about these if needed.
- Be aware that Brain Injury caregiving and recovery is “Not a race” but usually a “Marathon”. In many cases, full recovery and a return to the same person your survivor was before injury will not happen. It is hard to prepare yourself for this, but the sooner you start, the better.
- At the time of the survivor’s initial brain injury, the caregiver will be expected to “immediately” understand dozens of specialized things (guardianship, care facilities, treatment options, social security, etc.). This all comes at a time when….there is no time. Take a breath and do the best you can. Assign research to trusted friends and family.
- Taking care of yourself is of great importance. If you are the primary caregiver and you breakdown, your survivor will suffer. Pace yourself. Realize that this injury will change your life almost as much as it changes your survivor’s.
- Over time, your perspective on your survivor and/or their care may change. You might change. Be flexible.
- Get over any tendency not to want to ask for help. You will need it and people will want to give it. Be specific when others ask what you need. Have a backup ready (such as dinner dropped off next week, or sitting with your survivor on X day so you can get your hair cut, etc.).
- Get ready for possible mood, behavior changes as your survivor goes through recovery. This is not abnormal, but generally unexpected – especially in the early months.
- Some state’s have a Brain Injury Association, some have a Brain Injury Alliance (few, if any, have both). These organizations are often (not always) excellent sources for local information, advocates, etc. Find yours and call them for help. Follow up with them as new issues arise.
Advice for after your survivor gets through the initial trauma care
- Start working on Guardianship and Social Security benefits as soon as possible. Try to find an attorney who can help with guardianship documents on a “pro bono” basis (call your local bar association). You may think your survivor will recover to the point these are not needed. They can always be negated if this happens. But an early start can save a lot of headaches later.
- Make sure clinical notes in your survivor’s file are accurate. Incorrect information in the survivor’s medical file can follow them with grave consequences for a long time.
- Work on setting up home medical equipment (hospital bed, ramps, etc.), supplies, doctors and therapies as soon as possible. Don’t wait until discharge.
- Don’t let a facility discharge before you are ready to take your survivor home or to the next level of care. You may not realize this, but a hospital or facility can not force you to take your survivor. If you are not ready, tell them you refuse. They will not just put your survivor on the street.
- Be careful about bringing your survivor home thinking you can get them into a facility in the future. This is very difficult to impossible. Facility-to-facility transfers are the norm. Getting insurance to cover a facility’s cost after being at home is often impossible.
- LTAC = Long Term Acute Care Facility
- SNF = Skilled Nursing Facility
- Physiatrist = a Doctor specializing in PM&R (Physical Medicine and Rehabilitation)
- TBI = Traumatic Brain Injury
- Anoxic Brain Injury
- Hypoxic Brain Injury
- GCS = Glascow Coma Score
- DOC = Disorder of Consciousness
- More terms can be found at: