Helping with Recovery after Brain Injury
By John W. Richards, M.S.W., MBA, Survivor and
Marjorie Crigler, Family Member
Brain injury recovery.
The days, weeks or months after a brain injury that a loved one is in a coma, in the intensive care unit (ICU), in the hospital or a rehabilitation program are difficult and stressful times for families. There are so many questions and uncertainties about the future. From our perspectives as a survivor of a brain injury and as a family member, this information may help family members and friends address those difficult questions of…
- what’s needed
- what’s best
- what to try
- what to work on.
How can I help as my loved one recovers from a brain injury?
We are not doctors, but we are going to share with you some of the things that, in our experience, have made a difference. We call them the intangible ingredients to brain injury recovery.
The doctors and staff cannot make precise predictions about the long term outcome or prognosis of your loved one. They probably have a good idea of the general issues and challenges, as they have seen other people in similar situations. However, they can not know how some of the intangible factors will impact your loved one’s recovery. These intangibles are described next.
Does it make a difference if our family is involved during the hospital stay?
Yes, absolutely and completely! It helps when families are consistent, persistent, positive, hopeful, and determined to be involved. Ideally, your hospital or rehabilitation program welcomes and supports your family’s frequent and ongoing presence. The staff may be highly capable and very motivated, but they do not and can not know your loved one as you do.
Tips on what you can do…
- Be with your loved one as much as you can.
- Try to think of the medical and rehabilitation staff as a team which also includes family members, friends and anyone else who is contributing to your loved one’s recovery and well-being.
- Share information with them, such as nicknames and favorite music.
- Remember to thank them for their hard work!
- Keep the lines of communication open so that everyone knows the progress your loved one is making.
- Be positive and hopeful without misrepresenting or skewing reality.
Tips for when you are with your loved one…
- A warm, caring touch is wonderful.
- “I love you” really helps.
- Any kind of cognitive stimulation is a good thing.
- Listen to music, read books aloud, sing, read the newspaper, watch sports.
- Bring the outside world inside.
- Include your loved one in the conversation, even if there is not much response right now.
- Talk to him/her, not about him/her.
- Play games, ask questions, bring in puzzles.
- Review things that you did twenty years ago.
- Ask and discuss trivia questions about a vacation you have taken.
- Talk about Cousin Harry and Auntie Em.
- Dream up anything you can to get your loved one’s mind working on anything.
How can I help motivate my loved one?
Recovery from a brain injury is a loooooong, difficult process. It takes tremendous work. Rehabilitation is a marathon, not a sprint! Therapy exercises are an important part of recovery as the survivor’s brain learns and builds new neural pathways to get the body moving again.
Does faith make a difference?
Faith and hope go a long way for families and survivors. Having and holding onto a positive faith that your loved one will get better goes a lot further than a negative outlook of being doomed to a life of disability. A spiritual faith helps answer the difficult questions of:
- “What was I saved for?”
- “What is the greater purpose for which I lived through this injury?”
These are far more useful and productive questions than, “Why did this happen to me?”
How will people react once my family member comes home?
Connections to the community are tremendously important. Get your loved one back out there to anything your family member can get to. Survivors need to relearn a whole lot of things about the world and how it operates. It is very likely that your loved one will lose friends and relationships over time. In general, people don’t know much and feel uncertain about how to relate to survivors. Unfortunately, survivors are collectively a pretty stigmatized group. Many survivors who can pass without being noticed generally do. Most people, when thinking about survivors of brain injury, generally just know that they don’t want to be one. The Brain Injury Association in most states offers support groups for survivors and some have them for families as well. They can be found on the Internet or through the Brain Injury Association of America. You will meet a number of people there who very much understand what you and your loved one are going through. If there isn’t a support group in your area, start one. There are 3.17 million other people living with brain injuries out there in the US who understand very well what you are going through.
What kind of support does a survivor need?
It will be different for everyone because each brain injury is different but all survivors can use consistent and ongoing support. Recovery from brain injury takes much longer than anyone would like or than you think it should or will. You are in this for the long haul.
Make sure you take care of yourself. You won’t be any help to a brain injury survivor if you yourself are unhealthy in mind or body.
How can I deal with all that has to be done and find what is needed?
Be a firm and persistent advocate for your family member. There will be a tremendous amount of paperwork to and from the insurance companies, agencies, the state, etc.
Part of your role is to…
- deal with it
- do it, and
- follow it.
Setting up and carrying a notebook or folder to meetings helps keep everything organized as you advocate for the best treatments and services. Another part of your role is to understand, as best you can, what the medical folks are doing and recommending. Bear in mind that they are human, too. They are doing the best that they can, but current medical science does not include a cure for brain injury.
How can I deal with the tough stuff?
There are a few things that have the potential to slow and substantially detract from your loved one’s recovery. Many survivors feel depressed as they recover, particularly as they are coming to some awareness of the time, abilities, jobs, friends, and relationships that have changed or ended. The losses after a brain injury can be tremendous.
Brain injury and alcohol do not mix well at all. Sadly, one of the strategies that many survivors use to cope with depression involves drugs and alcohol, which only makes things worse. Don’t go there! This applies to family members as well.
As we say in the brain injury community, a brain injury is a family injury. Yes, only one person actually got hit in the head, but the entire family is hurt in countless ways. They are called upon to do many things that are unfamiliar and unknown to get their loved one, and the entire family, back to functioning as best they can.
Finally, outcomes to brain injury are largely unknown. You can try all you can, do all you want, and there is no guarantee of what the end result will be. Following some of these thoughts has helped others who have walked “the path of recovery.” Best wishes to you on your journey.
Dr. Thomas Frye, Specialty Hospital, Crotched Mountain, Greenfield, NH
Centers for Disease Control, www.cdc.gov
Recommendations for more information:
By Debbie Leonhardt, M.A., N.C.C., L.P.C.
Brain injury workbook and organizer for persons with brain injuries and cognitive disorders affecting memory, planning and organization. For use in rehabilitation, community programs or home.
For more articles by John Richards, see:
Tip card by John Richards on negative and positive approaches to life after acquiring a traumatic brain injury.