Optimal Recovery after Brain Injury: FAQs

 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?

reachingforstar11Faith 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?

stairs & black womanThere 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.

Summary

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.

References

Dr. Thomas Frye, Specialty Hospital, Crotched Mountain, Greenfield, NH

Centers for Disease Control, www.cdc.gov

Recommendations for more information:

Survival Kit

Survivor Kit 

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:

Coping with Survival Tipcard

Coping with Survival 

Tip card by John Richards on negative and positive approaches to life after acquiring a traumatic brain injury.

 

Lash Blog Permission

5 Responses to “Optimal Recovery after Brain Injury: FAQs”

  1. Marie Heroux says:

    Dear Craig:

    Would you be able to help my daughter, Julie, living with ABI since June 6/2005.

    Would you know where we can take Julie in Canada so she can relearn how to walk again.

    She’s 24 years old.

    Sincerely,
    Marie Heroux
    Julie’s Mom

  2. Marie Heroux says:

    Hello Friends:

    My daughter, Julie, at age 18 was t-boned and left with a catastrophic brain injury.

    I too refused to have them turn off her life support.

    I cannot find a place in Canada that teaches someone like my Julie how to walk again.

    We are at a fantastic place now, but it is in the U.S.

    One of the people at the center had a spinal cord injury, and he is walking today.

    If you know of anything in Canada that could teach Julie how to walk again, please let me know.

    Sincerely,
    Marie Heroux

  3. I totally agree with you. I think that one could help himself recover from an injury, and even recover faster with the support of one’s family. Therefore, people should never lose their hope.

  4. Hi Barbara,
    I would like to be of service to both you, your husband and other brain injury survivors. Please let me introduce myself. My name is Craig J. Phillips. I am a traumatic brain injury survivor, a masters level rehabilitation counselor, an internationally published author and a motivational speaker with a message of encouragement, motivation, empowerment and hope for anyone touched by abuse, trauma or adversity.

    On February 6, 2007 I created *Second Chance to Live *http://secondchancetolive.wordpress.com/ to share the principles and strategies that have encouraged, motivated, empowered and given me hope to succeed beyond all reasonable expectations. You may read what several individuals have said about the influence that Second Chance to Live has had upon their lives on my *Testimonial / Endorsement Page* http://wp.me/P3atD-nD.

    In August of 1967, at the age of 10, I sustained an open skull fracture with right frontal lobe damage and a severe brain contusion, brain stem involvement and a fractured left femur. I remained in a coma for 3 weeks. Although I was not expected to live the night of the car accident in 1967, or succeed beyond high school academically I went onto obtain both my undergraduate and graduate degrees. *About Page* http://wp.me/P3atD-D.

    In August 1967 neurological rehabilitation was not available. Consequently, I was on my own. With the encouragement of family and hard work I taught myself again to walk, talk, read, write and speak in complete sentences.

    Second Chance to Live has been published through out the United States, in Canada, the United Kingdom, Europe and Australia. See my Publications page http://wp.me/P3atD-oK. Recently the *Brain Injury Association of Canada* featured Second Chance to Live on their web site http://wp.me/p3atD-Bq and in the September 2009 edition of the Official Journal for the Brain Injury Associations of Australia — Synapse http://wp.me/p3atD-El

    I have been interviewed by several individuals as well as by *ABC Radio KGO AM 810*: my *Interview Page* http://wp.me/P3atD-5f. I am available to be of service to you, your mission and vision. Please see my *Speaker Page* http://wp.me/P3atD-3A and my* Media Page* http://wp.me/P3atD-d0.

    To date I have written 489 articles which are located in *Site Map* http://wp.me/P3atD-1H.

    Please consider adding Second Chance to Live to your helpful resources. Thank you.

    I look forward to being of service to you, your organization and the individuals that you serve.

    Craig J. Phillips MRC, BA
    Second Chance to Live

    *Our circumstances are not meant to keep us down, but they are meant to build us up! *

  5. Barbara Stahura says:

    As the wife of a survivor, I highly recommend all the suggestions that John and Marjorie make here. I had some advantages for helping my husband that others might not have (for instance, his kids are grown so I didn’t have little ones at home to care for as well), but I was also the only family member here and so became his sole caregiver and advocate. It was terribly stressful for me, but I could see how it helped him just to have me there in the hospital and rehab center as much as I was. I was also happy simply to be with him and got to watch his progress in intimate detail. He later said that my presence became one of the most important elements in his desire to get well (plus the fact that he’s really stubborn and wouldn’t give up!) I did get depressed for a time and a counselor told me I was probably suffering from secondary traumatic stress, but over time my husband and I both got better. Caregivers have to remember to take good care of themselves, too. And remember, as John and Marjorie say, while the docs know a lot, they don’t know everything. Brain research is showing that much more recovery may now be possible than was believed before. Don’t give up! Even if recovery comes in millimeter-sized pieces, it’s still recovery, and all those little pieces add up.

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