moderated by doris mcmillon caregiving and tbi: what you need to know

Moderated by

Doris McMillon

Caregiving and TBI: What You Need to Know

Featuring

Carolyn Rocchio a nationally recognized advocate, author, and speaker in the field of brain injury. Her expertise in

brain injury developed as a result of a 1982 auto crash in which her son sustained a severe traumatic brain injury.

Sarah Wade wife of retired Army Sergeant Edward “Ted” Wade, who was one of the first major explosive blast

polytrauma cases from Operation Iraqi Freedom.

Nathan Zasler, MD an internationally respected rehabilitation physician in brain injury care. He is CEO and Medical

Director of the Concussion Care Centre of Virginia, as well as Tree of Life, a living assistance and transitional neurorehabilitation program for persons with brain injury.


Carolyn Rocchio on why caregiving can be rewarding

• Caregivers meet many courageous people.

• Caregiving gave Carolyn a whole new outlook on living every day as it comes.

• Caregiving for someone with TBI is very different than caring for an elderly adult parent.


Tim Rocchio’s car crash

• Three blocks from home

• Thrown from the car

• In a coma for three months

• Sustained multiple injuries, including five major skull fractures

• Lost vision in one eye


Tim’s progress

• Five months = first sound

• Six months = stand with support

• Eight months = walking

• Recovery and rehabilitation = long, gradual process


Basic demographics of TBI

• Currently, there are 5.3 million Americans living with TBI.

• The number of returning veterans from Iraq and Afghanistan with TBI is increasing daily.

• People with TBI who have a devoted caregiver like a wife or mother generally do better.

• People who don’t have a strong support network often end up in adult living or psychiatric facilities.


In families, who is the designated caregiver?

• Decision requires care

• Can be a fulltime commitment

• Frequently mothers or wives


Common responsibilities when caring for someone with TBI

• Physical assistance with bathing, toileting, and other activities of daily living

• For those with cognitive difficulties — keeping the person safe and appropriate


Learning to be a caregiver

• On-the-job training

• Common sense

• Learn from the experts while in medical and rehab settings.

• Ask lots of questions.

• Knowledge is power.


Important steps immediately after the injury

• Review insurance policy.

• Begin planning for return home.

• Establish strong and consistent structure.


Keeping siblings from falling through the cracks

• Other children need attention.

• Siblings may need support dealing with changes from the injuries.


Education is key

• Learn as much as possible about loved one’s injury and care.

• Ask lots of questions.

• Look for credible information on the Internet.

• Contact local and national TBI agencies like the Brain Injury Association of America: www.biausa.org.

http://www.biausa.org/


Other issues caregivers need to learn about

• Financial issues

• Legal issues

• Psychological issues

• Almost every aspect of life is affected.


How to handle loved one’s aggressive or inappropriate social behavior

• Define loved one’s preserved abilities and areas of deficit.

• Create workable strategies and keep them consistent.

• Create a strong and consistent structure at home.

• Rehearse and role play possible social situations.

• Educate community about loved one.


Correlation between quality of care and long-term outcome

• Depends greatly on the person with TBI and the effects from his or her brain injury

• Depends on caregiver

• Overall, the more support a person gets from family caregivers and others, the better that person will probably do in the short- and long-term.


Pressure of caregiving

• Fulltime caregiving is stressful.

• Difficult to find additional time to advocate for that person and his or her rights.


Short video on caregiving and the power a mentor can have

This clip from “Understanding Traumatic Brain Injury” was produced by the Defense and Veterans Brain Injury Center.

www.dvbic.org


Mentors can play a useful role in helping caregivers.

• In acute care, right after injury, peer mentors can help decrease anxiety and share information with families and caregivers.

• Training is important for peer mentors and caregivers.

• Professional mentors, like nurse educators, can help provide information specific to the injury.


Relationship between doctors and caregivers

• It’s important to realize that doctors do not always know all the answers.

• Doctors should make themselves available to answer families’ questions.


Holistic approach to TBI

• Important to look at the whole person

• Understand that a brain injury affects many aspects of the person – physically, cognitively, emotionally, and socially

• Help person reintegrate into the community and family

• Important to work with the whole family, not just the person with TBI


What are the biggest challenges that doctors and caregivers face when working together?

• Multiple physicians and healthcare professionals involved with one person can lead to conflicting information, potential risk for complications and confusion and anxiety for family members.

• The more teamwork and clear communication, the better.


Getting answers to families’ questions

• Be persistent

• Ask to speak with supervisory staff, if necessary


The importance of hope

• It’s important to inject hope in the context of comments about prognosis and progress.

• Hope and motivation are important for continued ongoing progress.

• Optimism should be tempered with realism.


Dealing with depression

• Depression is a common response in a family after a TBI.

• There are different types of depression, and it can hit the person with the TBI or any of the family members.

• Depression can be addressed with medications but also non-medication interventions like psychotherapy.


When should caregivers search for a new doctor or team for their loved one?

• There is nothing wrong with getting a second or third opinion.

• It is a physician’s responsibility to educate his or her patients and their families and to help them further educate themselves about services and treatments available for people with TBI.


What can caregivers do to sort through a medical maze of treatments and care?

• There are often not enough hours in the day.

• Caregivers need to accept that they are not super-human and can only do so much.

• The more medical teams collaborate and communicate, the more effective the caregiver can be with their loved one.

• Set priorities; make short lists and long lists.


How can caregivers most effectively collaborate with their loved one’s doctors?

• Caregivers need to be good and honest informants.

• Some issues can be embarrassing or troubling, but the more the doctors know, the more they can help.


Short video on caregiving and strategies for family and community reintegration

This clip from “Living with a Traumatic Brain Injury” was produced by the University of Washington Television.

www.uwtv.org


A mentor has been an enormous help to Sarah and Ted Wade.

• A mentor from an amputee group at Walter Reed made all the difference.

• A Vietnam Vet himself, this mentor showed them that there was light at the end of the tunnel.

• Ups and downs are normal.


Ted’s story

• Ted was taken to Landstuhl, Germany, after his Humvee exploded.

• He was not expected to live.

• One of Ted’s friends in Iraq was pulled off a patrol in preparation to travel to Germany to escort his body home.

• Sarah and her father-in-law were given the option to withdraw care.


Ted’s story (continued)

• Ted took a turn for the better though he remained in a coma for two and a half months.

• He was in the hospital for ten consecutive months.

• During the first year, he learned how to talk and walk again and to get dressed.

• Soon he was learning more skills.

• Ted described his rehab as “being born all over again, except it was an accelerated childhood.”


Biggest challenges for caregivers when loved one first returns home

• Not having the support of hospital staff and others accessible all the time

• Carrying the onus of being the primary caregiver


A life coach has been helpful to Ted and Sarah.

• Ted has a life coach — a case manager — who helps him troubleshoot everyday problems.

• Takes some of the pressure off Sarah

• Helped Ted and Sarah be husband and wife again, not just patient and caregiver


Ted’s new part-time job

• This fall Ted will start working at a neighborhood market.

• The job is part of his rehabilitation and community reintegration.

• The job will help him improve his memory and communication skills.


Why is reintegrating into the community and work force important for people with TBI and their caregivers?

• Important for person with TBI to be out in the community where one can relearn socially appropriate behaviors

• Important for caregiver because it’s isolating to be homebound the majority of the time


Returning to the community and workforce after TBI can be different in military and civilian populations

• For some veterans, “re-integration” is a misnomer.

• They may have spent their whole adult working life in the military, which is far different from working in the civilian population.

• The cultures are very different.


Steps caregivers can take to help their loved one return to work

• Largely dependent on individual’s unique situation

• Find people and resources that can help with vocational rehabilitation

• Identify resources for assistive technologies or devices if necessary

• Find employers who are open to making accommodations for a person with TBI


Finding ways back into social circles

• Have a friend, mentor, or other person spend time with the person with TBI.

• For spouses, try to take a break from the caregiver relationship and return to one of partnership.

• Find things to do together that are fun, like adaptive sports programs.


Shift in roles and relationships

• A significant shift in a relationship can cause the caregiver to feel resentful.

• Caregivers often have to give up a lot like school, a job, friends.

• Caregiving comes with its own rich rewards.


Advice for coping with changes in relationships

• Take time to care for self. This can take a lot of creativity and flexibility.

• Eat right.

• Get regular exercise … even if that means walking laps around the hospital.


Ways to avoid caregiver burnout

• It’s okay to admit feeling burned out or overwhelmed.

• No one is super-human.


Finding balance

• Finding balance as a caretaker takes time.

• Take one day at a time.

• Each caregiver has to find what works for him or her.


What to look for in post-acute care programs

• Visit programs; talk to staff; do your research.

• Choose a program with an interdisciplinary treatment approach that includes:

– behavioral psychologist – functionally oriented neuropsychologist– physician


Questions from the audience

What are the strategies for dealing with alcohol or drug abuse in a family where someone has a brain injury?


Questions from the audience (continued)

How can caregivers support themselves and their loved ones financially when they can no longer work?



How do caregivers know when their loved one is ready to move back out into the real world and figure out how to balance dependence and independence?



Do you have suggestions for explaining brain injury to a child whose parent has been injured?



How do caregivers know whether or not they’re doing the right things? Is there any research out there to help them make decisions?



What resources are out there for advocating for personal and legal rights for someone with TBI?


Final thoughts

• Take it one day at a time. Enjoy the moment and try not to be too critical when things go wrong.

• Don’t forget the power of humor.

• Maintain motivation and hope and faith.

• Keep educating yourself; it’s empowering.

• Realize there are steps you can take to make things better. Step up to the plate and work with your Congressman.


Learn more

To learn more about traumatic brain injury, signs and symptoms, treatment options, and ways to prevent it, please visit

BrainLine is funded by the Defense and Veterans Brain Injury Center, the primary operational TBI component of the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, through a subcontract award with the Henry M. Jackson Foundation for the Advancement of Military Medicine.


This material is based upon work supported by the USAMRAA under Contract Number W81XWH-07-C-0089.

Any opinions, findings and conclusions or recommendations expressed in this material are those of the author(s) and do not necessarily reflect the views of the USAMRAA.

Acknowledgment of Support and Disclaimer

© Greater Washington Educational Telecommunications Association, Inc., 2008

moderated by doris mcmillon caregiving and tbi: what you need to know

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