Transcript Caregiving and TBI

Caregiving and TBI:
What You Need to Know
Moderated by
Doris McMillon
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
Tim’s progress
• Five months = first sound
• Six months = stand with support
• Eight months = walking
• Recovery and rehabilitation = long, gradual process
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
In families, who is the designated caregiver?
• Decision requires care
• Can be a fulltime commitment
• Frequently mothers or wives
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
Important steps immediately after the injury
• Review insurance policy.
• Begin planning for return home.
• Establish strong and consistent structure.
Caregiving and TBI: What You Need to Know
Keeping siblings from falling through the cracks
• Other children need attention.
• Siblings may need support dealing with changes from the
injuries.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
Other issues caregivers need to learn about
• Financial issues
• Legal issues
• Psychological issues
• Almost every aspect of life is affected.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
Pressure of caregiving
• Fulltime caregiving is stressful.
• Difficult to find additional time to advocate for that person
and his or her rights.
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
Getting answers to families’ questions
• Be persistent
• Ask to speak with supervisory staff, if necessary
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.”
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
Ways to avoid caregiver burnout
• It’s okay to admit feeling burned out or overwhelmed.
• No one is super-human.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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
Caregiving and TBI: What You Need to Know
Questions from the audience
What are the strategies for dealing with alcohol or drug
abuse in a family where someone has a brain injury?
Caregiving and TBI: What You Need to Know
Questions from the audience (continued)
How can caregivers support themselves and their loved
ones financially when they can no longer work?
Caregiving and TBI: What You Need to Know
Questions from the audience (continued)
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?
Caregiving and TBI: What You Need to Know
Questions from the audience (continued)
Do you have suggestions for explaining brain injury to a child
whose parent has been injured?
Caregiving and TBI: What You Need to Know
Questions from the audience (continued)
How do caregivers know whether or not they’re doing the right
things? Is there any research out there to help them make
decisions?
Caregiving and TBI: What You Need to Know
Questions from the audience (continued)
What resources are out there for advocating for personal and
legal rights for someone with TBI?
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
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.
Caregiving and TBI: What You Need to Know
Acknowledgment of Support and Disclaimer
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.
© Greater Washington Educational Telecommunications Association, Inc., 2008