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Jeffrey S. Kreutzer, Ph.D.
Virginia Commonwealth University
Medical Center
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Living with The CharacterologicallyAltered Patient
Common family problems -
when the patients characterological change isextensive, all close members of the family are
likely to suffer emotionally.
the immediate familys sense of isolation maybe exacerbated by feelings ofabandonmentby the extended family.
Lezak, 1978
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Living with The CharacterologicallyAltered Patient
Common family problems -
outside relatives who do not assumeresponsibility for the patients care are inclined
to be critical of the caretaker
Lezak, 1978
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The Spouses Special Problems
the spouse lives in social limbo, for hedoes not have a partner
the spouse cannot mourn decentlyalthough he has lost his mate as surely
and permanently as if by death
the spouse cannot divorce with dignity orin good conscience
Lezak, 1978
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from the VA statewide community based needs assessment
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from the VA statewide community based needs assessment
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The curious thing about the auto
accident that ended my life wasthat I lived through it. On January
31, 1996, Death sneaked through
a red light disguised as a minivangoing 50 miles an hour.
Kara L. Swanson
Catching the Bus
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Course, nobody told me that when
they finished pulling me out of my car,they were putting me right on the bus.
Thats what I call the process of
recovering from traumatic brain injury:getting on the bus.
Kara L. Swanson
Catching the Bus
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Its a good thing they strapped me
down and fastened my head to a
board. Had I understood even alittle of the journey that had just
begun, I would have hit theground running.
Kara L. Swanson
Catching the Bus
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and others didnt understand.How could they. They couldnt
see the hundred and one things I
was doing behind the scenes topresent myself as normal. I
looked the same (except for the
extra poundage).
Kara L. Swanson
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Postinjury Relationship Changes
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Loneliness and Other CommonFeelings after Brain Injury
lonely neglected abandoned ignored isolated rejected
disrespected disliked unworthy different unsupported misunderstood
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Understanding is Important
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Understanding is Important
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Have you found yourself saying
What happened to all the friends whocame to visit me in the hospital?
People seem to avoid me. My wife threatens to leave
me at least twice a week.
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Have you found yourself saying
Nobody has any idea what Imgoing through.
I cant relate to other people. Itseasier to be by myself.
Seems like nobodywants to talk to me.
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How Are YouTreating Other People?
Are you thinking a lot about how otherstreat you?
Have you noticed that friends, familymembers, and co-workers are treatingyou differently?
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Relationships Are
A Two-Way Street
Just as important is thinking aboutHow you treat other people
The way you act toward other peopleaffects the way they treat you.
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I got angry at nothing. One night
something irked me and I tore down
the wallpaper in my living room. I
interrupted people. They could tell
me they just found the cure for
cancer and I would cut them off and
talk about how pretty the car next to
us was.
Kara L. Swanson
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IntroductionIn 1996, Cathy Crimmins, her husband Alan,
and their daughter Kelly were on an idyllic
lakeside holiday when a boating accident left Alanin a deep coma, with severe damage to the frontal
lobes of his brain, the area that controls speech,
memory, movement, and personality. Where is theMango Princess? Is the story of what happened to
Cathy and her family after Alan woke up.
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I am beginning to understand the phrase
lack of companionship, I say to my
mother and mother-in-law as we sit eating
dinner in a nice outdoor caf on Kingstonsmain thoroughfare. Hes not here, I say
tearfully. He might never be here again.
They dont know how to answer.
from Where is the Mango Princess?
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The Ghost of Alan past. He hauntsme even more than Phineas Gage
does. The worst thing you can do is
to remind the brain-injured person ofwhat he was like before, of what he
could do back then he cant do now.
But how can you help remembering?
from Where is the Mango Princess?
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How can I explain the personality
oddities of brain injury who think Alan
is the same as he was before? I ask
for Bills advice. Just tell them to
imagine the things they hate about
their spouses most and then multiply
that trait a hundred times, he
advises. How true.
from Where is the Mango Princess?
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Anything annoying that Al did beforethe accident, he now does more, and
more intensely. He always had
trouble with his temper and with lossof patience. Whereas before he
might have blown up once or twice a
week, now temper tantrums are adaily occurrence.
from Where is the Mango Princess?
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The Are You Pushing Other
People Away Questionnaire
focusing on whats wrong in yourlife and the world not listening when others speak,
interrupting or talking too much.
arguing or disagreeing not thinking about other peoples
needs or feelings
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The Are You Pushing Other
People Away Questionnaire
talking only about yourself asking people very personal questions talking mostly about your brain injury and
how your life has changed for the worse
repeatedly rejecting others advice,suggestions, or offers of help
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The Are You Pushing Other
People Away Questionnaire
touching people without asking if itsokay or standing too near them
talking without thinking or saying thingsthat hurt other peoples feelings
not using good hygiene
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One of the most important steps inrecovering from any traumatic
event is realizing that you need
help that you cant always make
it by yourself and finding the
strength to seek it out.
Kara L. Swanson
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My family and friends didntknow anything about head
injury. We didnt know howto interpret what we were
seeing.Kara L. Swanson
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Why Many Survivors Feel Lonely Even
When Around Family and Friends
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It wasnt what people said,mind you. It was what
people didnt say that
scared me. I would
sometimes catch them
trading those looks.Kara L. Swanson
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Why Many Survivors Feel Lonely Even
When Around Family and Friends
People generally make friends throughwork or being involved in social or
recreational activities.
After injury many survivors stop workingand may not be involved in sports, church
or other activities.People lose contact with co-workers and
friends.
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Why Many Survivors Feel Lonely Even
When Around Family and Friends
Fatigue and loss of energyare common after injury.
Many say they dont havethe energy to enjoy spending
time with friends and family.
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Building LastingRelationships
Ask trusted friends for their ideas abouthow you can be helpful.
Helping, caring for, and reaching out toother people is a good way to show others
that you are the kind of person that theywant to be around.
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Building LastingRelationships
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Can I make and keep relationships
if I dont have much money?
Weve made a list ofideas about how you can
be nice to other people.
Try out the ideas. Be creative, add and try
out some of your own ideas.
What you should
be thinking.
Being kind doesntnecessarily meanspending lots of money
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Be Kind to Others Dont be shy about complimenting others.
Think about what you like about other
people and tell them.
Pick flowers or vegetables from yourgarden and give them to others. Share a comic strip, story, joke,
magazine article or book.
Hold the door or elevator for someone. If someone drops something,
pick it up for them.
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Be Kind to Others Tell someone who helps you how
much you appreciate them.
Offer to baby sit for someone,take care of a pet, or help withtheir chores.
Buy or share with someone asnack, coffee, tea, or soda.
Bake someone cookies,brownies, or a cake.
Make a meal for someone.
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Be Kind to Others Offer to help someone organize or clean
their house, basement, or garage.
Offer to pick up your neighbors mail andnewspaper when they go away, andwater their plants.
Volunteer your time to your church, locallibrary, Red Cross, or other community
organization. Smile and say, Hello to people.
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Building LastingRelationships
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Building LastingRelationships
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Building LastingRelationships
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Building Lasting
Relationships
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Building Lasting
Relationships
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Building LastingRelationships
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Building LastingRelationships
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Building LastingRelationships
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Building LastingRelationships
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The research that enabled me to identify
the phenomenon of ambiguous loss was
conducted with the families of pilotsdeclared missing in action in Vietnam and
Cambodia. It was 1974, and I was
collaborating with staff at the Center of
Prisoner of War Studies in the U.S. Naval
Health Research Institute in San Diego. Weinterviewed the wives of missing pilots in
their homes, and it was from them I first
learned about the power of ambiguity in
complicating loss. I tried to determine how
to ease their stress in spite of the ambiguity
they had to live with in many cases for alifetime.
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Ambiguous LossPauline BossA situation where a loved one is perceived
as physically present while psychologically
absent, or physically absent but kept
psychologically present because their status
as dead or alive, dying, or in remission
remains unclear.Our premise is that the most stressful
losses are those that are ambiguous.
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Ambiguous LossPauline Boss
Research has supported the idea that
ambiguity creates a powerful block tocoping and grieving, predicting symptoms
such as depression, anxiety, loss of
mastery, hopelessness, and conflictwhich erode couple and family
relationships.
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Ambiguous LossPauline Boss
When illness cannot be cured, people
must simultaneously hold twoopposing ideas in their minds: The
person as she or he was is gone, but
that person is still in my life.
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Ambiguous LossPauline Boss
In the second type of ambiguous loss, a
person is perceived as present butpsychologically absent. This condition is
illustrated in the extreme by people with
Alzheimers disease can also occur when
a person experiences serious head trauma,first becoming comatose and then waking up
a different person.
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Ambiguous LossPauline Boss
Lack of clarity about prognosis, daily physicalcondition, and fluctuating capabilities createrelationship confusion, preoccupation with the
illness or avoidance of the individual.
Immobilization, depression, and relationshipcollapse may occur in response to features ofchronic illness over which there is no control.
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Ambiguous LossPauline Boss
Ambiguous loss can cause personal and
family problems, not because of flaws in thepsyches of those experiencing loss, but
because of situations beyond their control or
outside constraints that block the coping and
grieving process.
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Learning to Like and LiveWith a Stranger
Not everything has changed. Recognizethe good qualities that are still there.
Post-injury change is a process.Recognize the injured persons ability to
change for the better. Point out what
you see and like. Encourage the personto speak in ways that are appreciated.
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Learning to Like and LiveWith a Stranger
Communicate and get to knowthis different person better. Ask
about their feelings, what they like
and dislike, and how you can
help. Try to share your feelings,
good and bad, with them.
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Learning to Like and LiveWith a Stranger
The injured persons acting different is partlyrelated to being treated differently by other
family members, friends, and co-workers.
Understand that you are probably acting and
treating the injured person differently too.
Perhaps you are treating your husband more
like a child. Maybe you are treating your
injured child like he is several years younger.
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Learning to Like and LiveWith a Stranger
Perhaps you arent noticing the good thingsthey do. Try to avoid a natural tendency to
focus on the things you dont like. A focus on
the positive will improve the injured persons
motivation to change for the better, their self-
esteem, and the quality of your relationship.
Appreciate your ability to have a positive
influence.
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Learning to Like and Live
With a Stranger
Recognize the possibility of changing for thebetter as many survivors do. Many develop
wisdom from their experience. Many developan appreciation for the little things in life,
that many people take for granted.
Try to do some of the things you used toenjoy together. Taking a walk, seeing amovie, or visiting mutual friends can bring
back good memories and good feelings.
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The Change Recognition
Questionnaire
1. What changes have you noticed in the waythe injured person treats you?
2. What changes in the injured person aremost upsetting?
3. What can you do to encourage the injuredperson to change for the better?
4. What familiar qualities do you still see inthe injured person?
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The Change Recognition
Questionnaire
5. Are there new qualities that you canappreciate?
6. How are you treating the injuredperson differently?
7. How are other family memberstreating the injured person differently?
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The Change Recognition
Questionnaire
8. How are friends, neighbors, andcolleagues treating the injured persondifferently?
9. What things that you used to dotogether can you still enjoy?
10. What new activities can you enjoytogether?
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Learning to Like and LiveWith a Stranger
Most of all, try to be patient. The injuryrelated changes that occurred were sudden,
but getting better is a long-term process.
Over time your family member will seem
more familiar, understandable, and
predictable.
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Department of Physical Medicine and Rehabilitation
VCU Box 980542, Richmond, VA 23298-0542
Ph. 804 828-9055
Virginia Commonwealth UniversityMedical Center
Jeffrey S. Kreutzer, Ph.D., ABPP
www.nrc.pmr.vcu.edu
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