Chapter 1
Where We are Going
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YOU ENTER THE FOREST AT THE DARKEST POINT
WHERE THERE IS NO PATH
STORIES FROM THE PATH
She was an attractive young woman from Salinas just out of college and exploring career possibilities when she became seriously ill. The diagnosis found an aneurysm at the base of her skull next to her spinal cord. She was asked to make a momentous decision: If the aneurysm was not repaired it would undoubtedly rupture, killing her, but the operation to repair the aneurysm would undoubtedly leave her a quadriplegic. She chose life over death and had the operation.
The operation
left her mental faculties unimpaired and her spirit resolutely vital and
optimistic. She was helped in her recovery by The Central Coast Center for
Independent Living, one of several that comprise a unique
California
resource. Subsequently, she became a counselor with special skills for
helping clients with their problems. Sitting inside a frame with papers
propped in front of her, telephone headset at the ready, she guided us
through
the intricate steps to successfully apply for Social Security Disability
Insurance.
|
In crisis is cleverness born. |
Designing the Road Map
Where you are coming from is where you are going; Where you are going you
have never been before. You are certainly entering new and, at least initially,
unknown territory when you or a loved one experiences a head injury. Dealing
successfully with all the elements you will encounter is the challenge, of
course. When it happens, you become totally vulnerable, disoriented and
dependent. The objective is to to gain control over your circumstances.
This workbook will help you do that. But where you are coming from determines how you will respond to the challenge and to the unknown that you must learn to deal with. The road may be longer than you anticipated and the challenges more difficult but an open mind, willing spirit and loving heart will take you to the emerald city.
Survival-stabilization-rehabilitation-recovery
Head injury recovery involves two major efforts. The first, usually
short-term effort is medical, but long-term recovery efforts are educational in
nature. The initial medical survival may take a month or two but recovery may
take 10-15 years.
Medical intervention is initially directed to survival and stabilization of the patient. The patient may be fully or partially comatose in the hospital’s intensive care unit for an extended period. After they are aware and their condition stabilized they will be unhooked from monitors and released to the neuro-step-down unit. At this stage rehabilitation with physical therapy can begin.
Rehabilitation that began in the medical hospital may be continued in a rehabilitation hospital and, eventually, on an outpatient basis and with an at-home program. This is when transition into long-range recovery activities can take place. The objective of recovery efforts is independent living. The objective of a program based at an educational institution is "mainstreaming," that is, the ability to participate in activities with a minimum of supportive services.
College can become an ideal focal point for the adult recovering from head injury. It provides a structured environment with counseling and other supportive services in a community of caring individuals who have common interests. Especially in a community college setting, the student can live near the campus with access to public transportation and a user-friendly neighborhood. Since most head injury victims are left on their own, families can feel good about such an arrangement. It makes independent living workable. Although head injury is devastating in many ways, there are many recovery initiatives for survivors. But the family, especially the caregiver, suffer more than the head injury victim. It is important for both to know that even in extreme cases independent living is an achievable goal. As the actor, Christopher Reeve and his family have shown, there is no justification for negative thoughts about "plateauing-out," even if the opinion is presented with the authority of a neurologist.
It is true that rehabilitation and recovery efforts are better funded in some cases compared with others. Traumatic Brain Injury (TBI) rehabilitation benefits from automobile insurance and the settlement of legal claims. These payments fund a growing industry of third party pay programs and activities. But private rehabilitation resources are not available to most victims of Acquired Brain Injury (ABI) due to limitations of health insurance coverage. However, there are resources, sometimes just as good and sometimes better, that are available to everyone without regard to cost. And the best news is that a large part of recovery from head injury is spontaneous. What that means is that a positive attitude by caregivers and a maximum of encouragement to the patient (a minimum of the negativity to support a self-fulfilling prophecy of doom) will lead to achieving the goal of mainstreaming and independent living even in extreme cases. There are substantial resources for rehabilitation and recovery available to everyone. Finding and learning to access them is what self help is all about.
Working Definitions for Rehabilitation and Recovery
In the sequence of events following head injury, rehabilitation first
precedes and then transitions into recovery. It seems best to think of these
stages separately because they are focused differently. Rehabilitation
begins in the hospital and is based on the medical model. Especially in
the hospital, rehabilitation is integrated into the medical program and usually
directed by a neurologist. Recovery, as we use the term, follows the
rehabilitation stage and is based on the educational model. It may include
specific physical, occupational and speech therapy initially but, ultimately,
should be school-based where supportive services for students with disabilities
exist, following Americans with Disabilities Act guidelines. The goals of
recovery efforts should be mainstreaming and independent living.
The individual who accepts responsibility for assisting the head injury victim in their recovery is known by several titles that reflect the activities they must perform. The parent or spouse is also the legal guardian but this position of authority may require Durable Power of Attorney. The parent, spouse or appointed individual who will be responsible for the victim’s care is the Caregiver. To the degree that they are involved arranging, contracting and monitoring services, they are also the patient’s advocate. Especially in the recovery stage but beginning earlier, the best relationship between caregiver-advocate and the patient is that of a partnership and, because recovery is largely spontaneous, the helping partner should act as a facilitator for recovery. Partner or Caregiver, It takes a team of two, if not a village, to facilitate recovery.
Re-writing the script to meet the challenge
It is important for the caregiver to understand that the patient’s recovery
may take 10-15 years and that it will not proceed in a regular way. It will
undoubtedly proceed in baby steps, two or three steps forward and one or two
back, especially in the early years of recovery. There will be exciting
breakthroughs along the way and times when subtle changes occur that were
initially overlooked. This is where the flexibility of developing an individual
program of self help activities based on close observation of the patient is
important. Online self-help support groups and message boards can be
helpful in developing such a program.
Functional view of the problem
To see emergency and ICU medical staff in operation is to understand love in
functional terms. Friends and family may be disoriented by the spectacle of the
patient, especially surrounded by tubes and monitors. Little by little, the
caregiver must learn from the staff as well as from information in websites and
publications to become directly involved, to be a partner with the patient and a member of
the team. Friends and family may visit the patient in the hospital, twice if
you’re lucky, but in most cases, they will begin distancing themselves (some
immediately, explaining that hospitals and sick people make them feel
uncomfortable)
and will not be helpful to you in your struggles to find ways to deal with the problem of
providing care that threatens to overwhelm you emotionally, intellectually and
financially, nor will they participate in the patient’s rehabilitation and
recovery no matter how much they may love you and the patient. The best you can
expect from friends and family is detached interest and compassionate
indifference (perhaps all that you would provide them were the situation
reversed). This is why a functional view of the problem is so important. It will
help you put aside resentment and keep you thinking straight, like a
professional, and looking for meaningful resources and activities that will help
you and your partner in the recovery project.
Your role as patient advocate
The patient's advocate, in effect, works for the patient to look after their
interests with the healthcare team. As the caregiver, you assumed this
role immediately without question in the moment of crisis. If you feel
that the demands are too great and you feel uncomfortable as the designated
advocate, you can contract an independent social worker case manager to help
with these responsibilities. Information and advice about the role of the
patient advocate, including a fact sheet, is available from the National Patient
Safety Foundation,
www.npsf.org.
Things to do Checklist
Execute (or draft) a durable power of attorney document
Find (or draft) the patient's Living Will
Call the patient's employer or human resources representative
Call the patient's lawyer or medical law specialist
Useful Publications
To browse additional selections click on
Books.
Inlander, Charles B. and Weiner, Ed. Take This Book to the Hospital
With You: A Consumer Guide to Surviving Your Hospital Stay. Allentown
PA: People's Medical Society, 1997.
People's Medical Society. Your Complete Medical Record.
Allentown PA: People's Medical Society, 1993.
Useful Websites
Brain Injury Association
www.biausa.org
Brain Injury Association of Maryland
www.biamd.org
CareGuide
http://www.coordinatedcare.com/Careguide/index.jsp
Centers for Disease Control and Prevention
www.cdc.gov/ncipc/tbi
Mayo Clinic
www.mayo.edu
People's Medical Society
http://www.peoplesmed.org/
Self-Help Clearinghouse
http://www.selfhelpgroups.org/
University of Iowa Virtual Hospital
http://www.vh.org/adult/patient/neurosurgery/braininjury/index.html
Acquired brain injury information
http://www.headwest.asn.au/infokit.htm
Go to:
Chapter 2