Chapter 7
The Rehabilitation Hospital
AWE IS WHAT MOVES US FORWARD
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Preparations for Discharge
There are two major crises or "moments of
truth" in the brain injury experience. The first is discussed in Chapter 1
as "the crisis" when the victim has their near death experience and the person
who is going to be there for them takes on that responsibility. We tend to
assume that it will be a family member but it could be the department of social
services or even an individual appointed by the hospital. In any case,
this person is the patient's advocate and, for better or worse, a member of the
healthcare team. The second crisis comes about when the patient is
discharged from the hospital. For the caregiver/partner it's a little like
taking the baby home.
We also must assume that recovering head injury patients cannot take care of themselves adequately. But this does not mean that family or friends will volunteer to help or that the hospital will not release the patient who does not have a caregiver/partner. The patient may need to be their own caregiver for several reasons. They may be alone in the world without any close attachments, especially the case with older individuals living alone. Dysfunction being the rule among families, there may be no family member willing to get involved. Most important, denial makes the patient dismiss their symptoms as temporary and others to see them as eccentricities and as willful behavior. The fact that rehabilitation and recovery will, in fact, take years and that it involves radical changes in lifestyle and living arrangements will probably be found unacceptable. If there is a caregiver/partner with the patient from the beginning who has prepared by learning about head injury symptoms and recovery, then everyone will know what to expect and the transition to home care should be smooth. Without this intervention the patient will be forced to come to terms with the nature and extent of their condition while attempting to meet their own and others' expectations for recovery.
It is important for everyone including the patient and those who could assist the patient (even in some small way) to understand the vulnerability of the patient and their inability to deal with their condition. The patient may have a job but they can't do it, they may want to read but they cannot focus, follow or absorb abstract material. There may be useful information on the internet but they can't figure out the computer. It is almost impossible for them to understand or retain directions given verbally. Perhaps most pathetic, if they have a car and a driver's license, the recovering patient may want to drive even though they get lost, forget where they park and have difficulty staying in a lane.
The independent patient will probably benefit most from a case manager who can help make other arrangements that the patient needs for recovery. At the least there needs to be someone to open mail, pay bills, apply for SSDI and get the patient into rehabilitation and recovery programs and activities.
Caregiver
Responsibilities in the Transition
The second crisis comes about when the
patient is discharged from the hospital. At
this point the hospital team and resources will no longer be available except,
possibly, on an outpatient basis. The full force of responsibility falls
on the caregiver and the patient. At this point, however effective, the
patient and caregiver become partners in rehabilitation and recovery. Their
support team consists of those individuals with specialties whose services are
contracted for separately.
The reason that establishing an initial team early while the patient is still in the hospital is that the transition is so quick. The hospital phase may have lasted months and then, suddenly, it's over and you are shuffling off to a parking garage for the ride home to a house that was not built as a healthcare facility. You cannot be too well prepared, adaptable or ingenious for this part of the adventure. The hospital has a responsibility to assist in this transition but, for whatever reason, you cannot expect more than that which meets the letter of the law. Assistance for the transition is available from other sources, however, even if your health insurance coverage is inadequate.
As recommended above, while the patient is still in the intermediate care unit, visits should be made by case managers from Visiting Nurse Association, the local hospice program, the appropriate county social services program, a neuropsychologist, and the internist or general practitioner that you have selected (one who is Board Certified and knowledgeable about brain injury complications and Medicare affiliated). Check them out at http://www.medicare.gov ).
You can also contact the handicapped transportation system for your community and become certified for using the system. They may be able to provide the ride home from the hospital.
The Transition
from the Medical Model to the Educational Model
Having been discharged from the hospital, the patient's medical
problems become less prominent. The medical condition requires management
rather than intervention and is therefore more regularized. Education and
training now become paramount. Speech, occupational and physical therapy
by third party providers for a short period of 1-2 months can help in this
transition. The caregiver/partner should also participate in therapy
sessions in order to learn the techniques that will need to be continued during
the recovery period. After the 1-2 months of physical therapy, patient
caregiver/partner can move on to "adapted physical education," possibly at a
college, as is the case in the California Community College System.
The neuropsychologist will provide tests to assess the extent of brain damage and to monitor recovery. Discussions by the patient and caregiver/partner will help in the development of an effective partnership and lifestyle modifications. Additional tests using the EEG and magnetic imaging can identify damaged brain centers and suggest activities and training exercises that may be therapeutic.
Coming to Grips with Dementia
If the neurologist tells you that your patient/partner has "plateaued-out,"
they are referring to conditions that constitute dementia. The reference
to "plateau" indicates "static" dementia. There are three types of
dementia from the perspective of the medical model: Progressive, which is
irreversible and only gets worse; static, which is irreversible and doesn't get
better, and reversible, which accounts for about 1 percent of all cases and is
associated primarily with drug intoxication and depression.
While you and your patient/partner may be advised to give up on what seems to be an irreversible, static condition, this is not advisable even from a medical point of view; recovery is usually observed in patients over an extended period. Such recovery may be seen to be, in part, spontaneous and new neuroscience studies have reevaluated the capacity of the brain to heal itself. Advocates for new science such as Christopher Reeve claim that it is premature to ever give up. This is also the the claim of those working with the educational model.
The Functional approach to rehabilitation and recovery
The basis for the functional approach is the assumption that the patient
will continue to recover over a 10-15 year period following their brain injury.
The best results will be obtained when the patient is surrounded by facilitating
resources and participates in intellectually stimulating activities.
It is very important to establish a partnership relationship between the caregiver and patient. A dramatic example of a partnership can be seen in the relationship between Dustin Hoffman and Tom in the movie, Rain Man. For the most part, the patient is extremely vulnerable, open and trusting. This means that the caregiver/partner must behave judiciously at all times, dropping the usual expectations and playing always to the patient's strengths. The patient's underlying intelligence cannot easily be revealed in action because of their symptoms of dementia. The caregiver/partner must always be respectful of the patient as a human being whose strengths cannot be fully revealed because of his or her disabilities. It is not enough just to be aware of the patient's feelings. Recovery will be stimulated by finding the patient's functional strengths and new ways to stimulate them.
The partnership relationship can become more effective through the analysis presented in the Myers-Briggs Personality Type Indicator. A short version is presented in Please Understand Me: Character & Temperament Types, by David Keirsey and Marilyn Bates. The test can also be taken through a licensed psychological counselor. A patient who took the test before their brain injury and takes the test again will find little change in their type indicators indicating that, although affect and expressiveness have changed, their underlying personality is intact.
It is probably important to feed the patient's underlying personality. Emotions and affect can be changed. Although the medical model tends to hold that the patient's emotions relate to brain center damage, it also suggests that these centers can be modified by mental exercise. Mutual laughter and enjoyment can strengthen the bond between partners and contribute to the general modification and improvement of lifestyle that will take place over time. There is a developing literature on the therapeutic effects of laughter and there are wonderful sources of laughter including TV, movies, videos and books, not to mention everyday life.
Finally, the caregiver/partner relationship with the patient should approximate one of benevolent manipulation. The caregiver/partner is the guide and parent to the patient. As the facilitator, the caregiver/partner must learn to use behavioral psychology or operant conditioning to help the patient modify and maintain positive behavior. For example, while exercise is essential in recovery, brain injury is associated with low stamina and the patient may resist physical efforts. The caregiver/partner needs to present interesting activities with rewards, such as a daily walk to get the newspaper and a breakfast treat. Unconditional praise and display of regard, hugs and other displays of affection, basically doing unto the patient as you would have done to yourself. Because of their limitations the patient has a youthful directness and appreciation. You will find that this reinforcement works both ways and as the patient flourishes you will feel rewarded as well.
As they work towards developing a meaningful partnership, patients and caregivers become committed to behavior modification. The neuropsychologist can relate the patient's limitations to brain injury and behavioral psychology can help in modeling behavior.
Getting the patient engaged in rewarding areas is important to development of motivation and awareness. Channels of interest can be developed in socializing, reading, music, travel, art and other areas. Because sustained focusing is not possible, short, punchy items should be used: jokes, newspaper articles, Dave Barry columns.
Making exercise part of life is very important. Studies have shown that physical exercise improves the condition of frontal, parietal and temporal regions. One study published in February 2003 Journal of Gerontology showed that physically fit subjects had less age-related brain tissue shrinkage than less active subjects. Another study published in Psychological Sciences, March 2003, found that exercise programs of at least 30 minutes per session that combine aerobic and strength training are most effective. Opportunities for exercise can be found by developing make-work tasks. Park the car some distance from where you are headed so you have to walk further. Take adapted PE together or hire a physical trainer. Use the facilities available at a community center or join a health club. Take ballroom and folk dance classes. Walk everywhere.
Things to do Checklist
● Apply for Social Security Disability Insurance. In addition to the money that
this will provide is the health insurance coverage that will be provided under
Medicare. Applying for SSDI is fairly straightforward but obtaining it
requires a solid application. Before you begin you should get assistance
from a counselor at a center for independent living or a social services center
or a social worker familiar with the application process. Advice and
assistance is available from the Social Security Administration as well.
Following the procedures correctly should be sufficient; providing the
information that is needed in the form that it is needed is the key and you can
do this most effectively by working with an advisor. The only time you might
need a lawyer would be to present an appeal, but this should not be needed if
you apply in a timely and adequate way.
● If the patient is not old enough for medicare, it will be available as part of SSDI. Once you have it Medigap may also be available (depending on the state you live in).
● Buy a cordless phone with conference call, message center, caller ID and speed dial. A 900MHz digital phone is recommended (see Consumer Reports). A high quality speaker phone will make life easier and will be invaluable when you and the patient want to talk with friends and relatives. Independent handsets make it possible to have telephones connected in the same system and free you from corded phones.
● You will need the proper vehicle for your patient. A minivan which has rear seat backs that fold down to make a bed is probably the most convenient "transfer van." Because head injury patients want to sleep a lot of the time, having a bed, port-a-potty and other features make the minivan ideal for long as well as short trips. A built-in compass or, better yet, the electronic map system would be invaluable aids for helping the patient stay oriented. You should obtain a handicapped parking sticker before leaving the hospital. It will make parking less frustrating most of the time.
● Sign up for dance classes and whatever else is available at the local community center. Many centers provide help with income taxes and other financial matters as well as counseling on Federal, state and local social services. The community center is also a good destination for outings and a place to meet other people, many of them recovering as well.
● Get a complete physical for the patient in order to establish benchmarks for general health. The physical should include blood tests for iron deficiency and other potential problems such as type II diabetes. Certain hospital procedures such as use of urinary tract catheter will have long-term effects. Identifying and dealing with them should be part of the doctor's review. If the patient is a woman she should have a gynecological exam including mammogram. The patient should also visit the dentist for teeth cleaning and repair.
● Get video comedies from the library. Jane's favorite comedies and comics are listed below. Reading materials that include short pieces are also enjoyable. Columns like Dave Barry and News of the Weird are excellent because they are short and punchy. Novels and stories with plots are definitely out due to difficulties focusing and attention span, but book discussions and short book reviews can be useful and interesting.
● Get a blender with pulse setting to make
smoothies using fruit, yoghurt, ice cream and fruit juice. Smoothies are
easy to make and provide an easy way to take nutritional supplements--just add
them to the mix.
Constructing Your Team
VNA
Hospice
Psychologist
Internist
Dentist
Physical therapist/trainer
Speech therapist
Occupational therapist
Case manager
Hair dresser/barber
Useful Publications
To browse additional selections click on
Books.
Biomarkers: The 10 Keys to Prolonging Vitality -- by William Ivans, PhD and
Irwin H. Rosinberg, MD
I'll Carry the Fork: Recovering a Life After Brain Injury -- by Kara L.
Swanson
My Year Off: Recovering Life After a Stroke -- by Robert McCrum
Please Understand Me: Character & Temperament Types -- by David Keirsey and
Marilyn Bates
Recovering at Home After a Stroke: A Practical Guide for you & Your Family --
by
Florence Weiner, Mathew H. M. Lee, and Harriet Bell
Surviving Modern Medicine: How to Get the Best From Doctors, Family & Friends --by Peter Clarke & Susan H. Evans
Medicare Basics: A Guide for Caregivers -- from The Centers for Medicaid and Medicare Services. To view go to http://cms.hhs.gov/partnerships/materials/caregiversbrochure/
Caregiving Resources for the Aging Network -- from the Administration on Aging,
Department of Health and Human Services. A catalog of all the national
programs to support family caregivers, funded under HHS. To view, go to:
http://www.aoa.gov/carenetwork/default.htm.
Useful Websites
National Aphasia Association (Search keyword, aphasia)
http://www.aphasia.org/
National Family Caregivers Association (Search
keyword, caregiver)
http://www.nfcacares.org/
National Institutes of Health, National Institute of
Neurological Disorders and Stroke (Search keywords: neurology, stroke)
http://www.ninds.nih.gov/
National Stroke
Association
http://209.107.44.93/NationalStroke/default.htm
Resources for seniors
http://www.seniorssearch.com/
Health Evidence Bulletins
http://hebw.uwcm.ac.uk/mental/chap3.html
Postgraduate Medicine Online
http://www.postgradmed.com/index.htm
Social Security Administration
http://www.ssa.gov/
Medicare
http://www.medicare.gov
Medicaid
http://cms.hhs.gov/medicaid/default.asp
Dementia and other diseases review
www.thedoctorslounge.net
Keirsey Character Sorter (Search keyword, Myers-Briggs)
http://www.keirsey.com
Laughter as medicine
http://www.isma.org.uk/stressnw/laughter.htm