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The following is an on-line version of text from Getting Better (and better) After Brain Injury/A Guide for Family, Friends, and Caregivers--25 Ideas for Living Smarter and Happier.
Text and formatting have been modified for viewing in various browsers.
Idea # 7
Set for life?
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Participation in a rehabilitation program offers hope for improvement. Glossy program brochures, stories of miraculous improvement, and tours through modern facilities with fancy equipment may lead family members to expect full recovery. |
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Rehabilitation programs can help patients achieve many significant gains. However, no rehabilitation program can "fix" your injured family member so they’ll never need help again. "Why not? There are some really good programs out there." |
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Patients change over time. As they get older their nutritional and health care needs change along with their physical capabilities. Living environments and communities change. People move from a house with no steps to a house with an upstairs and downstairs, and a long set of steps to get into the front door. The schedule for the downtown bus changes or maybe they just stop running the bus completely. Relationships change for the better or worse. Friends once available to provide assistance and emotional support move away or become less available. The patient’s responsibilities change with a move to live independently, take on a job, or return to school.
The fact is that many neurological disorders leave people with special needs for the long-term. Developing an adequate plan for the future requires an appreciation of natural recovery and the limits of rehabilitation. Know that -
- most rehabilitation programs are time limited by admission and discharge criteria. If a patient has certain characteristics and needs, they are admitted. After a certain period of time, when goals are reached, or when funding is no longer available, services are ended.
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- during the past decade, there have been increasing pressures to reduce rehabilitation costs. In practical terms, the result has been fewer services to fewer people for shorter periods of time.
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- progress in rehabilitation isn’t necessarily smooth. Many patients reach one or more plateaus. A plateau is a point where they make little or no progress, at least for a period of time. Sometimes people go backward.
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Most people with neurological disorders need help in the long-term. Yet most individual programs are able to provide help for the short-term. What can you do?
- When told that your injured family member has reached a plateau, request a second opinion. Another therapist with different training, experience, and treatment philosophies may be able to offer help. Another rehabilitation facility with different staff and equipment may offer alternative treatment which is more effective.
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- Realize that taking a break isn’t necessarily a bad idea. Recognize that progress is not necessarily continuous. Plateaus are a natural part of getting better. Trying hard for a long period of time is tiring. Some people get frustrated and discouraged with all the doctors’ visits and just need a break. Taking a break can allow time for recovering stamina and motivation.
- Ask about arranging long-term follow-up with the same clinician or someone else. The patient’s needs are likely to extend beyond the time limits of the program and things can change in the future. Your injured family member may get stronger and be able to take advantage of new therapies. Your injured family member may encounter new problems and go downhill. New treatments are being developed.
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No rehabilitation program can "fix" a person so that they are "set for life."
Things change, sometimes daily, and long-term follow-up is often a good idea.
Getting better and living a good life is a long-term challenge.
Maximum improvement requires commitment, creativity, making good choices, and mastering change. |
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