“Recovery from TBI is a lifelong journey, not a short journey. I didn’t realise it was going to be this long a journey.”
- Mother of adult son with TBI
Many people can lead meaningful and fulfilling lives after a TBI. But it’s not an easy journey. Recovery is a long-winding journey. If you imagine a road, it can go up and downhill and wind around curves. Sometimes you will feel like you are going fast. Sometimes you will feel slow. Sometimes you will feel like giving up as the hill is too steep. It will not be easy, but you will get better over time.
Many people can lead meaningful and fulfilling lives after a TBI. But it’s not an easy journey. Recovery is a long-winding journey. If you imagine a road, it can go up and downhill and wind around curves. Sometimes you will feel like you are going fast. Sometimes you will feel slow. Sometimes you will feel like giving up as the hill is too steep. It will not be easy, but you will get better over time.
Your recovery journey will also be different to other people with TBI, depending on which area of your brain was injured, and the severity of your injury.
For most people, the recovery journey after a TBI looks something like this:
As you know from Module 3: What to expect in the early days of recovery, your recovery starts in the hospital. Here your doctors and medical team will work quickly to assess and treat you to prevent life-threatening complications.
In the first days and weeks of your hospital stay, your medical team will focus on:
Once your condition is stable, you will start some rehabilitation.
Rehabilitation (or ‘rehab’ for short) is a program of different therapies designed to help you relearn and/or learn new skills and functions to make up for skill that were lost after your TBI. The focus of hospital rehab is to help you to regain important major functions so that you can return home safely (27), including:
Your doctors and healthcare team will be eager for you to start some rehab as soon as possible. This is because research shows that people with TBI who start rehab early are more likely to make larger improvements in functioning (28).
Different healthcare staff will work with you on rehab exercises that might include strengthening exercises, speech and swallow therapy, and training for balance and walking.
This is just the beginning of your rehab journey to enable you to relearn basic skills such as mobility and self-care. Once your medical team are confident you are medically stable (no longer needing daily nursing care), you will be discharged from hospital to continue your rehabilitation journey.
Rehab in the hospital is very different to rehab after you’ve been discharged from hospital. Hospital rehab helps you to regain short-term functioning so that you can return home or to your next destination safely (27).
You are not likely to have regained all your functional skills at this stage. To work on regaining long-term functioning, you will need post-acute rehab (rehab that’s done after hospital discharge). Post-acute rehab is also commonly called community rehab (rehab that’s done outside of the hospital).
Once you have returned home or arrived at your next destination after hospital, most people with moderate or severe TBI will need ongoing rehabilitation in the community.
The goal of community rehab is to help you work on a broad range of functional skills to enable you to live as independently as possible after your brain injury. You will be able to plan your community rehab program with your healthcare team and around the skills and goals that are the most important to you.
Community rehab can be accessed through:
You can learn more about community rehabilitation in Modules 6 to 10.
One year after the initial brain injury, you will be considered to be in the long-term or chronic phase of recovery. By this time, most people with a mild or moderate TBI would have likely been out of hospital for a few months and might be in the middle of community rehab. For those with a severe TBI, you might have just returned home and are about to start your community rehab journey. Everyone’s recovery is different.
With ongoing rehabilitation, most people will be able to gradually increase their independence. As you adapt to living with a TBI over time, you may find that you no longer need the same amount and intensity of rehab as you did in the earlier stages of recovery. You may also find that you are focusing on different skills to those in your early stages of recovery.
In the chronic recovery phase, it is common for people to shift their focus from rehab to activities and support services that promote quality of life and social and community participation. This might include engagement in social support programs, leisure and recreation activities, or volunteer programs. Others may feel ready and want to work towards resuming education or re-joining the workforce. Whatever it is that’s important to you. This phase of recovery is all about finding meaning in life after brain injury – and using the skills learned during rehab to get back to living your life.
Some people with TBI might require ongoing assistance to carry out their daily activities and might consider casual home-based support services (like Brightwater’s Capacity Building program) or options for long-term supported care in an assisted living facility (like Brightwater’s Supported Independent Living (SIL) houses).
There will be more about the chronic recovery phase in Modules 11 to 13.