Many people lead fulfilling lives after brain injury.
There will be good days and there will be harder days. It will take many years to learn to live with TBI, and to find a balance between the old and new parts of your life. There may always be some grief and longing to be fully healthy and independent (75). But with time, TBI can become a more natural part of your life.
This is what it means to find the new normal.
This final module will help you to prepare for life after rehab and getting back to living your life as a person with TBI.
Returning to your everyday life is an exciting time. But it can also be an uncertain time for many people with TBI (102). You may be used to the environment and routines of rehab, and feeling unsure of what to expect after they end.
Don’t worry, your rehab team are here for you. In the weeks leading up to your discharge, your team will work with you to make sure you have everything ready to move on to your next destination safely. They will also ensure you have supports in place to transition to your next stage of recovery as smoothly as possible. This process is called discharge planning. It involves working with your rehab team to create a discharge plan. As part of your discharge plan, your team will:
It is very important to let your rehab team know if you have any concerns about being discharged. Your team will be able to make sure you have continuing supports and strategies in place to address your concerns once you are back home or at your next destination.
Researchers have found that people who are discharged from rehab with inadequate supports to the community have a higher risk of poor outcomes over the long-term including readmission to hospital or rehab (102) and depression (103), and they are less likely to return to work (104).
Most people look forward to life after rehab. But it can also be a stressful period as you transition from one environment to the next (108). It can feel strange to have been surrounded and supported by healthcare staff for months or years, then suddenly you are sitting at home without your usual rehab and support team.
“Nobody prepared me for life back home…Nobody said, “Well, what are you going to do when you get there?”
- Person with TBI (104)
After celebrating the initial joy of having your own freedom, many people can feel lost and uncertain about what to do next after they return home from hospital or rehab (104). Having a weekly schedule or planner ready can be really useful.
A weekly schedule is an effective way to reduce some of the mental load of remembering, planning and initiating tasks and activities (111). Before leaving rehab, work with your team to create your weekly schedule. Some activities that you can include in your schedule are:
Filling your week with a mix of different activities can help you to stay active and connected to others, which is very important for long-term recovery.
“I’m active throughout the week and occupied and I’m not sitting at home, thinking and pondering. Maybe that makes quite a difference, being active and not on your own, that has helped with my acceptance of my TBI as well.”
- Person with TBI (83)
Dedicate some time at the beginning of the week to review and update your schedule for the coming week. Planning ahead can lessen the stress of managing your life with a TBI.
For many people, returning home after rehab can be a challenging time. It’s during this period that the reality of living with a TBI often sets in and can make you feel discouraged (104)
“ You just sort of assume it’s going to be like being at home like before. I thought it was going to be a lot easier…I thought I was back to normal [after rehab], yes. And I was nowhere near. ”
- Person with TBI (104)
It will take some time to work out a routine for managing your daily life. Be patient with yourself and your family as you work together to find a new normal way of living that works for everyone.
During rehab you will learn and practice different strategies to help you manage daily life with a TBI. Some common strategies for managing daily life used by people with TBI include:
As you get back to living your life it’s important to make time to continue with the exercises you learned during rehab. This includes both physical and cognitive exercises. Repetition and practice help the brain and body to become stronger and better at doing tasks (7). This means that the more you practice a task, the easier and more natural it will become.
Some people might wish to continue with some rehab after being discharged from a comprehensive rehab program. You might not need to continue with all the same therapies you did in community rehab – perhaps you wish just to work with a physio, OT or speech pathologist on specific functions. Discuss this with your rehab team as part of the discharge planning process. Your team can include a plan for ongoing rehabilitation in your discharge plan if this is something you wish to do.
Your team can also coordinate support or care services if you need ongoing assistance with your daily life. Depending on your needs and goals, there are different options for ongoing care. This can include:
Your rehab team will do their best to coordinate the services and supports you need to return home smoothly and continue with the next phase of your recovery. However, sometimes gaps in accessing services do occur for people with TBI (112). It can take a lot of time for paperwork to be processed, especially if the information needs to be processed by different services. There can be long waiting periods for services. You might also encounter issues with funding for services.
This can be a frustrating experience for yourself and your family. You may feel unsupported or neglected – as though you’ve been left on your own to find and arrange access to services that are unfamiliar and confusing to navigate (113). Sometimes this process can become overwhelming. Some people end up giving up on accessing the care they need and can end up falling through the cracks.
As part of managing life with TBI, it’s very important to find and stay connected with a general practitioner (GP) who knows your medical history well and can refer you to appropriate health and social services. Your GP can also monitor your health and progress over time.
Finally, as you adapt to living your life with a TBI, there will be good days, there will be harder days, and some days will just be a downright struggle. Allow yourself to feel what you feel as you go through each day. All your feelings are valid.
Over the long run, having a positive outlook can make a powerful difference to your quality of life and recovery (92). In a large research study of people living with mild to severe TBI, the researchers found that people who had the following positive characteristics had better outcomes after TBI – including greater life satisfaction, physical recovery and emotional well-being.
“I tell myself all the time, ‘It’s going to be okay in the end. I’m going to get there’.”
- Person with TBI (650)
Hope means to be optimistic about the future and expect that good things will happen. Zest is approaching life with excitement and energy. Hope and zest have been found to be the strongest predictors of life satisfaction after TBI (92).
Courage means having the will and strength to keep going when you’re struggling or facing difficulties. Persistence means having the drive to finish what you start. There will be many challenges as you find your way in life with a TBI. You will fail many times. Having courage means to try again after each failure, even if you’re scared. And persistence means not giving up until you achieve what you want to achieve.
Humour means being able to laugh and tease and bring fun and smiles to other people in any situation – seeing the lighter side of life. Humour can help people cope more successfully with traumatic situations by protecting them from becoming overwhelmed by deep sadness or grief (114).
In the study, perspective was defined as being able to share one’s experiences to help and guide others. People who were able to use their experiences of living with TBI to help others found greater life satisfaction and well-being after injury. This is because helping others helps us to feel valued and seen – two important parts of social connectedness.
Surviving a traumatic event and going through a long journey of recovery is not an easy feat. It takes a lot of personal strength to be where you are today. Because of your hardship, you would have gained different views or perspectives on life that not many other people have. Sharing your story can help others to get through difficulties in their lives. Your TBI can be your strength if you let it.
“It’s very important to me to be able to use my experiences with TBI to help people. It’s obviously good for them that I’m helping them, but maybe this is selfish, it’s very, very important for me that I’m helping them.”
- Person with TBI (75)
Compassion means being kind to yourself and the people around you as you work together to find a new normal way of life after TBI.TBI not only changes your life, but also the lives of those closest to you. Be patient with yourself as you adjust to different stages of recovery and life after TBI and celebrate your achievements each day.
“I remind myself I’m doing the best I can, I accept where I’m at and choose to focus on what little bit I can do to improve each day.”
- Person with TBI (65)
Finally, adaptability means to understand and accept that the road ahead will be full of twists and turns and up and downs. Setbacks will happen. Being adaptable means to find ways to live and make the best of your life as a person with a TBI. It isn’t easy, but you can get there.
“It’s like you are locked inside this room, you become a prisoner and in the beginning you are banging on the door asking someone to let you out. You finally discover you can’t get out of there. So you start to think I’ve got to live in here, so you start to move the furniture around so [it’s] in a more acceptable position, you get those bits and make a little cooker, you start to use the wall as a calendar and the whole thing starts to change. The room starts to look pretty good. I have to make the best of this, let’s work on this from here.”
- Person with TBI (83)