Module 13: Finding the new normal

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.

Getting ready to leave rehab

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:

• Coordinate your discharge to your next destination – whether it’s home, a different rehab service or a long-term supported care facility,
• Prepare a discharge summary for your healthcare providers,
• Create referrals to any health services you might need,
• Recommend any medical equipment, mobility equipment and home modifications,
• Set you up with opportunities for ongoing social and community participation.

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).

Finding a new normal way of living

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.

Create a weekly schedule

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:

• Self-care and grooming,
• Household chores,
• Appointments,
• Work or education commitments,
• Rest time,
• Exercise,
• Social activities,
• Community participation activities,
• ‘Me’ time – or time for yourself.

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.

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.

Managing daily life

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)

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:

• Allow more “thinking” time,
• Use memory aids such as a diary, journal, calendar, notepads, photos, timers or alarms,
• Headphones or earbuds can help to reduce background noise,
• Keep important items in the same place,
• Use checklists to help you keep on track,
• Plan for extra time for activities and tasks,
• Create a calming safe space in your home where you can go if you need a time out. Sensory overload and stress can lead to fatigue, anxiety, and anger.

Continuing your recovery

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:

• Home-based support or therapy (i.e. a therapist or support worker comes out to your home a few times a week to assist you with your care needs),
• Supported group houses for people with disability aged under 65 years,
• Residential aged care for people aged 65 years or older.

Challenges with accessing ongoing services

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.

Your outlook counts for a lot

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.

Hope and zest

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 and persistence

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

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).

Perspective

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.

Compassion

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.

Adaptability

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.

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