After a brain injury, things may never go back to the way they were. It will take some time to cope with that fact and adjust to what many people call the ‘new normal’. The new normal may include routines and the person’s abilities. While many people talk about the new normal in reference to the person with a brain injury, there will be a new normal for other members of the household, partners, and family as well. You may not have physically changed, but your day-to-day life has. This includes your relationship with the person with a brain injury, your roles, and even your mental health.
The term ‘new normal’ may not be the one you want to use. Brain injury recovery is challenging and full of ups and downs: normal may not be the word you would use to describe new routines, realities or changes in your relationship with the survivor. We are using the term ‘new normal’ because it is widely used by healthcare professionals, caregivers, and individuals living with brain injury.
Please note: This page has been written for individuals who would be living with the survivor/primary caregivers (partners, family, or friends) who spend the majority of their time with the person with a brain injury.
Factors impacting the new normal
Recovery is different for everyone - that’s also something that doesn’t have a sense of normal. Recovery and establishing the new normal will be impacted by several factors, including:
- Habits from before the person was injured. Our habits - good or bad - are the building blocks of our daily life. Habits that carry forward into recovery or that the person picks up after their injury will mold day-to-day routines.
- Location and severity of injury. The location and severity of the brain injury will play a large part in determining what routines will become a part of your new normal.
- Rehabilitation. Rehabilitation is an important part of brain injury recovery and can have an impact on your new normal depending on the kinds of rehabilitation the person is doing, how much rehabilitation, and their commitment to putting rehabilitation techniques into practice outside of appointments.
The new normal will not happen right away
When the brain injury first happens, you will be focused on the health and healing of your friend, family member, or partner. You won’t even be thinking about day-to-day routines because they will have been dismantled completely by hospital stays, medical tests, and appointments (if you are in a close relationship with the survivor). But eventually there won’t be as many tests or appointments. There will be more time that is spent with just the survivor and other members of the household
The new normal isn’t something that will happen when the person leaves the hospital or rehabilitation centre. Chances are your new normal will change several times, and that’s okay. It’s a long process often lasting years that involves coping with the changes you’re both experiencing. It’s important to be patient with yourself and the person with a brain injury as you discover it together.
If you’re having some trouble coping with these changes, you may want to consider finding support groups or a therapist. Support groups and local brain injury associations are an incredible resource for family and caregivers. Other people who have gone through similar experiences can share what they’ve learned and offer advice. Therapists can offer the same kind of support. The important thing to remember is that there is no correct path through these changes. Everything you’re feeling is valid, and you only need to focus on doing what works for you and the person with a brain injury.
How you & friends/family may be impacted by the new normal
Brain injury impacts the person’s family and community. Here are a few emotions you may experience.
Brain injury is unexpected for everyone. You may experience a period of shock when you find out about the injury. You may also be shocked when you see the impact on the person’s behaviours, emotions, and abilities. Shock may make it hard for you to see how significantly the brain injury has affected the survivor. The same is true of other members of the community. Friends and family members are trying to understand what’s happened, may have trouble processing their thoughts, and could even feel physical fatigue. But shock is temporary: it will vary for different people, but it will go away. Talking about the brain injury with the survivor and other friends/family members can help cope with the shock.
Frustration often is in a cycle with guilt, hope, and helplessness. You may experience frustration with yourself, with the situation, or even with the person with a brain injury. It’s normal to experience frustration – this is a big deal, and it takes time to adapt.
If you are experiencing frustration, take a few deep breaths and try to share why there’s frustration. Talking about and understanding the cause of frustration is a great step towards diffusing it.
You may feel a lot of guilt connected to the brain injury. It’s a stressful and sometimes confusing emotion that goes hand in hand with frustration and helplessness. You may feel guilt that you get frustrated with the person with a brain injury, or even that the injury happened to them. Grappling with guilt is complicated, and it may benefit all of you to speak with a professional therapist.
Family and friends often want to help, but don’t know how. This leads to them feeling helpless. You may be feeling those emotions too, even though you are the primary caregiver. Those feelings of helplessness can become hopelessness quickly. This can be compounded if you are taking on a lot of responsibilities and are unable to complete them all. This can lead to a risk of caregiver burnout and deteriorating mental health.
You will need help – you can’t do it all alone. Let your friends and family members now what you and the person with a brain injury need. Not only will you be supported, but you’ll show friends and family how best to support you both.
As your friend/family member moves through recovery, it’s important to focus on the positives. You will all feel hopeful when you see their progress. Hope is incredibly important, as it can be a great motivator. While celebrating progress is fantastic and well-deserved, it’s important that you all understand that things may not go back to the way they were before the injury. Instead of comparing the then and now, focus on how the person is doing in the moment and how to recognize their accomplishments.
- Role reversal & changes in responsibilities
After a brain injury, you may have to take on more responsibilities around the house and for the continuing care of your partner/friend/family member. This may be a huge change for all of you. It’s confusing for everyone, but with time and thoughtful, positive communication, you will all adjust to this new relationship dynamic.
- Withdrawal of social network
After a brain injury, you may notice that you don’t see friends or family as much. Some may disappear entirely. This can be due to the changes in your relationship with them, demands on your time, and more. Sometimes people stay away because they don’t understand your roles and responsibilities or how to interact with the person with a brain injury, even though they would like to connect with you. While this is hard to face, it’s important to be patient with your social network and communicate how you are feeling to them. Talk to them about the changes in your relationship and what you need from them. In turn, listen to what they need and be patient: they’re also coping with changes.
You may also avoid people you know because you are tired of answering the “how are you?” question. Or you may put off seeing people until things are more “normal”. Or you may not feel like being around others, even if you can recognize that time with family and friends may be good for you. Losing interest in socializing may be a sign of depression.
A brain injury is life-altering, and it is normal to experience grief surrounding the changes to your friend/family member. Not everyone will experience all the common stages of grief, and they may not experience them in order.
Tips for exploring the new normal
Self-identity is fluid. While things have changed for you and that’s hard, with time, patience and support you have the opportunity to explore your new identity and shape your new normal along with the person with a brain injury
- Ask for positive reinforcement
Positive reinforcement from others is helpful - everyone needs encouragement, especially when taking on so many responsibilities. You can also give yourself positive reinforcement by writing down encouraging statements or recording the positive parts of your day on an audio device (like a smartphone).
- Attend therapy
Therapy is an excellent way to explore your feelings and your self-identity. A psychologist or psychiatrist will help you work through what you’re feeling, focus on positive progress, and adjust to your new normal.
- Be patient with yourself and others
Finding a new normal doesn’t happen overnight. You’re going to have a lot of ups and downs. It’s difficult but being patient with yourself is one of the most important things you can do for your mental/emotional health and well-being.
It’s also important to be patient with others, especially the person with a brain injury.
- Celebrate the wins
It’s important to recognize the accomplishments of your friend/family member with brain injury. For example, can they sometimes remember things without looking at their notes? Or control a strong emotion? Or feel a little more stable on their feet? Celebrating their wins will not only improve their mood, but it will reinforce how far they have come and give room for you to recognize your own involvement.
- Find the familiar
While you shouldn’t compare where you both are now to where you were before the injury, it’s okay to take comfort in the aspects of your life that are familiar after brain injury. It’s reassuring, and it’s helpful when building the new normal.
- Try new things
Part of living in the new normal is trying new things and learning what works for you and what doesn’t. This can be done through community classes, social groups, or trying new hobbies with the person with a brain injury.