Dear Caretaker of a Brain Injured

Many think that a brain injury only happens to the person who sustained it, but the reality is that it also affect people in their network. Although it happens to a particular individual, it is very much a family affair. Getting our heads around it can feel overwhelming, but know that you are not alone experiencing this roller coaster of feelings and changes.

In this blog, I’ll break down how brain injury can affect family members/carers & I will put forward various strategies that can be helpful in supporting that dear person in your life. Lastly, I think that it’s also super important to touch base on ways in which you can best look after yourself as a family member or carer.

How does brain injury affect family members/carers?

Everyone’s challenges may slightly differ, but there are also lots of commonalities in how the whole family can be affected. To name only but a few:

• Less personal time

• Financial difficulties

• Role changes within the family

• Problems with communication

• Lack of support from family/friends

Brain injury is a significant and often stressful event and family members can also go through a range of emotions such as anger, sadness, anxiety, frustrations and guilt.

Some can also find it really hard to see how much their loved one has changed. There might be a grieving process for them too which is often referred to as ambiguous loss. Everyone needs to build their resilience in this type of situation so regardless of where you are sitting on the fence, there is always a learning curve.

How family members/carers can help?

There is a variety of ways in which you can support someone recovering from a brain injury once they get to come back home.

• Attend medical appointments or therapy with them

• Ask your loved one’s GP or treatment team about ways in which you can support them

• Work together on establishing a daily routine that works for all of you

• Ensure the person isn’t getting too fatigue or flag to them when fatigue is starting to set it.

• Communicate with them, keep them involved in decision making and make sure they remain involved in daily activities

• Be honest, but positive. A good way to do this is by focusing on the gains experienced.

• Avoid comparison between the “old me” and “new me” as comparison is indeed the thief of joy.

• Remain respectful; talking down can trigger other emotional issues such as anger, lack of confidence, negative self-image or low self-worth

• Keep a calendar on the wall so everyone is aware of what is on the upcoming agenda

• If memory problems are in play, create an album with pictures and names of familiar people and places.

• Break activities or tasks down in simple steps and review each steps as they come along

• Avoid situations or settings that could lead to sensory overload. E.g.: Have one or two visitors at a time, avoid crowded places, minimize incoming senses to process (visual, auditory, tactile)

• Give your loved one additional time to respond or complete a task.

• Ensure that their environment is safe. E.g.: Avoid clutter, adequate lighting, and limit access to potentially dangerous areas or substances. We want to avoid the potential of additional injuries.

It can be a fine line between giving too little or too much assistance. Make sure you get regular feedback from the person who’s had a brain injury as they will be able to guide you further and asking the questions may take away some of their insecurities too.

How can you look after yourself as a family member/carer?

It’s important to remember that you can’t pour from an empty cup so sometimes you have to take care of yourself first in order to be helpful to your loved one. Navigating brain injury recovery can be stressful for everyone involved. Managing your levels of stress and ensuring that you are sufficiently rested plays an important part in allowing you to support your loved one to the best of your abilities. They need you healthy and rested so here are some ways in which you can look after yourself too:

• Learn to relax (breathing exercises, mindfulness, meditation, etc.)

• Explore new coping strategies as the previous ones may not be adequate anymore

- Keep your schedule regular

- Exercise regularly

- Keep some time for yourself

- Join a carer support group

- Find the humor in some of the situations that arise

- Ask for additional support

- Delegate some tasks

• You can only solve one problem at a time. Identify the problem and discuss with your loved one different ways to solve an issue. Once you settle on a way forward, don’t be bound by it if it doesn’t quite get you the desired outcome.

It’s okay to revisit your options and try something else.

In conclusion, brain injury recovery comes hand in hand with trials and errors. You don’t know what you don’t know right? It’s okay to make mistake and review your perspective. The important thing is to take on board those to maximize how the family unit manages all the changes that may have occurred and optimize overall recovery.