How to support a family dealing with brain injury

If someone you know is in hospital following a severe brain injury, it can be difficult to know how to help. It’s a distressing time for everyone, and people can find themselves feeling isolated with little information or control.

It can be tempting (and only natural) to keep calling and texting the close family for updates, but equally many people withdraw, not knowing what to say and wanting to leave them alone.

Sometimes even small acts of kindness and support can make a big difference, and this section shares some of the things you can do to help.

The simple things

“In the early days when he was in hospital it would have helped enormously if someone had offered to visit or even cooked a meal for me and the children. I visited every morning and took the children after school. We lived on takeaways of one sort or another most days for 3 months.”

Close family are likely to spend the majority of their time visiting their loved one in hospital, but unfortunately everyday jobs such as shopping and cleaning still need doing.

Knowing that some of these simple tasks are under control can be a huge weight off their mind.

“I had a handful of close friends and family who took care of me. They reminded me to shower. Telling me to eat was no use, so they’d bring food and hot drinks. When I couldn’t get it together enough to get clean clothes from home, my older daughter ordered me a load of leggings and T-shirts to take the decision making out of dressing.

My sister and her friend went and cleaned the house as it had just been abandoned. My mum was in charge of my laundry. A good friend brought essential toiletries and snacks. It’s all small things. But very practical and made all the difference.”

Why not offer to:

  • Visit the house to turn lights on/off, check heating, put the bins out etc.
  • Take the kids to school.
  • Walk, feed or just fuss the pets!
  • Help with essential household tasks, such as shopping, laundry and cleaning.
  • Prepare meals. Simple, one-pot meals that can be heated in the oven or microwave are perfect for late nights after hospital visits, and easy for you to transport.

There are many other tasks you might be able to help with, so don’t be afraid to ask what you can do. Don’t be surprised or offended if they say no, just making an offer will show you care.

“The trolley man in Asda returned my lost purse, my parents helped look after my daughter, my mother let me cry uncontrollably and my dad hugged me. They all helped.”

Communicating

It’s hard to think of a more overwhelming time for close family than having a loved one in critical care. There is a huge amount of uncertainty over the future, with days dominated by visits to the hospital, conversations with medical staff and fielding questions from worried friends and family.

“I found all the ‘keeping people informed’ of progress hard work! Constant (lovely) well meaning messages, phone calls etc asking how my dad was doing. It would’ve been a massive help (in hindsight) if someone had taken on the ‘updater’ role.” 

By understanding this, you can help ease the pressure on them and become an essential source of support.

Remember:

  • If you call for an update and they don’t answer, don’t worry! They’re probably very busy or simply don’t want to talk right now.
  • Wait for next of kin to get in touch, but don’t be afraid to send a message of support.
  • You can discuss the situation with other family and friends, and see if you can work together to provide support.

“In the very early days of my husband’s brain injury the most useful thing that friends did for us was coordinate themselves into groups. One day while he was in intensive care, I had messages from 30 friends and family.”

Tell them about our I’m calling about Chris website, which helps ease the burden by providing a place to share updates, and connect with people who care.

The long haul

The first few days and weeks after brain injury are often dominated by uncertainty and doctors can give very little information about the future. The person with a brain injury is often in a coma or has reduced awareness, and the situation can change day-by-day.

For those who survive a severe brain injury, recovery can last many months or years, the effects can last a lifetime, and cause changes in a person’s personality.
Friends and family members often drift away, not knowing what to say or finding it difficult to cope with the differences in the person they knew.

However, even an occasional message or a suggestion to meet for a cuppa can make a huge difference, not only showing you care but also allowing you to continue being a friend, even if the person has changed a lot.

“I would say that although there is improvement post-injury some effects will be there forever. People make a fuss and visit whilst you are in hospital but once you are settled at home the visits stop. I would say to relatives, please keep giving help whenever you can. Don't stop once the person is out of hospital. Even if it’s only an hour here and there. A different face makes all the difference and helps a carer have a little time away.”

I’m calling about Chris

I'm calling about Chris. Helping you connect, share, and update those who care.

I’m calling about Chris is a new website from Headway that aims to help next-of-kin keep people up-to-date with their loved one’s progress while reducing the pressure of updating them individually.

Similar to Facebook, it offers a news feed and space to post photos, while visitors can reply to posts and offer support. There is also a wealth of information for next-of-kin, extended family and friends to help find out more about brain injury, treatments, rehab and the best ways to offer support.

If they haven’t already set up a page, let the next-of-kin know about this new website by sharing it with them. 

The next steps

The information in this section will help you to support your friend or family member through the early stages after brain injury, and keep in touch as they adapt to changes in the future.

Remember that just as every brain injury is unique, the way people cope and the support they need is also very personal. Try to be flexible and aware of their needs – sometimes that includes respecting their need for time to themselves, and also having someone to talk to when they need it.

By following these steps you can continue to be supportive, and your help will be hugely appreciated.

You can find out more about the effects of brain injury and the support that is available using the links below.