When someone has a brain injury, everything changes. And those changes don’t only affect the person who’s recovering. They affect everyone who cares about them.
If someone in your life has a brain injury, you might be wondering how to help and what to say or do. You might be struggling to adjust to the changes in your loved one.
“These abrupt changes can be hard to deal with. Adjusting to life after brain injury can affect you emotionally – and these emotional symptoms can get worse over time. The person with the brain injury and the caregivers can both have mood changes,” said Ian Crain, MD, a neurologist with Banner Brain & Spine. “The symptoms of brain injury vary widely from person to person. Some people with brain injuries may need little or no support, while others may require 24-hour supervision.”
The recovery journey can be long and uncertain, but the support of family and friends makes a big difference. If your loved one is navigating a brain injury, here’s how you can help them feel supported, understood and safe while caring for your own well-being.
How can brain injuries affect a person?
Memory loss is a common sign of a brain injury, but there are other changes you might not expect.
“A traumatic brain injury may cause several signs to develop suddenly,” Dr. Crain said. Some of these changes can be frustrating or confusing to both the person experiencing them and their loved ones.
They include:
- Headaches
- Sleep changes, such as sleeping too much or irregular sleeping, which can turn into insomnia
- Vision changes
- Being bothered by bright lights, loud noises, busy environments or tasks that involve a lot of thinking
- Mood or personality changes like irritability, mood swings, agitation or lack of interest in activities they used to enjoy
- Impulsiveness
- Trouble processing large amounts of information or multitasking
- Forgetfulness
- Poor concentration
- Being easily overwhelmed
- Trouble completing everyday tasks
Brain injuries can be invisible, meaning someone may look fine on the outside but still be struggling on the inside. “Many times, the person with a brain injury lacks insight into the severity of their symptoms. They are not able to detect problems with their own functioning,” Dr. Crain said.
It is normal for both the survivor and their loved ones to experience emotional reactions to these changes.
What should you say and what should you avoid saying?
“It can be very hard to know what to say to a person with a brain injury. Many times, the person resists being told they are doing something out of the ordinary or incorrectly. Sometimes, this can cause violent or aggressive behaviors,” Dr. Crain said.
Your words can make a big difference. The goal is to be encouraging without minimizing what your loved one is going through.
“While you need to take action if something is potentially dangerous, try to be as supportive as possible. Try to avoid only pointing out negatives – instead, highlight positives. Keep in mind that while some symptoms from a traumatic brain injury are permanent, at least some improvement is expected,” Dr. Crain said.
Helpful things to say:
- “I’m here for you, no matter what.”
- “Take your time, I’m listening.”
- “I know this must be frustrating. You’re doing great.”
Phrases to avoid:
- “You don’t look like anything’s wrong.”
- “You said that already.”
- “Just try harder.”
Even well-meaning comments can sometimes feel dismissive. Listening and validating the other person’s feelings goes a long way.
How can you be helpful without taking over?
You want to be helpful but not controlling. That balance can be tricky. “At first, you might need to make all decisions for a person with a brain injury. As time goes on and symptoms improve, you should let them make more decisions on their own when they are able,” Dr. Crain said.
If the person with a brain injury is being destructive, providing an outlet for their energy can be helpful. It’s a good idea to do this indirectly when possible. “For example, if a person with a brain injury is tinkering with things around the house and breaking them, provide other things for the person to tinker with,” Dr. Crain said.
Here are some ways to offer support without making your loved one feel like they have lost independence:
- Offer to go to appointments or therapy sessions
- Help organize medications, meals or reminders if they are open to it
- Encourage them to try things on their own before you step in
- Be patient with tasks that take them longer than they used to
- Don’t focus on fixing everything – focus on being present and steady
“Remember, a person with a brain injury may not always be able to express their appreciation, but your consistent support is key to their success,” Dr. Crain said.
Don’t forget your own needs as a caregiver
Caring for someone with a brain injury can take a toll on your mental, emotional and physical health. You might feel guilt, sadness or even resentment at times, which does not mean you are doing a bad job. It means you are human.
“Caregiver burnout is a major problem. At first, many caregivers can handle their responsibilities but over time it becomes harder,” Dr. Crain said.
You can help prevent caregiver burnout by:
- Learning more about the type of care needed
- Talking to a friend, family member, support group, mental health professional or social worker
- Taking breaks to rest
- Setting realistic goals
- Taking time for yourself
- Asking other friends or family to share responsibilities
- Setting healthy boundaries
- Maintaining a healthy lifestyle by focusing on your diet, exercise and sleep
- Acknowledging that feelings like frustration, guilt, sadness and anger are a normal part of caregiving
What can you do for caregiver burnout?
“Caregiver burnout is extremely common,” Dr. Crain said. One survey found that 61% of family caregivers are juggling caregiving responsibilities and working. Many of them have trouble balancing work and life responsibilities and caregiving impacts their stress levels.
“You should anticipate the need for help due to caregiver burnout and set up a plan to prevent it as soon as possible,” Dr. Crain said.
Symptoms of burnout include:
- Physical, emotional and mental exhaustion
- Stress
- Being withdrawn
- Feeling anxious or depressed
Dr. Crain compared burnout to a candle — when it runs out of wick, it can’t continue to provide light.
If caregiver burnout develops, consider:
- Talking to a mental health provider
- Making time for self-care
- Asking for help
- Saying “yes” if someone offers you help or saying “no” if something results in more responsibilities
- Reaching out to local organizations or the Brain Injury Association of America
- Using respite care so you can get a break for a few hours, a few days or even several weeks
When should you seek additional help?
There may be times when your loved one needs more support. Reach out if:
- They are having trouble managing their emotions or mental health
- You have concerns about their safety or self-care
- You notice changes in thinking, behavior or physical abilities
The bottom line
“Caring for someone with a brain injury can be extremely hard, but creating a supportive environment for healing gives them the best chance for recovery and improves satisfaction for everyone involved,” Dr. Crain said. With the right information and resources, you can support their recovery while caring for your own health.
If you have concerns about your loved one’s recovery or your own well-being, speak to an expert at Banner Health. We offer neurology, rehabilitation and behavioral health services to help people recover and live well after a brain injury.
To learn more about what recovery can look like and how to manage it together, check out Navigating Recovery After a Brain Injury: A Guide for Patients.
