If you've suffered a traumatic brain injury (TBI), your friends and family will be relieved once you're in recovery and may think that you no longer need their constant support and concern. However, recovery from a TBI can take up to two years.
"Time and patience are a big part of navigating your loved one's recovery," says Liz Follis, OT, rehabilitation educator at University of Utah Health's Craig H. Neilsen Rehabilitation Hospital. "You must try to take things one day at a time and stay in the present moment. It's okay to mourn the past and be fearful of the future, but you need to focus on trying to stay present in the now."
How Family Members Can Help
When possible, friends and family should work with your treatment team to learn how to help before you're discharged from the hospital. "The transition to home from inpatient therapy can be difficult, although most patients seem very happy to return home to a more familiar environment," Follis says. "Many patients don't return immediately to work and driving, so having a daily schedule with things they need to do and want to do can be very helpful." For many activities that had been considered routine in the past, a TBI patient may require assistance from family and friends.
The Model Systems Knowledge Translation Center's publication Traumatic Brain Injury recommends the following ways family members can provide structure and normalcy to your daily life, offer you support, and help you avoid over-stimulation while not giving you too much or too little assistance. After you return home, you can let your family and friends know which of these recommendations apply to your situation—and for which you'll welcome their help with your recovery.
Provide Structure and Normalcy to Daily Life
- Establish and maintain a daily
- Place objects I need within easy
- Encourage me to rest frequently so I don't get
- Include me in family activities and
- Keep a visible activity calendar on the Cross off days as they pass.
- Maintain a photo album with labeled pictures of family members, friends, and familiar
Offer Support in a Respectful Way
- Try not to overwhelm me with false optimism by saying, "You will be all right" or "You will be back to work in no time."
- Point out gains I've made since the onset of my
- Treat me as an adult—don't talk down to
- Respect my likes and dislikes regarding food, dress, entertainment, and music.
- Avoid making me feel guilty for mistakes and
- If I have memory problems, explain an activity simply and review each step in detail.
- Realize my agitation can be heightened if I have too much activity and Avoid taking me to crowded places.
- Restrict my visitors to one or two at a time.
- Use a calm, soft voice, short sentences, and simple Allow me extra response time.
Heed Safety Tips
- If I show signs of confusion or impaired judgment, I may not remember where dangers lie or judge what is dangerous like stairs, stoves, and medications. Fatigue and the inability to make my body do what I want can lead to injury.
- I must live in a safe environment free of clutter and dangerous objects:
- Keep medications in a locked cabinet or
- Get my doctor's consent before giving me over-the-counter drugs and allowing me to resume potentially dangerous activities such as contact sports, swimming, and hunting.
- Prevent my access to firearms, power tools, or sharp objects; cooking without supervision; driving; or using alcohol or other substances.
- Because I won't be able to drive until authorized by my doctor, I may need you to drive me or arrange for transportation to appointments and other activities.
Take Care of Yourself
Follis reminds family members to take care of themselves. "Caregiver burnout is a real thing, and it's impossible to be a good caregiver if you aren't finding a way to take care of yourself," Follis says. Stress from caregiver burnout can create significant health problems. Follis encourages taking walks, exercising, eating healthy, meditating, reading, going to a movie, and spending time with friends. You could also look into respite care, which is planned or emergency care for your loved one, so you can have a break or if you are unable to provide care for some reason.
"I highly recommend counseling or talk therapy to work through the many new emotions that come with being a caregiver and adjusting to such a huge life change," Follis says. "Counseling can help you discover new strategies for managing caregiver burnout and stress."
The following online resources may be helpful for TBI patients and their caregivers:
Model Systems Knowledge Translation Center's TBI Factsheets
Brain Injury Association of America