As a caregiver for a loved one who has suffered a traumatic brain injury (TBI), there are many decisions to make. What is the best treatment plan to unlock your loved one’s path to recovery? You want to meet the expectations your loved one has for recovery, but the decisions you make also need to factor in the feasibility of execution by both the patient and their support team.
If your loved one has a TBI, there is no single clear path to deal with the changes they’ll go through. The time it takes to heal varies from person to person and depends on many factors, including how long it takes to receive the most appropriate medical treatment.
Some damage from a TBI is immediate, or primary. Other damage is considered secondary, and can develop gradually over a few hours, days, or possibly even weeks. Symptoms of TBI can be secondary, meaning they can occur gradually over the course of hours, days, or appear weeks later. These secondary brain injuries are the result of reactions that occur after the initial head trauma.
A traumatic brain injury affects the entire family. For many family members, life is not the same. Your family may struggle to cope with the changes in your loved one’s behavior. Often, the injury requires the roles and responsibilities within the family to change. If your parent is the one with the TBI, you may find yourself caring for the one who was the head of the household—the one providing the care is now the one needing the support. This role reversal can disrupt the family dynamic and lead to friction among its members. If you’re the spouse of someone with a TBI, you may find yourself needing to bring in the family income while still carrying out your caregiver responsibilities. There may be feeling of isolation and resentment toward friends and other family members who are not as supportive and don’t understand how much life has changed.
If your loved one has a TBI, they will likely need help for a long time. As your loved one moves out of the critical phase, you will become more involved in their rehabilitation, so it’s important to look after your own health and well-being as well. Caregivers of loved ones who have suffered a TBI may experience feelings of stress, anxiety, anger, and depression which may increase your risk for other health conditions like high blood pressure. You may feel overwhelmed by the changes in your responsibilities, adjustments to your schedule, and lack of support from others. You need to take care of yourself so that you can stay strong enough to care for your loved one. Get rest when you can. Eat properly. Don’t neglect your own doctor visits.
Remember that you are not alone. We have lots of resources at CaregiverAction.org that can help you with the basics of caregiving, self-care, and feelings that you may have. You can check out our 10 Tips for Family Caregivers or it might help to find the right support group. To chat anonymously with other caregivers in similar situations, go to CAN’s online Care Community. You can also contact our Caregiver Help Desk, staffed by caregiving experts, to help you find the right information you need to help you navigate your complex caregiving challenges.
Caregiving for Physical Changes Associated with TBI
Every brain injury is unique, so your loved one’s recovery will look a little different from another patient’s. The recovery process depends heavily on the severity of the injury as well as the area of the brain that was affected. Some patients require intensive rehab in an inpatient facility for months, while others will progress through the stages of recovery more quickly.
The most progress in your loved one’s recovery will be in the first 3-6 months. Once released from the hospital, they will likely move to a rehabilitation facility for continued therapy. This can include physical, occupational, and/or speech therapy to work towards functional goals such as walking, activities of daily living, and communication.
After a traumatic brain injury, your loved one may have a range of symptoms, depending on the part of the brain affected and the severity of the damage. Your loved one could have physical symptoms such as headache, weakness, fatigue, ringing in the ears, blurred vision, dizziness, sensitivity to light, changes in sleep patterns, and problems with coordination.
As their caregiver, you know your loved one best and are likely to notice any physical changes in their condition. It’s important to note any changes that you see and report anything new to their doctor. You are an important part of your loved one’s care team and will help them carry out the treatment plan.
If your loved one has headaches, their doctor may prescribe medication. It might help to have them lie down in a dark, quiet room. You should encourage your loved one to avoid bright light and it’s a good idea for them to avoid alcohol or any foods that trigger headaches. You can also keep a headache journal, noting the activity that preceded the onset of their headache, the time of the day, the intensity of the headache, and anything else that you notice. Share the journal with your loved one’s doctor at their next appointment.
It’s important to understand your loved one’s fatigue. In most cases, it will lessen over time. You can help them by setting up a daily schedule and encouraging them to follow it. Schedule important appointments and events at times of the day when your loved one has more energy. If you notice that they’re getting tired, encourage them to take a break.
To address changes in your loved one’s sleep patterns, you can encourage them to stick to a regular sleep schedule—getting up and going to bed near the same time every day. This may involve limiting naps during the day. It might help to avoid consuming caffeine later in the day and exercising, eating, or drinking too close to bedtime, and keeping the bedroom cool and dark.
To help with dizziness and problems with coordination, it’s a good idea to limit the risk of falls in your home. Your loved one might resist, but if they have a cane, walker, or another assistive device for mobility, make sure that they use it. Remove throw rugs and make sure there is a clear path to walk through a room. Check to see that handrails are not loose and that there is a handrail on both sides of the stairs. Place a lamp or other light source near the bed and have a nightlight in case your loved one needs to use the bathroom during the night. In the bathroom, install grab bars in the bathtub and by the toilet. Place non-skid strips or a non-slip mat on the floor of the bathtub or shower and have a non-skid rug or mat on the floor to prevent falls.
Above all, be patient. There will be good days and bad days. Your loved one’s recovery may hit a plateau. It’s discouraging, but more progress can still be made. Don’t lose hope. Recovery can continue for years after TBI, so it’s important you’re your loved one continue their therapy. There is always hope for improvement with time and dedication. It might be frustrating to you, but it’s important that your loved one complete an activity at their own pace. Give them as much time as they need to get a task done.
Caregiving for Cognitive Changes Associated with TBI
After a TBI, your loved one may have cognitive symptoms such as a shortened attention span, problems with memory, trouble communicating, loss of the ability to read and write, and difficulty learning something new. When dealing with cognitive changes, one of the most important things you can do is keep to a routine and not move things around. Keep things as consistent as possible. For someone with a TBI, change is more disruptive than it would be to someone else. If you leave the house to go somewhere, make a point to take the same route each time.
It can help to develop strategies to address any deficits in memory that your loved one may have. Items like day planners, alarms, and journals can help them stay on schedule and may spark some memories.
If your loved one has trouble focusing, try to keep distractions and background noise to a minimum. It also might help to discuss one topic or perform one task at a time.
To address your loved one’s difficulty learning new things—which is the biggest challenge with issues of memory—repetition is key. Consistently going over new information and performing new tasks repeatedly can help your loved one keep what they’ve learned.
Problems communicating can increase your loved one’s stress and lead them to be more dependent on you. If your loved one is having difficulty communicating, there are some things that you should and shouldn’t do. When speaking to your loved one, make sure you have their attention before starting to speak, use shorter words, and speak more slowly than you normally would. It can help to ask questions so you can make sure that your loved one understood what you said. If your loved one is trying to say something and struggling, it may be tempting, but don’t finish their sentence. If they are searching for a word, try not to give it to them. Unless they may get frustrated or ask for help, it’s better to let them try to finish their thought on their own.
It’s difficult to identify which cognitive changes will decrease over time as your loved one recovers, and which are permanent. Your loved one may feel anxious and sad about the uncertainty. It’s important to help your loved one adapt to these changes and remind them that you’re there for them.
Caregiving for Emotional Issues Associated with TBI
Your loved one may not be aware of the extent of their injury until they go back to their normal routine. Understandably, this can be upsetting and may lead to emotional problems. Depression and anxiety are common in people with TBI. These emotional symptoms can make your loved one view their injury as more severe and cause them to be less functional and more dependent on you. If your loved one is showing signs of depression, talk to their doctor. They might benefit from medication, therapy, or both.
In addition to depression and anxiety, your loved one may show signs of irritability, frustration, mood swings, and lack of impulse control. Make note of your loved one’s symptoms, how often they occur, if there are any triggers to bring them out, and if there has been a change in the frequency or severity. This is information that should be reported to your loved one’s doctor.
It can help to create a soothing environment at home. Pay attention to the physical needs of your loved one. Being uncomfortable can trigger these behaviors. It’s important to validate your loved one’s feelings, that any anger or agitation they feel is real. Reassure your loved one that you are there to support them.
As a result of their injury, your loved one may have pseudobulbar affect (PBA) which causes sudden, uncontrollable crying or laughing that doesn’t correspond to how the person feels. Conversely, especially in the earlier stages of your loved one’s recovery, they may lack emotional responses such as smiling, laughing, crying, anger, or enthusiasm. This can lead to embarrassment, withdrawal from social situations, and isolation. If your loved one doesn’t respond emotionally or has an inappropriate response, try not to take it personally. It’s a consequence of their injury. One thing you can do to help your loved one is to encourage them to note your smile or laugh at something funny or tears in the case of something sad.