How to Care for a Loved One with a Brain Injury

Pamela* had so many questions on how to care for her 40-year-old husband following his brain injury. He had difficulty swallowing and communicating, seemed depressed, and was unsure how to play with their young child or visit with the many friends who wanted to see him. “How do I know when he’s had enough?” Pamela asked the care team.

“It’s so hard to know what to do,” she said in a private moment. “And I know this isn’t just us.”

Pamela’s right. Some 5.3 million Americans live with life changes related to a brain injury. A brain injury can be caused by external events, such as a fall or car accident, or an internal incident such as stroke. March is Brain Injury Awareness Month, which gives us an opportunity to highlight the challenges and strategies that go into caring for a loved one living with a brain injury.

“You may not have a physical scar with a brain injury,” says Dr. Erika L. Trovato, Associate Chief Medical Officer of Burke Rehabilitation Hospital and Director of our Brain Injury Rehabilitation Program. “That can lead to judgment, feelings of isolation, questions of worthiness. And your relationships are going to change.”

Dr. Trovato says the first two questions family members ask are: “How long is this going to last?” and “What can I expect?” Answers differ per patient and per injury, but Dr. Trovato follows a rule of thumb for gaging the rehabilitation journey. The time closest to the injury is the most precious time for rehabilitation, which typically delivers the most profound effect over the first six months. The patient continues to improve over the next six months. After about one year from the date of injury, Dr. Trovato explains, the patient will likely be at what can be considered a new baseline.

During that initial recovery, Burke’s acute inpatient rehabilitation offers comprehensive, patient-centered, and effective rehabilitation to maximize recovery from the physical, cognitive, and psychological impairments resulting from brain injury. Doctors, nurses, therapists, case managers, social workers and other experts attend to functional deficits, but they also devote considerable attention to supporting, informing and educating the caregiver on what to expect, how to help their loved one, and how to connect to resources at home and in the community.

“We support the caregiver in understanding what their new normal looks like,” says Dr. Trovato. “We empower patients and caregivers to achieve a quality of life they can be proud of.”

Navigating a New Normal

Following a brain injury, you might find your loved one’s affect or mental status is different than before. Chemical and anatomical changes in the brain after such an injury can impact emotions. So the first tip is to expect changes in emotion. Your loved one may now be quick to anger or to tire. There may be a change in cognition, which can limit a return to work. Your loved one’s ability to care for their children may be impacted. And they may struggle with how to navigate a reduced level of independence.

Here are strategies you can use to help them—and you—navigate through the new normal and help them return to as active and productive a life as possible:

*Build structure into the day—with ample time to rest, disengage and refuel. Structure helps with consistency and familiarity, and can help give the brain a break. But make sure to build in ample time to rest, disengage and relax several times a day.

*Watch for signs of depression, which include losing interest in things that previously brought joy, overwhelming feelings of sadness, and changes in sleep or appetite. The condition is more common in people with brain injuries, and it can be treated. Talk to a health profession if you see persistent signs of depression.

*You are not alone. Learn to lean on people and find strength in support groups (see the end of this piece for more resources). There are others out there who are living a similar story and may have similar feelings, such as the relatively common one, that they don’t have their partner (or child or parent) back. Support groups can share tips and resources, as well as offer a listening ear.

*Don’t take it personally. A brain injury may decrease a patient’s ability to recognize feelings. Talk with your loved one to try to identify their emotion(s), and let them know how their expression makes you feel, so they are aware.

*Identify and try to incorporate things that make them happy. But resist always giving into to your loved one. They may not have as clear an awareness of their deficits or needs than you do.

*Know that there will be peaks and valleys. Even as the most dramatic improvement takes place over the first year, rehabilitation is a long journey. Seek help and support where and when you can, from friends and family as well as medical and rehabilitative professionals.

For Pamela, the care team helped her navigate such caregiving tasks as filing insurance and disability paperwork, and accessing homecare. They also helped her understand what was going on in her husband’s brain and begin to answer the day-in-day-out questions of caregiving.

To help her gauge how to know if her husband has had enough, the care team gave her some signs to look for, either by observation or by asking him.

• Does he have a new headache?
• Is reporting changes in vision?
• Is he tired?

His brain now requires more energy to recover, so the care team advised Pamela to take it slow. Have friends come over, but limit the length and frequency of the visits. Pay attention to how he is reacting and for any changes in mood, and be prepared to end the visits quickly.

While acknowledging the challenges that come in living with or caring for someone with a brain injury, Dr. Trovato says that the situation can also help individuals and families “learn what are the most important things in life to focus on.” She continues, “They survived, and that’s a big thing. They have people around them rallying for them, ‘villages’ who step up.”

She cites two former patients of hers who, in their teens and twenties, suffered brain injuries. They were able to lean on family and friends for support and to make sure they did not become isolated. And now they are volunteers at Burke, knowing the incomparable value of supporting others during the rehabilitation journey.

“Be honest with yourself and loved ones about your expectations,” says Dr. Trovato. “But continue to persevere and there can be great things ahead, however you define them.”

Resources for further information and support

Burke Brain Injury Medicine & Rehabilitation—acute care at Burke Rehabilitation Hospital, as well as links to ongoing outpatient care

Marsal Caregiver Center at Burke—a vital resource for caregivers to find support and information, and minimize caregiver burnout

Brain Injury Association of New York State (BIANYS)—a nonprofit dedicated to supporting, educating and advocating for families impact by bran injury

Model Systems Knowledge Translation Center—research-based resources, information and connection to local centers of expertise

*Name changed