If your spouse has suffered a moderate or severe brain injury, you may be faced with many new and difficult changes in your life. In addition to your responsibilities at home and work, you may also be taking on a new role as caregiver to your injured spouse. You’ll probably become an expert on your spouse’s injury and the various methods of treatment. As you help your spouse along the road to rehabilitation and recovery, you’ll want to find ways in your busy schedule to take care of yourself.
After the injury
If you’re the spouse of a service member with a Traumatic Brain Injury, you may feel like your world has been turned upside down. Your spouse may face weeks or months of hospital stays, rehabilitation and recovery efforts. Caring for your spouse and family, educating yourself on brain injuries, as well as handling the emotional side effects, will be your new priorities.
- Gather information. Try to channel your emotional energy into research. Gather as much information as you can about your spouse’s injury. When you talk to doctors and other health professionals, take notes to compare with your research. This will help you understand the complex medical terminology and make informed decisions about your spouse’s care.
- Pace yourself. Don’t try to stand a vigil at your spouse’s bedside. In many cases, a brain injury requires long-term care, and you’ll need to save your strength for the long haul.
- Understand your spouse's treatment program. Brain injuries can affect your spouse physically, cognitively and emotionally. Each injury is different, and your team of medical care providers will come up with an individualized plan to address all aspects of your spouse’s treatment. In-patient therapy centers provide treatment for three to five hours each day, but the treatment varies for each patient.
- Know your health care providers. During your hospital stay, you’ll deal with different health care providers offering treatment and therapy for your spouse, including rehabilitative nurses, occupational therapists, physical therapists, psychologists, neurosurgeons, social workers and speech therapists. It may seem overwhelming, but all these medical care providers are working together to treat and rehabilitate your injured spouse.
- Be understanding. Some TBI patients tend to act out and behave angrily toward their caretakers, especially during the first few days or weeks. Understand that this behavior is a result of the brain injury and not a personal attack.
- Get help. When family and friends offer help, take them up on it. Whether you need help taking care of your children, preparing meals or other day-to-day chores, don’t try to go it alone. Relying on your friends and family will help ease the burden.
- Take care of yourself. It’s normal to feel burned out after being at the hospital day-in and day-out. Make sure you get plenty of rest and eat healthy meals. Find someone to talk to — a friend, a hospital social worker or a chaplain. Take advantage of Military OneSource, whose consultants can put you in touch with trained counselors in your area at no cost to you.
Understanding the challenges of TBI
The symptoms of TBI can be varied and complex. Patients can suffer from headaches, seizures, dizziness, memory problems and difficulty focusing. Many times, families have the most trouble coping with the complex emotional and psychological changes a brain injury brings. These are some of the problems faced by patients with TBI. Learning to understand and cope with them will make things a little easier for you and your family.
- Chronic fatigue - TBI patients sometimes seem to sleep all the time, but never feel rested. Rehabilitation takes a lot of energy. Just completing the routine tasks you take for granted — like brushing your teeth — can be exhausting for your spouse. The brain injury may also disrupt sleep cycles. To help, make sure your spouse has a strict bed time and wake time. Try to keep to a schedule as much as possible.
- Anger - Some TBI patients can seem angry all the time. They may be frustrated doing what used to be simple chores. They may also be frustrated because they can’t remember things or can’t stay focused on a single project. Try your best to be patient, and don’t overwhelm your spouse with too much to do at one time.
- Too much emotion - Many patients have trouble controlling their emotions. They may shed tears of joy or anger, which can be upsetting to family members. Some patients have trouble sorting out different stimuli, such as sound, touch and visual information. To help your spouse, try to filter out some of the stimulation. Turn off the TV or radio when talking with your spouse. Keep visits with family and friends low key, with just a couple of people at a time. Help your spouse learn to handle emotions by pointing out ways to express them more appropriately.
- Insensitivity - Patients sometimes don’t respond appropriately in social situations and may seem insensitive or unkind. Usually, the patient doesn’t understand there’s anything wrong. Brain injury patients tend to verbalize their private thoughts without even realizing it, causing them to make inappropriate statements. You can help by speaking your feelings directly and not making your spouse rely on nonverbal cues.
- Loss of focus - Brain injuries can cause patients to lose some of their ability to organize their thoughts. This can be especially difficult for patients who used to be multitaskers. They often move from one thing to another, leaving unfinished projects around the house. Help your spouse by establishing routines. Many patients need to carry around a notebook or agenda to help them keep on track.
Taking care of your spouse at home
Coming home from the hospital can be a joyous event. The bruises may have healed, but, for patients with a brain injury, the recovery process is long term. As you get back to a routine at home, you may face new challenges.
- Adjust to changing roles. You probably already had your hands full with work, taking care of household duties or caring for your children. Becoming the sole caregiver for your injured spouse can make your life seem overwhelming. Don’t be afraid to ask for help when you need it. Your spouse may also have trouble letting you carry the load during recovery. Talk with your spouse about the changing roles; couples counseling may help both of you adjust.
- Understand that your spouse may look fine, but may act differently. Many brain injured patients look normal, but still have the emotional and behavior symptoms of their injury. It’s important to understand that these symptoms take longer to heal, and your spouse may still anger easily or become overemotional, especially when tired.
- Let your spouse rest. Even months after the injury, brain injured patients tire easily. Try to schedule outings in the morning, when your spouse is rested. If you’re planning on having family or friends over in the evening, schedule an afternoon rest time.
- Treat your spouse normally. . You may have gotten used to taking care of everything while your spouse was in the hospital. Now is the time to give back some of the duties your spouse took care of before the injury. This will ease your burden and make him or her feel useful.
- Let your spouse take on new tasks. It will take time, but a brain injured patient needs to learn tasks. Although it may be frustrating at first, let your spouse take the time to learn routine chores and help around the house. You will want to pay particular attention to safety as new tasks are added.
- Remember what you have together. Try hard to stop thinking about how things used to be, and try to focus on what you have together now. In the midst of being a caregiver, it can be difficult to remember your role as spouse. Try to take time to nurture your relationship.
- Find a TBI survivors group. A TBI survivors group will put you in touch with other families facing the same difficult times as you. Attending as a couple will help you get involved with new friends and cope with the long-term challenges of living with a brain injury.