Caring for someone who has recently suffered a brain injury is both physically and emotionally exhausting. Emotional stress, if not addressed, can overwhelm and immobilize you, possibly just when your survivor needs you the most. This article will help you monitor and improve your mental health throughout these trying days.
Caring for someone with a brain injury, who undoubtedly will suffer some permanent impairment, leaves you vulnerable to at least ten debilitating emotions: shock, denial, panic, anger, guilt, grief, helplessness, loneliness, fear, and depression.
Just being aware of the potential havoc these emotions can wreak gives you a head start in handling them well.
Shock: This is a common reaction to any terrible news. ” This can’t be happening. It doesn’t feel real.”
Denial: Shock often leads to denial. “There must be a mistake. My daughter wouldn’t drive like that.” “Not my son. He’ll be back to his old self in no time.”
Shock and denial are healthy. They give you time to accept the reality of a sudden tragic event. They become unhealthy when allowed to linger. For example, too many survivors and caregivers deny that a serious brain injury means lifelong disability. Denial then becomes an insurmountable obstacle to the best possible recovery.
Panic: Panic usually accompanies shock and denial. Your thoughts are jumbled. Your body is shaking. Adrenaline is shooting through your veins, making you restless, if not hyperactive. Nothing makes sense. You don’t understand and you cannot recall what the physicians are saying. You’re in no condition to make vital decisions.
On day two of my wife Jessica’s recovery, I asked the neurosurgeon consulting on her case the same question five times, never absorbing his response. Fortunately, my sister was with me and she took over the questioning when the doctor lost his patience.
Shock, denial, and panic usually are short-term emotions. When they are preventing you from facing your survivor’s injury realistically and rationally, it’s best to have someone at your side to help you cope with the situation.
When the adrenaline stops flowing and you have had time to digest the bad news, other emotions can distract you from your caregiving responsibilities.
Anger: Something immensely unfair has happened to your survivor, to your family, and to you. Your lives are about to be changed dramatically. The future suddenly has become very cloudy. It’s not unreasonable to be angry at:
• Your survivor, for putting herself at risk
• The person who caused the injury through recklessness
• Yourself, for somehow not preventing the injury
If you’re really losing your cool, you may direct your anger at:
• The doctors for not being more definitive in their statements
• The nurses for not treating your patient better
• The custodian who mops the floor at an inconvenient time
Here are three suggestions for harnessing your anger:
1. Try to forgive everyone responsible for the injury—including the survivor and yourself. Blaming others accomplishes nothing. If you can’t forgive, set blame aside for a while.
2. Vent your anger. Letting it boil will make you even angrier until you explode.
3. But be careful how you vent. Directing your anger at the people caring for your loved one—doctors, nurses, therapists, and health insurance bureaucrats, for example—is never beneficial and can be harmful.
Twice, in the early days of Jessica’s recovery, I let anger overwhelm me. The first time I punched the wall of an elevator. The second time I screamed at Jessica’s uncle. No harm done. My weak punch didn’t send me to the emergency room and Jessica’s uncle understood my need to vent. A punching bag, however, would have been a better choice in the first case.
Guilt: Guilt is another potentially harmful emotion. Spending hours wondering what you could or should have done to prevent the injury will not help your patient recover. Don’t lose sleep over the “why” questions. “Why did I let her drive at night? She’s too young.” “Why did I let him get a motorcycle? They’re so dangerous.”
There are no answers to these questions. Focus on the future, not the past. Accidents happen.
Guilt also can arise from how you have chosen to spread your time among your survivor, family, employer, and anyone else who depends on you. Remember, you can’t satisfy everyone. Make an informed decision regarding what’s best for you, your patient, and others. Then, don’t allow guilt to weaken your resolve to stick to that decision.
Guilt can be unhealthy in two ways:
1. It can crowd out the positive emotions—joy, hope, and determination—essential to being an excellent caregiver.
2. It can cause you to try to absolve yourself by attempting and failing to be a superhuman caregiver.
Grief: Grief is a natural and healthy response to a brain injury. You, too, are a victim. But, unlike death and a funeral, there’s no social convention for publicly acknowledging your grief. Most people are ignorant of the life-altering consequences of a brain injury. You may not receive the support you need to work your way through the mourning process.
Coping with your grief is a crucial aspect of your recovery. Here are six suggestions for healthy grieving:
1. Don’t allow yourself to be rushed. Everyone grieves at his own pace.
2. The only way to get past your grief is to experience it.
3. Let it ebb slowly.
4. If you have the urge to cry, let the tears flow.
5. If you need to talk, find a good listener.
6. If grief is distracting you from your caregiving duties, see a professional counselor.
Helplessness: Helplessness is a hallmark of brain injury. Much of what will happen in your patient’s recovery is beyond your control. You can’t wake your survivor from her coma. You can’t heal her brain. You can’t accelerate her recovery; it is a slow, lifelong process. Worst of all, you can’t foresee the future. No one knows how well your patient will recover.
Helplessness can be maddening. More importantly, it can lead to lethargy. “This situation is so bad. There’s nothing I can do to help. I guess I’ll stop trying.”
Here are five ways to combat helplessness:
1. Identify what you can control.
2. Record your goals.
3. Plan how you will accomplish these goals.
4. Concentrate your energy on implementing these plans.
5. When helplessness resurfaces, refer to your list, your goals, and your plans, and put yourself back on track.
Loneliness: Only those who have experienced brain injury can truly appreciate the unique challenges you face. Your relatives and friends won’t fully understand what you’re going through. They may not know how to support you.
When loneliness is weakening your resolve, try these five suggestions:
1. Reach out to others. Ask for their support.
2. Explain that your survivor has been transformed forever and you have no idea what the future will bring.
3. Ask those closest to you to read about brain injury.
4. Join a support group, either locally or online.
5. Don’t go through this ordeal alone.
Fear: Fear is another potentially debilitating emotion. Brain injury can cause a multitude of fears, for example:
• Your patient may not recover as well as you hope.
• You may lose your job if you spend too much time at the hospital.
• The medical bills may bankrupt you.
• Your family may fall apart.
• You may not be up to the role of caregiver.
• You are terrified by the unknown.
Unresolved fears will eat away at you and compromise your ability to care for your survivor. Fear is best countered with education and action. If the unknown is keeping you awake at night, learn as much as you can about brain injury. Be sure your employer fully grasps what you’re going through. If you’re worried about money, review your finances and adjust your spending, if possible. Apply for the government benefits applicable to your survivor’s new disability. If you’re worried about your caregiving abilities, honestly assess your shortcomings and start asking others for help.
Depression: Unless you always view the glass as half-full, expect to be hit by depression soon, if it hasn’t hit already. This is natural. The loss you suffered is shattering. The task ahead appears insurmountable.
Some depression is okay, but don’t let your brain become habituated to depression. The actual mix of chemicals produced by your body when you are depressed can be tough to turn off if it flows for too long.
If depression is making it difficult for you to get out of bed in the morning, driving you to drink too much, or interfering with your caregiving, follow these four suggestions:
1. View your depression as the first step in adjusting to your loved one’s brain injury.
2. Share your concerns and grief with somebody.
3. Seek professional counseling.
4. Tell your doctor about your depression and its causes. The temporary use of prescription medication can help lift the cloud of despair and re-energize you.
A major turning point for every caregiver is being able to conquer much of the anger, guilt, grief, helplessness, loneliness, fear, and depression that accompany this major, unanticipated life change. (These emotions will never go away completely.)
To be an excellent caregiver, you must trade your negative emotions for feelings that will focus your energy on supporting and advocating for your survivor. These are: joy, hope, and determination.
Joy: I know it’s not easy to imagine feeling joy in the face of the daunting challenges you and your loved one face. However, it’s crucial that your patient—who may sense and mimic your state of mind—be surrounded by positive energy.
Even today, Jessica is quick to recognize my moments of emotional turmoil and adopt my mood. Don’t let your negative thinking thwart your survivor’s progress. Keep these four suggestions in mind:
1. Celebrate even the tiniest gains—the first opening of an eye, the first spoken word, the first hug, the first meal.
2. Don’t dwell on what your survivor was able to do before her injury.
3. Focus on what she can do now and the huge advances she will make in rehabilitation.
4. Remind yourself frequently that countless survivors of serious brain injuries create new, rewarding, and happy lives after their recovery and rehabilitation.
Hope: Hope is essential to a successful recovery. Without hope there is helplessness. When you’re dragged down by helplessness, the rigors of living with a brain injury soon will defeat you.
Without hope, you become one more obstacle for your survivor. With hope, you can motivate her to work hard at her recovery and rehabilitation.
Some overly cautious doctors and nurses will try to stifle your hope by mistaking your realistic optimism for denial. Don’t let them. But remember, there can be a fine line between hope and denial. A successful recovery is not a full recovery, but considerable headway is possible with perseverance and patience by the survivor and the unending support of her family and friends.
Determination: Your loved one is facing a monumental task. Her success depends on her determination to work hard and your determination to support her in every way possible.
To summarize the main points of this article, there are eight ways you should be preparing yourself to be the caregiver your survivor deserves:
1. Focus on what you can control.
2. Take excellent care of yourself, both physically and emotionally.
3. Learn all you can about your survivor’s brain injury.
4. Take regular vacations from your caregiving duties, even if just for a day.
5. Ask for help often.
6. Turn unhealthy emotions into an optimistic outlook.
7. Focus on the strength and resilience you share with your survivor.
8. Always remember, you can do this.
Garry Prowe
