Your first visit to the ICU can be very emotional.Your first visit to the ICU can be very emotional. Up until now, you could tell yourself “He’s fine. He’ll wake up in a few minutes.” Suddenly, it’s all true—you’ve seen for yourself. While you may be able to control your emotions when you’re with him, once you are alone you may feel as if your whole world is crashing down around you. It may comfort you to know that these feelings are normal and part of the grieving process. The closer you are to the person with the injury, the more likely you are to grieve for the injured person. The stages of grief don’t always happen in the same order, but they are all part of coping.
“I must be dreaming. This can’t be happening!” Feelings of shock include numbness, confusion, and fear. Many people also feel helpless. The support of family and friends during this stage is very important.
“The doctors don’t know what they are talking about. My loved one will be just like new in a few weeks.” Denial is how we face the overwhelming reality of a devastating situation. During denial, you may not be able to think about the long road ahead in order to get back to where you were only days before.
“My life is destroyed. Nothing will ever be the same.” As you begin to accept what has happened, the reality of what’s ahead can seem worse than death, and depression often sets in. This is a very normal reaction; do not feel guilty about your feelings—it’s part of getting through this. Another common reaction is one of blame. You feel sure that this was someone’s fault. Some people start blaming the doctors or members of the health care team. Again, it’s a normal part of feeling sad about losing the person your loved one was before the injury and accepting the changes in him as you both work to get your lives back together.
“I’m ready to learn! How I can help! We’ll get through this together.” When you reach this stage, pat yourself on the back—you have come a long way. You can now start looking ahead. It is during this time that you can refer to this book. Perhaps read it several times. Use the library at the hospital to find out more about brain injury. See the list of resources on pages 22 and 23.
How long it takes to get to this final stage is different for everyone; you get here when you’re ready. You may still have feelings of denial or despair, and days when you feel helpless. Accept those feelings knowing you will heal at your own pace. “I don’t let it get me down. I do what I can today; and what I can’t do, can wait. I take each day as it comes.” You are ready to live your new life to the fullest, one day at a time.
Depression and despair may be normal parts of the grieving process. But sometimes depression can become serious. If you get so depressed that you can’t care for yourself or your family, talk with your loved one’s health care team about how you feel. They may be able to give you some advice or help.
Things You Can Do to Cope
Accept offers of help.For the first few hours and days your mind will be racing between thoughts about the present and worries about the future. No one knows exactly how long a coma will last or how much recovery will occur. But many people in your situation have found ways to cope. These are some of the things they found helpful. Doing some of these can help focus your energy.
• Buy several small notebooks. Use one to keep phone numbers in; you will need to call family, friends, employers, and insurance carriers. Use one to keep notes about your loved one; write down your questions and the answers. It can also be used as a sign-in book for visitors. Use one to keep up with the financial and day-to-day business of having your loved one in the hospital. Take notes during phone calls. It’s easy to forget what you were told or when and how to follow up.
• Choose a spokesperson. Family members and friends will want information about your loved one. Finding an easy way to keep everyone informed can save time and energy.
Ask someone to keep “the notebook.” Have them keep a list of all the questions from family and friends, and record progress reports from the health care team. Keeping notes will help you remember what the doctor and nurses have said. When family or friends want an update, have them see the spokesperson or read the notebook.
• Use this time to learn about brain injury; it is now a part of your life.
Understanding brain injury is the first step in coping with your grief. Ask questions about anything you don’t understand. Many hospitals have libraries or access to the Internet. The library staff can help you with your search for information. Also, the hospital chaplain or social worker is an excellent source of information. Part of their job is to help you and your family understand your loved one’s injury and progress.
• Start a journal.
It can help you cope with your grief and may be helpful for your loved one as he recovers.
• Ask the health care team for ways you can help and when are “good times” for you to leave the hospital for a while.
Take care of your needs, too. It’s important for you to be involved in the recovery process so you can make good decisions about care. In the early stages of your loved one’s recovery, it’s normal for you to worry more about him than yourself. But it is very important that you take care of your needs, too.
What You Can Do for You
You can help your loved one most by taking care of yourself. You can:
• Save your energy; rest when you can.
• Eat healthy meals; skip the junk food.
• Give yourself permission to leave the hospital. Your loved one is in the care of a well-trained medical team.
• If you have children, explain what has happened; try to keep life as normal as possible for them.
• Find an easy way to let family and friends know what has happened and how much progress your
loved one is making.
• Ask friends and family to write short notes to your loved one that you can read to him later.
• Talk about your feelings with family, friends, or someone at the hospital. Talking with social workers can be very helpful. Ask if the facility has a chaplain.
• Accept offers of help from family and friends. It allows them to take some action.
• Allow yourself to put off “until tomorrow” what doesn’t have to be done today.
• Take care of some personal business every day.
• If you have children at home, do something special for them, too.
• Take care of money matters with the hospital or health insurance company. You may need to bring in an insurance card or other information.
• Exercise a little each day; go for a walk or stretch.
• You can’t do it all yourself; no one can. Accept offers of help.
• Don’t forget the rest of your family. Make plans for the future, knowing you can change them if you need to.
If you are experiencing heart palpitations, muscle aches and pains, headaches, or difficulty concentrating, sleeping, remembering, or making decisions — see your doctor.
How Your Family and Friends Can Help
Wanting to help while feeling helpless is common for both families and friends. Recovery takes time; just watching and waiting can be very stressful. But there are things you can do for your loved one and for yourself. Just knowing “when” to do “what” can take away some of your stress. Friends can help by making phone calls and gathering information or staying with your loved one while you take a break. They can also help care for your children, pets, take care of household chores, and do yard work.
See “How You Can Help With Recovery” for things you, your family, and friends can do at various stages of your loved one’s recovery.
“The people on our street took care of the dog and brought food three days a week, it was absolutely wonderful. There was one person who coordinated the whole thing and it grew to involve everyone in the neighborhood. It was such a relief that it is hard to put into words. When people offer to help, don’t turn it down.”
– Husband of a woman who survived a two-week coma and a five-month hospital stay after a car accident.
Table of Contents
• What is a Brain Injury?
• How Bad Is It?
• How the Brain Functions
• Common Problems During Early Recovery
• The Intensive Care Unit (ICU)
• Understanding Coma
• How Does an Injured Brain Heal?
• How You Can Help With Recovery
• Where Will the Journey Go From Here?
• How Will I Ever Get Through This?
• Where to Go for Help
• Books for Families Coping With Brain Injury