As a family member or a significant person in a patient's life, you may experience feelings of helplessness or loss of control when a loved one is in the intensive care unit. This guide is designed to provide strategies to help you cope with visiting someone who has a prolonged critical illness. It is difficult to wait without action, but you can do something: You can first take care of yourself.
You are as important to the healing process as the physicians, nurses, medications, and treatments. You have been a part of the patient's life journey long before, and will be long after, this hospitalization.
We now realize what a strong influence positive reinforcement and encouragement from close friends and family have on the healing process. We are learning more and more about the benefits of family involvement in the delivery of patient care. Because of this, your well being is important to your loved one and us. The following recommendations are designed to provide you with strategies that will help you take care of yourself during this difficult time.
Take care of yourself
Proper food and sleep will enhance your ability to listen and understand the significant information you will be given. Stressful situations in addition to staying awake all night, every night, will eventually wear on you, and can make you prone to illness. Try to eat healthy foods regularly. Whenever possible, get up and walk around. Exercise is very important to maintaining emotional health. Do not feel you have to be available every moment. A trained medical team is caring for your loved one. The patients are closely monitored even though there are not care providers directly in the patient's room at all times. Remember your loved one needs all the strength you can give.
An important measure in taking care of yourself is to gather support from family and friends. If other friends or family come to visit, take that opportunity for a little time to refresh yourself. Structure time away from the hospital by asking a friend or family member to take over for a few hours. Make a rotational system if there are many people available to help. Remember that the time in the ICU may be the beginning of a longer recovery where your strength will be needed as well. If family members from out of town offer to visit, encourage and welcome their support. The nurses and doctors take breaks during their shift because the continual light and noise are draining. You should be taking regular breaks from the constant sensory input as well. When someone asks, "What can we do for you, we're here to help," give yourself permission to ask for help. A critical illness in the family is truly the time to muster support from those who care.
Identify a family spokesperson
The role of this person will be to contact all the friends and relatives who need to be reached each day to provide them with an update on the patient's condition. We know that access to information is one of the most significant needs of families of ICU patients. It is recommended that the spokesperson not have the primary relationship to the patient (spouse, parent of a child, significant other). Having someone else serve as family spokesperson relieves him or her of the responsibility to follow through with this most important task. Having a family spokesperson also eliminates frequent calls into the ICU which can pull the nurse away from the patient's bedside.
Support at home
As you spend many hours in the intensive care unit supporting your loved one, matters may go unattended at home. Make sure you delegate someone to pick up your newspaper and mail. If someone offers to cook or clean for you, take them up on it! Ask someone you trust to make sure all your bills are being paid. And most importantly, make sure your child care is in order.
Prepare yourself daily
Prepare yourself for setbacks. Most patients in the ICU are on a roller coaster ride. Some days are good and some are bad. Concentrate on the steps taken forward and view the steps backward as hurdles that can be overcome. Try not to become discouraged. Like the patient, it is also normal for family and friends to have both good and bad days.
Purchase a notebook
Divide it into 3 separate areas. On the first page of the notebook place the name of the intensivist, the physicians, the social worker, and any other care provider that is involved with the care of your loved one. On the second page place all the phone numbers of the various people you would like to contact each day. Don't forget to include work and school colleagues.
In the second section write down your questions. Anytime you think of something you are concerned about, even if you don't think it is important, write it down. As you continue through your process of waiting, you may forget what you were told, or how you were supposed to follow up on the information you received. You may need to have information repeated several times before you understand it. This is normal. Don't be afraid to ask for clarification.
In the third section start a journal. Some family members have found keeping a daily journal of events, in and out of the hospital, to be very healing. It can also provide you with encouragement as you see small improvements over time.
Keep your faith and your hope strong, making sure that everybody is encouraging and hopeful while with your loved one. If your loved one is not alert, always begin your visit with your name. "Hi, it's _____." Talk to your loved one and tell them what is going on. Read cards that have been sent. All these things can help with their recovery.
A social worker or chaplainry can assist you while your loved one is in the intensive care unit. They can help you obtain resources for financial assistance and verifying credit. They can also give you grief counseling or spiritual support for your family or the patient. Do not hesitate to contact them and request various resources.
Publication Date: 2002
Page Last Reviewed: July 28, 2011
Reviewed By: Jonathan D. Feldman, MD