Living with a child, spouse or family member/friend who has a serious mental or physical illness can cause many difficulties for families. When the illness is discovered and diagnosed, the life of all family members changes dramatically. At first, family members may feel relieved that there is a diagnosis of the problem. There is no more struggling to understand what is wrong and the desperate search for answers seems to be at an end. There is hope that if doctors know what is wrong, then certainly they can heal the illness. Diagnosis of a serious illness, however, is often just the beginning of a long and difficult path.
Following diagnosis, the caregivers may attempt to deny the full and long term implications of the illness, especially if the illness is debilitating, if the ill person will require ongoing physical care, if the treatment will financially stress the family, and/or if the illness is life threatening or terminal. As well as wanting to deny the full implications of the diagnosis of a serious illness, caregivers will often experience feelings of guilt, anger, resentment, fear, depression, and emotional/physical exhaustion.
As a caregiver for someone with a serious illness, there are many things you can do to ease the burden and to ensure that you can help your loved one in a healthy and positive way.
First, you must recognize that you have both a right and a responsibility to take care of yourself. It’s not selfish to take care of you; it’s absolutely necessary. The person you are looking after needs you to be in the best health possible.
Second, the caregiver must establish a support network to ensure that they are not alone in this task. You must make the necessary connections to get help from others. You will need breaks from the continual demands of providing care. You must have the courage and the humility to ask other family members to take regular shifts or to contribute financially, and you must arrange for a part time professional in-home help when necessary.
Third, as a caregiver you must take the time to do some things for yourself. In a healthy relationship, including in a relationship with a seriously ill person, people need to have separate and personal aspects to their lives. If you are going to keep psychologically healthy, you must have this kind of balance in your life. You are a whole person with many dimensions. Being a caregiver is only one part of who you are. Don’t feel guilty for taking time for yourself to meet your needs. You will be a much healthier and happier caregiver when you take care of yourself in this way.
Fourth, allow yourself to have the feelings of anger, guilt, fear, resentment, depression and other difficult feelings as they arise. These feelings are a normal part of your adjustment to a major change in your life and to taking on a demanding and often overwhelming task. Talk to friends or to professional about your feelings. Attend a support group for caregivers. You will stay healthier if you acknowledge and express your feelings and work them through. If you don’t deal with your feelings, you will either become ill yourself or you may inadvertently take them out on the person you are caring for or on other family members.
Fifth, don’t allow yourself to be manipulated by feelings of guilt that you should be doing more, or that you should live with the same limitations of the person who is ill. You still have your health and you have a responsibility to yourself to live in a full and healthy way. Continue to have your social and community connections. These are vital to your ongoing health and well-being.
Sixth, remember that you must pace yourself. Your role as a caregiver can go on for months and years. In any job it is important to set limits on how much you do, to have a healthy balance in other areas of your life, and to take time to regenerate on a daily, weekly, and yearly basis.
Finally, take pride in what you’re doing. Give yourself credit for the courage and endurance that it takes to care for a loved one at home. Forgive yourself for your humanness and accept that you are doing the very best that you can. Acknowledge that doing your best does not mean that you have to be perfect or that you are always happy to be doing this task.
There is no right way and there is certainly no easy way to care for someone who is ill. Trust yourself to make the right decisions and to do the best you can. You may have to make some very tough decisions as the illness progresses regarding treatment and placement of the ill person. Remember that you’re not alone. You have family, friends, and a community to help and support you. Depend on them in the same way that you have allowed the person who is ill to depend on you.
Dr. Stephen Carter