Waiting in the hospital after your child's blood and marrow transplant (BMT) is a challenging time for many parents. Learning about your child's daily routine such as medicines, tests and possible complications can be overwhelming. You also may feel anxious about the strict precautions you have to take until your child's immune system recovers.
To be a good caregiver to your child, it is important that you take care of yourself. Find someone you can talk to, who is a good listener and lets you talk about how you feel. You may find certain friends or a small circle of friends very helpful. Or you might take comfort in the families of other transplant patients. Professional counseling or talking with clergy may also help.
Blood and Marrow Transplant InfoNet links caregivers with others who have had a similar experience. Visit the Blood and Marrow Transplant InfoNet website and click on Helpful Services to learn more.
Here are some tips that can help you cope while your child is in the hospital:
Children notice your attitude and body language, regardless of their age. Dwelling on the positive aspects of your child’s condition rather than on the negative will help make the hospital stay not seem as long. Your child needs to feel secure and comforted. You cannot waste energy worrying about something you do not know about and cannot control. Try not to dwell on the past and do not worry about tomorrow. Enjoy the day for what it has to offer.
Be your child’s advocate
Being your child’s caregiver also means being their advocate. You know your child better than anyone. Transplant doctors and nurses will be working very hard to give your child the best care, but they may not always pick up signs when your child is feeling pain as easily as you.
Find out when the doctors rotate, so you can talk to the doctor who is leaving. Find out information about the new doctor who will be taking care of your child. That way, you can help prepare your child for the change beforehand.
Find out what time the doctors make their rounds each day so you know when you can ask questions. Do not be afraid to stop the doctor anytime you do not understand what he or she is saying.
Keep a diary and carry it with you. This way you can write down all the information so you can help keep track of important information.
Take time for yourself
You need to take time off for yourself, if you want to give your child the best care. Take time to relieve the stress of care-giving, and find some perspective. To help yourself take a break, you can:
take a walk
watch a movie
visit with friends
take a nap
If you have other children at home, do not forget that they need you as well. Arrange to take visits home for a break. Also, try to have family members visit you at the hospital. You can visit in the parent lounge or go down to the cafeteria for a break.
Taking care of your sick child, while managing the usual household and work tasks can be more than you can handle. Invite and accept help from others, such as extended family members and friends. They often truly want to help, but do not know what you really need.
Developing a strong network of support before your child’s transplant will give you the time to focus on caring for your child.
Be flexible and patient
Plan the best way you can, but be prepared for the unexpected. There is no way to predict how your child’s treatment will turn out. You have to prepare for both good and bad times during your child’s treatment. It may take your child some time to recover from complications, if they occur. Take things one day at a time to help you cope.