How can I not become a burden on my friends and family?

Pacing

The caregiving needs will vary depending on the ups and downs of your child’s illness and treatments. You will quickly learn to enjoy the good times and resume “normal” life. When times are not as good, you have to do what you can to protect your stamina to be there for your child. Do not be afraid to ask for help – many people in your life are wringing their hands wondering what they can do. Tell them what they can do. Let them bring meals, run errands, or walk the dog. Let them take your other kids for an afternoon or overnight. Let them sit with your sick child while you sleep.

Sometimes it seems like I need to take care of my friends around my child’s illness.

Set Boundaries

Do not take care of anyone except your immediate family. Often caregivers find themselves taking care of and protecting extended family members, friends and neighbors who mean well but are simply a hindrance. Do not fall into that trap; you do not have to “be there” for anyone except your child and your immediate family. If you find others want to come over and visit and you don’t have time for that just tell them. When they give you counsel or tell you about horror stories about others with a similar diagnosis, don’t listen. Cut them off and walk away. Protect yourself. Often people not in the situation think you should be reacting a certain way and when your reaction is different they suggest you are not handling things properly. Ignore them. When they tell you they are worried about you, smile and say thank you. I appreciate that and walk away. If the same concerns are coming from those closest to you or your situation, though, stop, listen, and let them help.

Just like your child’s illness, there will be an ebb and flow of caregiving. Be prepared to change your course to meet the changing tides. The best way to do that is to prepare as much as possible. Remember when you find yourself sprinting to slow down the pace for the marathon.

How do I keep track of it all?

Preparation

Your child will have numerous medications and treatments. Start a log or journal. Prepare a one or two sheet recap with all the current meds, treatment history and the names of all relevant physicians, or other important individuals. Update it as things change, which is easy to do on the computer. When your child has to be admitted, you have a synopsis of everything for the admitting doctors who likely will not know your child. In addition to the obvious benefits of saving time and insuring accuracy, it also conveys to the hospital staff that you are a member of this team and come in with something to offer. Consider putting a smiling photo of your child at the top of the page.

Learn what you can about your child’s condition. Finding the right resources can be tricky because the information readily available is either frightening or too clinical. Ask your child’s doctors, social workers, nurses and other parents for good resources. Use them. You will be amazed at how quickly you learn and become comfortable with the terminology, treatments etc. The fear may start to ebb a little bit when you arm yourself with knowledge.

It seems like I am giving updates of my child’s history at every change of shift. What else can I do?

My child’s needs must come first; can I really take care of myself too?

My child was just diagnosed; it’s all overwhelming, where do I start?