Advice on Caregiving
Most of us are natural caregivers. Trust your instincts. You probably already know everything you need. Sometimes, though, parents find themselves overwhelmed with the responsibility of caring for their seriously ill child. That too is natural.
Caring for your child with life threatening medical conditions is emotionally and physically exhausting and the two areas feed off each other. The more physically exhausted you are the harder things become emotionally. I roll my eyes when someone says, “Take care of YOU too” But I have to admit the advice is sound.
You are in a marathon, not a sprint. Marathons require pacing and preparation. Admittedly, nothing can really prepare you for the reality of caring for a seriously ill child. You have to live it to understand what is involved. However, once you are in that space, you can stay on top of things and be as prepared as possible. In addition, to avoid “hitting the wall” the caregiver needs to be as rested as possible and get occasional breaks to maintain the pace.
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.
Article on Financial Supports Available: When Your Newborn is Unexpectedly Unwell
Work with the medical team, not against them, and insist they do the same. You might find you want to change doctors or hospitals. Find a team that you can work with that provides the best plan for your child and your life.
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.
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.