Medical Caregiving: Finding Support & Balance
When a child receives a new medical diagnosis, the parenting role can change dramatically. Balancing meal prep, soccer games and dentist appointments becomes even more challenging when ongoing medical needs are introduced. Going from parent to primary medical caregiver can also be daunting. Thankfully, there are resources available to support you so that you can focus on your family.
Getting Organized
Creating an organization system, whether it’s a physical binder or electronic file, will help you to recall and share pertinent medical information with members of your child’s care team. Staying organized from the start will save you time and energy as needs arise in the future. These resources will help you manage paperwork and information related to your child’s diagnosis and care.
This article from the Child Mind Institute is a great starting point if you are not traditionally an organized person. “Organization is not a superpower, it’s just a set of strategies and skills you don’t have yet,” the author reminds us. Getting organized is all about finding what works for you, and sticking to it.
This article from John’s Hopkins Medicine includes a list of medical documents that you may want to consider keeping in your personal records. Most hospitals offer electronic communication systems like MyChart that can help with some of the organizational burden.
Healthspek is a digital tool that can help you gather all of your medical records in one place. This can be especially handy if you are coordinating information across multiple medical systems or networks.
As you organize your medical tools you may want to take the opportunity to get your other documents and personal affairs in order.
Everplans and Capzule are digital tools that can help you organize everything from insurance policies, to personal identification documents, and more.
If you prefer paper based organization consider The NokBox which offers templates and prompts that can help you gather important information.
Communicating with friends & Family
Medical parents are the first ones to get news and updates related to their child’s medical condition. Your friends, extended family, and general support community will want to be informed and understand how to best support you. There are tools available to help you communicate information about your family, and help you coordinate support needs.
Family Wall is a site that helps families and extended families organize day-to-day activities and communications. You can assign jobs, put up to-do lists and even chat all within their secure platform.
CaringBridge is a personal journaling/blogging site that you can use to share your story openly, or with a select audience. The site has tool integrations in their resource section that can help you set up fundraisers and support calendars that link directly to your story.
Meal Train allows you to set up a calendar and request help in coordinating and funding meals from your support community.
Keeping your support network updated is important for many reasons, but there are a few things you will want to keep in mind as you navigate communication related to your child’s illness.
Social media and other digital communication tools can make connecting with your support network easy and efficient. However, it is important to remember that anything you share in even private and secure digital spaces can potentially be tracked down and used in unintended ways by individuals with sinister motives.
Consider your child’s future wishes before posting anything on social media. Once a photo or story is out there it cannot be taken back.
Communicating with friends and family may not be high on your list of priorities, and that is ok! You have the power to choose how and when to share information, and you do not have an obligation to open your family’s private life to others. If you feel inclined to share updates with your support network, but feel overwhelmed by the experience, designate a trusted friend or family member to communicate on your behalf.
Care for the caregiver
Parenting is hard enough when your children are healthy. When you add all that comes with caring for a medically complex child it may seem impossible to find time to care for yourself. Reminding caregivers that they need to take care of themselves is easy, but being a caregiver and following through with self care is extremely difficult. When you finally catch your breath in the aftermath of any medical crisis, consider some of the following tips and resources to help you build a plan for self care.
Take a self care assessment like this one, just to check in and see how many of your basic needs are being met. Remember that self care is more than pampering and relaxation, it includes those routine maintenance things that all of our bodies and minds need.
Get a baseline for your own health, both mental and physical, by making an appointment with your primary care doctor. If you are struggling to manage your own health while caring for your child, ask your doctor if you can schedule additional check-ups beyond a yearly physical.
If you are married or otherwise partnered pursue relationship counseling or support before you find yourself in crisis. Couples that have a child with a severe medical challenge or disability have a much higher divorce rate. This article by from Boston Children’s Hospital includes tips from couples who have been where you are now. Be proactive and look for ways to support your relationship goals.
Ask for Help
It can be uncomfortable to ask for help, but your family and friends will need guidance on how best to support you.
Ask and ask again for support from your medical care team and the social support professionals who are connected with your case. Be specific when you know you have a particular need, and do not hold back.
Use family coordination tools to ask for and coordinate support. Ask a trusted friend or family member to coordinate on your behalf if you are overwhelmed by your other caregiving related tasks.
Consider palliative care if your child is facing a serious medical challenge. This type of care is often misunderstood to only be for those facing the end of their life. This article can help you learn more about how palliative care can help strengthen your support network.
Seek out others who have faced a similar diagnosis as you build your support community. These Red Treehouse guides may be helpful in this process.
Find and connect with your local Ronald McDonald House Charities® chapter to find support in your local community. Programs vary by location.
Contributed by Krista Lehde, Nutrition Consultant, Mother of Three, and owner of UpBeet Cooking. Master Level Certified: Nutrition & Wellness, Holistic Nutrition, Weight Management Specialist, and Sports Nutritionist.