Diagnosis Day for Parents Families Caregivers

Diagnosis Day for Parents and Families

Diagnosis Day

Families and parents usually don’t know they are going to be caregivers until diagnosis day, or as its sometimes called: D-Day.  Diagnosis day is often the day on which important changes are about to take place.  While we might have some warning signs, it seems the day we get an official diagnosis is usually the first glimpse into what these changes maybe moving forward.

What Now?

Once you get a diagnosis, the most logical question is what now?  How do you move forward with this new information.  It can be very overwhelming if you try to do it all at one time.  It also might vary on what you need to do and how quickly you need to do it, depending on if you have a diagnosis for a child or for an adult. You may also want to take a look at an earlier post on 5 Things To Do On Diagnosis Day.

Consider mapping out a care management program for the person you are going to be caring for. Here are five steps you can take to generate your starter care management plan.

Step 1:  Research

The first step toward making a plan is knowing a little bit about what you do or do not have to plan for.  Often researching the specifics of the new diagnosis can give you a baseline for things to look for and consider in your planning process. Everything you read online is not necessarily true so be diligent in your quest for information.

Consider writing down key websites that you find helpful while you are researching, as it is likely that you will forget them later.  In addition, think about asking doctors what they suggest as good resources.  One word of caution – some of what you find and read as a course of action, treatment and outcome may not happen in the same way it may have happened for others.  It is easy to get discouraged as you read about the worst case scenarios. Is the source repeatable? For an example, Mayo Clinic is known for being one of the most frequently researched sites.

Step 2: Gather the Troops

While you might be the person assisting as the primary caregiver, you are not the only helper.  While you may be the best caregiver, you are not the only one who can help out.  You will need your energy for what might be a long process.  There is no value in being a martyr. With that in mind, there are others that are in your loved ones life that may also want to experience the rewards of caring for someone you both love. Now might be time to create your Dream Team. Creating your dream team need it will make it easier when a situation arises and help to alleviate a stressful situation.

Step 3: Build the Starter Plan

Use the information you obtained from your research and from the list of individuals that can help and begin to create your care plan.  Consider personal, financial, health, and legal matters when you put your plan together and who might help with those items.  The Mindlight App helps families, parents and carers collaborate communicate and coordinate tasks, files and more.

Step 4: Explore Mobile Applications to Help

There is a lot to keep track of when you are caring for another person, especially if you are already caring for your own family.  You can use applications like MindLight to track the tasks you decided you need in your starter plan and you can also keep track of the support team that is helping you.  You can even use the virtual file cabinet to store some of the research materials you gathered in the first step.

Step 5: Take Care of Yourself

You will hear this a lot when you are the primary caregiver.  However, self-care might look different for you than it looks for them.  The most important part is to know that you cannot care for someone else if you are personally not well or injured. So it is in the best interest of the person you are caring for to care for yourself too.

You Will Be Okay

Getting a diagnosis can be scary, but it can also be the catalyst you need to begin planning how you want to show up for your new role of caregiver.  While you are still a mom, daughter, sibling, or spouse, you are now more than that.  You are a caregiver.  However, you know how to do this and you will be okay. There isn’t a manual that you can purchase that tells you everything you need to do as a new caregiver.

You may also benefit from Six Stages of a Caregiving Journey – Caregiving 101


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Source:  Adapted from “The Caregiver’s Toolbox” by Carolyn P. Hartley, MLA, and Peter Wong.