Caregivers: Gathering Information with (and for) your Loved One

Isn’t it time to get educated on the diagnosis?  You may think this way, and want to team up with your loved one on getting the process going.  However, until a newly-diagnosed patient has been able to cope with their emotional reaction to their diagnosis, he or she may not be ready to begin the information-gathering process.  So don’t be surprised if you meet with resistance when you offer to get the process started, or if your loved one wants to keep you out of this process.  Depending on the emotional reaction to the diagnosis, openness to information, and information-gathering styles, can present frustrations to caregivers who want to get the ball rolling.


Don’t Push a Newly-Diagnosed Patient Toward the Computer

For a number of reasons, newly-diagnosed patients may avoid gathering information about their condition.  It can be scary to read about the symptoms, especially those that they may not have experienced, as well as how it could potentially progress over time.  Treatments and side effects can be even more frightening.  And if you go online, the numbers of Websites, and the tons of information that they yield, can be totally overwhelming.

Offer to sit down with your friend or family member and sift through pamphlets, or go online, together.  Encourage your loved one to guide this process by asking where he or she would like to begin.  What do they want to know about first?  You might offer to take notes or to keep a list of questions that arise.  What’s important is that the newly-diagnosed patient feels supported but not like they are being pushed toward information that they may not be ready to read or think about.  If you loved one is in Fight reaction, you may find that they want to take charge of the information-gathering to the point that they don’t want anyone else involved.  A patient in Flight reaction may feel like they know enough already, or may be focusing their information gathering in a direction, such as a treatment option, that you don’t necessarily agree with.  And if your loved one is in Freeze reaction, he or she may not even want to discuss the possibility of looking at any kind of information related to their condition, instead believing that it is unnecessary or even futile.

Here are some ideas for supporting a newly-diagnosed patient in the information-gathering process, even if they resist you.


Make it known that you are on stand-by

You have probably heard the term, ‘choose your battles.’  Let your loved one know that you are standing by to help in not only gathering information, but making sense of it, whenever they are ready.


Do your own information-gathering

It’s not realistic to remain uninformed if your loved one is either locking you out of this process.  Find information on your own so that you can both educate yourself on how to be a better support.  And active information-gathering is a great way to cope with some of your own feelings of helplessness.


Let your loved one know you are getting informed

You don’t need to surf the Web in secret.  Gently inform your loved one that you want to be as educated as possible and are doing your own research.


Offer to share your information

As you get educated, offer to share what you are learning.  Use statements like: ‘I just found out about an interesting new treatment.  Do you want to know about it?’ or ‘I saw a great meal plan for helping you feel better.  Do you want to try it?’


Be respectful of the control issue

You and your loved one are feeling your own helplessness.  One of the ways that newly-diagnosed patients assert control is by maintaining control of information, even if this means avoiding it.  Be mindful that pushing them to learn about their condition may only be met with resistance.  So don’t push too hard.