How to Talk to Family and Friends
When you are first diagnosed with a condition that affects your brain, you may go through a period of shock and surprise. At the same time, there might be a part of you that has suspected a problem with your brain health for some time. One of the first things you may ask yourself is who should know about your diagnosis and how can you tell them.
Reasons to Tell Family About Your Brain Disease
It is very important to involve loved ones as you learn about your diagnosis and treatment options. Some people are very private by nature and would prefer that their diagnosis not be widely known. That is normal and natural. Others have no problem telling loved ones, friends and associates what they are going through.
However, there is a very good reason to share your situation with at least one trusted friend or family member: You will sometimes need someone to come with you to medical appointments. There will be occasions when you need a responsible driver, and it is also helpful to have someone else listen and take notes on such things as managing your medications, scheduling and any changes in diet or exercise. Taking a tape recorder with you can also help you remember all the details of what the doctor or nurse said.
Eventually you will have to have a conversation with more members of your family about your diagnosis. Though some brain diseases, such as strokes and noncancerous brain tumors, can be treated, others can be terminal or have longer-lasting effects on your memory, abstract thought and ability to get around and care for yourself. Even mild cognitive impairment can make it hard for people to make good decisions about their medical treatment. You will need help.
Here are some of the topics you will want to discuss with your family:
The Diagnosis
Start by explaining your diagnosis and what it means. Acknowledge that your loved ones might have been worried about you based on events or symptoms that have already happened. If you can, tell them what to expect as you go through treatment or as your disease progresses.
You do not have to do this by yourself. You can ask a doctor, nurse or social worker to help you or you can use pamphlets and materials available from local clinics or associations. If English is not the primary language for some of your loved ones, you might be able to order information in their language to help them understand.
Tips for Talking Treatment with Your Family
Your Treatment
Outline the treatments available to you. If you have already decided on a specific course of treatment, let your family members know. Otherwise, ask for their input, especially if they will be able to help you get through the treatment. Be honest and realistic about how effective treatment is likely to be and how long it will be before you know whether it is working. In some cases, treatment and therapy can take more than a year before significant results are apparent.
Remember, most people want to help. But you know your relatives best: Some people might just want to be informed, and others might want to be more actively included, with specific tasks they can do to help you.
Their Questions
Family members might have some questions you did not think of. If you don't know the answers, you can ask your doctor or nurse or you can do some research online. If they have a lot of questions, you might want to invite them to your next appointment or encourage them to join a support group so they can get the answers firsthand.
Talking to Children
Although you might want to protect your children or grandchildren from unpleasant news or from worrying about you, they probably will know something is going on, even if they are not told. Children sometimes make things worse with their imagination, so it is best to give them age-appropriate information about your diagnosis and your plans. They may also be worried about how this will affect the things that matter to them, like holiday celebrations at your house, a fishing trip or playing on their favorite sports team. Involving other family members can help ensure that children can continue to enjoy their activities.
Long-Term Planning
There are some issues that people should discuss with their families regardless of their diagnosis, prognosis or treatment. Let your family know what your medical wishes are should you be unable to make those decisions for yourself. Create a living will. And let your family know how you feel about organ donation and what steps should be taken to save or preserve your life if you are not conscious or able to make those decisions yourself.