During Diagnosis and Treatment

New Diagnosis: Organizing Support

The shock of a new diagnosis can be overwhelming, and it may be difficult to imagine how you and your family will cope. This section focuses on practical ways that you can organize your family and medical activities in order to minimize disruptions to your children’s lives, and keep them feeling as secure as possible while you manage your medical condition. Getting help with routine tasks will help you stay focused on maintaining the quality of your family life during this challenging time.

Gather medical information

In order to plan for your family, you will need your medical team to provide information about the expected course of your symptoms, the amount of time and energy it will take to engage in treatment, and any expectable side effects to treatment. For example, if you are the primary driver in the family, will your medications or treatment interfere with driving? For how long? When exactly should you expect to lose your hair during chemotherapy?

Use familiar caregivers and routines

Familiar routines and adult caregivers will be reassuring to your children, so you should maintain them as much as possible, but they may need to be adapted to new circumstances. The carpool may need to be used more days a week, or the babysitter that took care of your children during an occasional evening out may now become a more regular after-school sitter. It is also important to create an emergency back-up plan for unexpected events that might require a different childcare arrangement.

Designate a “minister of information”

As you gather information and proceed with treatment, there may be many other people in your life waiting for updates on your condition. At first, you may want to talk with people yourself, and they may want to express their concern directly. Over time, or if you have a particularly large family or concerned community, you will need help managing the information flow.

Identify a close family member or friend to be your minister of information. This person can spread the word among your relatives. You might ask a colleague to provide e-mail updates to co-workers, so that you do not have to give repeated updates on your health. (Don’t hesitate to let the answering machine take a call that comes in during dinner.)

There may also be a role for someone to organize well-timed visits to see you at home or in the hospital, so that you don’t have to repeatedly explain that you are too tired for a visit, or that you need some quiet time with your family. For people that you do want to talk with directly, ask that they call you while the kids are at school or after they have gone to bed, so that conversations about the illness don’t interrupt family time or bedtime routines.

Designate a “captain of kindness”

If your circumstances have led many people to volunteer various kinds of support, consider appointing a “captain of kindnesses” to organize the well-wishers. Your captain of kindness is a point-person who acts both as a buffer and as an organizer. Referring friends and community members to your “captain of kindness” who has a list of things that you need assistance with provides well-intentioned folks with an opportunity to take care of a specific task, and allows them to feel helpful. You may even have several captains who take on different aspects of your family life: driving, groceries, meals, visits, and so on.

Delegate mundane tasks

While you may be used to managing your family’s life quite independently, you might find that during an illness there is just not enough energy or time to do everything you used to do. As difficult as it may be to give up control over some aspects of your daily life, you may need help to accommodate regular trips to the clinic or to recover from surgery or an acute flare of an illness.

Many things are readily done by others, like certain household tasks, routine shopping, laundry, and driving to and from every after-school activity. Relatives and friends are often happy to help with a range of mundane tasks if they know that they are taking care of something important to you. Your children may not be happy about the changes in some routines, but they will appreciate your being available for quality family time and special events.

Ask older children what they need help with

Young children take for granted that adults will be there to care for them. School-age children may have more individual notions about what is most important to them, or what needs to be organized around the house. They may have priorities about activities or mealtimes that you can take into account in your planning. They may also be more cooperative with changes if they participate in making difficult choices about what gets done and what doesn’t.

Adolescents will certainly have their own ideas about organizational priorities. It can sometimes be frustrating for parents to find that teenagers can talk a good game about what needs to be done, but may have trouble following through on doing any helpful chores around the house. Keep in mind that this disconnect between talk and action is quite normal for teens who don’t yet have the full capacity to think through consequences or abstract ideas, especially when their own desires are at stake. You may need to be patient with their age-appropriate self-preoccupation, and then provide concrete expectations about give-and-take in the family.

Helpful hints: organizing your support system

Gather medical information
Use familiar caregivers and routines
Designate a “minister of information”
Designate a “captain of kindness”
Don’t be afraid to delegate mundane tasks
Leave calendars, schedules, step-by-step directions, and labels for helpers at home
Enlist the parents of your child’s friends
Engage older children in decisions about piorities and organization