Reflect on your family's needs and try to define top priorities.
More often than not, even the most loving of friends and family have only a limited idea of what you and your family need. People genuinely want to be helpful — but they can't do so effectively unless you are able to offer some guidance.
Generating a "help needed" list with your ill partner is a good first step, but it can be surprisingly hard to do. You'll find a step-by-step process for identifying your partner's and your children's needs, and setting up a coordinated support network in The Daily Routine: Making It Work. After you review this section and talk with your partner, your list of needs might include:
- Providing rides for children to school, events, and activities
- Offering transportation for your partner to and from doctor's appointments or treatments
- Staying with your partner during long treatments or visiting with him or her at home, or in the hospital
- Delivering meals or shopping for groceries
- Updating friends and relatives on changes in your partner's situation
- Taking care of your kids
Most likely, your family's needs will change over time, so remind yourself to reevaluate your situation.
For instance, if your partner requires surgery, immediately afterward you may need extra help with practical matters such as meal preparation and childcare. However, your partner may tolerate the treatment better than expected, and may wish to return to familiar routines as soon as possible. Check in regularly with your partner about what he or she wants or is able to do, and what might be passed on to others. Also think about your own needs, and how they might shift over time. That way, you can seek different types of support to match your family's circumstances and preferences.
Try to get organized.
A cancer diagnosis comes with a new range of responsibilities and obligations, such as scheduling and attending medical appointments, filling out complicated insurance forms, and paying medical bills. Most likely, you will need some tools to help you get organized. The following ideas have worked for other people:
- Buy a wall calendar or large date book that is big enough to track multiple events during each day and week
Record your children's schedules (school, activities, and social commitments), doctor's and treatment appointments, and names of people who are helping out that day. You can try using a different colored pen for each child or type of event to help organize the process.
- Use an online calendar you can share with others
Online calendar applications, such as Google Calendar, allow you to organize your appointments, children's events, and other commitments in one place, and share the schedule to your smartphone and with others, who can edit or make notes about appointments in real-time. Having a calendar multiple people can see and edit may help eliminate confusion. You can also set reminders to be notified on your phone when an appointment is approaching.
- Create a blog to inform family and friends
Creating a blog through a website such as CaringBridge can help you share your progress with family and friends, and also inform them of any opportunities for them to provide assistance. You can run the blog yourself, or delegate that task to a loved one. Your blog can be public or you can choose to share it with only a select few. Many patients also find writing to be therapeutic.
- Make a list of key friends, relatives, and neighbors
Include contact information, such as phone numbers and email addresses, for anyone who is willing to help in a pinch. Make sure everyone in the family knows where to find this list: Posting it on the refrigerator is a good choice. Keep extra copies for others, and be sure to have this list with you (on paper, on your tablet, phone, etc.) for easy access.
- Keep a "medical issues" notebook for listing the names and contact information for members of your medical team, such as your oncologist, social worker, and primary nurse
Also use this notebook to keep notes on clinic visits, medication schedules and doses, and observations about your partner's physical and emotional reactions. Try to find a notebook or folder with large pockets for storing pamphlets, business cards, and other written materials.
- Identify a place to keep insurance or disability forms and medical bills
You might set up a specific file folder or envelope for each, so that you can readily find what you