How to Create a Cancer Caregiver Toolkit
Getting organized can increase efficiency and decrease stress. Find a place where you can gather the information you need close at hand. You can use digital and printed tools.
Separate the documents you will need and the records you receive into clearly labeled folders:
Contact information for doctors, including medical specialists, therapists, nurses, and other providers
Contact information for friends and family
Emergency contacts
Insurance paperwork
List of medications, dosages, and timing
Medical records
Passwords
Treatment plans
Schedules can become complex. You can keep a calendar in any of several ways, including on your phone, computer, printed out, or handwritten. You might find it easier to visualize when you can pin it up on a wall or a corkboard. Make it a habit to check the calendar before bed and in the morning.
You can also try task management software that helps you schedule, prioritize, and organize your daily tasks. Ensure that relevant friends and family have access to the calendar, along with any necessary passwords, so that they can assist you when needed.
Use the calendar to:
Track appointments
Time medications
Schedule visitors: Keep this flexible. Your loved one may not feel like having a guest on a particular day, no matter what was planned.
Schedule respite for yourself: Build in time for self-care time, and don't hesitate to ask friends, family, or professional caregivers to take a shift and give you time off.
Schedule daily tasks: Set a schedule for the person with cancer, yourself, and other caregivers.
Attend to household duties: Set time aside to pay bills, perform household maintenance, care for pets, and handle necessary shopping and errands.
Set reminders and alerts, such as in apps or in online calendars
As a caregiver, you may experience significant stress. Gather tools to help support your emotional health, such as:
Journals: Writing things down can help you process them. You can express your levels of fatigue, as well as fears and other emotions. You can also reflect on what the person with cancer has given you and continues to give you.
Inspirational quotes and affirmations: If your thoughts are stuck in a dark place, reading hopeful and insightful sentiments can help you shift gears.
Support groups: Sharing your experiences can help you and others. You might find a local support group or an online group through resources such as Cancer Care Support Groups, CanCare Emotional Support for Cancer Caregivers, and the Family Caregiver Alliance.
Caregiver podcasts: Check out examples like Caregiver Dave, Cancer Out Loud, or the Cancer Survival Toolbox.
Self-care ideas to recharge include:
Find enjoyment: Get a massage or manicure, meditate, read a good book or see a movie, or take a 10-minute walk, maybe in a quiet place like a park, garden, or nature trail.
Stay social: Remember to see friends and attend events you enjoy, such as music or sports.
Stay healthy: Eat well, get plenty of rest, and exercise regularly.
The more you understand about the type and stage of cancer your loved one is dealing with, the better prepared you will be to make important or difficult decisions together, solve problems, and find the professional and medical care that's needed. Your tool kit could contain:
Reliable information and guides: Ask one of the healthcare professionals you are working with to recommend materials or assess the sources you are using.
Information about symptoms, medications, and side effects: Learn the signs of progression, symptoms to expect, side effects of medication, and ways to manage them. Know when to call a healthcare provider.
Tips on how to communicate: It's essential to be able to share concerns and feelings with one another and with healthcare providers.
Dietary advice: Work with the cancer care team's dietitian to understand which foods align with your loved one's preferences and tolerances, as well as what is safe to eat and what may benefit their overall health.
End-of-life planning (if applicable): Become informed and discuss end-of-life care and wishes with your loved one while they can clearly express their wishes.
Along with your folders, create a resource list that includes contact information for:
The caregiving team: All providers, the insurer's case manager, social worker, physical and mental health therapists, and helpful friends and family
Transportation services: Free and paid transportation options for medical appointments, including family and friends
Meal deliveries or food assistance: Including paid delivery services from restaurants and grocery stores, and assistance provided by nonprofit organizations in your area
Financial aid programs: A social worker can help you identify these programs if they are needed
Online resources:
American Cancer Society's Caregiver Resource Guide
National Coalition for Cancer Survivorship: Caring for the Caregiver
Caregiver Action Network Cancer Caregivers
CaringBridge
National Cancer Institute's Support for Caregivers of Cancer PatientsMedically reviewed by Forest Miller, MSOT, OTR/LRead the original article on People
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