Care partners, or caregivers, need care too.
As a care partner (also known as caregivers), it is easy to be overwhelmed by caring for a loved one. An important point to remember is that you, as a care partner are also a survivor because you, too, are surviving the challenges, responsibilities, and life-changing effects of this disease and its treatment.
We have compiled a comprehensive list of care partner support resources, including agencies, organizations, and websites providing emotional and psycho-social support, access to supportive care communities, and other helpful resources especially for families and caregivers.
Support Group Resources
MM Families Resource and Resiliency Tool Kit
Here are some resources and resilience ideas that other MM Family participants have found helpful on their journey and wanted to share with the group. In addition, some information listed has been provided by our group speakers. While these options may work for some families, all families are different, and some of these options may not be applicable. Please use your discretion when considering these options. Please also check with your doctor regarding any physical activity or medical options that are listed.
Depending on the activities, some activities should either be avoided and/or modified. All medical/therapy information is for informational purposes only and not for diagnostic purposes. Please discuss with your medical team as applicable.
Please note that the IMF has not reviewed these tools/resources and does not provide its endorsement, except for those that are listed on the IMF website.
Publications
Quality of Life, Psychological Distress, and Prognostic Perceptions in Caregivers of Patients with Multiple Myeloma
A research article from ASH about examining the caregiver's quality of life, psychological distress, and prognostic awareness.
Facing Forward: When Someone You Love Has Completed Cancer Treatment
This booklet from the National Cancer Institute was written to share common feelings and reactions that many caregivers have had after treatment has ended. It also offers some practical tips to help through this time. It is available as a PDF, for Amazon Kindle, or as an eBook.
Caring for the Caregiver
Because caregivers are focused on the daily activities, such as going to doctor’s visits, preparing food, coordinating care and services, or offering emotional support to a loved one, they may neglect their own needs. This booklet from the National Cancer Institute "provides ways for a friend or family member to take care of themselves while caring for someone with cancer. It gives you communication and self-care tips to focus on your needs while helping your loved one too." It is available as a PDF, for Amazon Kindle, or as an eBook.
Coping With the Cost of Care
Frankly Speaking About Cancer: Coping With the Cost of Care is for people who want to know more about managing the cost of cancer care. It can be difficult to find one place where people affected by cancer could learn about practical matters such as insurance coverage, Medicare and Medicaid, co-pay assistance, Patient Assistance Programs, Social Security, health care reform, and other resources to help manage cancer-related finances.
Cancer Support Community - What Do I Tell the Kids?
If you are a parent, or caring for a child and cancer is in your family, this booklet is meant to give you information about a child’s general understanding of cancer, ways to talk to them about cancer, some common behaviors you may see in children, and ways to support your family through this experience.
Links to Caregiver Organizations and Information
Help for Cancer Caregivers
Help for Cancer Caregivers is a unique collaboration of organizations with a shared goal of improving the health and well-being of the people who care for people with cancer. Please be sure to tell any caregivers you know about this site.
American Cancer Society: Caregivers and Family
Learn about what to expect if you become a caregiver for a person with cancer, as well as find suggestions and tips for making sure that you take care of yourself. This page includes links to American Cancer Society (ACS) publications, support networks, and online communities.
Atlas of Caregiving: Research, Data, and Solutions for Family Caregiving
Atlas of Caregiving explores the everyday practice of family caregiving. Their research "applies new methods to collecting, analyzing, and presenting detailed contextual data to address these questions, and more."
Cancer Support Community - What Do I Tell the Kids?
If you are a parent, or caring for a child and cancer is in your family, this booklet is meant to give you information about a child’s general understanding of cancer, ways to talk to them about cancer, some common behaviors you may see in children, and ways to support your family through this experience.
Cancer.Net
The American Society of Clinical Oncology (ASCO) site defines the role of caregiver and the potential challenges caregivers face.
Caregiver Action Network
The Caregiver Action Network (CAN) is a nonprofit providing education, peer support, and resources to family caregivers across the country free of charge.
Caring Bridge
A nonprofit providing free websites that connect family and friends — and ease the burden of keeping family and friends informed — during a serious health event. Authors add health updates and photos to share their story while visitors leave messages of love and support in the guestbook.
Family Caregiver Alliance
Founded in the late 1970s, the Family Caregiver Alliance (FCA) was the first community-based nonprofit to address the needs of families and friends providing long-term care at home. FCA now offers programs at national, state, and local levels to support and sustain caregivers.
