Caregivers and MBC

Caregiver is normally defined as the person who most often helps the person with cancer and is not paid to do so. In most cases, the main (primary) caregiver is a spouse, partner, parent, or an adult child. When family is not around, close friends, co-workers, or neighbors may fill this role. The caregiver has a key role in the patient’s care. Good, reliable caregiver support is crucial to the physical and emotional well-being of people with cancer. Given the importance of this role, we are dedicating the month of June to share information and resources that we hope will be helpful to caregivers.

Caregivers wear a lot of different hats. They serve as home health aides and companions. They may help feed, dress, and bathe the patient. Caregivers arrange schedules, manage insurance issues, and provide transportation. They are legal assistants, financial managers, and housekeepers. They often have to take over the duties of the person living with MBC, and still meet the needs of other family members.

You, as a caregiver, need to decide what your role will be – your level of participation in medical appointments and treatments, managing medications, etc. – in agreement with the patient. Collaborate, talk, listen!

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It’s almost impossible to plan for a major health problem like metastatic breast cancer. Suddenly you’re responsible for the care of the person diagnosed with MBC, and you’re also needed to help make decisions about medical care and treatment. None of this is easy. There will be times when you know you’ve done well, and times when you just want to give up. This is normal.

Learn to accept help and focus on what you are able to provide. Set realistic goals. Seek social support – people in support groups understand what you may be going through. And, set personal health goals. If you don’t take care of yourself, how can you expect to successfully care for anyone else?

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When making plans and starting important conversations, the most important focus should be on what the patient wants. It’s common for families to assume wishes and make decisions without consulting their loved ones because those conversations are uncomfortable. Approaching these conversations with love and confidence can help everyone feel supported — especially the patient. By putting the patient first, families are able to help them find closure, fulfill final wishes, and reassure them that they are supported.

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There is so much to learn: what is MBC and how is it different from early stage breast cancer, what treatments are available, how do we maintain a good quality of life – including pain management, where are the support groups – for the caregiver as well as the patient, what other services are out there, including estate planning, and how do I access them? Resources are available, and the Alliance is a good place to start. Visit www.mbcalliance.org/our-members to learn who our members are and explore the many services they offer.

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Fredric Rivers is a two-time survivor of cancer – both kidney and colon – as well as a liver transplant recipient. He is now the caregiver for his wife Jamil, who was diagnosed with Metastatic Breast Cancer in 2018. Ric and Jamil have actually both been caregivers, taking turns providing for each other as well as for their sons. They all appeared together on Good Morning America in April of 2019 where they shared their positive message and talked about the importance of family and the support they all provide and receive.

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Linda Holden is an advocate for Male Breast Cancer and Metastatic Breast Cancer. Her husband Bob was diagnosed de novo in January 2003. She was Bob’s caregiver for seventeen years until Bob passed away on February 28, 2020. A graduate of the National Breast Cancer Coalition’s Project LEAD®, Linda is a passionate patient advocate, volunteering with the American Cancer Society as a Lead Legislative Ambassador, with Susan G. Komen as an ambassador, and with the Male Breast Cancer Coalition. She has met with her state representatives to lobby for cancer-related bills, using her voice to get legislators to pass bills for more money for research and other issues pertaining to cancer.

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Allen Pannell‘s wife, Amy, passed away from MBC 7 years ago, after they were together for 3 years and married for 15 months. He has a doctorate of Philosophy in Business from the University of Tennessee and is an individual member of the Metastatic Breast Cancer Alliance. Having been inspired by losing someone to MBC and knowing how many breast cancer patients will eventually be diagnosed with MBC, Allen chose to join the Alliance to be part of the networking process to contribute to the MBCA’s goals. He is the Vice President and Treasurer of Breast Connect, Inc., and BreastConnect.org—dedicated to providing those impacted by breast cancer with a one-stop shop for resources.

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