The Role of the Care Partner in Myeloma
Care partners walk alongside their loved ones to help them live well with myeloma
By Robin Tuohy, IMF Vice President, Support Groups
Who is a care partner?
Care partners, also known as “caregivers,” are individuals who provide essential physical, emotional, and practical support to those facing multiple myeloma. A care partner can be a spouse, family member, friend, or hired helper. Many people with myeloma have a primary care partner plus an extended support network that includes additional care partners.
How a care partner can help
Care partners play an essential role along the myeloma care continuum. Research has demonstrated that patients with strong care partner support tend to have better survival rates and mental health than those without such support. Although each caregiving relationship is unique, care partners can help at many points in the myeloma journey. These are just some examples of when care partner support may be needed:
Medical appointments
Assist with scheduling medical appointments or accompanying the patient. Care partners may help with asking questions and taking notes during appointments.
Medication management
Assist with organizing medications, keeping track of refills, and reporting any side effects to the healthcare team. Care partners may help with medication reminders and schedules.
Daily living
Assist with meal preparation, shopping, errands, or transportation.
Physical assistance
Assist with physical needs such as bathing, dressing, or mobility.
Emotional support
Provide a listening ear, a source of comfort, companionship, and encouragement.
Myeloma knowledge
Participate in learning about the complexities of myeloma and treatment options. Care partners may help with patient empowerment.
Healthy lifestyle
Model and encourage healthy behaviors such as exercising, smoking cessation, and eating a balanced diet.
Patient advocacy
Assist with navigating health insurance, accessing support services, and addressing barriers to care.
Financial decisions
Assist with or make financial decisions. Some care partners may be designated as having legal power of attorney.
When a care partner is needed
Support from a care partner may be needed along the entire myeloma journey or at pivotal points, intermittently (e.g., at weekly treatment), for a short time (e.g., at an appointment), or for an extended time (e.g., during a stem cell transplant). Certain events may require more care partner support:
- When education and decision-making are needed (e.g., a start or a change in treatment).
- During treatment, especially when receiving a cellular therapy (e.g., transplant, CAR T-cell therapy, bispecifics).
- When a procedure includes sedation.
“Care partner” or “caregiver”
The IMF’s use of the term “care partner” reflects the individual nature of the myeloma journey. Many patients are now living better and longer, and a patient and their care partner each can be a giver and a receiver of care along this journey, supporting each other in a true partnership.
Building a relationship with a care partner
Honest communication is the foundation of a strong bond between a patient and a care partner. Acknowledging your need for assistance can be humbling, especially if you’re used to caring for others. Communicate your feelings, concerns, needs, and responsibilities to prevent conflicts. Accept help graciously and understand that caregiving can be stressful and isolating. Encourage your care partner to maintain their self-care, friendships, and interests. Embrace flexibility and adapt to changing circumstances. Over time, your relationship with your care partner can flourish, growing stronger and more resilient.
Visit carepartners.myeloma.org for more information and links to numerous resources. Watch a conversation between IMF Chief Medical Officer Dr. Joseph Mikhael and long-term myeloma care partner Robin Tuohy by visiting videos.myeloma.org and selecting the “Myeloma Made Simple” tab.
(This article was published in the 2023 Fall Edition of the IMF's quarterly publication, Myeloma Today. Read the full publication here.)