Recently, the term “care partner” has gained popularity to describe those assisting myeloma patients. However, it’s essential to distinguish between a primary care partner and a care partner.
A caregiver is a patient’s companion throughout their myeloma journey, hence the term “care partner.”
A myeloma diagnosis can be equally challenging for both the patient and their loved ones, especially for those who step in as the primary care partner. These are typically spouses, significant others, or family members who live with and provide daily support to the patient. A primary care partner provides physical, emotional, and practical support, helping the patient navigate life with myeloma.
However, primary care partners often find themselves thrust into an unfamiliar world of medical terminology, treatments, and appointments. Mutual support between the patient and the primary care partner is crucial—it’s a partnership where both must learn about the disease, make decisions together, and support one another through the complexities of treatment.
Other individuals who assist in various ways form part of the broader support network and are considered care partners.
Many myeloma patients have both a primary care partner and a wider support network.
The role of a primary care partner is often sudden and involves a steep learning curve. They face numerous challenges while managing day-to-day responsibilities and the patient’s evolving needs. It’s important to establish a support network early, as the needs of the patient will soon become the top priority. Unfortunately, primary care partners often neglect their own well-being, but self-care is essential. If they are not well, they cannot provide the best care for the patient.
Remember, the myeloma journey is a marathon, not a sprint. While the initial diagnosis brings fear, over time, with careful management, longer and better outcomes can be achieved.
The Basic Needs of a Myeloma Patient
The diagnosis of myeloma can be overwhelming. Even though there are excellent treatments available in 2024, and 5- to 10-year survival is common, long-term outcomes are still uncertain.
Questions like “Will I be able to work?” “How will I manage health insurance?” and “Will the treatment be effective for me?” often flood patients’ minds. Both patients and their care partners wonder how they will cope as their lives are forever changed.
Creating a Plan: An Indispensable Strategy
To manage the complexities of a myeloma diagnosis, a helpful strategy is to make lists of key questions for different categories:
- What exactly is myeloma? Do I need to consult an expert?
- What treatment options are available?
- Who will take notes at appointments and keep track of medications?
- How can I manage symptoms and side effects?
- Will I need professional help at home?
- How will I handle household chores and errands?
- What about health insurance and financial concerns?
- Should I set up an Advance Health Care Directive or Power of Attorney?
Depending on individual circumstances, there may be additional needs, such as mobility aids, transportation, or childcare support.
The Role of the Primary Care Partner
A myeloma diagnosis brings significant changes. Responsibilities once shared may now fall solely on the primary care partner. They may face the added stress of managing insurance paperwork, finances, and medical decisions. Attending doctor’s visits and ensuring the patient receives proper care can also be overwhelming.
It’s important to remember that while myeloma is incurable, it is highly treatable. Processing this reality can take time, and long-term expectations may need to shift. For example, will travel or visits with family still be possible?
To learn more about the roles of primary care partners and tips on self-care, visit the IMF Care Partner page.
The Importance of a Support Care Team
Monitoring a myeloma patient’s daily condition is critical. The primary care partner can detect early signs of complications, such as increasing weakness or pain. With new immune therapies like CAR T and bispecifics, toxicities must be closely monitored.
For example, patients undergoing CAR T therapy need their primary care partner present during and after treatment to monitor side effects such as fever or cytokine release syndrome (CRS). Understanding what to watch for and reporting these symptoms to the healthcare team is essential.
For patients receiving intensive treatments, having a support care team is not just recommended—it’s a requirement for FDA approval.
Why a Team Strategy is Essential
A primary care partner plays a vital role, serving as the “quarterback” of the support care team. However, they are only human, and backup is crucial. This is where the team strategy comes in.
Establishing a support network is key to managing the demands of caregiving. Family, friends, and professionals can help with daily tasks, while the medical team provides expert guidance.
A support team can assist with:
- Covering for the primary care partner when they are unavailable
- Running errands and picking up prescriptions
- Preparing meals or ensuring food is available
- Assisting with household chores
- Providing transportation to medical appointments
- Offering emotional and physical support to the patient
The primary care partner and the broader support network work together to ensure the patient receives the best care possible.
The Bottom Line
Providing the best care for a myeloma patient requires a well-organized approach. A team strategy, led by the primary care partner, ensures that the patient receives the care and support they need while maintaining long-term survival and quality of life.
By working together, caregivers and support teams can help manage side effects and improve outcomes for both patients and caregivers alike.
