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Caring for the Caregiver: A Holistic Approach

Caregiver = Care Partner

Why do we say care partner? The IMF sees caregivers as the patient's partner throughout the myeloma journey. Care partners walk alongside their loved one and help them live well with myeloma. The words "You have cancer" are devastating for the patient and their loved ones. The care partner, along with the patient, is thrust into an unfamiliar world of medical treatments, terminology, and appointments. The care partner is often needed to help the patient cope, even while trying to cope with health-related changes of their loved one who has myeloma. Commonly, the care partner takes on the role of:
 

  • Learning about the complexities of multiple myeloma and treatment
  • Managing schedules and daily tasks that were previously shared
  • Attending to insurance-related issues 
  • Making important financial decisions 
  • Planning for and assisting with the patient’s needs day-to-day while managing their own needs 

If this sounds overwhelming, it is. But the International Myeloma Foundation (IMF) is here for you! 

This is why the IMF has created this Care Partner section. We encourage you to explore its resources and reach out to our InfoLine team if you need more information. To become more connected with other care partners, become a member of the Care Partners-Only support group.

Self-Care for the Care Partner

Caregivers, or care partners, often feel overly taxed by their duties. Remember, once you board a plane, you are always advised to put on your oxygen mask first before assisting your loved ones. The same rule is true for care partners. Listed here are some resources that will help you 'catch your breath' in your role as a care partner:

Caring Through the Journey

Maybe you need help with household chores or cooking. Perhaps you need a better way to track your loved one's medical records. The following resources will help you on your care partner journey:

Talking with Your Loved Ones

Maybe you are a parent with young children or teens, or a spouse or partner who must share your myeloma diagnosis with your loved one. Talking about cancer is never easy, but it is always necessary. The following links provide options on how to share your diagnosis with your loved ones, as well as how you can steer through living with a disease together. 

Managing the Cost of Care

The picture of medical coverage for a patient varies on a case-by-case basis, and navigating the cost of care often falls in the hands of care partners. While some patients have private insurance, others are on state-administered plans. Some may be on COBRA plans from previous employers, or transitioning to the federal Medicare program. For some patients, the cost of myeloma drugs may require coverage assistance. Visit the following links to learn more:

Palliative Care

Palliative care may be needed at any time during treatment but is most often needed at the end stage of the disease. When a patient has tried and exhausted the full range of approved and experimental treatments available, and the myeloma has become refractory or resistant to treatment, it’s time to weigh in on the pros and cons of continuing versus stopping treatment. Each patient must make the decision on their own. 

 

Other Organizations/Resources

The IMF has culled the best information from external resources and peer organizations to help guide you through your caregiving journey: 

 

 

 

 

Myeloma Made Simple: Care Partners (Caregivers) Made Simple | What Is a Care Partner?

Discover the vital role of care partners in supporting individuals with myeloma. In this video, IMF Chief Medical Officer Dr. Joseph Mikhael is joined by IMF Vice President of Support Groups Robin Tuohy who is also a care partner to her spouse Michael. Together, they highlight the importance of care partners, explore their challenges and responsibilities, and provide valuable insights on how care partners can best support their loved ones.

 

Patient and Care Partner Podcasts
A Day in the Life - Terrence and Toni Green
A Day in the Life with Terrence and Toni Green
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A Day in the Life with Rebecca Zeiter
A Day in the Life with Rebecca Zeiter
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A day in the life of Adrienne and Chad Moore - podcast
A Day in the Life with Adrienne and Chad Moore
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