Caring for the Caregiver: A Holistic Approach
Why do we say care partner? The IMF sees caregivers, or care partners, as a patient's teammate throughout the myeloma journey. Care partners walk alongside their loved ones and help them live well with myeloma.
The words "You have cancer" are not just devastating for the patients who experience this, but also for their loved ones. As a caregiver, or care partner, you are also a survivor. You are thrust into a world where you need to:
- Cope with health-related changes with your loved one who has myeloma
- Educate yourself about the complexities of multiple myeloma
- Deal with insurance-related issues
- Make important financial decisions
- Plan for and assist with the patient’s needs on a day-to-day while managing your own, both as a care partner and outside of it
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 further clarification. For one-to-one connection, consider joining a support group. These groups invite care partners to join their meetings, and some may even have special breakout sessions for care partners.
Self-Care for the Care Partner
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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:
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Caring Through the Journey
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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:
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Talking with Your Loved Ones
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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.
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Managing the Cost of Care
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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
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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.
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Other Organizations/Resources
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The IMF has culled the best information from external resources and peer organizations to help guide you through your caregiving journey:
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Thank You to Our Sponsors
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Janssen Oncology of Johnson & Johnson Pharmeceutical Companies |
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Pfizer |