Care partner resources
When you become a multiple myeloma (MM) care partner, you may find yourself in an unfamiliar position. It can be especially challenging if the person is your spouse, partner, or parent.
It may be one of the most fulfilling—and demanding—jobs out there. And it’s okay to ask for help.
Many care partners say that, looking back, they took too much on themselves. Or, they wish they had asked for help from friends or family sooner. Take an honest look at what you do and accept what you may not be able to do all on your own.
Honoring your word also means recognizing your limits.
Whatever your situation, it can be tough to balance caring for a loved one with other parts of your life, your career, your children, and even your own health.
Care partner resources
Starting the support conversation
You may have some reservations about telling someone you love that their life has changed and they need help managing their multiple myeloma (MM). You know they want to keep their independence, and the truth is you want the same. When you have the conversation, lead with empathy and support, but keep it simple and focused on their goals. Let them know that you want them to get the care they deserve, to have hope and to help them achieve better treatment outcomes.
Also, it’s important to have the conversation before the situation is too urgent. If you see MM signs and symptoms or sense that something is not quite the same, initiate the care conversation so they can see a doctor to determine what’s happening. If your loved one is not comfortable going to the doctor, remind them of their purpose and what they mean to you, and offer to go with them to help them feel more at ease.
Start the support conversation so you can share the responsibility and weight of managing MM with your loved one.
Care partner resources
Questions to ask a doctor
Downloads
When you’re helping a loved one through their health and multiple myeloma (MM) journey, there are several questions to keep track of—and they might be different from the questions they have in mind. Choosing what’s important can be difficult, but when choosing, it’s essential to have the right information and a full understanding of their situation.
Here are some questions you can bring up with their doctor:
MM education
How can I help them with learning about MM?
What kinds of signs and symptoms should I be looking out for?
How often should they get tested for MM?
Practical support
What preparation is needed for an MM appointment? How can I help?
What information do I need if they need help scheduling appointments?
Is a follow-up visit necessary? If so, what appointments should I attend with them?
Do you know an MM specialist you can refer us to if needed?
Are there any foods or lifestyle changes that I can help with?
Cost and coverage
Will their insurance cover the testing or treatment?
Are there any release forms we need to fill out before medical information can be shared with me?
Testing and medicine
What should we be looking out for? Will you call us with the test results?
What should we do next if something is abnormal?
How do we get a second opinion if we have concerns?
What’s the best way to communicate with the medical team moving forward if we have any more questions?
Support for your MM needs
Navigating our health journeys isn’t easy. Doing it together makes it possible.
Care partner resources
Navigating the health care system
Navigating the healthcare system is tough. Phone calls. Doctor visits. Medical records. Insurance coverage. Billing statements. Healthcare portal passwords. There are many moving parts to help manage your loved one’s health and multiple myeloma (MM) journey. It’s even possible that your healthcare system recently changed the location or access to services. All of these changes can make the process even more challenging. Know that you’re doing a great job, and we’re here to help. Your loved one’s MM treatment journey may also lead them to go from getting care from a community center to an academic center and back again.
Here are some steps you can take to help those you care for receive the health services they need:
Document interactions
Document interactions
Keep a journal of your interactions with doctors, other care team members, the medical office, pharmacy, and billing staff. Include the date, time, person, department, and content discussed.
Request medical record access
Request medical record access
As a care partner, you can request access to digital or physical copies of a medical record. This allows you to communicate with the doctor and care team on behalf of your loved one. This can give you access to review visit notes, check lab results, and schedule future appointments.
Express financial obstacles
Express financial obstacles
Openly express any financial barriers to medical care or medication recommendations. It is also important to know what their medical insurance covers. Their care team will be able to inform you or suggest medication assistance programs that can help.
Discuss a second opinion
Discuss a second opinion
If you don’t feel seen, heard, or have a connection with your doctor, ask for a second opinion from a doctor who might be a better fit for you. Some of the best recommendations come from family and friends. It’s important to be informed. Getting a second opinion is not a reflection on you or the doctor, it’s simply advocating for the care they need.
Care partner resources
Support as a care partner
Downloads
In your role as a care partner, you might need to decipher medical information, schedule appointments, settle financial concerns, and be an emotional support for the loved ones you care for in their health and multiple myeloma journeys.
It’s amazing how much you do for them.
Building your own support team: self-care tips for care partners
- Continue looking after your own health - Stay in contact with your own health providers and keep your appointments. It’s important to remember self-care so you can recharge
- Talk to a professional about your feelings - Speak with a counselor or oncology social worker to get tools to help you process the stress and worries of caring for someone
- Join a support group for care partners - You can find a safe space with people who are going through something similar and can sympathize with you
- Expand your team for daily support - Reach out to others in your circle to help you get your daily tasks done in your own life while you’re working on care partner responsibilities
Support yourself while supporting them
However, being a care partner can be tiring and challenging. It requires patience, empathy, kindness—and stamina! Taking care of yourself will allow you to be there for the person you love. Many strategies and resources are available to help you deal with stress and manage it all.
They may not always admit it or know how to express it, but they appreciate you. We know and understand that at times, you need help too.
Check to see if your doctor partners with Uber for travel support
This site is published by Janssen Biotech, Inc. The above links to third-party resources are provided as a service to our website visitors and may be helpful to them along their multiple myeloma journey. This site is not intended to provide medical advice. You should always talk to your doctor and healthcare team about any medical decisions and concerns.
Support for your MM needs
Navigating our health journeys isn’t easy. Doing it together makes it possible.