Caregiver self-care and financial support
As a caregiver, you may often ignore your well-being when you focus on the needs of your loved one. However, caring for yourself is important, as it energizes you to provide quality care. In this caregiver series, we list some strategies to cope with physical and emotional stresses you may experience. In addition, some families may face financial challenges due to loss of income and growing medical expenses. Here, we have provided some resources that you may find useful.
Eating healthy foods at regular intervals and exercising can decrease anxiety, boost self-esteem, and help you sleep better. Consult a nutritionist and create a meal plan for yourself. To stay motivated, choose a physical activity that you enjoy. If you cannot find time for exercising alone, you could do it together with your loved one―such as walking.
The Multiple Myeloma Research Foundation (MMRF) has events to boost your fitness level and also connect with other caregivers, patients, and the multiple myeloma community. Events include the following:
- 5K Walk/Run―this series is held annually in 13 cities
- Endurance Events―marathon, triathlon, cycling, and hiking
- Moving Mountains for Multiple Myeloma―trekking mountains like Mount Kilimanjaro, Mount Fuji, Mount Everest, and Peru’s Machu Picchu, as well as the Grand Canyon
- Your Own Race—create your own event, like riding a bike or hiking in your local community; the MMRF will provide fundraising support and online training plans
Acknowledge your feelings, and talk about them. You can talk with a trusted family member or friend, a local support group, or an online discussion group, like the MMRF’s CoMMunity Gateway. Connecting with others who have been in similar situations helps you realize that you are not in this alone.
Know your limitations (physical and emotional) and seek help from family and friends. Delegate responsibilities, and prepare a list of tasks that others could do for you. CareZone, CaringBridge, and Lotsa Helping Hands can help you rally a community of supporters, as well as coordinate tasks. Cleaning for a Reason offers free housecleaning to women in the United States and Canada who are undergoing treatment for any type of cancer.
Educate yourself about the disease, and write down questions before you visit your doctor. The questions could be about the disease, treatment options, emergency situations, clinical trials, or how to manage side effects. You will be better prepared to understand what your doctor says—and to make decisions.
Maintaining a “new normal”
Staying close with your loved one doesn’t mean that you can’t set aside time for yourself and take a break. Remind yourself that you are doing your best, and you do not need to feel guilty about pursuing your hobbies or going out with a friend. You could also plan activities together, as there are various organizations that help families living with cancer enjoy vacations and outdoor adventures. Some organizations include Deliver the Dream, Dream Foundation, Epic Experience, Reeling and Healing Midwest, and United Special Sportsman Alliance.
Look for signs of burnout
Emotional and physical signs of caregiver stress include weight loss or gain, trouble sleeping, and feeling depressed, guilty, or inadequate. If you experience these for more than 2 weeks, talk to your doctor or a social worker.
Financial assistance for multiple myeloma patients
- The Leukemia & Lymphoma Society has programs for co-pay assistance, travel, and lodging
- Patient assistance programs, sponsored by major pharmaceutical manufacturers, provide free or reduced-cost drugs. You can find this information from websites of organizations such as NeedyMeds, RxAssist, Partnership for Prescription Assistance, RxHope, and Together Rx Access
- The National Foundation for Transplants provides fundraising assistance for transplant patients
- Be The Match, operated by the National Marrow Donor Program, serves patients in need of an allogeneic bone marrow transplant and provides financial assistance for co-payments for prescriptions and clinic visits, unrelated donor searches, and out-of-pocket expenses, such as temporary housing, food, and transportation following a transplant
- CancerCare provides financial assistance for co-payments and transportation
- The HealthWell Foundation has allied with the MMRF to help Medicare patients with co-payment or premium costs
- National Institutes of Health provides free treatment, evaluation, and transportation to patients eligible for clinical trials at NIH
- Patient Access Network Foundation has an alliance with the MMRF and provides financial assistance for co-payments and out-of-pocket costs associated with treatment
- Patient Services, Inc provides assistance with insurance premiums and co-payments
- Patient Advocate Foundation provides financial aid for transportation
For more information, visit the following websites: