In the United States there are roughly 120,000 people living with or in remission from myeloma. This means there are the same amount of people providing support and care for one with myeloma. Focusing care on another in addition to meeting your own personal needs, work and other responsibilities can often and sometimes quickly become overwhelming and stressful.
The Mayo Clinic has identified signs of caregiver stress which can include: feeling overwhelmed or constantly worried, often feeling tired, becoming easily irritated or angry, losing interest in activities you used to enjoy, feeling sad or having frequent headaches, bodily pain or physical problems.
If you find yourself experiencing any of these signs of stress consider taking time to address your own health and wellness. It is important for caregivers to care for themselves.
Second, consider working with a Myeloma Coach who is also a caregiver and can offer personal, shared experience and resources. Many find it helpful to talk to another caregiver who can relate. Two Myeloma Coach caregivers recently offered insight to what helps them maintain perspective, balance and care for themselves while supporting their loved one with myeloma.
I think the most important thing a caregiver can do to reduce stress is to accept the limitations of their role. Too often, as caregivers, we become over responsible. Our loved one, whether a parent or a spouse, is still a self-responsible autonomous person. If you let yourself be frustrated when they decide to “eat dessert first,” or refuse reasonable precautions, or seem unmotivated to do what is in their best interest, you will not only be stressed out, but also you will lose any positive parts of your relationship. It’s a difficult balancing act. When I say to my husband, “How long since you’ve been out of that chair?” Sometimes he gets up and moves around. Sometimes he says “Don’t nag me.” Then I say (pleasantly), I’m not nagging. I’m reminding.” Negotiate with the patient what kind of help and reminders they would like from you. Sometimes a chart that the patient keeps is a big help. My husband has one where he charts his fluid intake and daily weights. However, he declines to have an activity/ exercise chart.
As a home care nurse for twenty years, I had to do my best for patients who said, “I’d rather die than give up ice cream.” Or who turned off their oxygen to smoke a cigarette. It’s harder when it’s someone you love and don’t want to lose. I think it comes down to saying the prayer of St. Francis: "Lord, help me to change the things I can, accept the things I can’t change, and give me the wisdom to know the difference.” Good honest communication is key and will reduce your frustration tremendously. - Nancy
Caregiving isn’t easy some days --- especially on those high-Dex days. This past year has been a particularly tough one when we also had to deal with a pandemic and all the restrictions and safety precautions we needed to follow for our own health as well as the health of those in our care. This has to be particularly challenging for anyone with a newly diagnosed loved one or caregivers of recent stem cell transplant recipients.
Some things that have helped me avoid getting burned out as a caregiver are:
- Get outside (weather permitting) -- go for a walk, run, bike ride, garden, or just a break sitting outside and breathing in the fresh air.
- It is okay to take a mental break from multiple myeloma! This is important especially early on when people often think it HAS to be multiple myeloma 24/7. Your loved one has a cancer that really is more like a long-term chronic illness --- making this a marathon, not a sprint. You cannot read everything written, no matter how much you try, in the first months and understand it. Get a multiple myeloma specialist doctor on your team – and trust that he/she knows the best first steps – and then read and get up to speed over time. Some days your brain (and heart) will need a mental break, and it is okay to take a mental break. Watch/read frivolous, “brain-dead” tv/movies or books/magazines or enjoy a hobby --- do something you enjoyed pre-diagnosis.
- Do not let your own health care slide. Make the appointments for your annual health examinations and take care of yourself as well. At first there will be so many appointments for the person you are caring for, but eventually you will get into a routine. Don’t neglect your health which can lead to your own issues --- and also resentment. It is not fair to be resentful, especially if you did not take the time to value your health as well.
- Know that self-care IS caring for your loved one. When traveling by plane, flight attendants always instruct us, “if oxygen masks are needed, put yours on first before you help those around you that need help.” Your health/sanity/well-being WILL IMPACT your ability to care for others.
- Understand that social media is not generally accurate media. There are MANY people who are THRIVING with multiple myeloma ---they are out enjoying and living life and are often NOT on the multiple myeloma social media pages/websites/blogs as much. People who are having a hard time or have questions/concerns with the disease or medications, tend to be the ones who spend more time on the sites, so consequently we get a skewed image of “life with multiple myeloma” if we think they represent everyone. (This is an over simplification, but if you find yourself reading the posts and getting depressed, taking a break is good and realizing the people posting represent only a small fraction of those with the disease.)
- NEVER read the websites/blogs/social media posts at bedtime unless you want nightmares.
- It is okay to cry – and it is okay to laugh. For lack of a better word, some days just suck. It is okay to be sad, and angry, on those days. Cancer didn’t just impact your loved one, it impacted you as well. Equally important, some days can be good – and even though your loved one has cancer, it is okay to have good days and laugh and enjoy them. You don’t have to be gloom and doom all the time, and no one expects you to be Little Miss/Mister Sunshine 24/7 either. It is okay to feel what you feel.” - Diane
Personalized support is available to all myeloma caregivers through the HealthTree Foundation. The Myeloma Coach program offers personalized one-on-one support from a Coach who is also a caregiver. You can choose the Coach that is the best fit for you on our website. You can also find support, education and resources by attending our Myeloma Crowd Community Events Caregiver Chapter. This group meets monthly sharing new information and resources.
about the author
Rozalynn Hite is the Myeloma Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.