In the United States, there are roughly 65,000 people living with or in remission from AML. This means there are the same amount of people providing support and care for someone with AML. 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.
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 healthcare professional of 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.
Caregiving isn’t easy some days. This past year and a half has been particularly tough 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.
Personalized support is available to all AML caregivers through the HealthTree Foundation. Our caregiver Facebook group is here to provide support, education and resources specifically to caregivers of AML patients. We will be starting up a virtual caregiver support group soon as well. Join the Facebook group to be alerted when this program begins. This group will meet frequently to share new information and valuable resources specific to AML caregivers.
about the author
Rozalynn is the HealthTree Coach Director and wife of blood cancer patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.