Making Multiple Myeloma a Family Affair
Have your siblings left you to care for a parent with multiple myeloma? Here are some tips to help you cope.
By Michelle Vellucci
Medically Reviewed by Kevin O. Hwang, MD, MPH
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When a parent falls ill, one of the children usually bears the brunt of the caretaking responsibilities. It's a story that Maya Hennessey of Illinois, a volunteer with the National Family Caregivers Association (NFCA), has heard many times before. She recalls an attorney who gave up a successful practice in Chicago to care for her ailing mother in New York because her four siblings refused to do it.
Far less extreme scenarios have the potential to destroy families. Even under the best circumstances, a parent's diagnosis with a serious disease like multiple myeloma can create major tension among adult siblings. "Whatever issues kids had when they were growing up tend to come up again in the midst of illness and crises," Hennessey explains.
If you're caring for a parent with multiple myeloma and get little or no assistance from your siblings, the good news is that there are steps you can take to defuse conflict and possibly even get a helping hand in the process.
Ask for help early and be clear about your needs.The amount of care your parent needs will vary depending on the stage and treatment course of the multiple myeloma. The earlier you reach out for help, the better the situation will be. "It's really important to be able to ask for help before you become desperate and more likely to be mean and nasty," says Donna Schempp, program director at the Family Caregiver Alliance. "And don't drop hints. Instead of, ‘Would you someday come and do this?' say, 'Would you be here from 10 to 12 on Saturday morning?' ”
Maintain open communication.Avoid resentment from far-flung siblings by keeping them in the loop via e-mail or a Web site. Send e-mails updating them on the progress of your mom's multiple myeloma treatment, or post updates after doctors’ visits "so they don't feel like they're being left out or that you're the keeper of everything," Schempp says. "The main caregiver does tend to get proprietary."
Hold a family conference.Holidays and other events can be stressful, but if handled properly, they can also be ideal opportunities to get siblings up to speed on your parent's multiple myeloma and to hash out related issues. Tell them well in advance that you'd like to set aside a specific time to talk. "It's so much easier to talk about it in person, and it's best to have advance notice so everyone has a chance to think about it and bring questions and papers or whatever the case may be," says NFCA communications director Deborah Halpern. "It's proactive, and it involves everybody."
Assign responsibilities based on ability.If siblings have been reluctant to help, it could be because they're uncomfortable doing what you've asked of them. "Give them assignments they can handle," Halpern suggests. "If they can't handle the emotional side of a multiple myeloma diagnosis, put them in charge of finances."
Those who live far away may be able to take care of tasks that can be done remotely, such as researching multiple myeloma services on the Internet. Every little bit helps. "Delegating things to the right person takes a load off the caregiver," Hennessey says. "Every phone call, trip to the doctor, and form they have to fill out has a weight in stress, and everything that gets delegated removes a little bit of that stress."
- Seek support elsewhere."You have to assess honestly whether your siblings are ever going to help you, because if they're not, then it makes no sense to go to a well that's dry,” Schempp says.
Video: Mom fights multiple myeloma
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