Multiple Myeloma Symposium: A Caregiver's Perspective | Dana-Farber Cancer Institute
Multiple Myeloma: A Guide for Caregivers
Get tips for caring for someone with multiple myeloma.
By Michelle Vellucci
Medically Reviewed by Kevin O. Hwang, MD, MPH
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When it comes to caring for someone with multiple myeloma, sometimes less is more. With early detection and advances in treatment allowing patients to function fairly normally, experts say the trick is learning how to help without making the person feel helpless.
"In general, we like to be in charge of ourselves," says Katherine Puckett, PhD, director of the Mind-Body Medicine Program for the Cancer Treatment Centers of America. "When a person gets a cancer diagnosis, some of that control is taken away. So, it's important to let the patient be in charge of things as much as possible."
It's a philosophy by which Cindy Rittenberg, an oncology clinical nurse specialist whose husband was diagnosed with multiple myeloma eight years ago, tries to live. "Even if I know the answer to something, I'll say, 'Why don't you call the doctor?' … Because that gives him more control," she explains.
According to Rittenberg, "a caregiver is like a buddy" who helps the patient work through the issues associated with multiple myeloma, from symptom management to coming to terms with the diagnosis of an incurable disease. Below are some tips for providing support, both physically and emotionally.
Physical Care for Multiple Myeloma
Multiple myeloma patients can experience medical problems associated with both the disease and its treatment. While some myeloma symptoms (such as anemia) can require hospital treatments (such as a blood transfusion), there are also a number of ways that caregivers can offer comfort at home. There are many problems associated with multiple myeloma for which a caregiver can lend supportive care, in addition to the medical care directed by healthcare providers. Here are a few of the most common problems and how a caregiver can help:
Cause:A decrease in the number and activity of red blood cell-producing cells
Symptoms: Fatigue and weakness
Caregiver Rx: Encourage naps and reduce physical activity as needed
Cause:Myeloma cells activate osteoclast cells, cells (which destroy bone) and block osteoblast cells (which normally repair damaged bone).
Symptoms:Bone pain, swelling, fractures
Caregiver Rx:Pain medication as needed (e.g., acetaminophen, ibuprofen, etc.)
Reduced immune system function
Cause:Myeloma cells block production of antibodies needed to fight infection
Symptoms:Susceptibility to and delayed recovery from infection
Caregiver Rx:Frequent hand-washing, limited contact with sick people, regular sleep
Causes:Peripheral neuropathy is one of the most common — and most debilitating — side effects associated with several classes of myeloma drugs, including including thalidomide (Thalomid), and bortezomib (Velcade)
Symptoms:A tingling in the fingers and toes that can progress to a sharp pain in the hands and feet ("pins and needles" sensation)
Caregiver Rx:Avoid cramped positions and avoid placing pressure on "pressure" points. Give folate and vitamin B12 supplements if levels are low.
Caregiver Rx:"The 'joke' is that dexamethasone is tougher on the caregiver than the patient," says Anne Quinn Young, MPH, program director of the Multiple Myeloma Research Foundation. "People can become truly different and perhaps unpredictable. Some may be cleaning and cooking at 3 a.m. because they can't sit still." Quinn Young recommends making adjustments, like allowing for daytime naps, when the patient has to undergo a dexamethasone regimen.
Caregiver Rx:Baby aspirin
Caregiver Rx:Stool softener or laxative
There are also general strategies that the caregiver can encourage the patient to adopt: stay active, as tolerated, to maintain bone strength; drink fluids to prevent dehydration and kidney damage; and eat a balanced diet.
Emotional Issues of Multiple Myeloma
A multiple myeloma diagnosis can be a huge emotional burden. You can help lighten the load without being heavy handed.
Just be there.
"Often, what a patient wants is somebody to just sit with them," says Dr. Puckett. "Caregivers might think, 'I'm useless, I'm not doing anything.' But that kind of loving presence can be very powerful."
Be open but don't force discussion.
"There are a lot of emotions that go along with any serious illness. And sometimes people can openly talk with each other about it and sometimes they can't," Puckett says.
Understand that it's OK to be blue.
"People see their loved ones crying and think it's a bad sign. But crying can be a healthy release," Puckett explains. "Don't try to shut off their feelings."
Keep things as normal as possible.
Rittenberg and her husband continue to play tennis, even while he was undergoing treatment. "There comes a time when you feel like all you do is go to doctors," she says. "You have to balance it out with what you would do normally."
Care for the Multiple Myeloma Caregiver
Caregivers often become so wrapped up in the patients' needs that they neglect their own. According to the National Family Caregivers Association (NFCA), those who provide care 36 hours or more a week are more likely than non-caregivers to have symptoms of depression or anxiety. With this in mind, it's important to take time to care for yourself.
- Make your own health a priority.Keep all your medical and dental appointments, get enough rest, exercise regularly, and eat properly.
- Ask for help and take time for yourself."Nobody can be a family caregiver by themselves," says NFCA communications director Deborah Halpern. "Reach out to other family members, friends, county health programs, or spiritual organizations. There are countless ways to seek help."
- Be on the lookout for signs of burnout.If you feel tired, angry, depressed, or anxious for more than two weeks, seek help from a social worker, psychologist, psychiatrist, or primary care provider.
In the end, Halpern says it's a caregiver's "fundamental responsibility" to care for himself or herself.
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