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Becoming a caregiver is a major life change, as dramatic as “when you brought your baby home,” says Leigh Ann Stevenson of Richmond, Va., who cared for her father.
DaKishia Reid, who cares for a child with complex medical needs in Winston-Salem, N.C., advises new caregivers not to try and act like not much has changed. “Reach for connection, open up,” Reid writes. “The biggest threat is isolation, and it is a killer. Sometimes, I will be so stressed out with all of the appointments and therapies and medications and scheduling … and then trying to perform normalcy for others, too? Share your normal. It IS normal,” she says.
Stevenson and Reid are two of nearly 600 who wrote to us when NPR asked family caregivers to share their stories. Reporter Kat McGowan compiled their advice along with other resources into this survival guide for caregivers, with illustrations by Connie Hanzhang Jin. You can explore topics like how to navigate the medical system, how to ask for help, and self-care.
Caregivers say advocating for your person and coordinating their health care is a steep learning curve. “Be prepared to spend ridiculous amounts of time navigating all things health care. You can’t expect that providers are all communicating with each other, and you ultimately end up being their care coordinator,” writes Amanda Taisey of Buxton, Maine, who’s caring for a mother with multiple health challenges.
Write everything down, says Michelle Sansil, who cares for her disabled mom in Kingswood, Tex. “Keep one notebook for every conversation with doctors, questions for medical staff, caseworkers, medication changes, medical appointments, onset of new symptoms, etc,” Sansil suggests. Other caregivers brought up the importance of dressing neatly to command the respect of medical professionals, and building relationships with doctors by connecting with them “as human beings, not gods or magicians or auto mechanics.”
The number one piece of advice we got from and for caregivers was “don’t go it alone.” Find out which friends and family are able to help and how, and build a support network, says Tarry Hum of Hastings-on-Hudson, NY, who cares for her husband with Alzheimer’s disease. “Pay for expertise at every step if you are able,” recommends Reid Porter of Washington, D.C., caregiver to his mother. “Find an elder relative you trust and appreciate, not necessarily to coach you, simply to affirm you and listen to you,” he writes.
Find more hard-won advice in our caregiver survival guide.
Are you a caregiver for an adult? Share your story with NPR for our ongoing series “What it Takes.”
Plus: Why is caregiving so hard in America? The answers emerge in a new film
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Health care is one of the reasons I decided to move to Boston. Here you have the luxury of being able to choose from some of the nation’s most prestigious teaching hospitals and their physicians' networks. There’s also an abundance of options when it comes to legal cannabis. You can find 8 dispensaries just within a two-mile radius of Boston Childrens’, Brigham and Women’s and Dana-Farber. Proximity notwithstanding, you’re not going to be offered cannabis as a treatment option at any of those hospitals.
Millions of people in the U.S. use cannabis for medical reasons, often to help with chronic pain. New research from Europe is offering some of the strongest evidence yet that cannabis can help with back pain – a leading cause of disability, as NPR's Will Stone reports.
The studies looked at a cannabis oil tincture containing the psychoactive compound THC, as well as CBD and other natural compounds in the plant. The first study compared the tincture to a placebo. Those in the cannabis group had about a 30% drop in pain after 12 weeks, while those who took the placebo had around a 20% reduction.
The second study compared the same cannabis tincture to opioid painkillers. Patients in the cannabis group reported fewer gastrointestinal side effects. (Opioids are famously constipating). Participants who took cannabis also said it offered better pain relief over 6 months of treatment.
The product they tested is a proprietary full-spectrum cannabis oil made by the German company that funded the trials. It’s unlikely that tincture will be available in the United States any time soon. But the findings from the European trials are "remarkable," according to Kevin Boehnke, an anesthesiologist at the University of Michigan who studies cannabis and chronic pain. He says the research suggests it may be worth trying a similar cannabis product instead of opioids for back pain.
Proponents of cannabis for pain point out that it’s much safer than opioids, which come with a dangerous risk of addiction and overdose. Nevertheless, those on opioids and cannabis did experience about the same rate of side effects in the study, and about 13% ultimately dropped out.
Boehnke says like other pain medications, cannabis is no silver bullet. "It's often like, 'oh, I got a little benefit here and a little there.'” In other words, for many patients, cannabis is just one piece of the puzzle.
Learn more about the new research and experiences people with back pain are having with cannabis.
Plus: How safe is your weed? Patchy regulations may leave contaminants in the weed supply |
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Stefania Pelfini la Waziya/Moment RF/Getty Images |
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Grab the goggles. Pickleball eye injuries are on the rise
Antidepressant side effects differ greatly depending on the drug, study finds
Can collagen supplements improve your skin? Here's what the research shows
Mental exercise can reverse a brain change linked to aging, study finds |
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All our best,
Andrea Muraskin and your NPR Health editors |
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