When someone develops a chronic disease, they often need ongoing care, sometimes around the clock. Be it cancer, neurological diseases, chronic obstructive pulmonary disease or any other potentially debilitating condition, having someone available to help you stay on top of your health, your doctor’s appointments and everything else that you need to do every day may become critical.
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In many families, responsibility for caregiving falls to a spouse or other loved one. These individuals often don’t have formal health care training, and shouldering this burden can be a tall order. Dr. Philip Diaz, a pulmonary specialist at The Ohio State University Wexner Medical Center in Columbus, Ohio, says that caregiving is “an important role for these individuals. Because COPD can be a really long-term illness, it can be a long-term commitment to care for a COPD patient.” And because many COPD patients have comorbidities, or other diseases that require treatment, that can increase obligations on the caregiver even more.
A 2007 study in the journal Respiratory Medicine examined the burden placed on COPD caregivers and found that the median duration of the caregiving period was 7.2 years. That’s a long time to have to care for someone, especially when the intensity of that care will likely increase over time. COPD is a progressive disease that can be managed but not cured. It tends to get worse over time, and that can mean caregivers face an uphill battle as the disease progresses.
One of the most important things caregivers can do is to simply recognize that what they’re being asked to do is challenging. “Caregiver stress is one of the most stressful situations there is,” Diaz says. But there are ways to make caregiving a little easier, and that starts with understanding the disease and its treatments better.
Get Educated
As with so many things in life, knowledge can be power. “Studies have shown that caregivers are interested in educating themselves about the disease,” Diaz says. And when given the opportunity to do so, caregivers often go above and beyond and can actually find a deep sense of fulfillment in helping their loved one deal with this difficult disease, says Scott Marlow, a respiratory therapist at the Cleveland Clinic. “I’m kind of amazed at how different families are. Some are so dedicated to their spouses or family members. They immerse themselves in it so deeply.”
One area where caregivers might focus their efforts is to learn the best course of action to take when the patient experiences dyspnea, or breathlessness. It’s a common, obvious and scary symptom of COPD. “If someone starts to get breathless, they can panic,” Diaz says. Knowing how to manage the patient’s anxiety while alleviating the breathlessness can help the caregiver diffuse this situation that’s stressful for both the patient and the caregiver.
One way caregivers can help educate themselves is by attending support group meetings with the patients. Marlow says this can help caregivers learn that they’re not alone in caring for a loved one with COPD, and it may give them ideas for how to better care for their patient. “The pulmonary support group meets every month and it’s helpful for them to get together with other families and people and see what they’re doing or have different topic discussions,” he says.
These discussions can include things like how to make traveling easier and working through whether a couple can go on vacation together if one of the pair has COPD. Another common topic is oxygen tanks and the best ones that enable patients to go farther and be able to participate in more events with the rest of the family. How to conserve energy and simplify everyday tasks around the house is also a common discussion topic. Personal hygiene and how to best help a patient with severe COPD bathe regularly comes up sometimes. Marlow says when a patient can’t breathe, the act of taking a shower can become an endurance event, so caregivers sometimes discuss “how do you help, and how do you relieve those things when you can?” Caregivers who participate in these groups can learn what strategies have worked for other families with these and a host of other practical concerns.
Diaz says that it also may be helpful for caregivers to go to doctor’s appointments with the patient. That offers a chance to learn more about the specifics of the patient’s condition and treatment protocol and to ask any questions of the doctor that could help with carrying out that treatment at home.
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Take Care of Yourself First
Perhaps the most important thing that caregivers can do is make sure they stay healthy themselves. It’s even harder to care for someone else if you’re sick, too, and the constant stress and pressure of caring for someone with a severe, chronic condition can take its toll. “There’s some suggestion that even compared to cancer, for example, caregivers for COPD might have more needs for themselves partly because of the long-time course involved with taking care of a patient with that disease,” Diaz says. To combat this, he suggests that caregivers make time to exercise — yoga is a good option — or have another caregiver come give them a break routinely. “Those kinds of things are important for the caregiver, and will make them more attentive and less beaten down.”
Marlow tells the story of one patient’s caregiver who makes a point of going golfing with friends twice a week so he can get some exercise, maintain social connections and have a break from caring for his wife while someone else looks after her. These things all contribute to his staying healthy, so he can be there for his wife when she needs him. “It’s important for the family to make sure that [caregivers] stay healthy, that they keep active, that they eat healthy, that they get good rest,” Marlow says, adding that getting good sleep can be a challenge for both the patient and the caregiver. “Some people have to wake up in the middle of the night for breathing treatments. And if they’re short of breath or using a BiPAP [a ventilator that helps patients breathe while asleep] at night, it’s difficult for the caregiver to get good rest. If the patient needs something in the middle of the night, how does the caregiver get good rest?”
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The Lung Institute also notes that part of taking care of yourself means not letting this role consume your entire life. “You aren’t just a COPD caregiver. You are a smart, incredibly strong, compassionate and giving person with your own life goals and dreams,” the institute’s website reports. The institute recommends picking up a hobby or pursuing an interest of your own separate from the person you’re caring for as a means of keeping you healthier mentally and relieving the stress of caring for the patient.
In caregiving, the bottom line is to help yourself first, then your patient, sort of like how you’d cope with the sudden loss of altitude in an airplane that can trigger oxygen masks to drop down, Marlow says. “If you’re on a plane and the oxygen mask drops down, what are you supposed to do? You’re supposed to put on your oxygen mask first and then help the person next to you.”
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What Can COPD Caregivers Do to Help Themselves and Their Loved Ones? originally appeared on usnews.com
