(BPT) - Caring for a loved one with a chronic illness is something millions of Americans do every day. Whether it is a parent, spouse, extended family member or friend, the stress of caring for another adult can take a toll.

"I have to do absolutely everything for her," explains Anthony Cowels, whose 71-year-old wife, Florence, was diagnosed with multiple sclerosis in 1986. As he watched her disease progress, his caregiver responsibilities grew. What's more, for some of the years Cowels also cared for his elderly parents, compounding his responsibilities.

"It has been a long journey of caregiving," says Cowels, 70. "I try not to let it overwhelm me. I always look for ways to do better." Cowels learned to care for both himself and his wife better through useful tools, education and friendship and by joining a caregiver support group. He says he can "interact with others who identify with my situation.”

Family caregiving: A growing trend

Cowels represents a growing number of Americans who care for older or aging loved ones. About 41 million family caregivers in the United States provided an estimated 34 billion hours of care to an adult with limitations in daily activities in 2017, notes the AARP report Valuing the Invaluable: 2019 Update. What's more, as the population ages, caregiving demands are increasing while the pool of potential caregivers is decreasing.

As the Valuing report states, "Americans will have more older relatives or close friends to potentially care for than children in about 15 years. The U.S. Census Bureau projects that, by the year 2035, adults ages 65 and older will outnumber children under the age of 18 for the first time in U.S. history. This fundamental demographic shift is the result of the aging of the U.S. population, increasing longevity, and a declining birth rate. "

Caring for yourself

In addition to helping with self-care activities like bathing, dressing and going to the bathroom, family caregivers today often perform complex medical tasks, including wound care, giving injections and handling medical equipment. The tasks that were once provided in hospitals and health care clinics are increasingly the responsibility of family and friends, who are often given little training or support.

While many family caregivers often report positive feelings in their role such as a sense of purpose or connection with their loved one, it often comes with feelings of being overwhelmed. Exhaustion, worry, loneliness and financial stress are common challenges caregivers face. If you also work a full-time job, it can be even more difficult to balance your needs and responsibilities.

While you may not achieve perfect balance, it is important to prioritize your physical and mental wellbeing, so you can be there for the person you care for. These first steps can help you find some balance as you navigate your caregiver journey:

• Join a support group. Ask your health care provider about local options. Community centers are another good resource. If you live in a remote area or have difficulties commuting, online support groups are another useful way to connect with others in similar situations.
• Make time for yourself. When you care for another person and have your own life demands, it can feel as though there is little time left in the day for yourself. Even if it is just 15 minutes, make time to do something you enjoy, such as walking or reading.
• Don't be afraid to ask for help. No one person can do it all. It takes a team to care for someone, especially those with complex medical conditions. You can start by asking your provider about local health care resources and reach out to family and friends for assistance.

It is important for family caregivers to stay mentally and physically healthy so they can provide the best care possible to the growing number of people who need support. For helpful tips and caregiver resources, visit www.aarp.org/caregiving.

(BPT) - Having a friend or loved one with a chronic and progressive condition teaches you many things: patience, understanding and adapting to lifestyle changes after diagnosis. But for Mary, supporting her friend, Barbara, living with a serious lung condition called nontuberculous mycobacterial (NTM) lung disease taught her the importance of listening.

While taking weekly walks together, Mary first noticed Barbara was experiencing respiratory symptoms, such as coughing fits and getting tired very easily. Barbara’s symptoms continued for two years, and Mary later found out that Barbara was living with NTM lung disease — a serious and progressive condition caused by bacteria that can lead to lung damage and respiratory symptoms.

From speaking with Barbara, she realized that while Barbara was relieved to have an explanation for her symptoms, she also felt overwhelmed and scared by her new diagnosis.

Mary recalls, “As her friend, I was upset that she had to face this health issue and wanted to know how I could help. I realized the best way I could show Barbara my support was to ‘walk with her’ and let her know she wasn’t alone.”

About NTM Lung Disease

NTM bacteria are common in the environment and can be found in tap water, showerheads, steam from hot tubs, and soil from parks and gardens. While everyone comes into contact with NTM bacteria during their daily lives, most people do not develop NTM lung disease because their lungs are healthy enough to clear the bacteria. However, people with a history of lung conditions, like bronchiectasis, chronic obstructive pulmonary disease (COPD) or asthma, are more likely to develop NTM lung disease because the damage from these conditions can make it easier for NTM to infect their lungs.

NTM lung disease is considered rare, but cases are growing 8 percent each year. In 2018, it is estimated that 75,000–105,000 patients were diagnosed with NTM lung disease in the U.S. Since awareness of NTM lung disease is limited and the symptoms of NTM lung disease, like chronic coughing, feeling tired often and shortness of breath, are similar to other lung conditions, many people who have it may not even know it for months or sometimes years.

Providing Encouragement and Understanding

Following an NTM lung disease diagnosis, patients may have a hard time coping with the impact the disease can have on their lifestyle. Emotional support from family and friends is crucial to help patients navigate these new challenges.

After learning about Barbara’s diagnosis, Mary encouraged her to speak about the tests she was undergoing and treatment she was taking as well as how she was feeling. Mary was also there to support Barbara through some of the lifestyle changes that she was making to help manage her condition — whether it was hearing about the adjustments she made when traveling or ways to help limit her exposure to NTM bacteria at home.

Mary also understood that keeping up weekly walks helped Barbara physically and emotionally. She made sure that they stuck to their routine and made adjustments whenever necessary, such as walking for shorter distances or slowing down their pace based on how Barbara was feeling.

“Barbara’s diagnosis made our friendship stronger because she knew she could confide in me and receive the support and reassurance she needed — even if that just meant listening,” Mary shares. “While everyone’s experience with NTM lung disease is different, sometimes knowing there is someone willing to listen to what you’re going through can make a world of difference.”

Staying Informed

Like many other loved ones of NTM lung disease patients, Mary had never heard about the condition before Barbara’s diagnosis. She let Barbara be her teacher and learned a lot about the condition through her experience. Today, she’s more informed about NTM lung disease and can be a better source of guidance and support for Barbara.

There are also several online patient resources available to learn more about NTM lung disease, such as the Voices of NTM Lung Disease eMagazine on AboutNTM.com, which provides information on living with and managing NTM lung disease through first-person stories from different members of the community, like Barbara and Mary. On AboutNTM.com, you can also access more information on how to join support groups to connect with others who have NTM lung disease, and how to sign up to receive helpful resources.

Sponsored by Insmed Incorporated.

Health Care Solutions for Rural Americans

(Family Features) Heart disease, cancer, unintentional injuries, chronic lower respiratory disease and stroke. These top five causes of death in the United States all have a higher incidence of death among rural residents and research points to lack of access to health care as a culprit.
Today, rural hospitals are closing at a rapid pace, expanding an already vast health care desert (defined as inhabited areas more than 60 minutes away from an acute care hospital) across the country.

According to the University of North Carolina’s Rural Health Research Program, since 2010, more than 105 of America’s 1,700 rural hospitals have closed. Additionally, a Navigant report found that 21% of rural hospitals are at high risk of closing unless their financial situations improve.

Every day, rural Americans find themselves farther from medical care.

Practical challenges facing patients

Fatal injuries and illnesses aside, rural residents face other practical concerns related to the health care in their communities.

• Doctors are more concentrated in urban areas, while there are shortages in rural communities. A shortage of doctors can mean less availability for appointments, difficulty capturing enough attention from a busy provider, longer distances to reach a physician and limited access to specialists.
• Statistically, rural residents tend to be older and need more frequent visits to their primary doctors and other specialists.
• Pregnant women have to travel even farther to deliver a baby, leading to an increased risk of complications at birth. Similarly, pre-natal and post-natal care are harder to access.
• Rural residents often enjoy more outdoor activities (such as hunting, hiking and riding ATVs) than urban residents and therefore are at a greater risk of injury that requires treatment at a trauma center.

Airborne answer

One solution to fill the gap in rural health care is air medical services, which transport patients to critical care facilities in minutes. With nearly 90% of patients transported living in rural areas, air ambulance services are an essential part of health care access in these communities.

However, just like rural hospitals, air ambulances are threatened as well. Medicare and Medicaid reimbursement rates have remained steady for decades, while operational costs required for air medical services have increased, creating a financially unsustainable situation. Some private insurers also refuse to cover air medical services or pay minimal costs, requiring patients to assume the balance.

How to take action

The challenges facing rural health care access may be significant, but rural residents can take individual actions to make a difference for themselves, their families and even their communities.

• Express support to elected officials. Rural residents can call or write letters to their senators and representatives and demand they keep local hospitals open and protect access to air medical services. Reaching members of Congress at their local offices may be more effective than contacting their federal offices.
• Support efforts to secure grants. Some universities have been given grants from the Health Resources & Services Administration, an agency of the U.S. Department of Health and Human Services, to create or expand community health initiatives and facilities in rural areas.
• Explore alternative sources of care. Many rural areas have community health workers who complete home visits to assist people with chronic diseases like diabetes and high blood pressure. Although their training is limited compared to that of a doctor or nurse, their service increases health care access and they’re able to spend more time with patients.
• Get educated about your care. One role of community health workers is teaching patients about how to manage their own medical needs. This education helps residents be proactive and preventative in their health care, which can reduce the need for hospitalizations in certain cases, such as learning how to properly manage diabetes.
• Make an emergency plan. For families who reside in a rural community, it’s a smart idea to have a plan in place for how to respond in the event a medical emergency. The plan should include information about the location of the closest hospital, emergency contact information in the community and other details necessary to gain emergency care.
• Consider remote access care. Another option for both rural and urban residents alike is telemedicine, which allows patients to connect with a doctor or nurse virtually using technology and without having to travel. The two-way communication can facilitate evaluation and treatment for minor conditions. The service is offered as a cost-saving incentive through some insurance plans, as well as private providers.

Protecting Patients Against the Unexpected

With increasing frequency, insurance companies are not covering the full cost of medical emergencies, leaving families with out-of-pocket expenses they didn’t expect.

If you need medical transport and a physician or first responder determines air evacuation is the best – or only – option to get you to care, you shouldn’t have to worry about the bill you’ll receive afterward. Many emergency service providers have support efforts in place to help you focus on recovery, not finances.

For example, many air medical companies provide patients access to their patient advocates, who work with the patient’s insurance provider to properly cover air medical transport, taking the patient out of the middle. This process can result in significantly lower costs for the patient, often amounting to just the usual copay and deductible.

Visit globalmedicalresponse.com/protect-patients to learn more about these services in your area.

Photos courtesy of Getty Images (doctor and man, woman speaking with doctor on computer)

SOURCE:
Global Medical Response