Americans in their 40s and older will remember the 1970s television sensation “WKRP in Cincinnati,” starring knockout blonde Loni Anderson.
Anderson’s stunning physique and enviable good looks, combined with the lovable character she played on the hit show, offered no insight into the stresses she was undergoing as a caregiver to her mother. By then, the young actress had already lost her father to chronic obstructive pulmonary disease (COPD), and now she was tending to the needs of her mother, who also suffered from the condition.
November marks National Family Caregivers Month, as well as National COPD Awareness Month. With 10,000 Americans turning 65 every day, we often think of family caregivers as those who tend to the needs of elderly parents.
“Most people my age are caring for their elderly parents, but for me it was when I was a younger person,” Anderson, 64, told Healthline. “My dad never got to see me blonde.”
According to 2011 U.S. Centers for Disease Control and Prevention data, about 6.3 percent of U.S. adults have COPD. Among those 65 and older, prevalence is 11.6 percent. Nearly 7 percent of women reported having the disease, compared to 5.2 percent of men.
For Most, Cigarettes Lead to COPD
COPD destroys the lungs. The disease is irreversible, and those who have it find it increasingly difficult to breathe. COPD is primarily caused by smoking, although a recent survey showed that 25 percent of people with COPD identify as “never smokers.” Other people develop the disease due to genetic defects or from environmental or occupational hazards, such as inhaling smoke or chemical fumes.
In the case of Anderson’s parents, both were heavy smokers. Her dad started at 14, her mom at 11, Anderson said. “It wasn’t until 1964 that cigarette packages said anything about them being dangerous. I grew up in a haze there was so much smoke around.”
Anderson said her father, who asked for (and received) a cigarette on his death bed, once told her he started because Humphrey Bogart smoked. She said her mother also smoked to the very end.
Even as a young girl, the signs were there that dad had a health problem, Anderson said. His coughing would wake her up each morning, as well as her sister. “We would joke that he is our alarm clock, and that it was time to get ready for school, not realizing the seriousness of it.”
Over time, his morning coughing went from lasting 15 minutes to more than an hour.
The biggest thing a person with COPD can do to live longer is to quit smoking immediately, said Dr. Sidney Braman of The Mount Sinai Hospital in New York City.
For caregivers, this can mean encouraging someone to quit smoking even before diagnosis. “Early warning signs include that chronic cough. It is a sign of chronic bronchitis and a sign that things aren’t going very well,” Braman said.
People with COPD can develop intense guilt around their smoking habit, Braman said. Anderson said her dad certainly did.
“Dad was apologizing all the time because he felt so guilty that he had done it to himself,” she said.
For years her dad tried to keep his illness secret. “They don’t want to tell you. They feel so guilty that they brought it on themselves, and they’re so sorry. You just have to be understanding and support them. As a caregiver, sometimes it’s overwhelming,” Anderson said.
Effective medications make the disease manageable, even if there is no cure, Braman emphasized. “It really is smoking, smoking, smoking. We’ve got to get people to stop smoking and going down the slippery slope with COPD. Quit smoking and a rapid decline slows down to a normal rate.”
Braman said most people with COPD want to quit. However, he said recent data shows that about 18 percent of people diagnosed with the disease continue to smoke. “One thing we’ve learned about smoking cessation is you keep trying and keep advising. If at first you don’t succeed try and try again,” he said.
For those who have friends and loved ones with a hacking cough that never seems to go away, encourage them to see a doctor to get tested for COPD, Braman said. It’s an inexpensive test that is as simple as blowing into a machine called a spirometer.
Caregivers Need to Keep Close Watch … Even on Mucous
By the time Anderson’s father turned 40, he had become less active.
Once an avid bowler and golfer, he began to cut back on both. “He continued to get short of breath, and he’d make excuses to his friends — jokes and excuses,” Anderson said. “When he’d go golfing, he’d ask me to come along and drive the golf cart. He’d say he brought me to show off ‘My beautiful daughter driving the golf cart.’ He made it fun, but we knew it wasn’t. Then he just quit the bowling league altogether.”
Bill Clark serves as director of community outreach for the COPD Foundation and lives with the disease himself. He told Healthline the most important thing someone diagnosed with COPD can do is remain active, and caregivers should do all they can to facilitate that.
“The caregiver cannot baby the person, that’s the worst thing they can do,” Clark said. “The worst thing for me as a patient is to sit and do nothing. I need to get up and I need to exercise. We don’t use as much oxygen when our muscles are well-toned.”
But at the same time, COPD caregivers need to remember the limitations patients live with. “If you looked at me you would not know unless I were walking up a flight of stairs and was winded. Caregivers have to walk a fine line.”
Clark suffers from a genetic form of COPD, but he admits he’s a former smoker, too. Like so many with COPD, he doesn’t always let on when he’s not feeling his best. “I don’t admit it when I’m sick, and very few patients do,” he said.
Keeping a close eye on the progression of the disease is vital for the caregiver, said Braman.
It may sound gross, but caring for someone with COPD even means getting a look now and then at the mucous they spit up, Clark said. “Mucous tells a story. If it’s dark yellow or green there’s an infection. And if treated early enough you can avoid hospitalization,” he said.
Sometimes people with COPD fall out of treatment, Braman told Healthline. “They begin to feel better and stop taking their medications, or they forget.”
Part of the reason Anderson is speaking out about her experience as a COPD caregiver is to promote a website created by the COPD Foundation, Caring.com, and Sunovion Pharmaceuticals called COPDTogether.com.
The site offers tools to help caregivers and people with COPD keep copious records of symptoms and disease progression. A downloadable app offers a way to note flare-ups, treatment effects, and shortness of breath. There also is a diary, caregiver guide, and other resources.
People with COPD often face other health problems that serve as additional barriers to care, such as depression, osteoporosis, and anemia. Many are on multiple medications, making careful coordination essential, Braman said.
Caregiving Means Making Tough Choices
Tom and Jenny O’Brien live in the suburbs of St. Louis, Missouri. Jenny has been Tom’s caregiver since his COPD diagnosis in 1986.
Although Tom smoked, he also worked in hazardous environments where he inhaled fumes, Jenny said. He quit smoking upon diagnosis.
Still, Tom continued to fail. In 1993, his lung collapsed. In spite of his downhill slide, Jenny did all she could to keep Tom active, from toting a scooter in the trunk when Tom could no longer walk to hauling heavy oxygen equipment that kept him as on-the-go as possible.
But in May 1999 came the call that changed Tom’s life. He received a double lung transplant.
“I’m able to do everything I could do previously, and I do mean everything,” Tom told Healthline, boasting that he saw his children’s marriage and the birth of his grandchildren.
“He looks 20 years younger,” added a doting Jenny.
Sometimes, however, it becomes necessary for a caregiver to encourage a loved one to consider palliative care. Palliative care is provided to people with chronic illnesses to help them decide how they would like their life to play out, said Dr. Ann O’Donnell, medical director of palliative and hospice care for Genesis Health System in Davenport, Iowa.
“Palliative care is the management of a chronic disease, and hospice is end of life care,” O’Donnell told Healthline. “They don’t necessarily go right after the other.”
She said many people with COPD are reluctant to seek palliative care because to them it’s just the first step toward hospice. But she said talking to a palliative care physician about goals and treatments for when the disease progresses can help ease a patient’s fears.
O’Donnell said it’s important to bring loved ones along when talking about palliative or hospice care. “Most people come to appointments by themselves,” she said. “It needs to be a group conversation.”
Nobody wants to talk about dying. But having a plan in place makes things easier on both the patient and the caregiver, O’Donnell said.
Caregiver Caution: Take Care of You, Too
The O’Briens said they got a lot of help from their son when Tom had his transplant. Anderson said she tried to keep a houseful of friends around to help.
Clark said it’s extremely important for caregivers to take care of themselves, too. “Have some normalcy and go out and see life, something other than constantly waiting for the ax to fall,” he said.
Bringing in a friend or relative to give yourself a break also offers an opportunity for someone who may not see the patient every day to notice any changes in their condition, Clark said.
Anderson said sometimes you’ve just got to do what you’ve got to do to take care of yourself and your family. She remembers getting calls from her mother in 1984 on the set of “Partners in Crime.” She co-starred in the Johnny Carson production with Lynda Carter of “Wonder Woman” fame.
“Mom had called crying for the third time before 7 a.m. I had curlers in my hair and was wearing fuzzy slippers, but I walked into the office and said ‘Fire me, sue me, but I’ve got to get on a plane,’” Anderson recalled. “They were fabulous, and sent a private plane. Of course not everyone is going to have Johnny Carson send a plane for them, but it’s OK to ask for help.”