Marriages begin with many dreams – for families, adventures, happiness – but those plans don't often include a chronic lung disease diagnosis. Twenty-one years ago, at the age of 55, Jim Nelson was told he had chronic obstructive pulmonary disease (COPD), and his wife, Mary, has been by his side ever since.
Together the Tucson, Arizona, couple have maneuvered lung disease – from Jim's irritation as he quit smoking and Mary noticing that her husband lagged behind during their hikes, to learning everything they possibly could about COPD. Mary has been Jim's primary caregiver since his diagnosis and, because the two shared an accounting business, she also assumed a greater share of the professional responsibilities. Five years ago, Jim had a double lung transplant and he is now COPD survivor. However, it was a long road, and at one point, it seemed as if Jim would lose his battle to COPD.
Over the years, they've learned quite a bit about the role of the caregiver and now they travel the country speaking to couples about caring for the caregiver. According to the Centers for Disease Control and Prevention, more than 34 million Americans are unpaid caregivers to an adult who is ill or has a disability, and more than half of caregivers say their own health has worsened due to caregiving.
"It's hard for a lot of people, especially as the disease progresses," Jim said. "As time goes on, the caregiver is going to take on more and more responsibility – the patient may not know what medication to take, can't take care of himself. It's not a pretty picture."
Jim and Mary have worked with the American Lung Association in Arizona to speak with loved ones of those living with COPD, lung cancer and other lung diseases. Below are tips the Nelsons have learned throughout their experience and shared with others caring for someone with a chronic illness.
It's OK to ask for help With a business and a sick husband, Mary's plate was full. Like most caregivers, she tried to assume more tasks at home and in the office while not letting Jim know she was struggling. This wasn't good for either of them, but they learned to work through it by keeping the lines of communication open. "As a caregiver, you need help and you need to not be afraid to ask for it," Mary said. This can mean hiring someone to shovel the snow or taking on fewer projects at work, Jim said. Caregivers can't do it all and they should acknowledge that up front.
Learn as much as you can It was imperative for Mary that they both learn as much as they could about COPD so they could consult with Jim's doctors to devise a care plan. They read books and websites and attended support groups. Having as much knowledge and resources as they could, Mary said, allowed them to create emergency strategies and know how to handle situations as they happened. "We both needed to find out about his disease, about how it would progress, about what we could do to help," she said. The best piece of advice they learned? Never ask the patient to hurry.
Things will change, but you can adapt Chronic illness brings major changes to the lives of both the patient and the caregiver. "To be a caregiver is almost like having to put a life on hold," Mary said. "You can make all the plans you want and if the patient isn't feeling well that day then you aren't going for that walk or movie like you planned. "You have to give up expectations," she said. "Flexibility allows you to handle the challenges better." Mary said remaining positive and checking her attitude have been crucial in managing the difficulties of having a husband living with COPD. "When someone is fighting just to take a breath, you have to think about what you can do."
Take care of yourself Jim knows that Wednesdays are Mary's time, when she volunteers with hospice. Mary enjoys her time at hospice and it's when she is able to rejuvenate, which in turn allows her to be a better caregiver. Also, to keep healthy with COPD, Jim needed to exercise daily, get plenty of sleep and eat nutritious meals, and Mary knows, she needed to do the same. Caregivers need to take care of themselves and make sure they are meeting their basic health needs and that they have healthy coping mechanisms. "There is guilt because the caregivers don't want to take care of themselves," Jim said. "But if they don't take care of themselves, they will burn out."
For more information about COPD and the role of the caregiver, visit Lung.org/copd. Jim and Mary will be speaking at the LUNG FORCE Expo in Phoenix on March 26. Learn more about Expos and attending one in your area at LUNGFORCE.org/expo.