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Caregivers, Chronically Ill Under More Stress

More Likely to engage in unhealthy behaviors to alleviate stress

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Rosanne Skirble

Americans are under considerable stress, according to a new survey by the American Psychological Association.

Nearly half of the respondents reported an increase in stress over the last five years. 

While money, work and the economy were cited as the major causes, stress levels were particularly acute among people with chronic diseases or those caring for aging or chronically ill family members.

Caregivers report higher levels of stress, poorer health and a greater tendency to engage in unhealthy behaviors to alleviate their stress than the general public.

When Jillian Downs was pregnant she got some bad news. Her baby had cystic fibrosis, a genetic disease that causes sticky thick mucus to build up in the lungs and create life-threating infections. It also complicates the digestive system making it more difficult for the body to absorb nutrients and food.

Life expectation at the time was 32, Downs' age.

Now, seven years later her daughter Ava begins her day in a big stuffed chair in the living room. She buckles up a special electric vest, that gently inflates and deflates. The pressure works loose any mucus in her lungs. Ava does the vest therapy twice a day, every day.

Ava Downs’ twice-a-day therapy involves a vest that vibrates her chest to shake sticky mucus from her lungs.
Ava Downs’ twice-a-day therapy involves a vest that vibrates her chest to shake sticky mucus from her lungs.

Downs says it has become a routine, as have other daily prescribed medications such as inhalants and dozens of pills including enzyme capsules before every meal and snack. “This is what we know. This is what she knows."

But there’s a whole list of other concerns, says Ava's father Philip, “We need to pay attention to her diet, her weight, her hydration, monitor her vitamin D levels and extra vitamins.”

Caring for loved one

Jillian and Philip Downs are among millions of caregivers in the United States, who manage children with special needs, or aging or chronically ill family members. And that number is likely to grow as the number of older Americans is expected to double by 2030, according to the U.S. Department of Health and Human Services.

For Suzanne Mintz, caregiving is her whole life. “I have it in my day job and I have it at home.”

Mintz is president of the National Family Caregivers Association, an advocacy and support organization she founded not long after her husband Steven was diagnosed with multiple sclerosis in the early 1990s.

Her life didn’t change much in the beginning, but over the years and her husband’s condition worsened, she had to do more. Now she helps him get out of bed, shower, dress, eat and move in and out of a wheel chair. Mintz says it hasn’t been easy on their marriage.

“I haven’t always dealt with it. I’ve had serious depression several times. But I think we finally learned how to deal with each other.”

Steven Mintz, diagnosed with multiple sclerosis more than 20 years ago, increasingly depends on his wife, Suzanne, for his daily needs.
Steven Mintz, diagnosed with multiple sclerosis more than 20 years ago, increasingly depends on his wife, Suzanne, for his daily needs.

Mintz says things improved once she realized that asking for help wasn’t a sign of weakness, but simply recognition that she couldn’t do everything on her own. “I just think that it’s absolutely important to get help. Some people have a hard time asking for it, I understand that, but sooner or later you have to for multiple reasons.”

Steven Mintz adds, that the other side of it has been accepting help, “which hasn’t been easy.”

Support Network

They both agree that it is important to deal directly with one’s stress, an idea underscored by a panel of experts at the release of the annual American Psychological Association Stress in America survey.

One of the experts was Katherine Nordal, who specializes in the treatment of stress-related disorders says caregivers do better when they are plugged into a support system.

“The caregiver group seems to be much, much better when they are plugged into some sort of a support system. They demonstrate less isolation, less loneliness, better coping strategies, less depression, less irritability and less risk of chronic disease when they are plugged into those family and friends and other sorts of community-based support systems.”

Communication Relieves Stress

For Jillian and Philip Downs, whose daughter has cystic fibrosis, say that support comes from a network of cystic fibrosis care centers and local groups that raise funds for a cure. But perhaps most importantly, they support each other.

Philip says they haven’t figured out the magic formula for managing stress, but that communication is a big part of it. We have, I think, a common sense approach where my happiness is dependent on her happiness.

So if she’s stressed out, I know that I am not going to be at my best. So we need to communicate that and try to support each other the best way we can.

Jillian says they are lucky. “We don’t disagree about what we need to do for Ava and ourselves.”

With Ava’s chronic illness and, now, the prospect of a new baby on the way, the Downs know their stresses are far from over. But they are confident they will make it through.

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