Each morning, 48-year-old Troy Prater starts his day by getting breakfast for his teenage triplets. On weekdays he checks homework and then hurries them off to school. Then it’s back home to take care of his mom, Ella, who suffers from Alzheimer’s disease. Life, Prater says, “is organized chaos.”
Prater is among the millions of Americans who have stepped up to do the right thing and take care of family members who can’t take care of themselves. Unfortunately, most caregivers are spread so thin that they don’t have time to take care of their own needs, NBC's Dr. Nancy Snyderman reports.
“Caregivers don’t go to the dentist; they don’t get mammograms or annual checkups,” says Melissa Gartenberg Livney, a clinical
psychologist with the PENN Memory Center at the Perelman School of Medicine at the University of Pennsylvania. “So they get sick.”
Even worse, Livney says, “there’s some evidence that this kind of stress can contribute to the onset of dementia" which is why she and others are trying to encourage caregivers to get help, to find ways to take breaks, and to make and keep their own doctors’ appointments.
How many people have stepped up to take care of a family member?
One survey found that nearly one third of American households had someone serving as an unpaid family caregiver. That adds up to almost 40 million households with a caregiver present, according to the 2009 survey conducted by the National Alliance for Caregiving in conjunction with the AARP.
Many of those caregivers are dealing with Alzheimer’s, which Livney says can be incredibly stressful.
"Alzheimer's disease is 10 or 15 years of slow and steady loss of the person you once knew," she says. "Caregivers often suffer in silence and feel guilty when they don't feel up to the work."
Currently, there are 5 million Americans who have been diagnosed with the disease, says Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association. “And we estimate that there are 15 million people caring for them.”
Unfortunately, the number of Alzheimer's patients is growing. The Alzheimer’s Association estimates that there will be 16 million Americans with the disease by mid-century if nothing changes. And that means there will be even more of us taking care of spouses and parents suffering from dementia.
Prater, who juggles caregiving along with his normal responsibilities as a dad, acknowledges the dual roles can be very taxing.
“I’m running on adrenaline,” he says. “I’ve lost quite a few pounds.”
What's the answer to getting caregivers to care for themselves?
People like Prater need to ask for help, Kallmyer says. But most seem to feel that caregiving is something they need to do on their own. And that's a setup for disaster, she says.
“When you’re taking care of someone over a period of time, you can’t just soldier on,” Kallmyer says. “At some point your health will be impacted and that will keep you from being the best caregiver you can be. We often ask people, ‘If you get sick and land in the hospital then what is going to happen?’”
Kallmyer suspects that the urge to go it alone is part of the American character. She’d like to see that change.
So would Livney.
"[Caregivers] need to allow themselves to not be perfect," she says.
They also need to learn to look after their own needs.
“People need to give themselves permission to take care of themselves,” says Livney. “That’s what we focus on. We don’t spend much time talking about the disease and functional aspects of caring for someone with dementia. We try to help people understand how to take care of themselves."