Caregiver Action Network is pressing lawmakers to ease the burden for the many Americans who care for loved ones.
Jay Briseno is a 30-year-old Army veteran. He entered the Army Reserves and was called to serve in Iraq during his freshman year of college, shortly after the terrorist attacks of Sept. 11, 2001.
He returned from Iraq paralyzed and on a ventilator after being shot in the back of the neck. He remains in that state today, bedridden and unable to speak or eat normally.
Jay’s father, Joseph Briseno, a 55-year-old Army veteran, and his wife, Ava, care for their son in their Manassas Park, Va., home. Two nurses tend to him at night when the Brisenos are sleeping. The U.S. Department of Veterans Affairs pays for the nursing services.
“It’s very tough,” Briseno told Healthline. “Our husband and wife relationship is kind of on the back burner right now.”
Only twice in 10 years have the Brisenos been able to go to a restaurant and enjoy a meal together. “Just a simple trip to the grocery store must be carefully planned, because me and my wife both cannot leave the house at the same time,” he said. “It’s tough, but we are happy that we still have our son with us.”
Caregiving can be lonely—one of the most common feelings that caregivers report is isolation, according to John Schall, chief executive officer of the Caregiver Action Network.
But there’s no reason for that to be the case, he told Healthline, pointing to new data that shows that 39 percent of adult Americans care for a loved one, up from 30 percent in 2010.
Most American caregivers are between the ages of 30 and 64 and are still in the work force, according to the Pew Internet and American Life Project. And there’s plenty of support available.
That’s the message Schall hopes to spread as the United States recognizes National Family Caregivers Month in November, complete with a proclamation issued by President Barack Obama.
Many factors are driving up the number of active caregivers, Schall said, including the return of wounded veterans. Americans are also living longer, so disabling conditions such as dementia have more time to develop. In addition, we’re seeing a rise in some childhood conditions that require extra care,
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Nursing homes cost an average of $85,000 a year, according to Schall. Most insurance companies do not pay for them, and Medicare pays only for short-term stays. Medicaid picks up the cost only after a person depletes his or her resources. For many people, this occurs after only six months.
Caregivers provided a whopping $450 billion in free help in 2009, according to AARP Public Policy Institute. That number rose by $75 billion in just two years.
“A big part of this that people don’t realize is lost productivity,” Schall said. “If a family caregiver has to go on reduced time at work or leave their job entirely, that’s a huge hit. Maybe we’re beginning to slightly see, although I don’t want to overstate the case, an erosion of the stigma in the workforce for being a caregiver.”
Schall’s organization is lobbying federal lawmakers to enact legislation that can ease the hit many caregivers take.
“Of course there’s no money for caregivers, and in this budget environment there never would be,” Schall said. “But we’d like to see that for at least during three years, caregivers could still be able to amass Social Security credits as if they were working.”
On average, caregivers spend about $5,500 a year out of their own pockets, he said.
Caregivers aren’t always relatives. Kevin Babbitt of Moline, Ill., has been a caregiver for Marilyn Williams, 83, for many years. Williams suffers from Parkinson’s Disease. She was an only child and has no children herself, leaving her without a family network.
Babbitt told Heathline that he began helping her 40 years ago at the age of 11 when he lived next door. It began with him shoveling the snow off her sidewalk.
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Although Williams has been in an assisted living facility for almost four years, the caregiving hasn’t stopped for Babbitt. He still does all of her shopping, helps her during meals, and takes her to the doctor. He visits at least once a day, every day. Sometimes he is there several times a day, even though he has a full-time job.
“I do ask myself sometimes how I got into this,” he said. “I often say that today was the worst day I’ve had since the last worst day I’ve had. It’s my little duty.”
Caregiver Action Network offers these tips for those tending to others:
- Seek support from other caregivers. You are not alone!
- Take care of your own health so that you can be strong enough to take care of your loved one.
- Accept offers of help and suggest specific things that people can do to help you.
- Learn how to communicate effectively with doctors.
- Caregiving is hard work, so take respite breaks often.
- Watch out for signs of depression and don’t delay in getting professional help when you need it.
- Be open to new technologies that can help you care for your loved one.
- Organize medical information so it’s up to date and easy to find.
- Make sure legal documents are in order.
- Give yourself credit for doing the best you can in one of the toughest jobs there is!