There is a saying in disability circles that you never see the person pushing the wheelchair, only the person in the chair. Caregiving can be a lonely, invisible task.
Nettie Bennington, 71, knows what stress caregiving causes; she has been living with it for some 30 years. Bennington's husband Gary, 71, had his first heart attack at age 44, and was diagnosed with progressive atherosclerosis. For a long time he was in denial.
"He would say he had not had a heart attack, he'd had a blockage," remembers Bennington, who has been married 46 years and said she and her husband are very close.
"He didn't want to go there. He hadn't stopped smoking completely, which made me crazy. He put the burden on me [to take care of him] because he didn't want to take care of himself."
Gary has stopped smoking but over the years developed congestive heart failure. He has had bypass surgery, several heart attacks, numerous hospitalizations and an implanted defibrillator. Right now, Nettie Bennington says his heart is pumping at only 30% efficiency.
Nettie herself has chronic asthma and at times needs care, such as during a recent bout with food poisoning.
The Benningtons, who live in Las Flores, Calif., are lucky. They live with their daughter, son-in-law and grandchildren.
"We live like one big family, totally integrated," Bennington told ADVANCE, explaining she attributes this to her Italian heritage. "If we want some quiet, we can retreat to our master suite and close the door. It's a perfect situation."
This communal living helps her care for her husband and herself. She cooks for the entire family daily, specializing in low salt and low fat dishes to adhere to Gary's dietary restrictions.
Although she is 3,000 miles away, Robin Trupp, PhD, RN, ACNP-BC, CHFN, FAHA, heart failure nurse practitioner at Duke University, Durham, NC, and a founding member of the American Association of Heart Failure Nurses (AAHFN), said if Gary Bennington were to enter her office, she would observe Nettie as well.
"I try to ask caregivers how they're doing," Trupp said. "They're the silent person with heart failure; this has an impact on their life.
"Caregivers tend to be stoic, so they minimize any symptoms or problems they're having," she explained. "They can have depression, anxiety, insomnia. They don't have any free time; I let them know it's OK to take a couple of hours for themselves."
Many American lives are affected by heart failure, which is more common in men than women up to menopausal age, according to AAHFN statistics. "Then men and woman have problems about equally," Trupp said.
More than five million people are caring for loved ones with heart failure, according to AAHFN. That means one-third of American homes have a caregiver providing daily assistance to someone with a chronic illness.
Often these caregivers place the needs of their loved ones above their own, commented Trupp, who recently led an AAHFN task force on caregiver burden.
"Burden is the accepted word, but I wish there was another term," she said in frustration. "These people do this out of love, so burden doesn't seem appropriate."
Watching & Worrying
Bennington knows what Trupp is saying.
Typical of many men, her husband has always been reluctant to recognize that certain symptoms are serious, so she does all the worrying and watching for any medical issues.
"Around Christmas time he was having difficulty breathing and was very tired. Finally he went to the doctor who said it seemed to be pulmonary," she said.
"The pulmonologist said his lung function had not changed and Gary insisted he had no heart symptoms. But I noticed his stomach was particularly big; he looked pregnant.
"Come to find out he was having heart symptoms but he really wanted to have Christmas at home, so he delayed seeking care. Finally the day after Christmas he went to the ER," Bennington said.
"Ironically, I had an asthma attack a few hours before he said he'd go to the hospital. So here I am in one bed in the ER and there he is in an adjoining bay."
The first advice Trupp would give any caregiver is "don't be afraid to take any help that's offered"
"When a neighbor or friend asks, take advantage of the offer. Let them sit for an hour or so, so you can go outside for a walk, get your nails or hair done," she said, adding that AAHFN tips point out "your loved one may appreciate the company."
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Addressing the needs of caregivers throughout 2013, AAFHN has come up with tips to relieve the stress and offers these strategies:
• Maintain a healthy and regular diet.
• Exercise regularly (Go outside and walk for 30 minutes every day or at least several times per week. The fresh air and sunshine can make you feel better, sleep better and reduce stress.)
• Assure adequate rest and sleep (Aim for 7-8 hours every night.)
• Avoid smoking and use of tobacco products.
• Drink moderate amounts of caffeine and alcohol (Do not use alcohol or drugs to reduce stress!)
• Take care of your own medical issues. Know your limits! Be sure to take your medicines and keep appointments with your healthcare providers." (https://www.aahfn.org/index.php/caregiver)
Additionally, Trupp suggests taking the time to read a book, take a long hot bath, get a haircut, go to church or go out to lunch with friends.
Staying active can include attending a support group. Trupp is a strong believer in this activity, either the caregiver alone or caregiver and patient.
Bennington said she and her husband have attended groups and benefited from them. "Part of cardiac rehabilitation includes support; we've been to several meetings, and we've turned to Mended Hearts as well," she said. (Mended Hearts, http://mendedhearts.org/, offers online, phone and personal visits in the hospital to patients recovering from heart surgery.)
Trupp said she gains a great deal personally from listening to people in support groups.
"One of the big complaints from patients with heart failure is unending thirst. They get so thirsty I have heard patients talk about being tempted to drink toilet water," she said. "The thirst comes from diuretics as well as the disease process. As patients get sicker symptoms worsen and the thirst can be overpowering.
"Something I would have never thought of to relieve this thirst I learned in a support group," she continued. "One caregiver freezes grapes and pops them in the patient's mouth when thirst gets so bad. The coolness provided a more tolerable way to quench thirst."
Bennington said she "feels less alone, less unique," after attending a support group. "When you hear others are going through the same emotions; hear them say 'don't worry so much, don't hover,' you realize you're not weird."
Trupp would add one more piece of advice from AAHFN: "Be proud of what you are doing and realize the courage it takes to do it."
Gail O. Guterl is a freelance writer.