CARING FOR SOMEONE AT HOME WHO HAS HEART DISEASE
For almost half of their 54 years of marriage, Paul and Juanita Gagne have battled against his heart disease.
Twenty-five years ago, Paul Gagne, 77, was diagnosed with cardiomyopathy, a disease that weakens the heart muscle. Last year, he received a type of mechanical heart support called a left ventricular assist device, or LVAD, to assist with his heart condition.
As his primary caregiver, his wife Juanita, 75, performs a daily sterile dressing change where the LVAD line comes out from his abdomen. She does most of the cooking to follow a low-salt and low-fat diet, reminds him to take his medications, and goes to doctor’s appointments with him.
“I’m just happy to do it and that I still have him. You have to know in your mind that this is something you want to do, and set yourself to it,” says Juanita, a Grandview, Mo., resident.
Doctors play an important role in guiding patients and caregivers on how to manage heart disease and here are their tips and advice they offer to caregivers on how to take care of someone with heart problems.
Paul’s doctor, Tracy Stevens, MD, a cardiologist with Saint Luke’s Mid America Heart and Vascular Institute in Kansas City, Mo., recommends a general guideline of one protein and two colors -- fruits or vegetables -- for each meal. It keeps patients away from french fries, chips, and cheese, she says. Her other tips include:
Meet with a dietitian to design a customized plan that fits your particular heart condition.
Eat food without nutrition labels. This means less packaged, processed food and more fresh fruits and vegetables.
Aim for lean meats such as chicken and fish. If a protein has a label, it is processed and preservatives such as salt may have been added.
Read labels carefully, especially paying attention to sodium. For a person with heart failure, too much salt could mean a trip to the hospital.
Try to avoid processed food, high-glucose foods, fried foods, and white carbohydrates such as white flour and white rice
Indulge wisely. Make sure the portion size is small. A pizza and dessert now and then aren’t out of the question, just as long as it’s not overboard on the sodium.
A doctor can help a person with heart disease get the most out of physical activity depending on age, physical ability, balance, and type of heart disease. It is also critical for patients who smoke to stop immediately, says David A. Meyerson, MD, JD, director of cardiology consultation services at Johns Hopkins Bayview Medical Center in Baltimore.
“The more activity you do, the better your cardiovascular health,” Meyerson says.
Start slow with realistic goals, 30 minutes most days of the week for about two and a half hours total each week. It’s best to switch off days between aerobic and strength exercises. For strength training, more repetitions are better than struggling with heavy weights, Stevens says.
A recumbent bike is a good option for those with arthritis, balance problems, and back pain, she says.
“I encourage caregivers to support their loved one on this concept by exercising with them and make it a team effort,” Stevens says.
For caregivers, it’s best not to take on the primary role of managing the medication if possible, and to encourage and assist the person to stay on track and not run out of medication. Individuals should understand why a medication is being taken, Stevens says.
Pill boxes make organization easier and mistakes are less likely to happen, she says.
It’s important to keep an up-to-date list of medications and bring it to your doctor’s office for every visit for review. Know their names and if there are generic substitutions. Someone with a heart condition could be seeing a nephrologist and rheumatologist in addition to a heart doctor, and medications can come from all those different sources, Meyerson says.
“Some medications don’t go well together, some medicines can be excessive, or even be counterproductive,” he says.
Symptoms or Warning Signs to Watch For
Oftentimes, a patient with heart disease will be reluctant to go into a doctor’s office when symptoms re-emerge, such as new chest discomfort, dizziness, or leg swelling.
A caregiver can encourage the patient to bring those concerns to a doctor’s attention. These small incidences could be a warning sign ofsomething more serious, Meyerson says.
“If it’s an emergency, don’t hesitate to call 911. Don’t be embarrassed to go to the ER,” Stevens says.
If a patient has had a heart attack, it could be shortness of breath, indigestion, or pain between the shoulder blades. For those with heart failure, a sign that it has come back is if they’re waking up short of breath at night, Stevens says.
A caregiver may also have to watch for signs of a recurring arrhythmia such as atrial fibrillation (AFib), a problem with the rhythm of the heart. During atrial fibrillation, the small chambers of heart do not pump blood effectively into the larger ventricles. This typically results in a rapid and irregular heart rate.
A patient may not realize signs such as increased fatigue or increased shortness of breath could mean that the AFib is not being well controlled by medications and that it should be called to the attention of a doctor, Meyerson says.
Communicating With the Patient’s Treatment Team
“As a caregiver, communication is most important. I think what is key is to go with the patient to the visit. It’s helpful for both of you to hear, and the caregiver to take notes. Always try to get the patient to do the communicating with the doctor if able,” Stevens says.
Caregivers can organize ahead of time any questions that they may have about the patient’s heart problems. The can also ask for a consultation appointment if there are many questions to have more time with the doctor.
Patients can feel embarrassed to say that don’t understand. In this case, the caregiver can make sure everything is understood, Meyerson says.
Another opportunity to ask questions is in appointments with a nurse practitioner in between visits with a cardiologist. A nurse practitioner will often meet with the patient to fine-tune any heart disease treatment plans, Stevens says.
Living Life and Taking Care of Yourself
People with heart disease should still try to do the things that they used to enjoy, and caregivers can help them. Going out to see family and friends is also part of maintaining overall health, Stevens says.
When taking care of someone with heart disease, it’s essential that the caregiver take breaks to avoid burnout and accept help from others. Often times, caregivers will abandon their own health care needs.
“If you’re fatigued, then you can’t do your best work for someone else,” Meyerson says.
For the Gagnes, it’s been a priority to keep both of them healthy, find support, and give Juanita time on her own.
Juanita says she goes to her checkups to make sure that she’s healthy, turns to her daughter and friends when she feels stressed, and takes water aerobics classes. The couple also meets with friends in a similar situation for support.
“We stay positive, and our belief in God gets us through tough times,” Juanita says.