(LifeWire) -- Forty-five-year-old Mary Pakusch doesn't remember what happened in the minutes and hours after she went into sudden cardiac arrest at home on July 15, 2006. Her husband Paul does. Mostly, he remembers how scared he was.
The Pakusch family, from left, Tracy, 19; Paul, 47; Mary, 45; Kristi, 21; and Melissa, 16.
"She was living a perfectly normal life," says Paul, 47, who works at a Rochester, New York, television station.
"We were talking, and the next thing I knew she had collapsed. I called 911, and the operator tried to talk me through CPR, but I had no idea what she was asking me to do.... I felt totally helpless."
Paul Pakusch succeeded in restarting his wife's heart, and after several days in the hospital, doctors sent Mary home with a device surgically inserted in her chest that is designed to treat dangerous heart rhythms and prevent sudden cardiac arrest. Yet for the Pakusch family and others like them, surviving such a cardiac event or receiving a diagnosis of heart disease is the prelude to a radically changed life.
Every year, some 16 million Americans have heart attacks, and 5 million experience congestive heart failure, according to the American Heart Association. Those who survive can face a lifetime of compromised health and require varying degrees of care. Often, the role of caregiver falls on a spouse, and the resulting strain can lead to depression and feelings of isolation.
"Roberta," who asked that her real name not be used due the to personal nature of her comments, has been her husband's primary caregiver since he developed heart disease 24 years ago. Since then, they have been through a litany of heart-related hospitalizations and surgeries
"It has been a strain on our life, and a strain on our marriage," says the Havertown, Pennsylvania, woman. "When he first was sick, I was working. I took lots of vacation time to care for him, and I would take my lunch breaks to visit him when he was in the hospital. Eventually, it became too much and I had to leave my job, and I'm still resentful."
Roberta has health problems of her own, requiring four major surgeries in the past five years. "Through all of this, I still had to take care of him."
Because her husband's health is so poor, Roberta has not enjoyed the same kind of spousal support during her own hospitalizations, she says. "Because of his heart, he sleeps a lot. If he came to visit me in the hospital, he'd fall asleep within five minutes. I finally told him not to come anymore."
Care for the caregiver
Spouses with a personal history of depression, anxiety, substance abuse, chronic medical conditions, and lack of social support may be more prone to caregiver stress, according to Kirsten Wilkins, a geriatric psychiatrist and assistant professor of psychiatry at Yale University. She offers the following tips for spouses to avoid caregiver stress:
• Take care of yourself. Pay adequate attention to your own health and well being. This includes attention to your diet, exercise, and medical needs.
• Take a break. No person can be a caregiver 24 hours a day. Enlist the help of family and friends so that you can do something enjoyable for yourself.
• Seek support. Call on friends, family, support groups and professionals, for example, if you're neglecting yourself in order to care for your spouse, if you are becoming angry and resentful of your spouse, or if you are turning to alcohol or drugs to cope with stress.
"Communication between spouses, attention to the caregiver's personal needs, and a strong personal support network may help protect against caregiver stress," says Wilkins.
Roberta does reach out to friends and family for support, and she sometimes relies on a local organization that provides assistance with shopping and running errands. "But, I'm mostly on my own," she says.
Realizing that she needed to take better care of herself, Roberta began carving out some time in the afternoon for herself. "I don't get to take my break every day because other things come up," she admits. "But at least I'm thinking about it."
Compounding the stress of caring for a spouse is the knowledge that there are no guarantees of a better tomorrow. A relapse can occur without warning, or the caregiver's own health could suddenly decline.
After Mary Pakusch returned from the hospital, Paul had to assist his wife with daily activities like showering. As she became better able to care for herself, Paul shouldered other burdens like driving her everywhere for six months because doctors had forbidden her from operating a car.
Mary eventually regained a degree of independence, resuming her career as a special-education teacher, but on December 22 of last year, she experienced another sudden cardiac arrest and has once again been forbidden to drive for at least six months.
"We have always known that additional cardiac arrests are possible, but there is no way to be emotionally prepared for it," says Paul Pakusch, who said the family has considered ways to maintain Mary's independence like moving to an apartment complex closer to a large shopping plaza.
Roberta also worries about the future and the toll it will take on her and her husband. "I have leg problems and have to walk with a cane. I don't know what I'm going to do when I can't walk anymore. I just can't think about that now," she says. "For now, at least I can put my feet on the ground. I need to do this in order for him to survive." E-mail to a friend
LifeWire provides original and syndicated lifestyle content to Web publishers. Heather M. Ross is a nurse practitioner specializing in adult cardiovascular care.