It was not Rhoda Levin's heart whose muscles died that November night in 1981, but in many ways it might as well have been.
She and her husband, Marsh, were lying in bed watching Monday Night Football when Marsh turned to her and said, "Don't get scared, but I think I'm having a heart attack.""That moment was the last of my old life," Rhoda Levin remembers now, "a life in which I had thought we would live and triumph over everything and every situation, forever. It was also the first moment of my new life, a life that included being a cardiac spouse."
Every year there are a million new heart patients in America. That means at least a half a million cardiac spouses - a phrase of Levin's invention that sums up the effect of heart disease on family members. As Levin sees it, she isn't just a wife whose husband has a heart problem; she is a victim too - of new diets, new family roles, a changed lifestyle and, most of all, of uncertainty.
Despite the large numbers of cardiac spouses, Levin says she felt absolutely alone after her husband's heart attack as she tried to adjust to everything from hospital lingo to fears of losing her husband.
By the time Marsh had to have coronary bypass surgery two years later, Levin was convinced that what Minneapolis needed was a cardiac spouse support group. That was the beginning of Heartmates, which has since expanded into a book, a national newsletter and a videotape funded by Marion Laboratories.
The videotape is currently being distributed, free of charge, to hospitals around the country, says Levin, who was in Salt Lake City recently to promote the paperback edition of her book, "Heartmates: A Survival Guide for the Cardiac Spouse."
Levin weaves her own experience into more generalized advice that ranges from what questions to ask the patient's doctor to how to nag less once the patient is home.
Levin says she didn't realize how much she was trying to run Marsh's life after his heart attack until the day he forgot to take his pills to work.
"I stood there, paralyzed, wondering whether I should take his pills to him at his class or drive downtown and deliver them to his office," she recounts in the book. "For a brief moment, I fantasized Marsh on the verge of another heart attack. Surely if anything happened it would be my fault. Then I saw how silly that was. I said to myself, `He can take care of himself; it isn't my responsibility.' And suddenly the spell was broken. I was free!"
As it turned out, Levin's instincts were right: Marsh had an extra day's dose of pills at his office.
Nearly eight years after his heart attack and six years after the bypass operation, Levin's husband works full time, plays racquetball three times a week and is in better shape than he was a decade ago.
". . . I will always be a cardiac spouse and Marsh has heart disease forever," writes Levin at the conclusion of her book. But "it didn't mean an end to all that was good in our lives. I believe that out of the cardiac experience, your life can become richer, more meaningful and more joyous. Heart disease doesn't have to be an ending. It can be a new beginning."
Cardiac spouses can receive the first issue of the Heartmates newsletter free by writing to Heartmates, P.O. Box 16202, Minneapolis, MN 55416.
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Make each day enjoyable by taking care, celebrating progress
Rhoda Levin's tips for cardiac spouses:
1. Eat well: A heart-healthy diet is prevention for the family and maintenance for the patient. But make changes one step at a time.
2. Get adequate sleep: Take short naps and get frequent rest to compensate for disrupted or fitful sleep at night. Don't count the minutes you've slept; let how you feel be your guide.
3. Walk every day: Spirits are replenished by the warmth of the sun and the earth underfoot. Walking with your mate may be something special you can do together.
4. Relax: Breathe fully and deeply, listen to beautiful music, laugh aloud every day as you move through recovery.
5. Get needed information: Give yourself time for your mind to return to normal thinking and concentration levels. Staying informed will reduce your anxiety.
6. Tell your story: Describing your concerns and experiences will clarify your reality, bring order to chaos and help you feel less alone. Don't let others dictate your timetable for feeling "normal" again.
7. Accept your feelings: Depression and anger are natural responses to hurt and loss. Tears provide a welcome cleansing.
8. Touch one another: Take every opportunity to express caring with physical expressions that are right for the two of you. Hold hands when you're out walking; share a hug in the kitchen; cuddle at night.
9. Get support: No one can heal all alone. Everyone needs and deserves support and encouragement to get through grieving losses and healing the wounds from a cardiac crisis.
10. Celebrate: Each milestone passed, every measurable success during recovery is cause for celebration: a special kiss, a funny card, recognition itself marks progress. Enjoy each precious day you have together.