Health Horizons : PSYCHOLOGY : For Better or Worse, in Sickness . . . : Well over 9 million healthy spouses in the country are giving long-term care to a chronically ill or disabled mate. The physical and emotional toll on the care giver can be enormous.
* A woman with a 5-year-old son and a husband who has multiple sclerosis said, “I’ve catheterized him, diapered him, carried him on my back, read to him. You name it. I’m 30.”
* Another young mother whose husband is brain-injured, added, “Being a well spouse has meant the slow, steady stripping away of dreams, hopes, communication, respect and love.”
* A man whose wife became a quadriplegic in an accident, said, “At Social Security they told me to divorce my wife and they would take care of her. She didn’t ask to be a quad. She’s treated like second class. So I work, hurry home and then I work to take care of her.”
These stories are familiar to Peggy Meisel, executive director of the San Diego-based Well Spouse Foundation, which among other things offers support groups for people taking care of husbands or wives disabled by chronic disease or permanent injuries.
“Perhaps worst of all,” said Meisel, whose husband has end-stage kidney disease, “is that we care givers are invisible. People always say, ‘Hi, Peg, how’s Jerry?’ It happens all the time. I’m never asked how I’m doing. Our entire identity is swallowed up in the demands of the illness.”
There are officially 9 million well spouses giving long-term care to a chronically ill or disabled husband or wife. But Meisel estimates that the number may be double or triple that because there are many cases where the person does not meet the prerequisite of having a “major disease” but nonetheless requires extensive care and observation.
“For example,” said Meisel, “my friend’s husband had bypass surgery a decade ago but lots of things have gone wrong. Every week it’s something new. She’s afraid to go to sleep for fear he will stop breathing in the middle of the night. But she would never (be considered) a well spouse.”
The long-term care giver has many burdens. The well spouse faces not just emotional and financial loss but also a doubled workload and daily anxiety and stress. Friends may disappear, and leisure time and a sex life are things of the past. In addition, the care-giver is often the sole parent of children in the household, a responsibility that may last 10 or 20 years.
Care givers may be in their 20s or their 80s and are equally divided between men and women. Sick spouses suffer from a wide range of disabilities running the gamut from slowly progressing neurological disorders such as multiple sclerosis and Huntington’s disease to the effects of stroke, advanced diabetes and senility. Many are disabled because of accidents. Others suffer from severe mental illness.
Meisel knows all too well the demands of caring for such patients. Her husband has had two kidney transplants “and you live your life watching chemistry, always looking for rejection,” she said. “It’s a nightmare.”
Ironically it is the progress of modern medicine that has brought these “nightmares” to the home care giver. A century ago people died of disease quickly. Now, as Meisel points out, thanks to advances in medication and surgical techniques, patients may linger for years and require extensive home care.
In addition, a century ago families were not fragmented the way they are today. There were aunts and uncles and cousins and nieces nearby to share the burden of caring for a sick family member. Now the responsibility falls solely on the shoulders of the well spouse.
Overwhelmed was the way 63-year-old Don Ryerson felt when caring for his wife, Kay, who suffers from Huntington’s disease, an illness that slowly destroys the body and the mind .”My life became unmanageable,” said the San Pedro resident.
Finally unable to cope, he placed her in a nursing home 18 months ago. Ryerson had taken care of her for 24 years.
“It was almost like being Nelson Mandela,” said Ryerson of the years he took care of his wife. “I was under house arrest.”
He had to quit his day job at the Social Security Administration and delivered newspapers at night so he could care for his wife during the day.
His schedule was a tiring round of feeding, bathing and tending to her toilet needs. “And once I could hardly change a baby’s diaper,” Ryerson recalled. “Somehow you summon up the strength to do what you have to do.”
For years he was forced into an almost monastic life, a common experience among well spouses. Barbara Drucker of Rancho Bernardo leads a similar existence. She cares for her husband, David, who a decade ago had to retire from his dental practice because of multiple sclerosis.
“If you have to take care of your partner’s intimate needs, you no longer see your spouse in a sexual way,” said Drucker, president of the Well Spouse Foundation. “He or she becomes a patient, a child, not a spouse. . . . We have a mother-son relationship because he is so dependent,” she added, “and that makes both of us angry.”
She admitted to feeling a lot of anger during the first years of her husband’s illness but it has gradually subsided. “Still,” said Drucker, “there are times I feel jealous of the multiple sclerosis. It has taken over my husband’s whole life. It colors everything he does and feels and thinks and desires. I’m definitely second fiddle to the MS.
Dr. Susan Arlen believes that the medical profession is not paying enough attention to the needs of these care givers. She specializes in rehabilitation medicine at Somerset Medical Center in New Jersey and first became aware of the extraordinary stresses in their lives when she noticed that 30% of her patients were well spouses. They were coming in with stress-related heart attacks, strokes and bleeding ulcers. However, as she noted, most care givers do not manifest such dramatic symptoms. They simply lead lives of quiet desperation.
“They not only lose their life’s companion, their best friend, their mate, their sexual partner,” said Arlen, “but in a way they lose their present and see themselves as losing their future.”
Unfortunately, said Arlen, who is also a psychotherapist, physicians are trained to cure, not to deal with the emotional trauma of caring for an ill loved one. “We don’t always have to cure,” she said. “All we need to do is care, and caring can be very healing.”
The physician predicted that as preventive medicine becomes more important, greater attention will be paid to the needs of the well spouse.
And as gloomy as this picture seems, there is some help even if it is limited. In California, there is the Genetically Handicapped Persons Program, funded by the state Department of Health Services. It provides in-home care for people suffering from eight genetic disorders including Huntington’s disease and cystic fibrosis.
In addition, the Well Spouse Foundation is supporting passage of the Family Caregiver Support Act introduced by U.S. Sen. Bill Bradley (D-New Jersey). Currently, a couple must be virtually impoverished to qualify for Medicaid-funded home health care and in many states there are long waiting lists for it.
The proposed legislation would provide in-home skilled nursing care, short-term nursing home placement and intermittent adult day care for anyone, regardless of income.
A representative of Bradley’s office was hopeful about passage of the year-old proposal but conceded that such a “bold initiative” might have rough sledding in the Congress.
For the moment, however, the ultimate responsibility for the care of the ill spouse still falls on the husband or wife. A few men and women cannot endure the emotional cost and walk away, but most well spouses will take care of their sick husbands or wives for years.
Why do they do it?
People like Fred Vershure of Fountain Valley fall back on religious values taught in childhood. For more than 20 years he cared for his wife, Madeline, who had multiple sclerosis.
“What does the Bible say?” he asked. “No greater love hath a man than to lay down his life for a friend.”
For others it is just a sense of common decency. “I didn’t think I was doing something unusual,” said Don Ryerson of his years caring for his wife. “It seemed the decent, honorable thing to do. She didn’t ask to be sick and if I had been the one to get sick, she would have taken care of me.”
But perhaps it boils down to love. “My wife was my lover and my best friend,” explained Vershure, “I never thought of her care as a burden I couldn’t handle.”
