The Stress of Chronic Illness
But sometimes chronic illness can break couples apart. Or come close to it.

Suzanne Mintz was only 28 when her husband Steven was diagnosed with multiple sclerosis at the age of 31. Soon after the diagnosis the couple, who have one daughter, now 31, separated for 10 months and almost divorced. In the 26 years that have passed since then Suzanne has suffered through serious bouts of depression. “[Illness] has totally changed our lives,” she said. “We have gone through a maelstrom of emotion.”

Over the years Steven’s condition has worsened. Although he still works three days a week as an economist for the U.S. Department of Energy in Washington, D.C., Steven uses a wheelchair and needs Suzanne’s help to get out of bed, shower and dress.

When he stays at their home in Kensington, Md., on Mondays and Fridays she returns from work in the mid-afternoon to serve him his lunch. Most evenings, she makes him dinner and they spend quiet time at home. Caring for a chronically ill person “gives a different perspective on life than healthy people have,” Suzanne said. “We’re closer to understanding the true value of life. One thing I’ve learned is not to focus on petty things.”

She has learned to live with her husband’s illness. But it hasn’t been easy. She was stricken with clinical depression three times.

Part of it, she says, stemmed from a feeling of isolation. In the beginning she couldn’t talk to her husband because, she said, “he was in denial and we had a tough time communicating about it.”

Suzanne manages to cope by helping others. In 1993 she founded the National Family Caregivers Association as a way to support caregivers and to help others avoid the same sense of isolation she had felt. “I’m using my experience to help others,” she said. “And that gives my life a purpose…meaning.”

Since birth, Stephanie has needed constant and intense care. Stephanie was isolated in her home for the first five years of her life to avoid infection. When she was 7, Stephanie was diagnosed with autism, or pervasive developmental disorder.

Although Lauren and her husband share care-giving duties, it is Lauren who spends the most time with her daughter. While Stephanie is at school Lauren works at home coordinating the state chapters of two national organizations for disabled and chronically ill children. In the evenings and on weekends, she also is a project supervisor for a social policy research firm near her home.

Lauren must work outside the home to pay for medical expenses not covered by her husband?s insurance. Every day Lauren gets up at 7 a.m. to bathe her daughter, who often wets her bed, change her sheets and bring her daughter to the kitchen for breakfast. Although Lauren no longer has to spoon feed her daughter, she does have to set the food in front of her. Because of her kidney disease, Stephanie is on a severely restricted diet and so every portion of food must be carefully prepared without salt and sugar and then measured out in precise amounts. She also must take a daily dose of laxative and a caloric supplement.

Lauren walks Stephanie to a school two blocks from their home. Then she returns home to work until 2:30 when she leaves again to pick up Stephanie. For the rest of the afternoon Lauren helps her daughter with school work or her physical and speech therapy exercises.

While every day is a challenge, the hardest thing to deal with is society’s lack of sensitivity when it comes to such children, Lauren says.

“People tend to be more understanding of illnesses than of disabilities,” said Lauren, 40, of Mercerville, N.J. “Once you mention ‘disability,’ they start backing off, holding out the garlic. They react with fear.”

Her service to her only child and to other parents who are trying to cope in similar circumstances keeps her motivated, Lauren says. Taking an active role in the campaign against Stephanie’s disease gives her some control over an otherwise disordered existence. “When she was born one of the first things I did was to call every kidney organization I could find,” Lauren said. “It made me feel not so helpless. I could direct some of this and at least then I knew what I was dealing with.”

It happened for Lauren and Steven Agoratus when their daughter was born with a rare, debilitating form of kidney disease. Suzanne Mintz’s life changed a quarter century ago when her husband contracted multiple sclerosis.

In a blur of new responsibilities these people became caregivers, an often unheralded role in our society that places immeasurable stress on family and friends. There are more than 25 million family caregivers in the United States, and some 80 percent of them are women.

Here are three stories of women who shoulder grueling schedules and learn to cope with new crosscurrents of emotions as they care for ill loved ones.

Providing 28-Hour-a-Day Care
All her life Bernadette Vinci had envisioned herself as a hard-charging woman, one who could “earn the bacon, bring it home and cook it up in the pan.”

So when her widowed father Benjamin was diagnosed with amyotrophic lateral sclerosis five years ago, Vinci did what she had always done: she took responsibility, this time by juggling the demands of her highly competitive job as a global account manager at AT&T by day with her father’s healthcare needs at night.

But as the months went by Vinci found it increasingly hard to concentrate at work and constantly worried about whether her dad was being well tended by the caregivers she hired. Worry was compounded by concern over her father’s mounting medical bills and her family’s limited financial resources. Two years after her dad’s diagnosis and the rapid decline that followed, Vinci found herself battling chronic fatigue and depression.

Something had to change. Despite advice from doctors, family members and friends, Vinci quit her job to stay home full time. Now she, her sister and two brothers take care of their dad, who is 81. “It’s a 28-hour-a-day job,” said Vinci, 40, of Port Chester, N.Y. “Someone has to be by his side all the time.”

Vinci’s duties begin at 4 a.m., when she takes over from her sister Jo-Ann. Her first duties are to rotate her father in bed, check his pulse, his blood pressure and the level of carbon dioxide in his blood. Next she suctions the mucus that has accumulated in his chest overnight and administers deep breaths of oxygen to him by way of a hand-held respiratory device — the first of about six deep breaths that he will get before noon.

Every four hours Vinci administers a cocktail of various medications, water and vitamins into the feeding tube that is surgically attached to her dad?s stomach. Since her father is prone to infection due to a tracheotomy that allows him to be hooked up to a respirator, Vinci spends much of her shift sanitizing and dusting his room. She notes every medication she has given and most of her impressions of his condition for her brother on the next shift.

Her unrelenting early morning schedule makes it almost impossible to have a social life, says Vinci, who lives with her dad in the home she grew up in.

She copes by exercising, taking naps in the afternoon and watching old Dean Martin and Jerry Lewis movies with her dad and siblings. “We all have a really good time together. We do have fun despite it all,” she said.

Vinci says that she has drawn life lessons from caring for her dad. “Every day we realize how lucky we are. We can walk and talk. We have a lot to be thankful for.”

She takes solace from her plans to start her own insurance company, specializing in disability and long-term policies. She hopes to help ease the trials of other stricken families by helping them maintain a good quality of life while meeting the costs of care.

“People often are totally unprepared to deal with lifelong illness,” she said. “They need to be educated.”

She draws strength from acting on her convictions, despite advice to the contrary. “Everyone told me I was doing the wrong thing, that I was wasting my life staying home to do this,” Vinci said. “And for a long time I was in conflict. But I’m doing this because I wanted to and that makes all the difference. For me, it’s a way of showing the greatest love of all.”

Stay off the scale. Do start exercising once you get the doctor’s permission. Go for walks with baby or try a baby and me exercise (or yoga) class. Bonding and burning fat, what a combination!

Put the maternity clothes away. Buy new big clothes or borrow hubby’s instead. I recommend treating yourself to at least one new item, if not a few basics, leggings or T-shirts, just for some retail therapy. It’ll force you to get out of the house and do something nice for yourself. All will appreciate this. Remember the mantra: a happy mommy makes a happy baby and a happy daddy.

Get some really well-fitting nursing bras. I had some torture devices that sagged and bound at the same time and I was miserable. One of life’s secrets: bras and shoes that fit make life much more enjoyable.

Give yourself a gigantic break. This is hard work with no net. What other nonpaying, 24-hour, 7-day-a-week, life-and-death job, do you have on your resume? It’s a learn-as-you-go deal, just as the precious angel in your arms is a work in progress. The key is seeing the journey as the goal.

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Get someone else to do the housework, the shopping, and the cooking. If hubby or your Mom or Mom-in-law won’t or can’t, set aside some of the cash baby gifts to hire someone. Or, if people ask you what you need for the baby, suggest they pool their money to pay for help. It’s essential, because you’re too tired and busy to do it and yet it needs to be done. If you’re like me, a messy house just isn’t an option. It’s too depressing on top of everything else.

Get out of the house every single day. Take the baby, or don’t, but get out. Even for a brief walk, a boring errand, anything. It’ll change your perspective and make you a happy mommy.

Find other mommies. Aside from your husband and your parents, other Moms are the most willing audience for baby news. And it’s a great way to get information, tips, advice, reassurance, and companionship. You have the instant bonding of soldiers. (But remember, comparing is despairing, so don’t go there.) Ask for and accept any help you need.

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Write off the first month. It’s going to be rough. There’s no way around it unless you are a movie star and have every need professionally catered to, including having someone else to wake up and feed the baby. First of all, you’re recovering physically from the ordeal, er, I mean miracle, of giving birth. Second, you don’t know what the hell you’re doing. Third, your hormones make you an unstable wreck. Fourth, you never ever sleep and that makes you batty, wiped out, cranky, and dumb. The good news is that although it seems like your life will never again be “normal,” this tough time will pass and, thanks to Mommy Brain, be forgotten.

Don’t put pressure on yourself to be head over heels in love with the baby. Let’s face facts. For nine months, your body did all kinds of weird tricks, then the kid rides in on a tsunami of pain and immediately needs round-the-clock care and attention. How are you supposed to love that? Sure, we all know some gal who had the perfect pregnancy, labor, and delivery, gave birth to a gorgeous baby and told us how swept away with love she was the moment the doc plopped the child on her chest. Even if that is true, ignore it. She’s crazy. It takes time to fall in love. What you will almost certainly feel right away is an overwhelming protectiveness. Think mama bear. Think Mom lifting a Volvo off her kid. That type of thing. And that’s powerful in its own primal way, too. But love takes two and the baby is just not really a person for a while. It’s more of a little eating, pooping, crying, sleeping machine. That’s not entirely without charm. But wait till the soul starts taking root behind those big eyes and you get those knee-melting, gummy grins. Then you’re hooked for life.

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While the spasms cause the symptoms, the cause is not known. There is a link between IBS and stress, although stress probably acts as a trigger, but is not the underlying cause.

It’s not generally a serious condition, but IBS can range from a simple nuisance to a disabling condition.

If your symptoms are severe, it’s important that you see a doctor to make sure that what you have is indeed IBS and not ulcerative colitis, an inflammation of the colon. With IBS, there is not inflammation.

There’s no cure, but treatment — if you follow through — can be very helpful in relieving symptoms. Treatment typically consists of dietary and lifestyle changes. Talk with your doctor, and it may help to consult a nutritionist. Exercise and stress reduction can be very useful in reducing the symptoms. Sometimes doctors prescribe medications.

Smoking is an addiction that is physical, psychological and behavioral. Relapse is one of the intrinsic characteristics of the process of recovery from addiction. It is a “two steps forward and one step back” type of process, but momentum can be maintained with the right attitude and response to a relapse.

The most important component is to understand the process of quitting and to make a commitment to keep quitting until you are successfully free from tobacco. This means adopting the attitude that “if at first you don’t succeed, try and try again” until you do succeed. On average, it takes smokers four attempts over a 15-year period to quit successfully, but as many as six to eight attempts is not uncommon. Generally, younger or lighter smokers (under 10 cigarettes a day) relapse fewer times than older or heavier smokers.

The second important thing is to see your relapse as a learning process. There are always obstacles to every goal we set in our lives. A relapse simply exposes vulnerability in your quitting plan. Rather than berating yourself for failing, use the experience to strengthen your plan. Common causes of relapse include:

Quitting cold turkey without preparation or other strategies to support your behavior changes
Relying only on medication(s) to help you quit
Overlooking the importance of having stress management strategies
Underestimating the strength of your attachment to the hand-to-mouth behavior of smoking
Overeating, poor diet and weight gain
Succumbing to smoking with friends or co-workers
Inadequate social support for your quitting efforts
Very few relapses (only 2 percent to 9 percent) occur because of physical withdrawal symptoms. Most occur when you are anxious, angry, frustrated or depressed — especially if you are offered a cigarette at those times. Avoid getting too hungry, angry, lonely or tired (remember H.A.L.T.) because these are common relapse times. Take care of these needs first by eating, talking to a friend, exercising or resting.

Relapse is a two-step process: a risk situation combined with an inadequate coping response. A slip or two, or eight, on the way to success does not make you a failure.

The only real failure occurs when you completely give up your efforts to change your tobacco use. If you find yourself lapsing into your old smoking behaviors, stop the process as soon as possible and re-gain control of your smoking!

If you want to develop a quitting attitude, visit our Tackling Tobacco Chats. These groups offer live, online opportunities to chat each week. You can gather support for your quitting efforts, and you will meet other courageous and determined people who want to take charge of their smoking habit, too!

They did not allow me to eat or drink anything colder than room temperature — no ice water, let alone ice cream, and they even made me heat my milk before drinking it. The theory behind this “room temperature or greater” ritual is that when a mother pushes during labor, it causes her pores to open and if she were to consume cold beverages or food, the cold would seep into her body through the expanded pores and cause headaches and other various aches and pains forever.

This concept sounded ridiculous to me, but my in-laws are committed to their beliefs. So I complied. They are so committed, in fact, that I was also prohibited from washing my hair for the entire month following Spencer’s birth. (Okay, I cheated a bit on this one.) When I was finally permitted to resume washing my hair, my mother-in-law brought me a bowl full of ginger peelings and instructed me to boil them into a shampoo soup. Yum! I smelled like ginger for days. Again, this “refrain from washing your hair” ritual is to prevent cold and moisture from seeping in, because — regardless of temperature — getting any water on one’s head is certain to cause aches and pains.

My in-laws indicated that if I didn’t follow their ritual recommendations, the aches and pains I developed would last forever… or at least until I redeemed myself by having another child and complying with the rules. My son Spencer is now two years old and it just so happens that I’m entertaining thoughts of having a second child. Why would I even consider risking another C-section and the certainty of going through all of my in-laws’ suggested birth rituals?

Well, for one thing, since my experience in the hospital, I have learned about a new drug called Xylacaine — a numbing-agent which can be injected locally into the incision area. No more morphine? I certainly hope not — I don’t want to endure those side-effects again. No more rituals? Now that’s a different story! But that’s okay, because, while the C-section incision continued to cause pain as much as ten months after my son’s birth, my in-laws cooperatively wrapped up their rituals a mere month later when they hosted Spencer’s “Red Egg Party” — a kind of “coming out” banquet for babies, featuring red eggs and ginger. Red for good luck, eggs for more fertility (hint, hint), and ginger, I guess, to add some more spice in life.

Besides, I do, after all, have a loving, supportive family, so I need to — and want to — give back some of that love by respecting my in-laws’ beliefs and rituals. Heck, they gave me their son to marry and made my little Spencer possible, so I’ll be happy to humor them.

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Okay, okay, I admit it: I drew the line at eating the special post partum pigs feet soup. I learned about most of the rituals at the last minute, so I didn’t really know what I was in for — a good thing or I might have postponed childbirth indefinitely. But I caught on to the pigs feet soup, because they made it ahead of time and I spotted it in my mother-in-law’s refrigerator. “What is that?” I asked, wrinkling my nose. When she told me what it was and explained that upon giving birth I would be expected to not only slurp the broth, but to joyously gnaw upon the actual trotters, I firmly told her that I refused.

Usually I can pretty much handle the ritual tasks my relatives require of me — and, from the moment I accepted my husband’s marriage proposal to this present day, I’ve been happy to do so. I learned how to properly serve tea and satisfactorily carried out the traditional tea ceremony custom for my in-laws prior to my marriage. I even ate the obligatory day-after-the-wedding boiled egg to insure my fertility — it obviously worked.

When Spencer and I came home from the hospital, my in-laws were on my doorstep, ready and willing to help. And they did help me a lot. They tried hard to be supportive and take care of “Ah-Wing-Wing.” But it was not always easy to have them in my home, telling me what to do and not quite understanding that I was still in pain. They changed diapers and cooked meals, but at times I felt like they expected me to just jump right out of bed.

During the month following Spencer’s birth, I did my best to stick to as many of my in-laws’ Chinese birth rules as possible, but it wasn’t always easy. I try to remain open-minded and give everything a chance, but I did have a hard time swallowing the concoction of vinegar, water, and some ominously foreign substance that my mother-in-law asserted would help “clean me out.” Are my insides really that dirty? Perhaps my mother-in-law was referring to the bleeding that lasts for a few weeks after giving birth. Whatever her reasons were, the vinegar mixture tasted awful! To make matters worse, she didn’t offer me just a cupful. No, she brought the medicinal beverage to me in a plastic econo-sized peanut butter jar. I thanked her politely, feebly swallowed a few sips, and then asked her to put the jar in the refrigerator. Later, alone with my husband, I declared: “I’m not drinking this!”

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