Getting married means, among other things, promising to support your spouse through good times and bad. But is fulfilling this promise sometimes just too great a burden to bear when the person you married is seriously ill for years?
By Betina Louw and Natanya Mulholland
Alan and Brenda Barker had been married for barely seven months when he was diagnosed with aggressive lymphatic cancer. Their honeymoon period came to an abrupt end. So did renovating their new home in Plattekloof near Cape Town – Alan had to save all his strength for intensive chemotherapy and a bone marrow transplant.
Alan fell ill around Easter 2006. The couple were both 37, in love and excited about their future together. Like other unencumbered couples, they would often throw some clothes into a bag and spontaneously head off for a weekend in the countryside.
That particular weekend they went to Wilderness on the Garden Route. The day before they left, Alan’s back began aching. The pain increased during the next 24 hours. Once in Wilderness his stomach started to swell. “It felt as though I’d drunk three litres of Coke,” he says. So they decided to return home.
An exhausting month of tests followed. “We felt helpless – no one could tell us what was wrong,” says Brenda.
After a laparoscopy their doctors called them in again. That was when their worst fears were realised: there was a cancerous growth in Alan’s stomach, already 15 cm in diameter.
“Brenda was in tears,” he says. “She’s a trained nurse. Usually she’s the strong one and I’m the softy. I just started crying along with her.” The future looked uncertain. “Our life together had just begun,” says Alan.
Brenda had to fight her own battles alone. “I shed many a tear behind Alan’s back, but we had to be strong for each other. The pressure on our relationship was enormous.”
She knew all too well what lay ahead: her father had died of cancer, she’d nursed cancer patients during her training and as a manager for Medscheme, which administrates medical aids, she’d also worked closely with the oncology departments of various hospitals.
“Knowing exactly what was ahead of us possibly made it worse,” she says. But there was no time to brood. Alan had to start with strong doses of chemo immediately.
“The therapy would make him sterile, so we were advised to freeze his sperm so we could have children later on,” Brenda explains. “But at that point our most immediate concern was for his life so we decided to start the chemotherapy right away and freeze his sperm after the first round.”
Chemo weakens the body’s resistance to disease. For two weeks after every treatment Alan couldn’t go near other people for fear of infection. “We turned down invitations for two years and lost touch with our friends. Alan spent a lot of that time in bed. We also couldn’t be intimate,” Brenda says.
All of Alan’s food had to be carefully prepared and cooked to ensure it wasn’t contaminated in any way by germs. He could drink only bottled water. Fruit had to be peeled. He had to avoid dairy products such as unpasteurised milk, cheese and yoghurt because they contain micro-organisms.
“Brenda insisted on knowing every detail but I didn’t want to know what to expect,” says Alan. She went with him to every scan and doctor’s appointment and knew before he took every new medication what side effects he was likely to experience. After his first dose of chemo she quietly put a bucket on the floor in the back of the car because, from her nursing studies, she remembered how nauseous patients become.
When a man died who like Alan had stage-one cancer and had received the same treatment, Brenda immediately wanted to know why. She went to see their doctor and fought for her husband’s rights. “I wanted to make sure Alan was getting the right treatment. After that our doctor kept us better informed.”
Eighteen months after being diagnosed with cancer Alan had a bone marrow transplant. His own stem cells – which had been harvested and treated at an earlier stage – were used. At the same time, Brenda discovered she was pregnant through artificial insemination. “That gave us new hope,” she says.
But she miscarried a few weeks later. “The first round of chemo had damaged Alan’s sperm. It was clear we’d never have children,” she says. The couple’s eyes brim with tears.
“Our first two years of married life went by in a flash,” Alan says. “But even if we couldn’t grow as lovers, our friendship became much stronger. Before I met Brenda I was involved with a few women who would have run a mile had this happened. I believe she’s part of the plan for my life.”
Alan is currently in remission, but both he and Brenda are still afraid the cancer might return. In June, after more tests, they will know if it has been eradicated.
“We believe we’ve won the fight,” Alan says. “If the cancer returns we’ll fight again. When you know someone is there for you unconditionally, the unbearable becomes bearable.”
His personality changed
Serious illness brought Alan and Brenda closer together but that isn’t always the case.
When a freak accident left John* seriously brain damaged it changed his relationship with his wife, Gaby*, dramatically. She did everything she could to help John recover and save their marriage but it was a hopeless task.
“We were happily married for eight years,” Gaby says. But all that changed the day John fell off a high ladder and damaged his brain’s frontal lobe, which controls emotions among other things.
“Suddenly he wasn’t the man I married. He kept me at arm’s length. It broke my heart. He turned into a total stranger. “When he was in intensive care I found out I was three weeks’ pregnant. At least I had that comfort. If something happened to John at least a part of him would live on in our child.
“The brain surgeon warned me that in brain-damage cases, fewer than 20 per cent of relationships last. I remember thinking we would be fine and I would show them! I was determined our lives would go back to normal.”
After the accident John spent three weeks in intensive care. When he returned home nothing was the same. “He had no bladder control and I had to change his nappies. I had to help him shave, which could take three hours sometimes because his attention constantly wandered. I worked with the physio and occupational therapists to get him walking again and supported him in every way I could. But I couldn’t make him whole emotionally. That connection was severed for good.”
Then epileptic fits started. John had his first attack when their daughter was six months old. After that Gaby could never leave him alone with the baby. He also began losing his grip on reality.
“He would tell me he was on his way to have a braai with the Springboks,” Gaby says. “Then he would get ready and wait for me to take him. Sometimes it helped if I could laugh about it but actually it really scared me.
“Before the accident, John was a relatively conservative and diplomatic person, but suddenly he started saying truly inappropriate things and behaving strangely in company. “When your partner is so seriously brain damaged it’s like living with the living dead “You, the person who is closest to the patient, suffer the most. The patient is often barely aware of what they’ve lost. I’d lost my best friend and yet there he was, sitting opposite me, needing me.
“Worst of all, we couldn’t talk about what had happened. I was desperate for him to understand how much suffering we’d experienced because of the accident – but he couldn’t even remember the incident. I felt resentful because I had to go through an important part of my life – my pregnancy – without any support from my husband.”
Gaby’s distancing herself and even her resentment are typical of someone who has to care for a chronically ill life-partner.
A study by Swedish researchers Monica Eriksson and Marianne Svedlund, published in the Journal of Clinical Nursing in 2006, found caregivers often feel neglected and cut off. They feel their problems and needs are underestimated unless they themselves draw attention to them.
A feeling of utter isolation, even though they’re part of a couple, is another characteristic of this situation. Women who have to care for their husbands feel their daily life is a struggle and their greatest desire is for everything to go back to normal.
“They want to be loved as women again, not as carers,” Eriksson and Svedlund write. John wasn’t keen on couples therapy so Gaby decided to go on her own.
“Gradually I realised what was wrong could never be fixed. We tried talking about our relationship, but when our daughter was 18 months old, John packed his bags and left. His reason: he didn’t think he could make the marriage work.
“He started dating someone three months later, something the John I knew would never have done. Shortly after that we decided to divorce and I realised I had to move on.
“We still see John and he’s interested in our child, but not that much. It’s painful for me to be near him because of all the memories. It’s taken me six or seven years to heal. Fortunately I’ve met a man who accepts my daughter as his own and has helped me to get back on my feet again.”
Care for caregivers
The healthy partner often pays a high price as the caregiver. Angeli Rex (40) of Potchefstroom was just 35 and her husband, George, only 41 when he suffered a massive stroke. His determination helped him to learn to walk again and now he rides everywhere on a converted tricycle. But for Angeli, having to shoulder all the responsibilities when she least expected it was really tough.
“After George’s stroke I had to make all the decisions about everything – from the household to finances,” she says. “Luckily I was already involved in our finances but I couldn’t ask George for help when the budget didn’t balance . . . I had to fix it myself.”
In an extensive study among Latin Americans (typically a family-oriented cultural group) Veronica Cardenas of Stanford University, California, found the levels of cortisol, a stress-related hormone, were so high among people who cared for chronically ill relatives it was even detectable in their saliva.
She also found caregivers were reluctant to admit they were stressed because they felt guilty about it. This guilt, experts warn, can lead to physical and emotional burnout – a state that intensifies the guilt and ultimately also gives rise to feelings of failure.
Even though George’s physical recovery was relatively fast and he was soon able to move around independently again, Angeli’s worst frustration was his badly compromised speech.
“We started isolating ourselves from others because it was simply too difficult visiting friends,” she recalls. “I had to interpret everything George tried to say. It was frustrating for him too because he’s a highly intelligent man and he used to love conversation.”
Of course it’s usually older couples who find themselves in the situation in which one partner becomes seriously ill and the other becomes the caregiver.
“My father Johan Herselman was always the healthier and fitter of my parents,” says Johannesburg journalist Ilse Salzwedel. “I remember him as a fit, tanned man with legs that were sinewy and strong from walking and working in his vegetable garden.
“But three months after his 78th birthday my dad who had never smoked, drank or been overweight, had a stroke.
“My mother, who has always been a perfectionist about her housekeeping, had to spend all her time caring for him. “She no longer had time for her beloved sewing and my parents went out less and less. Depression was inevitable.
“In addition she was constantly anxious about my dad choking or falling – which did happen. Attempts to get my mother to see a doctor about her own health problems – she’d had a big back operation a few years before my dad’s stroke – usually stopped just short of an argument.
“As her children we knew my mom’s life had changed drastically the moment she’d become the caregiver, but just how drastically we only realised after she died tragically in a car accident on 11 July last year. The four of us shared responsibility for my dad for a few days, and that’s when we came to fully understand how difficult things had been for my mom.”
Care givers need care too
Aletta Louw, a matron at the Susan Strydom home in Pretoria, says she often sees caregivers carrying an unnecessarily heavy burden when it comes to looking after a loved one – often because they allow the situation to become serious before seeking help.
“Many are in denial about their partner’s problems. I often hear excuses like ‘my husband has always been a little confused’ when the truth is he has Alzheimer’s or Parkinson’s disease. Caregivers also often shy away from putting a loved one in a home. Unfortunately in South Africa there’s still a stigma attached to this,” Louw says.
Among the illnesses caregivers develop as a result of the enormous pressure they’re under are stomach ulcers, high blood pressure, diabetes and poor eating habits or eating problems (even anorexia). Out of pure frustration caregivers often turn to alcohol or overeating, and they don’t get enough stress-releasing exercise because they can’t get out of the house.
Studies done in America in 1999 found that women who care for a sick or disabled partner for more than nine hours a week run a greater risk of heart disease, probably because they’re under pressure from too little time, financial burdens and watching a loved one suffer.
Caregivers’ chances of becoming fatally ill are also 64 per cent higher than those of partners who don’t play a care-giving role. The risk can persist or worsen if the loved one dies. Aletta says doctors often find that patients develop cancer or chronic diseases 18 months after their spouse passes away.
But it’s not just the caregiver whose stress levels increase. “The patient also realises something is seriously wrong but can’t always put it into words. This causes frustration, which can lead to further behavioural problems and deterioration.”
Potential pitfalls for caregivers
Aletta Louw, who has specialised in geriatric and disabled nursing, cautions about the problems a caregiver might encounter.
Abuse
Caregivers (of people with dementia for example) can be subjected to serious aggression and can even be assaulted. They often don’t tell anyone and suffer in silence.
Advice
Swallow your pride and ask friends and relatives for help so you can form a support network, Aletta advises.
Social isolation
It’s difficult to expose a once proud/clever/talented partner to the outside world in his or her new state. But not doing so can lead to total isolation.
Advice
Join a support group or go for therapy so you can talk about your emotions, frustrations and problems. Adult children must be involved in caring for a sick parent: if they take over for just one day a week a caregiver gets an essential break to go out without worrying or just to rest.
Self-neglect
Caregivers often put their own needs, whether physical or emotional, after those of the ill person. They justify this by saying there’s not enough time or money for themselves. Often there is literally no one to care for the sick person while a caregiver goes to the doctor.
Advice
Many local authorities, welfare organisations and homes for the aged have programmes for caregivers and their dependants. In some cities there are even daycare centres where dependants can spend a few hours while caregivers take a break or see to their own health. Find out about programmes like this near you. Get medication if you’re suffering from anxiety and/or depression. Take supplements and eat healthily to boost your immune system. And don’t neglect your hobbies. It’s essential that you relax.
* Not their real names.
Condition centre: Cancer