When Thomas and Carina returned from their honeymoon in 1997, Carina was placed on long-term disability from work due to a string of illnesses – including lupus, fibromyalgia, migraines, arthritis and heart problems. Her body temperature once went so high that Thomas had to carry her into a cold shower and hold her so that she could cool down; her pain was so severe that even her husband’s touch felt like a hot iron pressing against her skin.
What followed were years of chronic physical pain, sometimes keeping Carina bound to her bed day in and day out. Thomas often cooks, cleans, cares for their two young boys, does the laundry, buys groceries and serves as Carina’s primary caregiver. "I had the feeling of helplessness when I realised that her conditions simply wouldn’t go away," he recalls.
Thomas and Carina are not alone in their circumstances. According to the Australian Bureau of Statistics 2020/21, nearly half of Australians are dealing with a chronic illness, with the most prevalent chronic illness being mental and behavioural conditions. For married individuals suffering with chronic illness, their spouse becomes the primary caregiver, homemaker and breadwinner. More often than not, though, all the caregiving spouse can do is be present and just wait by their loved one’s side.
"Because things don’t disappear within a few days," Thomas says, "it gives me time to exercise my ‘coping muscles’ every day, knowing that, apart from a miracle, things are never going to change."
Coping with daily pain
As his wife’s primary caregiver, Thomas understands the importance of balancing his different household roles. This requires him to compartmentalise his emotions surrounding Carina’s health so that he can best serve her and their family’s needs. "I’ve been crippled emotionally thinking about how she is feeling," he says. "As I go, so does my household."
They try not to let Carina’s illnesses rule their home lives too much, Thomas says, adding that they strive to fill their home with both grace and humour for the sake of their sons. "We’ve been blessed with two fantastic boys," he says. The couple believes that as their sons learn to be sympathetic toward their mother’s condition, they’re more able to show empathy toward and help others.
"I try to do things with the boys when I’m able, such as hiking, but that always evokes feelings of wishing my wife was there to enjoy the time with us."
Being honest with God
One counsellor at Focus on the Family Canada says it’s not uncommon for resentment to grow in marriage relationships where one spouse is suffering from chronic illness. According to her, the caregiving spouse may be running on empty by giving so much care to their ill spouse, sometimes becoming angry at God. "It’s easier to be angry at God than to be angry at someone who is ill for being ill," she says. "If they’re a believer, they may ask how God could have thought they could handle this. That is a huge spiritual struggle for caregivers, to struggle with how it is that God expects them to live with grace in this scenario."
"Being raised in a Christian home, we’re taught to pray and everything will be fine," Thomas observes. "We’ve discovered that, although we are a household of prayer, God likes to answer in His time, [but] even though we trust that God has everything under His control, we are still humans who suffer. We are still humans who need to live life. Being a man who has to watch his wife in pain everyday who [relies] on painkillers, most of the time it’s very emasculating."
The Focus on the Family Canada counsellor adds that spouses often feel guilty for being resentful, then they resent the fact that they feel guilty for being resentful in the first place. "It’s okay to be angry, and therefore to embrace the journey as it comes."
Taking care of yourself
Spousal caregiving has physical implications as well. A report from the Canadian Academy of Health Sciences claims that caring for chronically ill loved ones also impacts the health of the caregivers themselves, including low immune systems, slow wound healing and high blood pressure.
"People overestimate their abilities and underestimate their stress levels," a Focus on the Family Canada counsellor explains. She recommends that caregiving spouses have regular medical checkups, specifically regarding their cortisol levels so as to ensure they have enough energy to administer care to their spouse, their family and themselves. "If your cortisol levels are too high, you’re going to burn out," she warns.
She adds that support groups, counselling, respite and fellowship are invaluable examples of self-care for the caregiving spouse. "Regular support groups are very practical. When people can address these emotions in a safe place, it helps mitigate any resentment."
Embracing a different life
Thomas’ own journey to healing has largely been due to accepting that he can’t change Carina’s circumstances. "In order to be in control, I have to be out of control," he says. "Once I learned that I had to relinquish this control I thought I had over our situation to God, it took a lot of the pressure off."
He also has come to realise that, in any case, marriage requires giving all you can possibly give – even if your spouse doesn’t feel able to offer as much in return.
"The sooner one learns marriage is not 50/50 but rather 100/100, the easier things will be. I didn’t commit to being a husband for my wife only 50 per cent of the time. I promised I would be there whenever she needed me and not only when it suited me."
Still, Thomas knows that doesn’t always make it easy.
"Each morning, the first thought that goes through my head is, how bad is my wife’s pain today?"