Parenting with a chronic illness

When the attack came on suddenly, as they often do, James Comrie* and the twins were five minutes from home. Comrie, who’s been suffering from Crohn’s disease, and an unnamed chronic pain disorder, for the past five years, was suddenly all but incapacitated. He couldn’t even hold hands with his three-year-olds. “Daddy’s belly is really, really sore,” he gasped. “Hold onto my pants.” For most of the 10 minutes it took to get home, Comrie was essentially depending on them for his sense of direction. Once at the house, his wife, Jill, took over with the twins.

The impact of an inflammatory bowel disease on Comrie’s parenting is not always this dramatic. But it’s still considerable. Unable to work outside the home, Comrie has been the at-home parent when Jill is at work. That’s quite a struggle some days. “On the worst days, I can’t get up off the couch for more than an hour or two in total,” he says.

Hundreds of thousands of Canadians are living with chronic health conditions. An estimated 200,000 Canadians have inflammatory bowel disease (which includes Crohn’s), 15,000 to 50,000 have lupus, more than 75,000 have multiple sclerosis, and an estimated 390,000 have been diagnosed with fibromyalgia.

Healthy parents can only imagine what it must be like to summon up the physical and emotional energy needed for parenting when you have to navigate unpredictable, often scary symptoms, the anxiety of an uncertain future, reduced income and drastically varying energy levels.

Amanda Cooke, a mother of two from Ottawa who has had rheumatoid arthritis and lupus since her early teens, says, “I often feel like 26 going on 72.” That’s on relatively good days. “When my arthritis is bad, even lifting Gabriel [aged] out of his crib and changing his diaper are very difficult.”

But beyond the physical symptoms and challenges, parents with chronic illness must deal with certain specific child-rearing concerns. “I worry that, eventually, these conditions will take a toll on me and I won’t be here for my children,” says Cooke. Recently, when she was sick in bed for eight days with excruciating migraines, Cooke and her husband hired a mother’s helper. “I was very thankful she was there, but at the same time it scares me to think that I am so young and unable to care for my children at times. What would happen to them? How would my husband cope?”

It’s hard to imagine that having a parent with a chronic illness is an ideal circumstance for children, but the long-term effect is likely buffered by other factors, particularly the level of support and nurturing the children get from their relationship with other adults, particularly their other parent. Most of the parents consulted for this article have young children, so the potential impact (or not) of mom’s or dad’s chronic illness may not be clear for some years. However, a story from Jill Comrie shows that kids have a sense of the enormity of the situation.

“Adam [now] is the only one of our children who was born before James got sick, so he’s the only one who knew his dad when he was well,” she says. One day, when she was dropping Adam (five at the time) off at daycare, he just started sobbing out of the blue. “James was going through a particularly rough period at the time,” she explains. “When I asked Adam what was wrong, he said, ‘Mommy, I’m not remembering Daddy when he wasn’t sick.’ It was almost like he was trying to hold on to the memory of James when he was well, and he could feel it slipping away.” Adam hasn’t said much else along those lines. Mostly he’s been a trooper — at times he’s prepared meals for his younger siblings on Dad’s sick days — but Jill can’t help wondering what other thoughts he might be having at times.

Breaking the news

Obviously, you can’t pretend nothing’s wrong when you’re staggering home from the mall, three-year-olds in tow, as Comrie was. But how much detail can kids handle about a parent’s illness? Social worker Gary Direnfeld, from Dundas, Ont., says how you talk to children about a parent’s chronic illness should depend on the child’s age. “Children who are three and under won’t understand very much about your illness,” he says. “What they’re aware of is whether you’re present and whether their needs are being met.” Cooke says Brandon, her four-year-old son, knows something is wrong with her health, but she hasn’t told him she has lupus or rheumatoid arthritis. She doesn’t think he’d understand, and she doesn’t want to scare him either. “I just say, ‘Mommy’s not feeling well today’ or ‘You have to play quietly for a while because Mommy has to lie down,’” she explains.

With children three to six, it’s important to separate the illness from the parent, says Direnfeld. “It’s not ‘me the parent’ who is unavailable, it’s that nasty lupus or multiple sclerosis that’s making me have to stay in bed today.” One strategy Direnfeld suggests for days when parents are sick in bed with a flare-up is to have whoever is caring for the child bring her in for short periods — islands of care, he calls them. The child might sit on the bed and play with toys or be read a story. The duration is less important than the frequency, Direnfeld says. “Being able to bask in the warmth of your company, a couple of times each day, can be reassuring for young children,” he says. Three- to six-year-olds are magical thinkers and, in some cases, might think they somehow caused the illness or could make it better. So rather than attempting a child-level explanation of Crohn’s disease, Direnfeld suggests saying something like “My tummy just isn’t working with me today, so we can’t go to the movie this afternoon. But there will be another day when I feel better and we’ll be able to go.”

“With children seven and up, what you want to do is to replace their fear and resentment with knowledge and information,” says Direnfeld. “They need to know a little more about how your illness works and how it affects you.”

Dealing with disappointment

Last summer, Sarah Pedlar and her family planned a family picnic and bike trip to the little lake near their home in Leduc, Alta. But the mother of four, who, like Comrie, has Crohn’s disease, had an attack that morning — severe stomach pains combined with fever-like chills and lightheadedness. The three younger children reacted fairly well when the trip was cancelled, but eldest daughter Emma, nine, did not. “I get the feeling that sometimes she thinks I’m using the Crohn’s disease as an excuse, that I didn’t really want to go.” Pedlar explained she did want to go and they would go on another day when she was feeling better. And that day came about two weeks later.

If the child is resentful, it’s important to acknowledge and accept that, and to share your own frustrations too (“I feel bad about how my illness has not allowed me to be available at times”). This doesn’t magically erase the child’s hurt or resentment, Direnfeld says, but it lets her know that it’s OK to feel the way she feels. She doesn’t have to feel bad about feeling bad.

The discipline dilemma

With young children, discipline is a hands-on physical process: touching them, chasing after them, getting in front of them and down at their level to talk to them. All of these actions are often more difficult for parents with a chronic illness. Add to that the guilt parents often feel because of their occasional unavailability and there’s a risk that basic parental discipline can fall by the wayside.

Direnfeld cautions against compensating by becoming overly permissive and letting behaviour standards drop. “Disciplining your children signals to them that they are important,” he says.

Jennifer McConnell,* a Toronto mother of two with multiple sclerosis, is a single parent, so discipline is all on her. How does she manage? “I have to think ahead,” she says. Her three-year-old son, Brendan, is very active and boisterous at times, so McConnell has to consider her ability to “contain” him, depending on how she feels and where they are going to be on a given day. “On bad days, we often stay in our apartment, says McConnell. “I wouldn’t be able to keep up with him outside. On good days, I make sure we go places where he can do his thing safely,” she says. “There’s an indoor playground nearby that we go to a lot. Brendan also spends more time in his stroller than he might if his mother did not have MS. “Some days, I’m walking pretty stiff-legged and if he were to get away from me, I might not be able to stop him from running out into traffic.”
Child care strategy

Parents with a chronic illness need a Plan B, and most likely a Plan C, for child care. What that entails will vary, depending on whether children attend child care, the availability of relatives and friends, and a partner’s ability to get time off work. Cooke’s husband, Rod, the family’s sole breadwinner, works long days co-running his own business, so they’ve had to call on relatives. During first-born Brandon’s first year, when Cooke had a lot of flare-ups, he was sent to stay with his grandparents about 11 different times.

One asset for Comrie’s family is flexibility in Jill’s job with a small accounting firm, which she negotiated when she was hired. “I said, ‘I think I can do a really good job for you and you can count on me to get my work done quickly and efficiently, but because my husband has Crohn’s disease, there are going to be days when I won’t be able to come in.’” To Jill’s surprise, her prospective employer told her that since they had their system on a network, she could work from home when she needed to.

McConnell relies on extended family and neighbours for respite care. “I’ve been fairly lucky so far,” she says. “During the difficult times when fatigue was exacerbating my MS symptoms, my son, who’s now three, was still taking a nap and my daughter [now] was often content to snuggle with me doing quiet activities like colouring. I also have sisters, a brother, and a niece and nephew I can call on.”

There’s no way to sugar-coat it. Parenting with a chronic illness is full of challenges, but you can have a parenting life, says McConnell. “I’ve had to drop my ideal of the perfect family life I used to imagine, and every day has its challenges. But now that I’ve learned how to live with MS, there are very few when the challenges seem insurmountable. And my kids are still happy kids.”

*Names changed by request.

John Hoffman is our Uncommon Sense columnist.