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Donna Pidlubny

The crosses we bear

An Easter reflection on caregiving

By Trisha Elliott

I’m not going to skip ahead to the empty tomb this Easter. I’m going to stand where so many friends, family members and congregants are standing — in Simon of Cyrene’s shoes.

Simon was the original cross bearer, the guy called from the sidelines to carry Jesus’ cross, to companion his suffering, to help him bear the load. Two thousand years later, an estimated four to five million Canadians have similarly committed, either by choice or by circumstance, to lift the burden of suffering from loved ones suffering long-term health problems.

We are a society of caregivers. Of cross bearers. We travel suffering-lined roads, straining toward resurrection.

Simon of Cyrene’s experience, imprinted in a handful of verses, beckons spiritual questions, ones that might illuminate our own caregiving journey:

Simon, how did you feel when the Romans pulled you from the crowd? Were you frustrated that your life got sidelined, frightened that you might get nailed to a cross, too, or sad that you missed out on Passover celebrations that everyone else could enjoy? Were you honoured to be there to relieve Christ’s burden or angry you didn’t have a choice? Looking back now, would you say the whole experience was a blessing or a curse?

Simon carried Jesus’ cross up a hill to Golgotha. Or maybe just the crossbeam. No one knows for sure. But it’s speculated that the crossbeam alone weighed 50 kilograms. No piece of cake. Still, Simon’s entire journey through the network of alleyways on the Via Dolorosa could have taken less than an hour.

The road is much longer today. The Victorian Order of Nurses (VON) reports that most Canadians spend more than three years caring for loved ones with long-term health problems. Over 20 percent provide care for more than 10 years. And who is the typical caregiver? Although it’s changing, Health Canada says she’s likely female. Older than average. Caring for a loved one in the caregiver’s own home.

Pamela Holmes, a professor of theology at the Queen’s School of Religion in Kingston, Ont., fits the profile. She has been her father’s primary caregiver for eight years. He suffers from dementia and moved into her home in Trenton, Ont., after her mother died suddenly. A typical caregiving day means making breakfast, dispensing pills, checking blood pressure, washing loads of laundry, arranging care providers, attending doctor’s appointments, providing emotional support, and preparing lunch and supper before leaving for work at the university.

Caregiving not only carves out Holmes’s time; it occupies her thoughts. “It’s just constantly on my mind. I get calls at work probably a couple of times a week that dad has fallen or is failing and the PSW [personal support worker] is wondering what to do.” Her father has a walker but refuses to use it. “Last week, he wandered outside and fell in the snow and couldn’t get up,” says Holmes. “I pull the fuse on the stove now before I go to work because he has started fires. There is a lot to keep in mind.”

In Simon’s day, bearing the cross was hazardous. You could be heckled, spit on, even beaten. In our own times, carrying the cross is still fraught with risk. According to Health Canada, 25 percent of caregivers say their employment situation has been affected by their responsibilities, while 50 percent report health problems due to caring, and 79 percent report emotional difficulties.

Barbara Small’s parents developed colon cancer six months apart. Her caregiving experience led her to work as a program development co-ordinator for the Family Caregivers’ Network Society in British Columbia. She rhymes off a list of concerns common to caregivers: “time management, not knowing what resources are available, physical and emotional exhaustion and isolation — you know, missing vacations, not going out with friends because you are too tired or they don’t understand or don’t want to hear about the stress of caregiving.” Small says that family dynamics can become big issues, too. “Siblings have different understandings of roles, different relationships with the person they are caring for, different preferences of how to offer care.” No matter the situation, she adds, “grief is involved.”

There’s a therapeutic term for the pain associated with carrying the cross. It’s called “compassion fatigue.” The California-based Compassion Fatigue Awareness Project lists some of the telltale signs that the cross has become too heavy: bottled-up emotions, excessive blaming, poor self-care, difficulty concentrating, substance abuse, apathy and chronic physical ailments.

Pamela Holmes used to walk her dog to cope. “That’s how I managed. When I wasn’t managing well, I gained 40 pounds,” she says. Sadly, Holmes’s dog died recently. What will she do now? There is a pause. The previous night was difficult. Her father called out repeatedly, and she was awake consoling him.

Simon, when was the journey especially hard? Did you ever wonder if you were going to be able to hang in with Jesus? How did you get through the exhaustion? When were you at your best? Is there anything you could have done to make the journey easier?

“From my experience, caregivers feel alone. They are looking for information and don’t know where to turn,” says Bonnie Schroeder, the director of caregiving with the Practice, Quality and Risk Team at VON Canada. According to Schroeder, it’s not just the practical help that caregivers need; it’s also emotional support. Her advice for caregivers? “Arm yourself with information. Have the difficult conversations. Tap into networks. Access community services. Find support for yourself. Don’t wait until there is a crisis and you are scrambling around to know where basic things like financial documents and insurance policies are.”

Barbara Small recounts times when she resented her father, when she thought “I’m doing all this for you, and here you are complaining.” Her stress started to dissipate when she made an intentional effort to be empathetic. “I became a lot less stressed when I tried to identify with the emotions that he was going through. . . . I remember thinking, ‘Yup, I’d be grumpy and irritable, too, if I couldn’t go to the bathroom by myself.’”

Small says that caregivers often try to keep the care receiver’s life normal when it isn’t normal anymore. “I think it’s helpful to recognize that there are some things that can’t be done the same way anymore, that life won’t be the way it was, but that that doesn’t mean it can’t be good. It’s adjusting.”

When caregiving turns to crisis, though, it can be hard to adjust.

The week before Christmas last year, Holmes’s family got the flu. “We had to send dad to the hospital. We just couldn’t cope. I was too feverish to look after him, and there wasn’t anyone else.” But two days later, the hospital needed the bed and her father was discharged. “I was still so sick. I lay on the floor outside his bedroom door. I needed to be near him but just didn’t have any energy.

I had to pay the transfer costs when they discharged him from the hospital, too. A hundred dollars each way. It was awful.” Holmes is concerned that caregivers are falling through the cracks. “I know people who really need the same level of care now that I have, but the services just aren’t there.”

Caregiver advocacy groups are calling for a national caregiving strategy to provide better supports to caregivers. One of these — the Canadian Caregiver Coalition — estimates that caregivers provide more than $5 billion of unpaid labour annually to the health-care system. Still, Schroeder says that caregiving is often not perceived as work, a perceptual barrier to shaping public policy. “We live in a caring society. People see caregiving as an extension of their relationship and often don’t recognize it as work. Caregiving is often hidden, too, taking place in people’s homes. There are probably far more caregivers than we know.”

Simon, did you pace yourself, plant your feet every once in a while, fill your lungs with air and your legs with energy? Did you discover ways to shift the weight around, to accommodate the burden? Did you soak up encouragement from Jesus’ followers in the crowd, the ones who could empathize with your journey? Did you applaud your strength, the success that each step represented? Were you gentle with yourself when you stumbled? Did you focus on Jesus when the way was hard?

Simon of Cyrene’s experience may have turned him to Christ, his brush with holiness not only having an impact on his spiritual life but shaping his family’s faith as well. Some biblical scholars speculate that Simon’s sons Alexander and Rufus, who were mentioned in Mark’s Gospel, became leaders in the Roman community to whom the Gospel was addressed. Were the young men moved by the story of their father’s walk with Jesus? No doubt, bearing the cross can be positively life changing, the sacred journey inspiring to behold.

Pamela Holmes sounds tired. Last night’s consolations are taking a toll today. And yet, she says, she wouldn’t trade it. “There’s something very rewarding about taking care of the man who used to advocate for me. He was there for me, and now I’m there for him. He is where he needs to be.”

Caregiving has enhanced Holmes’s theology, too. “It has made me more focused on ‘the least of these,’ more focused on justice,” she says. “We cater to the healthy adult in church life. Caregivers need the blessing and support of churches.” For her, the support doesn’t have to be huge. Small things make a big difference: a visit at home, a listening ear, permission to miss church services and be where she needs to be.

Holmes’s husband is a minister. But on Sunday morning, she curls up with her dad and watches whatever televangelist takes his fancy. “Whoever he chooses is fine. I just go along. We sit together and that’s our church. He pats my hand sometimes. It’s meaningful on a level I can’t explain. I know that we won’t walk this way together ever again.”

Simon, I read your story every Easter. I want you to know that I admire you, whether you have taken up the cross with joy in your heart or if you wish that someone — anyone — could take your place. You provide care and compassion on a difficult road, a road bent with blessing and burden. By carrying the cross — by alleviating the suffering of another — you help make resurrection possible. 

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