how investment in caregivers builds stronger, healthier community: 'your whole life totally changes'
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joy wile has noticed a stark difference in her ability to cope with stress since being introduced to social prescribing. prior to the program, her outlets for coping and managing the weight of caregiving were limited at best.
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the canadian centre for caregiving excellence (ccce), in partnership with the canadian institute for social prescribing (cisp), recently announced new efforts to improve the lives of canadian caregivers through a $1.8 million investment.
over the next two years, the funds will provide monetary assistance to caregiver organizations, including caregivers alberta, caregivers nova scotia, family caregivers of british columbia (fcbc), and the ontario caregiver organization (oco).
the pledge aims to improve access to social prescription for those who act as permanent or temporary caregivers through their personal and professional lives. caregivers are often burning the candle at both ends. with a lack of access to supports, it can “be a tough life,” says joy wile, an interior designer who looks after her husband after a series of unfortunate health declines began close to a decade ago.
liv mendelsohn, executive director at ccce, sees firsthand just how dire the situation can be for canadian caregivers through her work and as a lifetime caregiver herself. she hopes that the money and initiatives can improve the situation.
“there’s a real crisis in care in canada right now. caregivers are having a challenging time on many fronts,” she said in an email to healthing. “what we want most is to sit with our loved ones, listen to their stories, hold their hand.”
she continues, “we find ourselves navigating a fractured healthcare system, chasing referrals, test results, googling desperately at 3:00 a.m., learning how to administer medications, safely lift and transfer, as well as bathing, feeding, and more—all while wondering how to pay for it all while taking time off work.”
an ongoing struggle for balance and wellness
wile has only recently been given access to social prescribing programs, ones that connect her to local communities and organizations that can help her cope with the less-than-fulfilling side of caregiving. before that, it was an ongoing struggle to balance caring for her husband while also ensuring that she, too, is taken care of.
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“you’re a homemaker, and now, all of a sudden, you’re a landscaper. you’re a gardener, and you’re a pool man. and it’s just like, wow. that’s a lot,” she said. she later continues, “you’re sort of on your own, and you have to try to figure out life.”
“when you first become a caregiver, and a wife and spouse or whatever, your whole life totally changes. it’s not about you, and it’s really hard for me, especially, to think about myself because all of a sudden, your whole focus is on the person you’re taking care of.”
caregiver support organizations do all that they can to help alleviate some of the stress that falls on the shoulders of those who have to put others first, but when funding is limited, and caregivers are unaware of the supports available to them due to a lack of healthcare information, it can be challenging to show up for people who genuinely need it.
the statistics in canada paint a truly grim picture of just how difficult it is for caregiving canadians.
“caregivers are not okay,” said mendelsohn. “in a university of alberta study, 87 per cent of caregivers experienced loneliness, 73 per cent experienced moderate high anxiety, and 69 per cent noted a deterioration in their mental health. and in the recent ontario caregiver organization’s spotlight report indicates that 73 per cent are unsure whether they can continue in their roles.”
she continues, “the impacts of caregiving can be significant, including declining mental and physical health, burnout, as well as financial. access to social and community supports, like respite care, can be very challenging to access, so caregivers are often faced with making difficult choices about their ability to work and also take care of themselves. but we know that when caregivers thrive, so do the people they care for.”
improving the quality of life for caregivers through social prescribing
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social prescribing is the process of putting the caregiver first, if only sometimes, so their health remains intact and their ability to care for others does the same. it’s designed to foster a community of support for caregivers that they can draw on in times of overwhelm or stress.
by working with caregivers in social prescribing, people can learn how to create and manage their lives as caregivers in a way that allows them to maintain or improve their social and emotional wellbeing by accessing services that do so.
it’s all about connecting with resources, other supports, and others in the community so they know they’re not alone, help is available, and their health is just as important as the person they’re caring for.
wile has noticed a stark difference in her ability to cope with stress since being introduced to social prescribing. prior to the program, her outlets for coping and managing the weight of caregiving were limited at best.
“there wasn’t really anything for me to do. i would try and do things that—well, i have to be honest. i used to sit in my car and scream. people would think i was singing, but i wasn’t singing. i was swearing, screaming. you just need to vent to get stuff out. but there’s nobody to get that stuff out to,” wile said. she continues, “the other thing i would do if i could is just go outside and do something, not strenuous, but like rake or garden or something like that and pull things hard.”
wile has only been a part of the program for a short time, and even in that period, she describes how her old coping mechanisms are simply not needed anymore now that she has the proper supports to reach out to when her role as a caregiver becomes a bit too much to bear alone.
“it’s taken away because after my conversations with them, it’s basically, they can sort of guide where i am, and he’ll either say, ‘okay, you know what? you’re kind of having a bit of an issue this week, so you know what? call me back if you need to. i’m here, and if i don’t answer the phone, they know where i am.’” she continues, “talking, to me, is the best thing because it helps get everything out.”
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while having someone to vent to helps wile greatly, social prescribing can offer caregivers other services, depending on their needs.
mendelsohn defines the program and its offerings as “the practice of health care workers referring clients to non-medical interventions to support their wellbeing.” she goes on to describe that any therapy or stress-relieving technique could apply when it comes to social prescribing initiatives, and the goal of the ccce and cisp is to bring more awareness to the program alongside access to these interventions for caregivers who need it most.
“this could be anything from admission to a museum, access to a provincial park, a pottery class or connection to community programs like a support group or a peer mentor,” she said. “so when you see your doctor because you are feeling overwhelmed, you not only get a prescription for medication, the doctor has a conversation with you about what will help you recharge and reconnect, and you leave with a prescription for free access to arts, culture, nature, community supports – whatever will help you fill your cup.”
with these supports, caregivers can get the help that’s missing in the current health system, allowing them to maintain their wellbeing while also caring for their loved ones to the best of their abilities.
“we know that across the board, there is little recognition of caregiver needs in our health system. when a caregiver is at a medical appointment with the person they care for, they are rarely asked how they are doing and what they need to support the person they love,” said mendelsohn. “by working with healthcare providers to raise awareness of these needs, we can connect caregivers to support networks and other interventions they may need to feel whole sooner.”
wile appreciates the caregiver focus from organizations and programs dedicated to helping those who sacrifice so much to help others. the effects on her ability to consider herself after being active in social prescription programs has worked wonders.
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“when people think about being a caregiver, you have to think about yourself. and i think that’s the number one thing. that’s where i struggle, but i’m working on it. it’s not just about them; it has to be about you.”
“it’s taken me a few months to get to that point (of putting herself first), and i’m still not quite all there. but now i’m realizing the more that i’m talking to them, my people, is how true is that?” she later continues, “i don’t take as much credit for myself as i do for the program.”
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