The phenomenon is not exactly marginal: according to a recently released government report, one in every three workers in Canada is assisting a chronically disabled person -- many of them seniors -- with transportation, household maintenance or day-to-day tasks. The 6.1 million employed workers who are providing such care, free of charge, to a family member or friend are more likely to experience interruptions at work and to arrive late or even be absent from work. Many are less available than they would otherwise be to work overtime, travel for work or advance their careers.
Without a doubt, the impacts of informal caregiving commitments do not remain confined to the home: they are felt in the Canadian workplace and reduce productivity. They translate into 2.2 million hours of reduced effort in the workplace every week and cause an estimated $1.3 billion productivity loss annually, says the report.
With the anticipated growing numbers of seniors requiring care, the costs of unpaid caregiving and reduced productivity will likely expand over the next two decades. What should we do about them?
As Canadian employers are increasingly confronted with the reality the work of informal caregiving has on their employees, it only makes sense that they should be the first to recognize and support informal caregiving. Some of them already offer flexible arrangements (e.g., compressed work weeks, work from home, unpaid and even paid leaves) to employees with caregiving commitments. This said, not all employers are equally supportive, if at all, and many Canadian workers with caregiving responsibilities are paying the price: reduced income, career limitations and exit from the labour force.
A year ago, the federal government established the Employer Panel for Caregivers which consulted with employers to help them find ways to better support their employee caregivers. The consultation was premised on the (realistic) assumption that unpaid care will remain the main source of long-term care in this country.
The most significant insight it gained is this: while employer support to employee caregivers may foster engagement and greater retention in the workplace, there might not be a business case for many employers to voluntary engage in this. Put another way, moral appeal and compassion for employee caregivers will not translate into a massive, spontaneous movement in the Canadian workplace to address the issue any time soon.
What else is needed? Should the costs of caregiving and reduced productivity belong uniquely to caregivers and their employers?
It is becoming increasingly difficult for Canadian policymakers to ignore their own essential role -- beyond that of offering limited and sporadic supports -- to address the issue.
Confronted with a similar situation, the United Kingdom, Australia and New Zealand have, in recent years, adopted national caregiver strategies. At home, Manitoba and Nova Scotia are leading in many ways, but efforts across the country remain fragmented and inconsistent.
Canada can do better.
Needed as part of a national strategy are integrated policy instruments to support caregivers and their employers. First, Canada's workplace legislation, which is primarily a provincial jurisdiction, needs to ensure minimum standards to protect workers with caregiving commitments. Second, we also need a comprehensive set of financial instruments -- possibly a combination of private or public programs - to better protect the workers' incomes and their employers' productivity losses. Third, more substantial coverage of homecare, nursing care and supportive services (e.g., adapted transportation or supervised day centers) for the disabled is an essential component that would benefit everyone.
Is this financially realistic? Policymakers still need to recognize the undeniable costs of unpaid caregiving. So the real question should be instead: How should these costs be shared?
Caregivers are already contributing a lot: A study estimated that if governments had to pay for caregiving provided free of charge by people 45 and over in this country, it would have cost about $25 billion in 2009.
Some argue that governments should compensate caregivers. I don't think they should. But governments do need to ensure that while providing unpaid caregiving, workers never incur catastrophic income losses or lose their jobs as a result.
Financial and in-kind supports are critical especially when caregiving commitments extend to several hours a week over a long period of time. This should be covered by public programs.
Instead of having a situation where we have some employers who provide workers with coverage and some not, only a coherent national strategy will allow Canadian workers looking after a spouse or relative to better focus on their work, their employers to better focus on their mission and disabled persons to get the care they need.
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When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.
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