January 10, 2019

Challenges of Being Compensated as an Informal Caregiver

Family members who step up to take care of an ailing loved one make many sacrifices. They sacrifice time, energy, resources, part of their identity, and, in many cases, the ability to work. A high number of caregivers — about 68 percent — report making work...

Family members who step up to take care of an ailing loved one make many sacrifices. They sacrifice time, energy, resources, part of their identity, and, in many cases, the ability to work. A high number of caregivers — about 68 percent — report making work accommodations because of caregiving, including arriving late or leaving early, taking time off, cutting back on work hours, changing, jobs, or stopping work entirely (AARP). These adjustments made by caregivers end up impacting caregivers financially, with an estimated cumulative loss of more than $300,000 in earnings and benefits over the course of an earnings lifetime (Casa Companion).

However, regardless of the financial impact, unpaid caretakers are actually integral to our nation’s healthcare system. Family members who take on the role of informal caregivers are estimated to save our nation’s healthcare system $470 billion per year — a bill that the healthcare system simply couldn’t pay (Casa Companion). With this in mind, support is growing for publicly funded payments to informal caregivers.

According to “Paying Family Members to Provide Care: Policy Considerations for States” — a policy brief provided by Dr. Polivka, the Director of Florida Policy Exchange Center on Aging — support for paying caregivers is generally expressed as advocacy for consumer-directed care (CDC) approach to long-term care (LTC). The CDC approach is designed to empower the impaired person and the informal caregiver(s). Above all, the ability to choose and pay caregivers is considered the core component of CDC. And empowering impaired persons is important — CDC strengthens the informal system of care, is more cost-effective than the usual agency-directed services and especially suits the next generation of elderly, the baby boomers.

Along with these benefits, there are three ethical rationales for paying informal caregivers:

1. To recognize the value of human autonomy.
2. To nurture the autonomy of impaired persons, including the frail elderly, by providing LTC in the least restrictive manner possible.
3. To recognize and support informal caregivers by providing some compensation for the indispensable care they provide to impaired individuals.
4. Paying caregivers expands access to the least restrictive form of LTC and increases opportunities for impaired individuals, as well as caregivers, to exercise autonomy (Polivka).

However, even though steps are being taken in the right direction of providing compensation for caregivers, that doesn’t mean it won’t come with its own challenges. Money disputes are at the heart of many families’ caregiving conflicts. So, how do caregivers navigate the challenges of being compensated?

In the article “Getting Compensated for Caregiving Can Change Family Dynamics,” Barry J. Jacobs addresses the issues that can arise when a family caregiver begins to be paid for their caregiving duties. Jacobs relates an example of a family caregiver named Alicia who had become certified as a home health aide so she could receive an hourly wage for caring for her mother who suffered from Parkinson’s disease. The money wasn’t much, but it was enough to help cover some bills while she dedicated the majority of her time to caring for her ailing mother. However, after becoming certified, Alicia’s sisters seemed less interested in pitching in with caregiving tasks, since now this had officially become Alicia’s “job.” Even Alicia’s mother seemed to ask more of her, as if she were hired help instead of her youngest daughter.

This new situation can put even more stress on Alicia, as conflicts about duties and money arise with her sisters, and she begins to feel less and less like a daughter and more like the hired help.

However, as discussed earlier, being a family caregiver can take a heavy toll on the finances, so in many situations, the compensation is needed. How can family caregivers earn a modest wage for their responsibilities, while not being viewed as mercenaries by other family members? Jacobs highlights four things to consider:

1. Demonstrate transparency.

Many people tend to keep their financial information private, even among family. But because caregiving is a family effort, it’s important to remain transparent about money. If you’re profiting in some way from a parent’s need for assistance, let your family know, tell them exactly what you’ll make, and share exactly how this money will help offset the costs that you pay through your caregiving activities — lost salary, gas money for driving to medical appointments, copays, medications, etc.

2. Keep in mind what others think is fair.

Some other family members might believe they are making the same sacrifices as you are, and deserve to compensated as well. It might seem unfair that you are the one to get the money for duties that seem to be shared. Don’t invalidate or disagree with their feelings. Instead, empathize and let them know how much you value their help in caregiving. This doesn’t mean you have to hand over any of your newly-earned cash to prove it. Just focus on your appreciation that you work as a team to help your loved one.

3. Preserve your relationship.

When a caregiver is making money to help out, a care recipient might be more likely to treat relatives with impatience or bark out orders. Even though you’re “on-duty” though, it’s okay to communicate to your loved one that you’re not just an employee. You’re there for love, not for money, and let your family member know that you expect your personal rapport to not be changed just because you are now being compensated.

4. Weigh the money’s worth.

In some families, there would be no issues with one person receiving a caregiving salary — the whole family would be thrilled. For other families, there would be no end to resentment, jealousy, or fights. Figure out for yourself whether working as a loved one’s home health aide is worth. If it isn’t, don’t be resentful. Instead, be consoled that family peace may be of greater value to you than any amount of compensation.

When comparing the stressors of being compensated for caregiving duties, family fights are one of the major problems. However, they’re not necessarily the largest stressor. Rather, the largest stressor is linked to identity — how you see yourself. Are you a daughter-in-law, or a full-time caregiver? How do you juggle the discrepancy between all of your identities? Being compensated for caregiving duties can create more of a separation between a caregiver’s role in the family and their role as a caregiver. TCARE, initially developed at the UW-Milwaukee by renowned gerontologist Dr. Rhonda JV Montgomery, Ph.D., is a program that has been able to apply research on identity discrepancy to address caregiver stressors successfully.

Through a proven care management platform, TCARE’s evidence-based system of assessing caregivers, tailoring care plans, referring the right resources at the right time, and weekly check-ins for caregivers has shown great success with those who have used the service. Eighty-four percent of caregivers reported lower levels of stress and depression after a TCARE intervention, in as little as six months.

By taking the time to address the issue at its source, those who are experiencing challenges as caregivers can improve their situation — ultimately learning how to manage their new roles in the family, the financial burdens of caregiving, and all the stress that comes with it.

If you are wondering how to get paid as a family caregiver, realize that every location will have its own policies and programs. If you need help finding a place to start your research on what’s available to you, click here for more information.

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