The Unforeseen Costs Of Family Caregiving
Angelica P. Herrera-Venson, DrPH
No one denies that caregiving comes with challenges. Of course, it does. There’s no easy way to support someone day in and day out.
However, the true costs of caregiving are often pushed into the background. It’s still far too easy to focus on the idea that caregiving is rewarding and miss the heavy price caregivers have to pay.
Some of the negative impacts remain even long after the care recipient has passed away.
We’re not just talking about financial costs either, although that’s where we’ll begin. Caregiving has plenty of other effects as well, including impacts on physical, mental, and emotional health.
Policymakers, advocates, and even family caregivers themselves often fail to realize the magnitude of costs and how they can present challenges down the line. Yet, understanding these impacts is crucial.
Without truly digging into all the costs of care and responsibilities that caregivers face, it’s impossible to make changes for the better.
What is the Financial Impact of Caregiving
Let’s begin with finances. While the impact on one's finances certainly isn't the only impact that caregivers report, they are considerable.
Care recipients often have some money of their own, whether from savings, investment income, Social Security, or some other source. They also have other forms of support, including Medicare and perhaps also Medicaid, which can help with health care costs. Yet, such money is rarely enough to cover all of their needs.
In fact, in a 2021 study, the AARP discovered that almost 80% of caregivers had some regular out-of-pocket costs from caregiving, often totaling more than $7,000 per year. That’s a lot of money, even for working caregivers who still have full-time jobs.
The costs aren’t limited to family caregivers who live with the older adult they’re supporting. Even those who support their senior loved one long-distance may be regularly shelling out money and helping cover costs associated with food, transportation, medical expenses, or even rent.
Whether large or small, these expenses add up. Indeed, some caregivers end up spending around 26% of their annual income to support their loved ones. Families that were only just making ends meet before suddenly find themselves with increased costs and must put out all stops to find solutions.
The situation can get complicated and overwhelming fast.
The pandemic has only made matters worse, with rising costs increasing the financial burden for many families while decreasing options for external support such as adult day care and respite care.
Sometimes the costs can be astronomical, especially for seniors with Alzheimer’s and those who need help with the activities of daily living. Such seniors may not even be safe on their own, especially as their health declines, so caregivers must decide whether to continue to work or hire home health aides or other professionals for support.
There are some sources of financial support, true, including Medicaid-based programs that help with aging at home. It’s even possible to get paid as a family caregiver in some situations. However, finding such support comes with its own challenges, and the amount provided may be much less than the family needs.
Financial Strain Plus High Workload
The financial expenditures are only one part of a much larger equation.
Not only are family caregivers paying out-of-pocket costs, but they’re also providing practical caregiving support. They need to be there for their loved ones, often with little notice. This may mean needing to suddenly leave work because a loved one had a fall or taking an afternoon off to help with a doctor’s appointment.
The caregiving role can easily take 10 hours a week or much more. The time and emotional load can quickly stack up, especially on top of a full 40-hour work week.
Life quickly becomes a balancing act, with working caregivers needing to juggle caregiving and work, while also trying to fit personal care and the rest of their life into the balance.
To do so, caregivers often need to decrease their work hours, sometimes dramatically. Some may switch from full-time work to part-time. Others may drop out of the labor force entirely.
Even those who continue to work may take paid and unpaid time to meet their loved one’s needs. Productivity can decrease too, often dramatically, which can lead to problems at work and missed promotions.
These challenges can quickly lead to an overwhelming financial situation, where caregivers must scramble to make ends meet and feel like they are constantly falling behind.
Such patterns are bad enough in the short term. They get worse as time goes on, as caregivers aren’t able to save for their own future. There may also be little money saved for any unexpected needs, including health crises.
Health costs may also increase as the senior ages and struggles more, which only raises the financial burden.
It’s an overwhelming environment for many caregivers and care recipients.
What is the Non-Financial Price of Caregiving?
Financial challenges have another impact too. They create pressure.
Being in a difficult financial situation for months, years, or even decades can be incredibly stressful. Indeed, financial strain often causes problems in relationships and can dramatically impact mental health as well.
The same is true for other aspects of caregiving. In fact, caregiving comes with considerable mental, emotional, and physical challenges that can cause dramatic long-term harm.
Such challenges are sometimes overlooked when we talk about the costs of caregiving, but they’re just as important as the financial costs.
Thrown into a Difficult Situation
Part of the problem is that caregivers are overworked, overwhelmed, and underprepared.
Being a caregiver, especially one that helps with the activities of daily living, is a skilled role. There’s a lot to learn, like how to deal with unpredictable behavior, what to do when seniors show signs of incontinence, how to recognize serious health problems, and what to do after a fall.
Professional caregivers are trained. They’re taught how to provide care and how to do it well.
Most family caregivers don’t have this kind of training. Instead, family caregivers usually learn on the job, which can include figuring out how to respond to a crisis as it unfolds. There’s a ‘fly by the seat of your pants’ aspect to this that can feel incredibly disconcerting.
Caregivers often carry a lot of guilt too, when they feel like they’re not doing well enough. Some feel like they’re constantly failing as a caregiver, a son or daughter, and even as a person. Such guilt can lead to the caregiver pushing themselves further and neglecting their own needs.
Professional caregivers also get to go home at the end of the day. They have the chance to switch off from their caregiving role and maintain a work-life balance.
In contrast, some family caregivers are in the role 24/7, especially if other family members aren’t heavily involved. Others may only provide hands-on care for a few hours each day or week, but still regularly worry about their loved one, making it difficult to fully switch off.
Caregivers Struggle to Meet their Needs
Self-care has long been recognized as one of the most essential aspects of caregiving. It’s also incredibly difficult to do in practice.
Family caregivers regularly find themselves choosing between their needs and those of the care recipients. It can feel like there simply aren’t enough hours in the day for both, especially if the senior’s care needs are intense.
When this happens, caregivers often hesitate to prioritize themselves. Doing so can feel awful or even completely impossible. After all, if the senior can’t safely be left alone and has unpredictable needs, caregivers have few options for getting away.
Sometimes the level of self-neglect can be dramatic. An article at AARP.com talks about a caregiver who regularly failed to manage her diabetes well, as she was so focused on caring for her mother. Indeed, many caregivers struggle with their healthcare needs, often missing doctor’s appointments and not filling medications due to lack of time and money.
Similarly, caregivers often find themselves struggling to get enough exercise, maintain social connections, and even leave the house.
Such patterns can quickly lead to physical and mental health issues for the caregiver, some that last long after caregiving has ended. It’s not surprising that the National Alliance for Caregiving reports that the health of family caregivers suffers, often declining in relation to the intensity of their caregiving role.
While most caregivers know they need to care for themselves better, there’s a huge gulf between theory and practice. Part of the problem is that their caregiving responsibilities are too great and help is limited. They simply don’t have enough time and resources to effectively care for themselves
There are some supports that may make some things easier, but these are far from a complete solution.
Adult daycare is one example, which may give caregivers a brief respite. Yet, sometimes the amount of effort it takes to convince the senior to go to such a program and get them ready negates any benefits of time apart.
Similarly, respite care programs exist, but they’re challenging to connect with and may not provide as much support as the caregiver needs.
Those are just a couple of examples. There’s an endless string of unexpected difficulties in caregiver self-care.
Plus, caregivers who are exhausted and overwhelmed may not have the mental capacity to figure out how to support themselves better.
The Long-Term Impacts of Family Caregiving
The effects of caregiving aren’t limited to the short term. Many have long-reaching impacts and continue far past the end of caregiving.
Financial challenges mean that caregivers are saving less money for their own retirement and have fewer resources for their long-term needs. Such issues are particularly significant for Hispanic and African American caregivers, who are already disadvantaged in the workplace and may earn less.
Some people also end up caring for one family member after another, like supporting an aging mother, then a father, then a father-in-law. Patterns like this drain financial and emotional resources, often leaving the family caregiver with little to no resources for themselves after their caregiving role has ended.
People who leave the labor force for caregiving often find themselves out of touch and underskilled. After all, how can caregivers hope to keep up-to-date with skills and industry trends when supporting themselves and their loved ones becomes an overwhelming task?
This, coupled with their gap in employment history, can make work difficult to find when caregiving ends. Even when caregivers do find employment, it takes time to reach their former levels of pay and reputation, if they ever manage to do so.
Then there’s the toll on the caregiver themselves. The mental, emotional, and physical costs of caregiving can take years to recover from.
Are there solutions?
Caregiving is an essential part of our society. Roughly 48 million Americans provide unpaid care to friends or family members and often pay a heavy price to do so.
Thankfully, caregivers aren’t entirely on their own. There are many programs and other sources of support throughout the nation, including Medicaid Home and Community Based Services (HCBS) and programs run through local governments. Some programs are well-known, but others are obscure and are often overlooked.
Long-term care insurance or a long-term care rider on health insurance are options too. However, these aren’t relevant to all seniors and involve planning ahead of time.
The mere presence of these different services isn’t enough, caregivers still need to find and access them, which presents a whole new set of challenges.
In particular, the programs are often run by different organizations and frequently have highly specific eligibility requirements. Caregivers and older adults must find and apply for most programs individually – a process that can quickly get exhausting.
After all, caregivers often have precious little time to spare. What family caregiver wants to spend that time on application forms that probably go nowhere?
The Federal Government has also developed a national strategy to provide extra support for caregivers. However, it will take time for such support structures to be fully put in place and to help caregivers in a practical way. Even then, caregivers may still have a confusing collection of resources to attempt to navigate.
Despite the initial legwork, caregivers can still successfully connect with support programs. Doing so can make life less overwhelming, decreasing a few of the financial and emotional costs of providing care. Emotional support helps too, whether through caregiving forums, a support group, a therapist, or some other means.
However, in some cases, the answer may be that family caregiving is simply no longer viable.
In-home care from a professional caregiver may help for a while, but this is expensive and has its limits. Perhaps the senior’s health has deteriorated to the point where they need help with most activities of daily living, or they may be progressing into the later stages of Alzheimer’s disease. Other times, the family caregiver simply isn’t able to cope anymore.
In these situations, assisted living, a nursing home, and similar care providers become crucial alternatives. These can support seniors in a way that family caregivers simply can’t.
While most seniors would prefer to age at home rather than move to assisted living, the transition is often essential. It’s important for caregivers to be self-aware and recognize when elder care is becoming overwhelming and when it’s time to focus on their own well-being.