The Real Cost of Caring for Your Loved One

By Susan Davis   |   November 9, 2017

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Caregivers are America’s underappreciated heroes. When an aging parent or sick family member needs care, the family caregiver comes to the rescue. They set aside their own lives, families, and jobs to work long hours caring for their loved ones. Family caregivers are stretched thin, stressed out, and often at the end of their rope. Yet they do it all without pay. Plus they often pay out of their own pockets to keep their parents at home or move them to a better facility than their loved one could afford on their own. Why do they do it? (We confess that we asked that same question when caring for our loved ones, too.)

ARE FAMILY CAREGIVERS SAINTS?

We may like to think that caregivers sacrifice so much solely out of love. Of course we love our parents, but there are some unholy statistics behind all this selflessness:

senior care statistic

So if you’re caring for an aging parent, you’re not alone. There are nearly 44 million family caregivers in the U.S. A family caregiver is often all that stands between an aging parent and a nursing home: half of seniors who don’t have family to care for them wind up in nursing homes, while just 7% of those who do wind up in institutional settings.

It’s no wonder that HALF of all caregivers said they had NO CHOICE in becoming a family caregiver.

DO YOU FIT THE TYPICAL CAREGIVER PROFILE?

The typical caregiver is a 49-year-old woman caring for an older relative (although among millennials, family caregivers are equally likely to be male or female). On average, they provide care 24.4 hours per week for 4.3 years, even though nearly half of all caregivers work full time jobs. The overwhelming majority (69%) of working caregivers have to rearrange their work schedule, decrease their hours, or take unpaid leave.

THE ECONOMIC VALUE CAREGIVERS PROVIDE

Of course, a family caregiver can provide the kind of care only a loved one can. From that perspective, the value family caregivers provide is incalculable. But what about the economic value of the work these heroes do?

caregiver statistics

That astronomical figure is roughly equal to what the U.S. government spends on Medicaid each year —or the entire GDP of Belgium (ranked #37 worldwide in 2016 by the World Bank).

THE SACRIFICES CAREGIVERS MAKE

Whether you’re at your loved one’s bedside or coordinating care, it’s a stressful job. While you’d expect caregivers to suffer burn out and need ample support during their own season of caregiving, you might not know ALL the enormous costs that come with caring for your aging parents or sick family members.

THE MASSIVE FINANCIAL COST − LOST WAGES & BENEFITS

Family caregivers often work around-the-clock without pay. The demands of caring for others often force them to put their loved one ahead of their work, too. But you may be surprised at just how big a price caregivers pay when caring for others:

Reducing your work hours, passing up that promotion, or even retiring early can take a massive bite out of saving for your own retirement or even your own future care needs. And that number—more than a half million dollars—does NOT include whatever money YOU are contributing out of your own pocket to help care for your loved one.

CAREGIVERS OFTEN MAKE UP THE SHORTFALL FOR THEIR PARENTS

Most families—even those approaching retirement—have little or no retirement savings. Of course, there’s a huge disparity between the ‘haves’ and the ‘have-nots’:

2013 Retirement Account Savings
U.S. families age 32–61 by savings percentile (2013 dollars)
80th percentile: $116,000
90th percentile: $274,000
99th percentile: $1,080,000

But even those in the top 1% who have saved a significant amount could find they’re short of the money they need to fully fund their own care needs—especially if they live long or get Alzheimer’s or other forms of dementia which increases care costs. In addition to soaring healthcare costs, at least two other trends can lead to unexpected shortfalls:

    1. Investment risk: People who rely on their retirement savings (401(k)s, IRAs, and Keogh plans), and especially baby boomers nearing retirement, can be hit hard by economic downturns. Nearly 3 in 10 baby boomers have pensions (public and private), but most younger workers have defined contribution plans.
    2. Unpredictable Costs: Costs of care are high—and rising faster than inflation (as of 10/2017).

Scared yet? Good! We hope this information motivates you to start planning—either for your parents’ care or your own. Because aging and illness happen to ALL of us. We can’t avoid death, but we can plan to make our own season of caregiving the best experience possible for our loved ones and ourselves. But so far, we’ve only talked about the financial costs. Let’s be brave and look at other costs.

THE SURPRISING PERSONAL COSTS

Let’s pivot to the personal costs, which are downright terrifying. Most caregivers are ill prepared for their role. They’re often forced to jump into the role by a health crisis—Mom fell and broke her hip!—and provide substantial care with little support and no medical/other home health training. The stress takes a physical toll that can lead to serious health problems, even death.

CAREGIVERS HAVE HIGHER MORTALITY RATES

Caregivers literally put their lives on the line:

  • Older caregivers: 70% of all caregivers over age 70 die before the patient does. That’s alarming for the caregiver and loved one alike.
  • Alzheimer’s caregivers: 40% of Alzheimer’s caregivers (regardless of age) die from stress-related disorders before the patient. And Alzheimer’s caregivers have a 63% higher mortality rate than non-caregivers.
  • Spousal caregivers: People who provide support to their spouse and report caregiving strain are 63% more likely to die within 4 years than non-caregivers.

WHAT DOESN’T KILL YOU …

Doesn’t always make you stronger. And certainly not for caregivers. The physical and mental health issues that caregivers experience are undeniable and often unremitting:

  • Caregiver Syndrome: The symptoms caregivers experience arise so frequently medical science has given this condition its own name. Caregiver Syndrome is “a debilitating condition brought on by unrelieved, constant caring for a person with a chronic illness or dementia.”
  • Premature aging: Extreme stress can cut as much as 10 years off a caregiver’s life.
  • Anxiety, depression, and chronic disease: Family caregivers are more likely to experience these serious health issues than non-caregivers.
  • Compromised immune systems: Long-term caregivers have disrupted immune systems—even as long as 3 years after their caregiving roles have ended.

Despite their own health problems, more than one third of caregivers continue to provide care to others even while suffering from poor mental and physical health themselves. (Maybe they’re saints after all.) We’re often blind to the caregivers’ own health problems because we focus instead on the loved one who’s receiving care, but the serious health problems caregivers suffer can ripple across families.

CAREGIVING CHALLENGES CAN TEAR FAMILIES APART

Family stress compounds caregiving, and there are usually multiple families who suffer when a loved one needs care:

    • The caregiver’s family of origin (parents and siblings);
    • The caregiver’s neglected family (spouse and children); and
    • Extended family.

And the statistics confirm what most of us already know. All. Too. Well. Caregiving creates a lot of family drama. Nearly half of all families say family dynamics complicate caregiving by:

  • Dumping the responsibility on one person: Nearly half (43%) say their inability to work together makes one sibling (you?) responsible for the bulk of caregiving.
  • Straining sibling relationships: Unspoken family roles create an environment rife with strife, so much so that nearly half (46%) say that their sibling relationships have deteriorated because their brothers and sisters were unwilling to help shoulder the caregiving burden.
  • Failing at this important job: Nearly half (42%) of family caregivers give themselves and their siblings below-average grades for their ability to divide the caregiving workload.

That’s a lot of “nearly halfs” and far too many families suffering.

THE ADDED STRESS OF ALZHEIMER’S

All these caregiving challenges are amplified by the looming specter of caring for a loved one with Alzheimer’s or other forms of dementia. According to the Alzheimer’s Association’s 2017 statistics,

  • 1 in 3 Americans die from Alzheimer’s disease (6th leading cause of death),
  • More than 5 million Americans are living with Alzheimer’s, and
  • 16 million Americans could have Alzheimer’s by 2050.

Unless we have a medical breakthrough, that’s the reality that awaits many of us as caregiver OR patient.

CAREGIVING – A STUBBORN CYCLE

The last thing most aging parents want is for the family to fall apart after they’re gone. Yet with no planning, scarce information, and little help available to those in their own season of caregiving, the stress of caring for aging parents can strain family relations to the breaking point.

caregiving needs

The people we’ve talked to wouldn’t wish the strain they’ve experienced as caregivers on their own children, but when their own time comes, the painful cycle often repeats. Without the help of someone who’s been there before, caregivers often find themselves suffering in silence and feeling isolated, even hopeless.

SEASONS OF CARE: HOPE & HELP FOR CAREGIVERS, PLANNERS & THEIR FAMILIES

Whether it’s Alzheimer’s or another form of dementia, cancer, heart disease, an accident/injury or other health emergency … an unexpected hospital trip can rapidly become a need for long-term care. This massive disruption creates stressful challenges for caregivers and families.
Two years ago, our clients told us they desperately needed help:

Dealing with my parents’ aging and all the related issues affected everything in my life. I felt like I was living in a high-speed wobble.

We listened. Building on our expertise in finance, financial planning and behavioral wealth management, we went to work. For two years, we researched this complex topic and gleaned wisdom from our own experiences, experts, and other family caregivers. Here’s what we discovered:

Failure to acknowledge our mortality, poor planning, stress, family issues, and few trusted resources can (and do) worsen the caregiver’s plight and ripple across family relationships.

Yet with the right framework, preparation, and guidance, you can transform this time of stress, grief and loss into a time of love, compassion and respect, a time in which you and your loved ones feel valued. As eldercare advocate Mary Jo Saavedra put it:

Everything you learn will translate into empowering your elder to live purposefully until the end of his or her natural life and to be valued for his or her important wisdom and gifts…. You, ultimately, will be rewarded the gift of saying goodbye in the best way possible.

Susan Davis

About the Author

Susan Davis began her career as a financial advisor with JOYN in 1991 and now serves as EVP/Chief Compliance Officer. Her personal experience with caregiving -- two very different experiences with her father, then mother -- have fueled her passion for "Seasons of Care." She has devoted more than two years developing the program and leads workshops with humor, knowledge and grace.

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