The Toll of Being a Family Caregiver

A Northwestern Mutual survey shows the many pain points

By Richard Eisenberg, Next Avenue
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In The Disaster Artist film, the recent send-up of The Room, James Franco’s character Tommy Wiseau cries out: “You’re tearing me apart!!!” After reviewing a new Northwestern Mutual study of caregiving in America, I felt that many of the nation’s 40 million family caregivers must be feeling this way — about the cruel toll their caregiving for loved ones is taking on their finances, their careers and their relationships.

“Depending on the nature of the care that’s required, it can really derail or change the whole landscape of how an individual goes about the day-to-day world,” said Kamilah Williams-Kemp, vice president, long-term care at Northwestern Mutual. “I don’t know if people realize the full extent they may be required to step in and lend a hand.”

Speaking from personal experience, I agree. And so do many Next Avenue readers. In a recent post featuring their family caregiving stories of hardship and hope, one wrote: “Caring for my mom turned my world upside down.”

The Toll of Family Caregiving

For the Northwestern Mutual C.A.R.E. Study (Costs, Accountabilities, Realities, Expectations), Northwestern Mutual and Harris Poll surveyed 1,004 adults and came up with some startling figures about how family caregiving is taking a toll:

The toll on the finances of family caregivers:

  • 68 percent of family caregivers provided financial support (93 percent provided emotional support and 90 percent provided personal care support, such as hygiene and chores); an earlier Merrill Lynch/Age Wave study, The Journey of Caregiving, also found that 68 percent of family caregivers are “financial contributors,” spending an estimated $190 billion a year on their care recipients for out-of-pocket, care-related expenses.
  • 67 percent of those who’ve incurred expenses for caregiving have had to reduce living expenses to provide care
  • 63 percent of them have withdrawn money from savings or cashed in or sold assets to provide care
  • 32 percent of them have stopped or reduced contributions to savings to provide care (Merrill Lynch and Age Wave call this an “indirect” financial cost of caregiving)
  • 21 percent of them have borrowed money to provide care

And 34 percent of them spend between 21 and 100 percent of their monthly budget on caregiving expenses. (A 2015 AARP study found that caregivers for people with Alzheimer’s or dementia spend, on average, 54 percent more than the average caregiver.) “I believe individuals who are new to caregiving don’t understand how they’re going to be expected to chip in,” said Williams-Kemp.

The toll on the careers of family caregivers:

  • 41 percent of caregivers have reduced their work hours or changed their schedule/shift to provide care
  • 13 percent have resigned their jobs to provide care
  • 9 percent have changed jobs or careers to provide care

Said Williams-Kemp: “The time-sensitive nature of caregiving is somewhat unexpected for caregivers, especially boomers who can find their careers interrupted pretty significantly.”

The toll on the relationships of family caregivers:

  • 62 percent of caregivers said they have to make choices between spending time with friends and providing care
  • 57 percent of caregivers said they have to make choices between spending time with a spouse or partner and providing care
  • 49 percent of caregivers said they have to make choices between spending time with their children and providing care

Two Disconnects About Family Caregiving

The survey also uncovered a striking disconnect between what people say about their expectations of incurring caregiving costs and their taking steps to plan for that possibility.

Nearly 6 in 10 (57 percent) of those who believe they will provide care in the future expect to incur personal costs for it, but 48 percent haven’t planned for that at all. The percent who haven’t planned has risen since the 2016 Northwestern Mutual survey,  when only 35 percent said they hadn’t planned for caregiving costs. “I was surprised by that,” said Williams-Kemp. “I had hoped the number would be going the other way.”

Her explanation: “Caregiving is kind of viewed as their only option,” said Williams-Kemp. “So along with that mindset comes a feeling that ‘I’ll just muscle through whatever the financial implications are.’”

Williams-Kemp speaks from experience. The Northwestern Mutual long-term care VP told me her mother recently had a brain infection that was a “weird side effect from a chronic sinus infection,” which led to brain surgery, hospitalization, rehab and then a stay in Williams-Kemp’s home for recovery.

“With all the specialists — the neurologist, the ENT follow-up, speech therapy, occupational therapy, you name it — thankfully, I had flexibility at work and a great support system with my husband and family. So I could make sure that my mother could go to all the appointments she needed and get her medication administered and keep an eye on her,” said Williams-Kemp. “I can just imagine if I didn’t have that ability. If it all falls on one or two caregivers, it absolutely has an adverse impact on their ability to earn an income and be focused on the things that used to be important to them.”

Another disconnect Northwestern Mutual found in the virtual wiring of family caregiving: Most Americans know who they expect will be their caregivers one day, but few have told these people.

In the survey, 47 percent said their spouse or partner will be their likely care provider; 27 percent said family member(s) and 26 percent said their child or children. But 69 percent have not spoken to anyone about their preferences for their own care.

That could prove problematic if they need caregiving and the person they were counting on wasn’t expecting to provide it, won’t provide it or can’t provide it.

“It’s so critically important to have conversations with family members about this,” said Williams-Kemp. “That way, if situations arise, there will be an understanding of what an individual’s wishes would be and how the person envisions the administration of care, so there will be as few surprises as possible.”

In one of my previous blog posts, Age Wave founder and CEO Ken Dychtwald recommended asking your parents whom they want to handle the different aspects of their care. “Why should we imagine it has to be one person as the master of all things?” he asked.

Failure to Prepare for Caregiving Costs

The Northwestern Mutual survey also found, as other surveys have, that few Americans are taking steps with their personal finances to prepare for the chance they may need to pay for caregiving. Only 52 percent of the Northwestern Mutual respondents said they’d included provisions in their financial plan, such as thinking about ways to reduce expenses or earn additional income.

The lack of planning is a key reason why so many caregivers have resorted to tapping their retirement savings, borrowing money or selling assets to accommodate caregiving, Williams-Kemp said. “Once you’re in a stressful situation, sometimes the easiest financial path is not always the best one. I like to think that with pre-planning, in the initial years of caregiving, you won’t have to take such drastic measures,” she added.

Getting Help With Caregiving Costs

If you’re paying some family caregiving expenses, you might look into whether your state has a program that could help you. For instance, Washington state has a new Family Caregiver Support Program that offers up to $550 a month in free services to support unpaid caregivers helping someone 55 or older, according to a recent article in The Spokesman-Review.

And if you’d like help paying for potential future expenses for your own long-term care or your spouse’s, you might investigate buying a hybrid long-term care/life insurance policy. Morningstar.com has an excellent article about these policies, noting that a 50-year-old woman could buy one with annual payments of $5,000 over a 15-year period.

Only 22 percent of the Northwestern Mutual respondents said they expect to become caregivers in the future. Many of the others, however, are likely fooling themselves about their prospects.

“I think people are grossly underestimating whether they’ll become caregivers,” said Williams-Kemp. “If you look at industry statistics, they estimate that 60 to 75 percent of people over 65 will require some kind of long-term care.”

Next Avenue is a website from PBS stations designed to inspire America’s booming 50+ generation to live the most meaningful and vibrant life possible. Follow us on Facebook  and on Twitter @NextAvenue.

This article is reprinted with permission. © 2018 NextAvenue.com. All Rights Reserved.

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