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I often refer to my 89-year-old mother as the Energizer Bunny. She’s always on the go and is good at recharging her reservoir of energy. While her walking is limited, my mom still drives and enjoys running errands. On a recent trip to the supermarket, my mother encountered a sudden unexpected storm as she left the store. “There were buckets of rain,” my mother recalled. “Fortunately, a nice woman helped me load my groceries into the car and I managed to get home safely.”
Providing caregiving for your parent is a profound life-altering shift of roles that requires balancing the right to self-determination with the recognition that your mother and father need help. One of the biggest frustrations for adult children is that they come up with a plan that makes perfect sense to them but their parent says, “Thanks but no thanks.”
She was voluptuous, kind and capable. She never quarreled or got upset. She could whip up a delicious five-course meal (with two meat dishes—a celebration in our tradition!) and then enjoy a game of tiddlywinks. And she always, without fail, made my father happy.
Yes, I loved my father’s mistress. As did my sister and brother. And my mother loved her too.
It began years ago when my father wandered off from a family gathering and became disoriented. Things started to add up: missed appointments, mistakes with the bills, getting lost driving to the post office. At 74, my father was diagnosed with dementia.
As he worsened, my mother transitioned to the role of full-time caregiver. I did what I could, visiting regularly to help out, but I always felt I wasn’t doing enough. Eventually, my mother could no longer care for my dad at home. We made the tough decision. It was time to move my father into a nursing home, where he spent the remaining years of his life.
My father had a PhD in psychology, was a beloved graduate school adviser and was constantly reading and learning. But in the nursing home, he was confined to a wheelchair with little to occupy his once vibrant mind. To pass the time and combat the isolation of dementia, he came up with a remarkable solution. He found an ever-present companion who would always engage him, an imaginary mistress named Cunegonde (pronounced kuh-nee-GUND-uh).
Cunegonde is a fictional character from Candide, written by the 18th-century French satirist Voltaire. Cunegonde was initially idolized by Candide, the illegitimate nephew of a German baron. She was perceived as beautiful, virtuous and attentive, all qualities that my father’s imaginary mistress possessed—and then some.
Well, you can imagine my mother’s shock when she found out that a beautiful young paramour had been entertaining my father with visits—that, in his mind, were conjugal. When my mother asked my dad what he most appreciated about Cunegonde, he said, “She has beautiful breasts and a good disposition.”
“And which is more important?” my mother asked.
“You can’t have one without the other!” Dad said.
They both cracked up—proof that years of dementia had not driven a wedge between them. Sometimes, I wondered whether my mother felt jealous that Dad had “taken” a mistress. But Cunegonde was a source of comfort to them both. Lover, companion, caregiver—she provided my father with what my mother could no longer: her constant presence. Cunegonde’s existence, if only in his imagination, somehow meant my father never felt alone.
My father was able to thrive, perhaps because the disease had quieted his inner demons. He once told me, “I used to be Type A, but now I’m not. I think senility suits me.” He was also able to openly express love, which, pre-dementia, had been hard for him. During her daily visits to the nursing home, my mother was treated to my father’s frequent air kisses and uninhibited proclamations of affection.
Average survival after a diagnosis of dementia is about five years, but my father lived another 12. On her visit each day, my mom would caress my father’s face while running his electric shaver. Then, while humming a waltz, they would dance with their hands high in the air, even as the rest of my father sat listlessly in his wheelchair. She entered his world and embraced his imagination, which allowed them to travel to exotic places while staying put. She understood that the act of giving and receiving love comes in many forms and need not be extinguished by disease. Early on in their relationship, my parents’ love, like that of most married couples, was often strained by the quotidian challenges of life. But that changed with dementia. Although there was great sadness as the disease chipped away at my father’s beautiful mind, their bond only grew stronger.
I often wonder how I would respond, were I in my mother’s shoes. Would I feel sidelined or betrayed if my husband took an imaginary muse to cope with a devastating disease? A year before my father died, I paid him a birthday visit in the nursing home. He seemed content and at peace. He explained that he was teaching Cunegonde Yiddish and that they had just played a game of Parcheesi. When I asked how it felt to turn 85, my father smiled and said, “Good. My mind is still working. I love food, and I have a good life.” This from a man in a nursing home with progressive dementia, eating ground-up food for breakfast, lunch and dinner.
In the final months before my father died, he rarely mentioned Cunegonde. After repeated infections and decline, his life was ebbing away along with his mistress. My family and I were deeply saddened by her disappearance. We knew it heralded a more profound loss to come.
Even now, I often think of Cunegonde. She served many roles: playmate, lover, maternal figure and most of all, as my dad himself explained, solace. I know that what really saved my father was love—both from his imaginary mistress and his real-life true love, who remained his devoted lifeline to the world.
It began years ago: my father wandered off from a family gathering and became disoriented. Things started to add up: missed appointments, mistakes with the bills, getting lost driving to the post office. At age 72, my dad had dementia. So began our family’s long caregiving odyssey — a journey so many of us will take over a lifetime.
Along with my mother and siblings, I joined a large and growing club: the more than 40 million family caregivers who provide 80 percent of long-term care in this country. Most of us don’t even identify as caregivers. We’re just trying to do our best to help Mom or Dad, yet constantly feeling we’re not doing enough.
By 2050, the population of people over 65 is projected to nearly double. An estimated 70 percent of them will need some type of long-term care. The responsibility for providing that care will most likely fall on us: daughters, sons, nieces, nephews, grandchildren, spouses — even friends and neighbors will pitch in.
Well-heeled caregivers are fortunate enough to have financial resources to pay for care. Others will rely on state and federal funds to supplement their efforts. But almost all of us — rich or poor — are simply unprepared for the emotional and financial challenges of being a family caregiver.
Like many caregivers, I was in the workforce, sandwiched between the needs of my three kids and a dad with dementia. The number of adults getting squeezed from both ends will only grow. I became one of the nearly half of American adults in their 40s and 50s who are in the Sandwich Generation — caring for a child and an aging parent, not to mention having a full-time job.
In many ways, though, my family was fortunate. Once my mother could no longer safely care for my father at home, we made the tough decision to move Dad to a nursing home, with an annual price tag of $90,000, which we could afford, at least for a while. When the money started to run out, we relocated my father, a veteran, to the local soldier’s home at a fraction of the cost.
Most of us plan ahead for the costs of caring for our kids, but when it comes to caring for our parents, we are caught off guard. Parents often stock away funds for big-ticket college expenses right after their children are born. But many of us underestimate the cost of long-term senior care, and the same type of financial planning doesn’t typically take place when considering the needs of aging parents — or ourselves.
We think Medicare will step in when we need it. Think again.
A big shocker for many is that Medicare, the primary insurer for 55 million older adults and people with disabilities, does not typically pay for long-term care. People dig deep into their pockets to pay for all sorts of things not covered by insurance, such as medicine, medical supplies, food, transportation and household expenses. On average, family caregivers spend roughly $7,000 per year on out-of-pocket costs related to caregiving. For the average family caregiver, that’s a whopping 20 percent of annual income.
Many caregivers also cut back on other spending, which can jeopardize a family’s financial security and wellbeing. According to a recent AARP study, 30 percent of family caregivers dip into their personal savings to cover long-term care costs, 16 percent reduce contributions to their retirement accounts, and about half cut back on leisure spending. What about that college savings plan for little Jimmy? Paying for Dad’s home health aide, who he needs on Tuesday, may come first.
The tough reality is that many families aren’t rich enough to afford the staggering cost of long-term care. Yet at the same time, they don’t qualify for Medicaid, a health care program for eligible low-income and disabled adults. That was the case with my father, who spent six years in two different nursing homes. Most caregivers focus on the obvious costs of long-term care, such as hiring an in-home caregiver or paying for a nursing home. But there are many other unexpected costs.
And it’s not just baby boomers who need to be worried about this. One in four family caregivers is a millennial and about half are under the age of 50. There are a lot of us in this boat and most are in the workforce. Jobs and caregiving don’t always go together well.
Four months after my father died, my mother fell and broke her femur. After surgery, she was in rehab for weeks, then returned home alone in a wheelchair for seven long months. During that time, I frequently left work early and took time off to help out. I was not alone. Close to 70 percent of working caregivers experience work-related disruptions due to their dual roles, and it’s not something you can easily hide. The fear of getting “the call” is always in the back of your mind because you know you’re just one crisis away from it all falling down like a house of cards.
Sooner or later, you’ll come in late, rearrange your work schedule, or cut back your hours entirely. Maybe you’re showing up to work, but aren’t able to focus on the job because you’re distracted and stressed out. What happens when your body is perched at your desk and your head is weighed down with Dad’s dementia or your frail mom who has to care for him? It may not be absenteeism, but it is a problem. Employers call it “presenteeism.”
In fact, it’s estimated that presenteeism costs employers even more than absenteeism. Speaking of which, the average working caregiver misses about six and a half days per year. When the going gets really tough, some people quit their jobs altogether. But there’s often a heavy cost for those who do. Over a lifetime, employees who leave the workforce to care for a parent or family member lose close to $300,000 in wages and benefits, and the amount is ever higher for women.
Working caregivers who live paycheck-to-paycheck are often hit hardest by the financial strain of out-of-pocket long-term care costs. Many are lower-income women of color caring for a parent or family member who needs daily help requiring hands-on assistance like bathing or dressing. Employed in restaurants, retail, factories and healthcare, these workers struggle to keep their heads above water and eke out livable wages. When they become caregivers and have to pay for a host of unanticipated expenses, their shallow financial well may run dry. It’s much harder to come forward and ask an employer for support if the risks feel too high.
So how can you juggle it all and avoid the common pitfalls of being a working caregiver? Fortunately, there is some good news. Employers have some skin in the game and, increasingly, they’re providing benefits that serve both ends of the caregiving spectrum, from children to seniors. Lost productivity, absenteeism and workday interruptions due to caregiving costs U.S. businesses up to $33 billion annually. And that doesn’t include an extra $13 billion per year in healthcare costs, because caregiving employees get sick more often than their non-caregiving counterparts. Whether they recognize it or not, there’s a financial incentive for employers to step up to the plate.
During the years that I was helping care for my father, I found myself spending a lot of time in my car. It was a two-hour drive each way along the Massachusetts Turnpike, from my home outside of Boston to the western part of the state where my parents lived. I looked forward to these visits, especially my father’s sweet smile of appreciation when I arrived. Eventually the frequent trips, along with a full-time job, three teenage kids, and a husband who traveled on business, took a toll. I felt stressed and overwhelmed. What made it even remotely possible was that I worked for a boss who gave me the flexibility and support I needed.
Keeping your job and caring for your parent at the same time should not depend on being lucky enough to have an understanding manager, but it often does. Many caregiving employees are afraid to speak up and advocate for themselves. They push themselves harder, heap more onto their overflowing plates, and eventually don’t do a very good job of caring for anyone, including themselves. No one should have to choose between work and caregiving. Even if you have to cut back or take a leave, there are steps you can take to keep your job and salary afloat — and care for Mom too.
1. Don’t suffer in silence
If you don’t advocate for yourself, chances are no one else will. Ask your manager or human resources department about employer-supported benefits such as backup care and resource and referral programs. Check to see if there are there workplace policies, such as flex-time, so you can adjust your schedule and spend more time caring for Mom if needed. If you need extended time off, ask about the company’s family medical leave policy. Companies with 50 or more employees are obligated by law to allow employees a protected leave of absence to care for children or aging parents. This is typically without pay, but it can save your job.
2. Remember the Scouts’ motto: Be prepared
Learn about payer options: Medicare, Medicaid, long-term care insurance and veterans’ benefits. What you don’t know can hurt you. Some employers offer seminars and webinars on eldercare topics, which can teach you some of the basics. Or you can go to Medicare.gov for information about long-term care and how to pay for it. Elder law attorneys can provide you with much-needed information about estate planning and Medicaid eligibility that can steer you in the right direction. Learning the financial landscape ahead of time often results in less confusion and better outcomes if you’re faced with an eldercare crisis.
3. Have the talk about money
Discussing money is one of those thorny, uncomfortable subjects that adult children and their parents often avoid, to their own detriment. Viewing money as a private matter is ingrained in our American culture, particularly for the generation that came of age during World War ll. But it’s precisely these candid conversations about money that enable caregivers to chart a pragmatic course based on realistic options.
Sadly, your parents won’t need your help forever. During the months or years they do require support, it’s important to stay grounded in the present while anticipating and planning for their care down the road. If you leave the workforce altogether to focus on caregiving, you may end up hurting your own financial future. Finding a caregiver-friendly employer can make a big difference. And while you can’t cram for a crisis, getting support and information early on can help you navigate the twists and turns of this unpredictable life journey and keep you focused on what really matters — being there for your loved ones.
Years ago, I regularly saw a neurologist who was treating me for chronic headaches. On one particular appointment, my doctor deviated from his usual laconic manner and asked me a few questions about my daily life. I explained that like many 40-somethings, I had a busy schedule. I worked full-time, had three kids and a husband who traveled. And by the way, my father had dementia and was going to stay with me during my mom’s recuperation from hip surgery.
“Hmmm,” the doctor muttered disapprovingly. “That’s too much.”
“Well that’s my life.” I replied defensively. “No different from lots of other women out there.”
“It may be.” the doctor responded. “But your body is telling you this is more than you can reasonably handle.” Annoyed, I initially pegged him as a guy who doesn’t get it. But in time, his message sunk in.
Like many caregivers, I was in the workforce – while sandwiched between the needs of my kids and aging parents. Along with 65.7 million Americans, I was part of a large contingent of people who provide 80% of long-term care in this country. Most of us don’t even identify ourselves as caregivers; just good daughters, sons, mothers, and fathers trying to do our best, yet constantly feeling like we are falling short of doing an adequate job of anything.
The stressors of being a sandwich-generation caregiver can take their toll physically, emotionally, and financially. On an individual scale, providing care for a senior family member can cost families upwards of $5,000 year.
Add to the mix your own children (mine were teenagers at the time needing my attention, but acting like they didn’t) and there’s a significant price to bear — for the caregivers, of course, but also their employers.
On average, caregivers miss 6.6 work days a year. The lost productivity adds up to a big cost to companies — to the tune of $17 to $33 billion annually. And since getting rid of children or parents is not an option, exiting the workplace is often an overwhelmed caregiver’s last resort. While the FMLA (Family Medical Leave Act) allows employed caregivers to take up to three-month leave from their jobs, most people don’t get paid during that time. And for those who walk off the job entirely due to caregiving responsibilities, total lost wages are estimated to be around $324,000 for women (including any Social Security they would have earned) and only slightly less for men.
But what if your job could ease the burden? Some companies are making it easier for caregivers to stay at work. Once afraid to speak up, caregiving employees are now giving voice to the realities of what they are up against: When your cell phone rings and you get that unexpected call, you can’t really hide the fact that Mom’s home health aide didn’t show up. You are going to have to blow off that mandatory management meeting to take her to the doctor instead.
Companies support these workers first and foremost by providing flexibility. A surprising number of caregivers have told me stories of being unable to leave work early or come in late to help care for mom or dad, even though they had a plan to make up the time. Not only do employers run the risk of caregiver workplace discrimination lawsuits, but word spreads fast and competition for talent is fierce. A 2012 National Study of Employers by the Families and Work Institute and the Society for Human Resource Management (SHRM) supports this notion: “Organizations that can offer more flexibility around reduced time, caregiving leaves and flex careers will have a competitive edge in recruiting and retaining employees as the aging workforce and dual focus on personal and professional lives among younger employees become increasingly important drivers in the labor market.” Being known as a flexible supportive work culture is not just good management, it makes good business sense.
But employees often need more than just flexibility — they need help. According to a recent study by ReAct (stands for “Respect a Caregiver’s Time”) and the National Alliance for Caregiving, best practices in workplace eldercare include access to web-based information, resource and referral programs, discounted backup home care, and paid time off. Companies often start by surveying employees to determine areas of strongest need. One organization offered seminars on caregiving topics such as, “Should Dad Still be Driving?” and “Caring for a Loved One with Dementia.” When the seminars were over-subscribed, it was clear there were employees out there in the throes of caregiving. The organization subsequently moved forward with a resource and referral program as well as on-site support groups.
Employees who work at companies that offer eldercare benefits are more apt to reach out for help and, as a result, are more likely to stay on the job. Take Nancy for instance; a 48-year-old single mother who works full-time as an administrative assistant at a university. Nancy’s 85-year-old mother lived alone and was beginning to show signs of dementia. When Nancy learned her organization offered an eldercare benefit called “Senior Care Planning” (part of Care.com’s Workplace Solutions program), she was relieved. Through this benefit, Nancy was connected to a master’s-level social worker who helped her come up with a plan. Since the university also had a back-up care benefit, the social worker found a home care agency that could provide Nancy’s mom help with basic transportation and errands — tasks that Nancy would have done herself otherwise.
Ultimately, the social worker identified an assisting living community that would meet mom’s needs over the long haul. Nancy’s response: “This certainly made a lot of this easier. You almost need a degree in this sort of thing to be doing it! This is a wonderful blessing.” And for many folks who are trying to figure it all out on their own, this type of expert assistance can be a lifesaver. If you spend all your time as a caregiver stressed out and figuring out logistics, you may miss out on the good stuff – and that includes being engaged in your job while spending precious time with your family.
My own three children are grown now. My home is quieter — my life less hectic. Since my dad died, I am more acutely aware of how fleeting life in the caregiving sandwich can be. Although there were some calamitous moments – I brought my dad to work one day when his caregiver didn’t show up — I don’t regret the path I chose. And I know that the time spent caring for my father and children, despite all the stress and uncertainty, had moments of joy and sorrow, with a large sprinkling of gratitude.
But as I talk with working caregivers across the country, and despite the progress some companies are making, I still see similarities with my own experience as a working mother of three children and adult daughter of aging parents: the secrecy, frantic calls to find last-minute care, and the frustration and fear that grew as I tried to do it all without letting my employer see me sweat — or more likely, cry. As caregivers, we can’t do it alone. Backup care programs, resource and referral services, and expert guidance can provide real solutions, but they can only be effective if the work environment is caregiver-friendly. Ultimately, we are all in this together. At some point, most of us will either be caregivers — or need them.
Jody Gastfriend is the Vice President of Senior Care for Care.com. As a licensed clinical social worker with more than 25 years of experience, Jody knows the challenges and struggles of family caregivers, having helped manage the care of her own parent with dementia for more than a decade. Jody has held a wide range of leadership positions including Director of Social Service in a community hospital, Chief Operating Officer of a home care agency, and consultant to hospitals and long term care facilities. Jody has lectured widely to family caregivers, HR administrators, health care professionals and policymakers on topics ranging from eldercare and aging to work and family integration.
A featured senior care expert for NBC, Fox News, AARP and the Wall St Journal, Jody is a regular contributor to The Huffington Post’s Huff/Post50 section, and has published numerous articles on caregiving and aging. She is currently working on a book based on her personal and professional experiences with caregiving.