The Rising Price of Family Caregiving

What’s it like to be a family caregiver today? According to Caring.com’s annual 2015 Usage & Attitudes Family Caregiver Survey, the word is, more or less, “complicated.” For many caregivers, more stress, time, tasks and money are required with less financial security, long-term planning and peace of mind.


AARP
Russ Malone, 65, has retired twice but is now back working part-time as a school bus driver in Rapid City, SD, to pay for his wife’s adult day care. The stress of taking care of his wife, who has early onset Alzheimer’s, is so enormous, “they would need to come up with a new word to describe it,” he says.

Even though Malone, who retired from the Air Force, and his wife, a 63-year-old former waitress, have saved for their retirement “and done everything right,” he thinks the next step—moving her into a nursing facility to the tune of $6,000-$7,000 a month—will “ruin” him and is likely to occur in six or seven months. “It’s getting to the point where I just can’t take care of her anymore,” he says. Malone has unintentionally lost weight and just picked up a prescription for an anti-depressant.

His experience supports many of the findings of this year’s survey, culled from 2,098 respondents.

Here are some highlights:

• Caregivers are spending increasing amounts of time in their role. Nearly four out of ten family caregivers, or 39%, spend more than 30 hours a week on caregiving tasks. This year, 31% report spending more than 40 hours. (Only 22% of respondents to Caring.com’s 2010 survey say they spent that much time on caregiving tasks, and in June, 2014, that figure was 26%.)

Close to half have spent more than $5,000 on caregiving expenses in the last year; 15% pitched in up to $10,000 and 9% paid $50,000 or more. Those who reported spending $50,000 or more on caregiving rose 7% compared to four years ago.

• Fewer caregivers are in the workforce today versus in 2014. This year, 35% of respondentsare employed (20% full-time) and 52% are retired. Compare that to 39% in 2014 (25% full-time).

Who Are These Caregivers?

Three-quarters of survey participants are women, a figure that’s relatively consistent from past Caring.com surveys. What has changed is the number of male caregivers. (In the May 2010 report, just 18% of respondents were male compared to 24% this year.)

The largest group of caregivers is in their 60s (35%), followed by ages 50-59 and 70-79 (each age group represents 23% of respondents). Survey respondents are also trending older, with more in their 70s and fewer in their 50s compared to years past. (In 2010, for instance, 41% of survey participants were in their 50s—there were 18% fewer fifty-somethings this year.)

Who are they caring for? Most carees are either the caregiver’s parent (32%) or spouse (24%). Over the years, the number of respondents caring for a mother or father has always surpassed those taking care of a spouse, relative or friend, but today nearly one in four now report caring for a spouse. (In 2010 that number was just 14%.)

Multi-Tasking is the Norm

The average caregiver rarely has just one or two related responsibilities. “Multitasking” might as well be her middle name.

Consider Caring.com’s 2015 survey results:

Shopping for food and personal care items take the cake (85%) as the most popular caregiving tasks. Other top responsibilities include attending their loved one’s doctors’ appointments (82%), managing finances or paying bills for the caree (81%), providing transportation (77%) and communicating with friends and family about the loved one’s condition (74%). These figures are all up from the past three years. In 2012, for example, 73% of caregivers said they managed their loved one’s money; today that number is 81%.

The list of common caregiving tasks also includes giving or keeping track of medications, preparing meals, cleaning the house, bathing or personal hygiene and visiting a loved one who lives elsewhere.

This year’s report shows caregivers have taken on more labor-intensive tasks, from bathing and personal hygiene (42% this year versus 32% two years ago) to dressing, (42% compared to 31% in 2013), and helping the caree use the toilet (29% compared to 20% two years ago).

Working Caregivers Getting Slammed at Work and at Home

Without question, even if caregivers don’t hold down a professional job, they’ve got a full-time personal one. But more than a third of respondents say they do both – with 20% working full-time and 15% who are either working part-time or are self-employed.

Working caregivers tend to face job distractions, schedule disruptions, absences and even reluctant departures from the workplace.

Consider this eye-popping figure: 71% of survey respondents say caregiving has had a negative impact on their job. That number is up 11% from 2014.

The survey uncovers significant impacts on working caregivers:

  • Most (88%) have felt some work repercussions related to caregiving
  • Two-thirds say they’re distracted on the job due to their caregiving responsibilities
  • More than half (55%) have had to change their work schedules
  • Nearly a quarter (23%) have arrived late or left early, 19% have missed substantial amounts of time and 19% think they may need to leave their job permanently because of their caregiving obligations

Up until last year, 57-year-old Kathryn Camille Bunch was a special education teacher in Austin, Texas. “It was too hard remaining at work and dealing with issues by phone with Mom’s hired caregiver,” she says. Bunch was paying the caregiver $2,400 a month from her mother’s retirement savings and her own funds.

“My school district supported ‘family first,’ but it upset my boss that I had to take off or miss work due to Mom’s issues,” she recalls. As her mother’s health declined, Bunch decided to leave the classroom altogether.

Retirement Planning on the Backburner

When caregiving is all-consuming, it can be hard to focus on anything except getting through the day. Of course, it can also have the reverse effect, prompting others to think about their own future and make a plan.

Before she stopped working three years ago, 74-year-old Roshan Khaki was an Atlanta, GA, dietician and diabetes educator. Today, she cares full-time for her husband, who has both degenerative arthritis and Chronic Obstructive Pulmonary Disease (COPD). “I often think, ‘What if something happens to me?’ but I haven’t had time to consider my own future,” she says. “I’m worried but at the same time, I will cross that bridge when I come to it.” Perhaps, she says, she will move in with one of her two children or live in a condo, but she has yet to explore her options.

Khaki’s situation is consistent with other respondents who don’t have plans in place for their older selves. Caring.com’s just-released survey points to a lot of caregivers in the same boat:

  • The majority (78%) don’t have long-term care insurance
  • Close to half (49%) have no life insurance or burial insurance
  • Nearly 50% haven’t planned for retirement
  • More than half (55%) haven’t tackled estate planning
  • Very few have made plans to move to a retirement community (8%) or to independent living communities (7%)

This year’s survey findings illuminate how caregivers are faring—and the far-reaching impact that role has on their lives. The financial costs are higher than ever – with caregivers spending larger sums on their loved ones—in some cases, a whopping $50,000 or more a year. Meanwhile, more caregivers are having to make workplace sacrifices, sometimes calling it quits altogether. And when they’re home? They’re busier than ever tending to their parent or spouse, and performing tougher tasks. Theirs is hardly an easy place to be.

Managing Caregiver Emotions-AARP

I wrote this piece from the point of view of a long-distance caregiver. I can only imagine the added intensity when you are a 24/7 caregiver (and a few nasty emails told me I have no clue what it's like!) The story has info for both long-distance and 'round-the-clock family caregivers. Let me know what you think:

At age 16 with my mother

Ever since I've been a caregiver, I've been waiting for The Call. If you're caring for a loved one, you know what I mean — the telephone rings, and you learn that your parent has taken a turn for the worse and you must rush to his side. In the past 12 years I've taken care of my father, then my mother and now my 93-year-old mother-in-law. The Call keeps coming, and I've been on edge the whole time, waiting.

Last August my husband and I were reluctant to take our annual family vacation. Would something happen? But we went, knowing that time with our adult children, who live all around the country, was also important.

We had just entered the rental house when the phone rang. My mother-in-law had been admitted to a hospital many hours away. My brother-in-law gave us bedside reports, and she was released the next day.

On the last day of vacation, the phone rang again. My mother had had a massive stroke. I traveled for six hours to her and stayed in the hospital with her for six days until she died.
Caregiving brings about a swirl of feelings: sadness, frustration, anger, anxiety, guilt, resentment, confusion, isolation, loss, fear, grief, impatience and stress. I have been overwhelmed, drained by sibling tension and torn between my own family, work, personal time and parental needs.

I've also experienced devotion, tenderness, intimacy, gratitude, patience and purpose in my role. In fact, a recent study from the Sloan Center on Aging & Work at Boston College found that older Americans who feel they are making a difference in caregiving and are highly engaged in what they're doing feel happier and more content. I understand that, as well.

But from my on-the-job training, professional reporting and research, including writing a weekly blog for AARP on the topic, I believe most caregivers confront three distinct and difficult experiences. With help from experts, I've also learned ways to manage them.

 Grief
Caregivers frequently grieve the loss of the person they once knew, even though their loved one is still alive. Until her first stroke, in 2008, my mother, a former university English teacher, read a book a day, without glasses, and was in three book clubs. Post-stroke, she could no longer see well enough to read and couldn't process Books on Tape. Instead of dashing to a play, a lecture or a party, she stayed home, unable to walk unaided or get up from a chair by herself. She was a different person.

"When someone dies, it is an overwhelming and horrible experience, but it is the end of something," says Suzanne Mintz, cofounder of the National Family Caregivers Association and author of A Family Caregiver Speaks Up: It Doesn't Have to Be This Hard. "But with a caregiver, the grief is perpetual; it goes on and on and on." Mintz has watched her husband, diagnosed with multiple sclerosis in 1974, lose his independence. "You grieve because you've lost the life you had, and you know it won't be coming back. Both of you have the diagnosis — the person with the condition and the family caregiver," says Mintz.

 One way to combat grief is to forge a way to relate to the "new" person. Chuck Niggley's wife was diagnosed with Parkinson's disease 27 years ago. "Do I ever think about what if my wife weren't ill? Sure," says the Beaverton, Ore., 73-year-old. "But I don't spend time dwelling on it. I've given up going to a three-hour movie or a baseball game with her, but we've substituted things we can do together, like attending our grandchildren's events and going to music programs."
The arts, in fact, give caregivers and their charges a powerful way to connect. Interactive creative programs — such as songwriting, storytelling, dancing, playing instruments and painting — provide ways for caregivers and care recipients to relinquish their usual roles and enjoy a fun and stimulating sensory experience together.

New York's Museum of Modern Art opens its doors to those with dementia and their caregivers each month. An art educator leads a discussion about master artists — van Gogh, Picasso, Degas — while the group views their works. This exercise taps into little-used senses and memories and ignites lively conversation, often making it impossible to tell who's taking care of whom.

My mother had always loved poetry, so I would bring Robert Louis Stevenson's A Child's Garden of Verses, a collection of the same poems she had once read to me and I had read to my children, when I visited. She'd smile as we finished the lines together, and I felt close to the mother I remembered while relating to the person she had become.

Guilt

During caregiving guilt is constant. Guilt for not spending enough time with your loved one. Guilt for not tending to your own family. Guilt for having negative feelings. And guilt for resenting your new role. On my hundreds of trips back and forth to visit my mother, I remember thinking that — shame on me — I wish this would be over so I could get my life back.

What caregivers must remember is that this is a situation over which you have limited control and shouldn't feel guilty about, says Alexis Abramson, a gerontologist and author of The Caregiver's Survival Handbook. "However, you are in control of how you react to it," she says. And that is empowering.

Abramson advises reaching out to caregiving organizations that offer education and support, investigating elder-care benefits at work and resources in the community (respite programs, adult-day-care centers, transportation services), and scheduling time for yourself.

Without a network of support, caregivers often become isolated, which can lead to depression and their own serious health issues, and further exacerbate problems — one being guilt.

One way for caregivers to handle guilt is "to accept that having negative feelings about caregiving is normal," says Barry J. Jacobs, a psychologist and author of The Emotional Survival Guide for Caregivers. "You love the person you're caring for, but you hate the caregiving. That's normal."

 Exhaustion
Caregiving often leaves the caregiver feeling depleted, both physically and mentally. For years, every other Saturday or Sunday my husband and I would pull a "doubleheader": driving two hours to see my mother, then driving another hour to be with his mother, and finally getting back home by 8 that night, when I would fall into bed and not move. It was physically draining, sure, but the mental toll also wiped me out for the next day and left me dreading the time we'd have to return.

"That's when the caregiving plan needs to be changed," says Jacobs. "Caregivers need to be smart and strategic about setting limits on the tasks they take on, and recruit others to pitch in."

Yes, taking the pressure off yourself is key. Hire outside help. Involve other family members and friends. A sibling or in-law who lives far away may be able to pay Mom's bills online, deal with insurance companies or take time off to stay with her so you can take a breather. "When family members do pitch in, then everyone feels like a team in caring for a loved one," says Jacobs. "Caregivers feel better supported and more resilient; family relationships become stronger and more enduring, even after their loved one has died."

Talking out emotions with a friend, an elder mediator, a therapist or a peer group can also lighten the mental load. "Many of the caregivers I see who do well go to support groups," says Lisa Campbell, a clinical psychologist who specializes in 50-plus issues at the Willow Wellness Center in Park Ridge, Ill. "It's normal to feel overwhelmed," she says. "Families are complicated."

This is why, in part, there is no pat formula for navigating your own maze when you become a caregiver. Each experience is unpredictable, ever changing and unique. Your plan will require constant revision. You'll need to reach out to others for ideas, advice and help, and that includes finding ways to take care of the caregiver — you.

 

 

Companies Care About Caregiving

Harvard Business School talk on blogging

Why is blogging valuable for companies? I’m speaking at Harvard Business School this week about this topic on a panel about media today and in the future. (One of my areas of expertise is baby boomers—a jumbo demographic boomers are trying to reach. One way is through content writing like a blog on a company website.)

Check back later for more (after my talk) about why blogging can be so effective for businesses. In the meantime, here are three reasons:

  • Positions you as a thought leader
  • Creates a business opportunity to engage readers
  • Humanizes the company—You’re not just peddling a product, you care about me!

 

Caregiving and Technology: Can You Say “Cutting Edge?”

Technology allows caregivers peace of mindLots in the press lately about how technology is helping seniors grow old at home and feel safer, more socially connected and stimulated—and giving their boomer children peace of mind. I’ve written my share of stories on the subject, including one recently for AARP they provocatively titled “Is This the End of the Nursing Home?” about the cool technologies that allow people to grow old at home.

I wrote another on tech tools for caregiving after speaking and moderating a panel on boomer and senior housing—fun with Cathy Smith on the panel from Google talking about trends the company is seeing– at the What’s Next Boomer Business Summit in San Diego. Entrepreneurs, venture capitalists, national experts, and companies with products and services in the aging field met to learn about the latest technology, network and cross-pollinate. It was fascinating!

If you want to keep current (a good idea!), the best resource I know is industry analyst Laurie Orlov’s website Aging in Place Technology Watch.

And talking great resources, check out the newly released Not Your Mother’s Retirement. It covers work, travel, exercise, spirituality, and caregiving. But I save the best for last. I wrote the chapter on housing.

 

Google Images via newsbuzzz.com

Actors Fake Dementia to Help Family Caregivers

A hospital program teaching family caregivers to be more effective with help of actors faking dementia
Actor pretends to have dementia

Presenting a caregiving program out of New Hampshire’s Dartmouth-Hitchock Medical Center: trained actors pretend to have Alzheimer’s, other dementias, or Parkinson’s in order to teach family caregivers strategies do a better job. Here’s how it works: caregivers are given a scenario to act out–perhaps coaxing Mom to take her medication, get dressed or change clothes. The actor is Mom and you are a frustrated and running-out-of-ideas adult daughter, perhaps. Or, you perform brilliantly.

Either way, the actors and fellow caregivers critique your “scene” and make suggestions so that when that situation really occurs, you have more effective strategies.

Here’s the piece from my weekly AARP blog

Training medical students to do a better job by using actors to play patients is not new. But at the Dartmouth-Hitchcock Medical Center, actors are faking dementia and Parkinson’s  disease to help family caregivers be more effective — and that’s downright novel.

Last month, 16 caregiver spouses gathered at the hospital’s simulation center to boost their communication skills with a loved one. These husbands and wives were dealing with challenging behaviors and wanted help solving real-life issues. In the process, the group also learned what it’s like to be the one impaired.

Each participant was videotaped in a pretend scenario with an actor (made up to look the part) who refused to get dressed, say, or was exceptionally negative. After the role-playing, the actors and fellow caregivers offered feedback on the caregiver’s body language and interaction — what worked and what didn’t. “Family caregivers are often thrust into this role of providing medical care without medical training,” says Justin Montgomery, a clinical nurse and nurse practitioner at Dartmouth-Hitchcock’s Aging Resource Center.

One caregiver in the two-session program was Myra Ferguson, whose husband has Parkinson’s. While she has had experience with the disease — her father also had it — caregiver boot camp reinforced her skills.

Ferguson was asked to play the sister of a patient/actor with Parkinson’s who didn’t want to put on a sweater or take her medicine. “My job was to encourage my ‘sister’ and tell her she could do it,” says Ferguson.  The feedback was positive — and useful. “I saw that I could be gentle and patient,” Ferguson says. “My colleagues liked that I used humor and made jokes to turn things around.”

Dartmouth-Hitchcock plans another round of caregiving sessions this spring and hopes to have more in the future. The training program is part of a federal grant through the Health Resources and Services Administration. “I was feeling really alone and lost before the boot camp, but it was like a support group for me,” says Ferguson. “It was also wonderful that I was learning to be a better caregiver.”

Photo by Charlotte Albright/Vermont Public Radio

Would this kind of program appeal to you? Thoughts, please!

Another Caregiving Concern?

Eduard Titov via Creative Commons

Here’s a trend with significant implications: Older adults are not just receiving care, but also providing (think sick spouse, a family member, friend, or neighbor). In one of my AARP blogs, I write about a study just released with steep statistics on this phenomenon. What community services do we have, do we need, to address these graying caregivers/care receivers?

Take a look:

A new national survey confirms what some of us already know: Many older Americans take care of others and are not just on the receiving end. Let’s get specific. In this first-ever United States of Aging survey, half of respondents identify someone as their caregiver, while nearly one-third say they care for another person.

Those are just two caregiving results culled from the survey, created by the National Council on Aging, UnitedHealthcare and USA Today. Its purpose is to gauge the readiness of communities and adults age 60+ to what I call the “silver deluge”—the 77 million boomers turning 65 to the tune of 10,000 a day.

The three groups decided to ask 2,250 adults age 60+ how prepared they are for their own aging and what they think of the resources available to them in their cities and towns.

Questions covered financial security, community resources, health and wellness, aging in place and caregiving. But don’t expect to see survey results here on all of these topics. Reminder: You are reading a blog on family caregiving!

Not to worry. You can still bone up on survey findings in these other areas.

Consider this a baseline survey. Comparing subsequent reports to it will be particularly insightful. Here are highlights from the inaugural report:

  • Close to half of caregivers say they would benefit from more community services. On that list is respite care.
  • 61% know their community has services to help them, yet just 15% have used them.
  • 21% more have no clue whether services are available where they live.

Have you ever thought about who will be your caregiver should you need one? How about who you may need to look after?

It may seem ultra premature to think about your own caregiving plan for the future. Get over it! You don’t have to make a move, but it’s important to begin thinking about positioning yourself so you’ll have an optimum caregiving situation. Will it be easier if you live closer to family or have them live closer to you? Can you create your own “family” with supportive friends, a retirement community, or consider other housing options?

Intergenerational cohousing? Aging in place and belonging to a “Village” membership network that offers social opportunities like movies, museums, theatre, a group meal, or book club, not to mention rides to medical appointments, discounted home repairs and even dog walking?

I’d love to hear what you’re thinking. Are you a caregiver who also needs care? Have any strategies you can share?