But my sisters and I are far from alone. Many of my work friends and colleagues are family caregivers too. Nearly two out of three (62%) workers aged 45 to 74-years-old currently have caregiving responsibilities for an aging or other adult relative. About one in five (20%) expect to take time off from their job in the next five years because of caregiving responsibilities.

Because I work for an organization that provides paid family leave benefits for working caregivers, and in a jurisdiction (the District of Columbia) that has a broad definition of family and requires employers to offer paid sick days as an employment benefit, I don’t have to worry about jeopardizing my job or losing a paycheck when I need to take time away from work to be there for my mom. Substantial numbers of working caregivers aren’t so lucky.

A recent AARP Public Policy Institute report shows that workplace leave policies have not kept up with the times. These policies are not available to all workers in all work settings. Middle and low-income workers, who struggle day-to-day to make ends meet and who need these workplace leave benefits the most, are the least likely to have them.

READ FULL REPORT HERE > Supporting Family Caregivers with Workplace Leave Policies

It’s been 20 years since the Family and Medical Leave Act (FMLA) was enacted; the first national law to help workers meet the dual demands of employment and family care. The FMLA gives eligible workers the right to job-protected, unpaid time off for a worker’s own health needs or to care for certain family members (child, spouse, or parent).

But what if you work for a small nonprofit or a business with fewer than 50 employees? Or, what if you are caring for a domestic partner, your brother, your grandmother, or your in-laws? If that’s the case, you are not covered under the FMLA, along with about 40% of the workforce. Even for employees who are covered by the FMLA, the law does not mandate paid leave for family or medical reasons.

Only 12 percent of U.S. workers have access to paid family leave benefits through their employers. How many of us can afford to take time off without pay? Lack of paid family leave — or any paid sick days — can especially strain the financial security and peace of mind of middle- and lower-income families.

Research shows that workplace leave policies are good for business and can improve productivity and reduce worker turnover. It’s time to update our “family-friendly” leave policies to better help today’s workplaces adapt to 21st-century workforce needs and support caregiving families. As our population ages, this is a problem worth solving for ourselves, our families and our employers.

Lynn Friss Feinberg, MSW, is a senior strategic policy adviser for the AARP Public Policy Institute.  She has conducted policy analysis and applied research on family caregiving and long-term services and supports issues for more than 30 years.

I had always assumed that by the time my brothers and I “grew up” we’d have it all figured out, including the major discussions of how best to help our parents as they age and change. But an online survey of 1,110 adults ages 40 and older, commissioned by the in-home senior care company Visiting Angels,  found that nearly three out of four (72 percent) didn’t have any sort of plan at all and that 54 percent hadn’t even broached the subject with their parents. Other surprising findings:

• Only 33 percent, consisting mostly of firstborn children, would rather have their fathers move in with them over their mothers if they had to choose. Respondents said dad is messier (70 percent) and that mom is more likely to contribute to the household (86 percent).

• More than two-thirds (70 percent) didn’t want either parent to move in with them, period, and 85 percent said that not even an increase in their inheritance would change their minds.

• Some 60 percent believe their parents would prefer to age in their own home, yet 20 percent would prefer that their parents move into an assisted living facility or nursing home.

How and when are we supposed to start these potentially sensitive family conversations?

“The conversation needs to start before a crisis,” says Larry Meigs, CEO of Visiting Angels. Otherwise, you may find that you and your siblings have very different assumptions about who should do what. And the last thing you want in dear old dad’s future is a family feud.

So while a dozen golf balls or the latest advancement in grill technology (Bluetooth lamp-radio, anyone?) may be a well-deserved token of Father’s Day love, nothing beats peace of mind.

Photo: Peter Werkman (www.peterwerkman.nl)/Flickr

Austin, Texas. Mid-1980s. I’m sitting at lunch with a casual friend, who is living with and taking care of her mom. Mom is slack-jawed, with a vacant stare, but she knows what she wants: her portion, and more, of the french fries she’s sharing with her daughter.

As mom reaches for one more fry, my friend’s hand flashes out, spearing her mom’s hand with a fork. Mom’s reaction is much quieter than it should be; my friend shoots me an embarrassed look that says, “I’ve reached my limit.” I sit back, quiet, unnerved, not quite sure what I’ve just seen. Now I know.

Which brings me to World Elder Abuse Awareness Day, marked this year on June 15. I didn’t know there was such a day, did you? Beyond the platitude of “If you see something, say something,” let me honor my long-forgotten friend, and especially her mom, by sharing these seven ways you can fight elder abuse.

1. Learn what elder abuse is, even if you think you already know. Physical abuse and its obvious signs may draw attention. Sexual abuse is harder to detect, but sadly not rare. Emotional abuse may be the hardest to identify and combat. Is an elder you know becoming more withdrawn? Has a lifetime of criticism or disrespect suddenly escalated to new levels in the relationship of a long-time couple, or child and parent? Neglect and abandonment are also abuse. Find the warning signs of elder abuse at the HHS Administration on Aging.
2. Help elders in your life be smart with their money. Billions of dollars are stolen from older Americans each year, and as AARP personal finance expert Lynnette Khalfani-Cox has written, financial abuse is “more likely to come at the hands of family members and caregivers” than strangers. The Federal Deposit Insurance Corporation and the Consumer Financial Protection Bureau, have just launched a new curriculum called “Money Smart for Older Adults,” which includes instructor and participant guides. The materials note the sad fact that seniors, because they are “trusting and polite,” may be especially vulnerable to swindlers.
3. Offer respite for friends and family who are caring for elders. Caregivers in institutional settings may become overwhelmed or exhausted, and so may family caregivers. This may be especially true when the behavior of elders is unpredictable or aggressive because of dementia or other conditions. If someone in your family is shouldering the burden of caregiving, then find ways to help. Set a schedule with friends, siblings, neighbors, and professional helpers to take the pressure off. If you’re a primary caregiver, here are some tips for managing stress.
4. Think not only outside the box, but outside the country. HelpAge USA, a group that sometimes partners with AARP on international initiatives like helping the victims of Haiti’s devastating earthquake in 2010, has launched a program to fight elder abuse in developing countries, where laws may not protect older people. Among their ideas are encouraging local volunteers to make home visits to vulnerable seniors, supporting local associations of older people and training communities to recognize the human rights of older people.
5. If you’d rather stick close to home, volunteer for a group that helps fight elder abuse in the US. AARP’s Create the Good makes it easy to volunteer, giving you a chance to enter your location and interests and see opportunities in your community. There’s a great roundup of organizations you can get involved with on the website of the National Committee to Fight Elder Abuse, including groups you may not have thought of. How about becoming an ombudsman at a senior care facility, or helping seniors organize their bills? Since 1988 a group called TRIAD, with chapters all over the country, has fostered cooperation between seniors and law enforcement, offering many opportunities to volunteer.
6. Make some noise. Elder abuse is under-reported and largely hidden from view. But we can change that. Learn about the places in your community that care for elders and find out what standards they need to meet. Are the results of inspections public? What about the posting of violations? During the next local election, ask candidates how much they know about elder abuse and what they plan to do about it. Vote for the candidate with a plan, or at least one with a clue.
7. Pick up the phone, or a pen. At AARP, we’re constantly reminding everyone that the 50+ crowd is completely onboard with modern communication, from texting to tweeting. But we also see the statistics that people 65-plus are lagging behind. If you’ve gotten out of the habit of calling and writing the older people in your life, recommit to staying in touch. Learn where your older neighbors are, too, and get a sense of how they’re doing, and how you can help. Don’t do it tomorrow; do it now.

Also of Interest

• Elder Abuse: A Hidden Epidemic Is Slowly Coming Out of the Shadows
• Is ‘The Internship’ An Equal Opportunity Offender?
• Join AARP: Savings, resources and news for your well-being

See the AARP home page for deals, savings tips, trivia and more

Death Cafe ad from Battlesboro, Vermont. Via deathcafe.com.

Wanna talk about death? It seems that a lot of people do. Death cafes are popping up around the country, with more than 60 so far. You will be hearing a lot more about them. (I swear on my life.) Look, even USAToday has written about them!

At these Cafes, the conversation is about … death: Our fear of it, how we prepare for our own, what we think happens after it’s over, near-death experiences, grieving rituals and funerals. The biggest focus is exploring what participants want to do before they die and how they want to live since, another subject covered, death really is inevitable.

What they’re not: support or bereavement groups. What they are: a place to feel comfortable talking about a taboo subject.

The definitive website, with an apt URL of www.deathcafe.com, says a café’s purpose is “to increase awareness of death with a view to helping people make the most of their finite lives.”

Typically, the venues are coffee shops or restaurants.  But not necessarily. In March, a group convened at the Oakland Cemetery in Atlanta. A bit ghoulish? Perhaps, but facilitators at these special events are usually social workers and hospital chaplains.

Join the discussion: The No Longer Taboo topic of Death…

How one community center in Trescott, Maine, advertised for its Death Cafe earlier this month. Image via deathcafe.com.

The café concept was started in Switzerland by sociologist Bernard Crettaz. It passed on to England when web designer Jon Underwood heard about it and held a death pow-wow in his basement. He’s continued to spearhead the movement. (Aside: interesting that the stiff upper lip Brits tackled the topic before the say-it-like-it-is U.S. baby boomers.)

It makes sense that the concept is taking off in America. These independent-minded, I’m-not-going-to-take-it-lying-down boomers are exploring the last frontier.  They’re trying to control what they can.

We’ve seen it with the “Me” Generation planning their own funerals. At mywonderfullife.com you can write your obituary, choose the readings and the music.

Funeral directors no longer blush when they’re asked to have a motorcycle theme for a biker or hand out goodie bags to mourners. At casketfurniture.com, you can order a coffee table or a cabinet that can me later used for, you guessed it. Clever entrepreneurs can even make diamonds out of human ashes. Don’t worry, the LifeGem is certified by the Gemological Institute of America.

But back to death cafes. It joins The Conversation Project, which helps folks discuss end-of-life wishes for themselves or their parents’, in taking the Grim Reaper by the reins.

Death cafes are planned this month in Jacksonville, Fla., Taos, N.M., Ann Arbor, Mich., New York City, Cleveland, Flagstaff, Ariz., Baltimore, Atlanta and Dumfries, Va. More are on tap for the summer and beyond. For details, go to www.deathcafe.org.

Follow Sally Abrahms at www.sallyabrahms.com or on Twitter.

On May 29th, the General Assembly unanimously adopted House Resolution 80 – a measure that recognizes the pivotal role of family caregivers in Illinois.

With the resolution, the General Assembly pledges to review state policies and support current state programs that address the needs of caregivers while also urging the Illinois Department on Aging to create a work group that focuses on recruiting, retaining and supporting family and paid caregivers.  Through the resolution, the General Assembly also emphasized their support of the dedicated work of family caregivers throughout the state and committed to continue to seek additional ways to support these individuals through information, education, training and relief care.

It is estimated that over 2.4 million adults in the state provide an estimated 1.59 billion hours of care to adult relatives or friends – an estimated value of $18.8 billion each year.  Nearly 75% of older people living in Illinois who received personal assistance relied exclusively on unpaid caregivers for help.

AARP commends the Illinois General Assembly for passing a resolution that recognizes the value of family caregiving and we will continue to advocate for policies and procedures that support caregivers in our state and across the country.

Camelot Cohousing

Remember when neighborhoods were like caring villages? I never had that experience, but got more than a hint when I visited Camelot Cohousing in Berlin, Mass., a couple of weeks ago.

I went to do a housing story and found a family caregiving story!

It also brought home the point that there are many ways to grow old and have support. Whether you’re a boomer or in your 70s and beyond, it’s an interesting option.

First, the cohousing concept: People own (a few rent) a small, often attached, home with an inviting front porch. Houses are next to, as well as face, one another across a walkway. Roads and cars are banished to the perimeter of the property so there is daily pedestrian interaction with innumerable everyday opportunities to get to know one another. This regular, impromptu communication fosters deep friendships.

Residents share outdoor space and a multipurpose common house. Usually there’s a kitchen, a living room/meeting room/movie area, a bedroom for guests or future caregivers, and whatever else the group wants (a fitness room, game room, sewing room, perhaps) in the common house. It’s also where residents, if they choose, can have one or two meals together a week.

Members in Camelot range from a newborn to 80-year-old Martha Shevett. The day I visited, Shevett was sitting in a white wicker chair on her porch. She had a rail installed because “I’m old and tottery,” she said.

Shevett used to live alone in an apartment. “It was tremendously isolating,” she recalled. Now Shevett lives alone but isn’t lonely.

Before moving to Massachusetts, she had settled in Pennsylvania and Florida. “I’ve never had these kinds of relationships with neighbors. People are so wonderfully supportive,” she said.

If she has trouble opening a jar, she’ll ask someone on the walkway. She’s fallen several times in her house, winding up in the hospital more than once. While she had a visiting nurse, neighbors also rallied. If she had been living in her old apartment, “I would have been up a creek,” she said. Taking a shower is still hard. A neighbor, a registered nurse, called when I was visiting to see if it was a good time to help Shevett take a shower.

There are 34 units in Camelot. If she wants to see fresh faces, she hops in a three legged motorized cart she’s dubbed “my chariot” and in two minutes, she’s at Mosaic Commons, another intergenerational cohousing community.  They share meals and have a similar set-up.

Among the faces she sees at Mosaic Commons are her 48-year-old son, David, and 14-year-old grandson. Both mother and son love the arrangement. As David put it, “Mom’s not right here. She’s close enough to be convenient and far enough away to give us distance.” He’s “relieved” and “ecstatic” that she’s surrounded by people who care about her. “It’s the dynamic you want in any small town where people look out for each other,” he said. “I don’t ever want to move from Mosaic Commons. I’m in a place I want to be for the rest of her life.”

And so is Martha.

Interested in cohousing? There are more than 120 developments nationwide, all intergenerational except six geared to seniors. (There are plenty of boomers in senior cohousing.) Around the country, homes in cohousing develpoments range from $150,000 to $1.4 million and are 450 to 2,000 square feet.

Two good resource are the Cohousing Association of the United States and The Cohousing Company.

Do you think cohousing might be right for you? Tell us in the comments below.

Follow Sally Abrahms on Twitter. You’ll find other articles on boomers, elders, housing and caregiving on her website. 

“In a matter of minutes, thousands of lives were changed forever as a result of the tornadoes that hit Oklahoma in May. The path of destruction and loss of life left by these storms has been heartbreaking,” he told me. “We remember the lost, pray for the victims and give thanks for the heroic efforts of the first responders.” – Sean Voskuhl, State Director, AARP Oklahoma

Whether you help older loved ones nearby or from a distance, they’ll need your support to cope after a tragedy. Here are a few things to keep in mind when disaster hits:

Preparation:  Make sure they have a simple plan for where to go and what to do in the event of a disaster. Plan how you’ll contact each other in the aftermath — beyond phones and email, which may not be available. For four great tips for preparing for a natural disaster, see my friend Sally Abrahms’ recent post. Also see her post about questions to ask about nursing facilities’ evacuation plans.

Finding help in the aftermath: Your loved ones may need help with complicated insurance, health and housing issues.

• In Oklahoma, Sean told me people are advised to call 2-1-1 for information and referral.
• In many disasters, the Federal Emergency Management Administration (FEMA) steps in to provide support.
• Contact the local Area Agency on Aging (find one at eldercare.gov) to find out about supports for older adults. Also check with local faith communities.
• Contact your loved ones’ health insurance company for guidance about prescription drug coverage if they’ve lost medication and need emergency supplies. Contact their doctors, home health agencies or home care physicians about mobile medical care options if they are not hospitalized.

Dealing with emotions: Your older loved ones are very vulnerable and experiencing grief and loss after a disaster. Emotional upset, stress, fatigue and injuries may hinder their ability to manage their affairs.

• Be sure your loved ones are getting mental health care from qualified professionals trained to deal with disasters, trauma and tragedy.
• It takes time to recover from disaster; be aware that the effects may be long-lasting.

Caregiver Stress: Don’t forget to deal with your own stress as a caregiver. You may have been personally affected by the disaster as well, or you may be helping multiple family members and friends. Crisis management can be extremely draining. Watch out for these red flags signaling burnout:

• Extreme mental, physical, emotional exhaustion (or total meltdown, as I like to call it).
• Loss of motivation — a feeling that you just don’t care about anything.
• Extreme despair; a desire to walk away from the stressful situation.

If you experience any of these, pay attention: take a break, get support, take care of your health, ask others to help your loved ones cope.

AARP Oklahoma is working with the AARP Foundation to support victims of the tornado. If you’d like to help, you can contribute to the AARP Foundation Oklahoma Tornado Relief Fund.

Amy Goyer is AARP’s Home & Family Expert; she splits her time between Washington, D.C. and Phoenix, Ariz. where she is caregiving for both of her parents who live with her. Her new book, AARP’s Juggling Work and Caregiving, will be published this fall. Follow Amy on Twitter @amygoyer and on Facebook.

Greater longevity is a measure of enormous progress for older Americans. But greater longevity has also created new challenges.  Particularly troubling is what happens to middle-class security for Americans who reach advanced old age.

Think tanks, academic research centers, and journalists are generating mountains of reports on the plight of the middle class. Political leaders from across the ideological spectrum speak of the importance of restoring middle class security.  However, these discussions have largely focused on the problems with attaining middle-class security early in life. Relatively few have addressed maintaining middle-class security late in life.

The impoverishment of the very old who were once middle class is so routine that we scarcely note it, and yet understanding the unraveling of middle-class security in late old age is critical to some of the most important policy issues of our time.

To fill this gap, the AARP Public Policy Institute Middle Class Security Project addressed the many challenges to middle-class security experienced over the course of retirement years. One of the most alarming findings from the research we reviewed was that nearly half of older people have essentially no financial assets when they die. Our research also found that the largest percentage increases in debt in recent years were among those age 75 and older, often to meet basic needs when other resources have been exhausted.

Longer lives and more extended periods of retirement mean that people will have to save more during their working years and will have to work longer to ensure a secure old age. But research consistently indicates that savings rates are too low, especially after including the effects of the recent recession. Despite these findings, recent policy discussions have focused on reducing Social Security cost of living increases, which would have particularly devastating effects on the financial security of very old.

Our Middle Class Security Project found that one of the biggest threats to security late in life comes from the escalating costs of health care.  The official federal poverty measure shows 9 percent of older people below the poverty line. But a supplemental measure — developed by the Census Bureau that takes into account health care costs — shows 15 percent impoverished.

Projections commissioned by AARP indicate that income gains are likely to be wiped out by increasing health care costs when future generations reach age 70 and older. But health care policy discussions have focused on cutting Medicare benefits to older persons, and public policy regarding long-term services and supports still requires that older people impoverish themselves before they can receive public benefits.

As our political leadership debates ways to restore greater security to the middle class, we must make sure that we do not undermine that security for the oldest and most vulnerable Americans. The story about middle-class security isn’t complete by just looking at the beginning — we must also pay attention to the last chapter of life.

Author: Don Redfoot was project manager for the AARP Public Public Institute Middle Class Security Project.

Do these numbers reflect declining willingness of Americans to help their own families in a time of need? Are we becoming a nation of people unwilling to take personal responsibility, who are looking for ways to get government benefits?

A newly released paper from the AARP Public Policy Institute examines the pathway to Medicaid for those who need LTSS in their retirement years. It shows that families continue to provide most of the caregiving support to people with disabilities, and it notes that the value of family caregiving dwarfs the costs of Medicaid or out-of-pocket expenditures.

Medicaid provides an indispensable backstop of coverage for middle-income people not because people are trying to get on welfare, but because the costs of LTSS often occur late in life when people have exhausted many of their resources and because the costs of care are so high.

The average duration of need for LTSS is three years. A year in a nursing home costs $84,000 on average, and even assisted living costs an average of over $41,000 a year.  So, many middle income people simply do not have the savings to pay the costs of extended periods of care.

For the care that families cannot provide, most people must rely on their own resources — until those resources are exhausted and Medicaid becomes the payer of last resort. Evidence on those who spend down their resources until they must accept Medicaid indicates that nearly nine in ten older persons who spent down between 1998 and 2008 had incomes below the median of $32,000 and over half (56 percent) had assets in the lowest quartile (<$38,000).

Despite popular misperceptions, Medicare does not pay for LTSS and only a small percentage of people are covered by private long-term care insurance.  Analysis from AARP’s Middle Class Security Project shows that stagnant incomes, declining savings, and rising debts will make the costs of LTSS an increasing threat to the security of current and future middle-class retirees.

Congress recently authorized a Long-Term Care Commission to examine issues related to the future of financing LTSS and to make recommendations for legislative action. The commission must address not only the budget issues related to Medicaid but also the human costs of disability experienced by increasing numbers of people who live to late old age and the families that are making heroic efforts to support them. Requiring impoverishment and overtaxing families should no longer be the cornerstones of our nation’s LTSS policies.

Donald Redfoot, Ph.D. is a senior strategic policy adviser for the AARP Public Policy Institute. He has conducted and supervised policy analysis on the financing of long-term services and supports for more than 25 years.

First, I want to give a shout out to AARP’s Caregiver Resource Center. I’m not just saying this because I’m an AARP loyalist. This site is stellar! It has checklists, worksheets, tips, tools, articles, blogs, a care provider locator, long-term care calculator, Ask the Experts feature and more.

Other good sources include:

• The United Hospital Fund’s free Next Step in Care series has 25 free guides for family caregivers. They include advance directives, LGBT caregiving and medication management. The nonprofit also has a series on hospital stays, including what caregivers need to know about discharge plans. Its latest guide, out in English, Spanish, Chinese and Russian, is “A Family Caregiver’s Guide to Surgery for Older Adults.”

According to the latest statistics from the National Hospital Discharge Survey, done in 2006, elderly patients underwent 35.3 percent of inpatient procedures and 32.1 percent of outpatient procedures. That number is even higher today. Carol Levine, director of the United Hospital Fund’s Families and Health Care Project, makes a good point: “Most family caregivers focus only on the day of surgery and not on what comes before and after. Yet in terms of outcome, these may be the most important times to prepare for.”

• The Family Caregiver Alliance has updated fact sheets on caregiving issues. New, free online publications through the group’s National Center on Caregiving range from how to compensate a family member for providing care to “Downsizing a Home: A Checklist for Caregivers.”
• The Caregiver Action Network recently released an online video series for Alzheimer’s caregivers and an online guide for navigating Medicare.

More must-know resources:

• The National Alliance for Caregiving
• Caring.com
• Home Instead Senior Care
• The National Center for Creative Aging

Of course there are more. What did I leave out? What else should readers know about? Please share.

Photo by Humayunn N A Peerzaada courtesy of Creative Commons

Sally Abrahms writes about aging and boomers for national venues. Check out her website at www.sallyabrahms.com and follow her on twitter.