It Won’t Be Much, But in Some Cases Caregivers Can Get Paid

Senior woman with her caregiver
Senior woman with her caregiver
The estimates vary between 66 and 70 million, when it comes to the number of people in the United States serving as unpaid caregivers for family members with disabilities.
The good news is that in some instances, these overworked and stressed out people may at least be able to get something for all the effort they spend on behalf of a loved one.
While the potential for being reimbursed for caregiver services varies widely from state to state programs do exist, according to articles on the websites and
“Some states offer limited programs that pay family members to take care of an elderly parent,” the entry at states. “Budget cuts at the state level, however, have further reduced options. Programs within the 50 states vary as to what if any programs exist, who pays for them and even what they are called. ‘Participant and Consumer Directed,’ ‘Cash and Counseling’ are a few of names that refer to programs which allow folks to choose and pay a family caregiver. Many of these programs offer inadequate wages and strict income eligibility requirements including those compensated by Medicaid.”
“If you’re one of more than 70 million people who provide unpaid caregiving for a family member or friend, either in that person’s home or in your own, you know that the time and energy burden can be enormous, begins. “In fact, you may have cut back or given up your paying job. Your smaller, or now nonexistent, paycheck may be pinching you hard. If so, it might be possible for you to get a small but regular payment for your caregiving work.
“Here’s how: If the parent, spouse, or other person you’re caring for is eligible for Medicaid, its Cash and Counseling program, available in some states, can provide direct payments that could go to you. A few other states have similar programs for low-income seniors, even if the person receiving care doesn’t quite qualify for Medicaid. Also, if the person you’re caring for has long-term care insurance that includes in-home care coverage, in some cases those benefits can be used to pay you.”
The entry goes on to advise that in instances where the family member receiving care is willing and able to pay the caregiver, “it may be a good idea, for both of you, to draft a short written contract setting out the terms of your work and payment.”

AARP Brings New Attention To Role, Plight Of Caregivers

senior woman with home caregiver
senior woman with home caregiver
Calling them an “invisible army of 40 million heroes,” the editors of the American Association of Retired Persons Bulletin in November squarely placed the focus on these unseen caregivers.
In an editorial that accompanied “Caregiving in America 2015,” statistics from a recent report conducted by the AARP and the National Alliance for Caregiving estimated that many people are donating 37 billion hours a year for free to look after family members or friends who are frail, disabled or ill. The study suggested this time is worth as much as $470 billion.
A separate article on the same study by the AARP Public Policy Institute focuses on the extraordinary amount of stress these caregivers face.
“High-hour caregivers, who provide unpaid care for 21 hours or more each week, report the highest stress of all caregiving groups …,” according to the article
“The typical high-hour caregiver provides care for an average of five years and expects to continue care for another five years. With an average household income of $45,700, caregiving creates not only emotional strain but financial strain. Higher hour caregivers reported difficulty in finding affordable caregiving services for them and their loved ones in the community. Likewise, long-distance caregivers reported higher than average financial strain.”
“As previous AARP research has shown, we’re facing a caregiving cliff,” Dr. Susan Reinhard, senior vice president and director of the AARP Public Policy Institute and chief strategist with the Center to Champion Nursing in America, was quoted as saying. “By mid-century, there will only be three caregivers available for each person requiring care.
That means we need to provide support for existing caregivers who are underserved by the current long-term services and support system to avoid putting them at higher risk as they age.”

Caregivers Can Use Checklist For Loved One’s Legal Affairs

Caregivers have so very many responsibilities toward their loved ones, but some may not realize that keeping track of their legal affairs is almost on a par with watching out for their physical health, a recent article on the website of the AARP points out.
“The ultimate goal is to make sure you have all the decision-making rights you need to manage your loved one’s affairs,” Charles Sabatino, director of the American Bar Association’s Commission on Law and Aging, was quoted as saying.

Sabatino offered six tips to protect a relative’s legal rights as well as those of the caregiver.
Have the right documents
In addition to a will, make sure your loved one has a health care power of attorney as well as a power of attorney for financial decisions. These legal documents will allow an appointed person to make decisions for a frail or incapacitated relative.
Make a family plan
Discuss caregiving matters with all involved members of your family. Have your loved one put in writing who will be responsible for which caregiving roles — and have all parties sign. This is not a legal document, but it will help keep peace within the family by making everyone’s role clear
Organize important papers
Most people don’t realize how many legal documents they already have, or how many they will need for matters that arise. Important ones include birth and marriage certificates, divorce decrees, citizenship papers, death certificate of a spouse or parent, power of attorney, deeds to property and cemetery plots, veteran’s discharge papers, insurance policies and pension benefits.
Explore potential financial help
Investigate public benefits such as Social Security and Supplemental Security Income disability programs, veterans’ benefits, Supplemental Nutrition Assistance Program, formerly known as food stamps, Medicare and Medicaid. Also, examine your loved one’s private disability or life insurance coverage, their pension benefits, long-term care insurance and employee health insurance policy to see whether any of them cover home health visits, skilled nursing, physical therapy or any kind of short-term assistance that could include a mental health therapist or physical therapy.
Think beyond your loved one
If your parent is unable to take care of people who depended on him or her, you may need to take care of that role. This includes assuming responsibility for adult children with special needs.
Look for tax breaks and life insurance deals
Keep all medical expense receipts for tax deductions. Your family member may claim federal deductions for many medical expenses including a hospital bed or wheelchair, out-of-pocket expenses not covered by health insurance (drug costs and copayments), remodeling the home to make it handicapped accessible and a respite caregiver to give the main caregiver a break.

Devices Make It Easier To Monitor Mom And Dad’s Activities

When adult children live far from their older parents, they’re likely worried about how active mom or dad is being.
As the saying increasingly goes, there’s an app for that.
“Technology is making it easier for us to monitor our loved ones,” according to a recent story in The Washington Post by Matt McFarland.

The story goes on to examine products from two companies that enable caregivers a way of remotely staying on top of how well older loves ones are doing.
“GreatCall, which offers devices that keep the elderly in touch with their caregivers, has partnered with an artificial intelligence company to send automated reports to concerned children and grandchildren,” according to the story. “The idea is to empower the elderly to live more safely on their own, while easing the worries of caregivers.
“Automated Insights, which specializes in turning mountains of data into plain English, will be providing weekly recaps to caregivers, so they have a better idea of how their loved one is doing. While a grandparent might at times be reluctant to share bad news, the device and automated emails never mince words. Automated Insights’ algorithm is currently used for generating everything from snarky fantasy football recaps to write-ups on”
“We’re able to show some of the promise of what is going to be possible in the future as we get access to data that’s available on other devices, sensors or things of that nature,” Automated Insights chief executive Robbie Allen told the writer. “We’re able to tell a story about data in a way that’s engaging and provides a layer of value on top of that data.”

Caregiving: Stress, Yes, But Also ‘Joy And Enrichment’

There are two sides to the coin of becoming a caregiver for an aging parent, something more and more people are discovering.
On the one hand, almost everyone would expect this to be enormously stressful, both physically and emotionally.
But on the other hand, as pointed out in a recent article on the website of the University of Missouri-Kansas City, there are some very real rewards, as well.
“The time of caring for an older parent or relative can be one of joy and enrichment,” according to the article. “It can be a period of increased sharing, a renewal of that special closeness that has perhaps slipped away over the years; a time of rediscovering the family history. It can be a time for the healing of those old wounds left festering from childhood or adolescence. It can be a time for renewing old friendships or gaining wisdom from an elder.
“The majority of caregivers actually report that providing care makes them feel useful. Many anecdotal reports attest to caregivers’ satisfaction knowing that their older relative is receiving help while remaining in the community. For many caregivers the giving of assistance is not a one-way street. Rather, it is part of a mutual aid pact, as approximately one fourth of caregivers report that the older person for whom they care helps financially or with household chores.”
To be sure, the role-reversal of the children taking care of parents is not all sharing and renewal, as the UMKC researchers point out in citing numerous academic studies
“A pervasive theme found in the research centers on the burden and the stress of caregiving,” the article continues. “The caregiving process can be a time of increased anxiety and difficulty, particularly when the responsibilities of working, marriage, child rearing and parental caregiving collide. When the demands of work, spouses and children are juxtaposed against those of an aging parent with many needs, severe emotional drain can occur. Some research even reports that although most caregivers feel ‘close’ to their care receivers, an inverse correlation exists between the closeness of kin relationship and the ability to get along without rancor.
“If there are prior family problems lurking in the background, such as abuse, neglect or denial of emotional or financial support, there can be a potentially dangerous situation because the caregiver who was abused now is in the position of power.”

Advice On Making Right Choice For Help With Elderly Care

The cost of hiring someone to help care for an elderly relative has remained fairly steady in recent years, according to a recent item in The New York Times.
It’s still about $19 an hour for a hired homemaker, someone takes care of things like cooking and cleaning. A home health aide, who can assist with personal care such as dressing or bathing, costs only $1 more an hour, according to the article by Ann Carrns.
Those figures represent an increase of only about 1 percent over five years ago, according to the story.
Something else that hasn’t changed, the writer points out, is that it takes some digging to make certain the homemaker or health aide is the right person to be given the job.
Carrns offers these suggestions, with a little help from experts:

  • How do I know what kind of caregiver my family member needs?
    You can assess needs, like his or her ability to handle activities of daily living such as dressing, eating and bathing, using a checklist, like one provided by the National Caregivers Library. Or, you can have a professional conduct the evaluation, which is advisable, said Amy Goyer, a specialist in home and aging with AARP. To find someone qualified to do the assessment, you can contact your local office of the National Association of Area Agencies on Aging for a referral. You can find the one nearest you on the federal government’s Eldercare Locator site.
  • How do I go about finding a home caregiver?
    One option is to use a home care agency, which will screen and train caregivers to make sure they can provide the level of care needed. Since the agency employs the caregiver, it also handles payroll tasks. An agency can also schedule alternative caregivers if your primary caregiver is ill or unable to work. Because the agency offers these services, its hourly rates may be higher.
  • What if I prefer to hire someone myself?
    You may be able to obtain a lower rate by hiring someone directly. But if you hire a caregiver yourself, you’ll have to handle payroll and possibly taxes, said Leah Eskenazi, director of operations for the Family Caregiver Alliance, a nonprofit that helps people caring for relatives. Ms. Eskenazi advises that word of mouth is often a good way to start your search; friends or family members who can vouch for a caregiver’s skill and reliability can be good first references. The AARP website offers a tool to search for an agency by ZIP code.

In addition, Carrns advise that websites like also help find independent candidates in a given geographic area.

Act Would Recognize Sacrifices Of Caregivers

Although it would appear, in this political day and age, to have much chance of passage, a New York congresswoman showed some real courage in the summer when she introduced the Social Security Caregiver Credit Act.
The measure, if passed, would offer some small attempt to make whole wage earners who forego income to care for their children or, increasingly, elderly parents or other relatives. Since Social Security payments are based solely on income, and not acts of kindness or meeting familial obligations, caregivers often face a grim future when it’s their turn to retire.
On the website of the National Organization for Women, which backs the measure because caregivers are disproportionately female, the act introduced by U.S. Rep. Nita M. Lowey is recognized for its fairness.
“The caregiver credit option is a responsible preventive measure,” the site states. “It would provide improved retirement security for millions of Americans, especially women, whom the caregiver role often falls upon, and recognize the valuable caregiving services that they provide for our country’s children and the growing elderly population.”
“It’s hard to feel optimistic about its passage in this political environment,” Paula Span wrote a The New York Times article about the measure. “But you can’t really argue with the problem it tries to address. The toll that family caregiving can take isn’t only emotional and physical; it’s also financial, but not always in obvious ways.
“The groceries you pick up on the way to see your mother, the utility bills you quietly pay for your aunt, you’re aware of those. If you cut back your hours, turn down promotions or leave your job, as some caregivers feel forced to, you’re keenly conscious of your lost income.
“But I wonder how many people consider the ways that their own retirements, years down the road, may suffer. The pressures of caring for a disabled or dependent family member can reduce Social Security income for the rest of the caregiver’s life.”
The impact can be profound, according to the article.
“A MetLife study in 2011, based on data from the national Health and Retirement Study, estimated that men who reduced work hours to provide care for parents received almost $38,000 less in Social Security benefits,” Span continued. “If they stopped working, they gave up more than $144,000. The damage from cutting back on work was worse for women: they lost more than $64,000 in Social Security benefits. Leaving the work force to care for a parent cost them more than $131,000 in addition to the lost wages and, sometimes, pension contributions themselves.”
“We should ensure that caregivers won’t have to be torn by the impossible choice of taking care of a family member, or earning less for themselves and their family,” Lowey stated via email

Difficult Discussion On Dying Can Be Helped By Web Resources

Almost nobody wants to have “The Conversation.”

85 years
(Photo credit: jaded one)
Talking to an older relative, whether it’s a mother, father or sibling, or a friend about death is a burdensome task most people put off until, of course, it’s too late to have anything at all to discuss. It’s probably at that point most wish they had found the strength of will and the courage to address the topic a long time ago.
Fortunately, in the Internet age there exist sites that can help, if only a little, to push The Conversation along, notes a recent item on the website of The New York Times.
“You can log onto the Conversation Project, for example,” author Paula Span wrote. “Established two years ago by the former syndicated columnist Ellen Goodman, it will guide you through discussions of fears, values, medical options. Or you can turn to Prepare, created last year by a geriatrician, Dr. Rebecca Sudore of the University of California, San Francisco. Readers here have also recommended the Five Wishes document. And to be sure doctors follow your or your relatives’ wishes precisely, a P.O.L.S.T. form is your strongest protection when frailty or illness becomes advanced.”
These sites and forms help, Span notes, but she goes on to point out that The Conversation still has to take place.
“But then what? There is still scant discussion, except from experienced hospice staff members, about what to expect when death comes very close. How do you deal with pain, everyone’s great fear? What is dyspnea (answer: shortness of breath), and what can be done to ease it? How is palliative care different from hospice care, and which do you need? What are the actual signs, physical and emotional, of approaching death? Families and friends need to know these things, especially when they are trying to help a loved one die at home, where most people say they want to die, although only a minority do.”
The Internet once again rides to the rescue, according to the writer, in the form of a “new web resource from the National Institutes of Health aims to help fill this gap. already covers an array of topics of interest to older adults and their caregivers, including exercise, diet, long-term care, drugs and management of common diseases.”
“Its latest module addresses the end of life. Developed by the National Institute of Nursing Research, the section answers questions about death and dying. I found it candid and comprehensive — it takes on subjects from opiates to autopsies — and well-designed for older users, with brief, clearly written segments in large print.”

Elderly Self-Neglect Up To Others To Notice

The question is not if but when.
It is inevitable that as people get older, at some point they will no longer be able to take care of themselves. By then, however, the individual is in no position to be the judge of needing help, and the difficult decision of stepping in must fall to loved ones.

(Photo credit: Barbro_Uppsala)
“For inexperienced family caregivers, knowing when to get involved and where to go for help is not always clear, but its importance is unyielding,” according to a recent article on the website for Family Private Care Inc.  “The Public Policy Institute of AARP reports that self-neglect represents nearly 40 to 50 percent of all cases reported to states’ Adult Protective Services. Self-neglect often occurs when aging adults become unwilling or unable to manage necessary self-care, including personal grooming, general maintenance in the home, financial management, social affairs, and other standards of living.”
The website offers these possible signs for which friends and family members should look:

  • Malnourishment due to poor eating habits and inadequate nutrition at home
  • Poor personal hygiene, including dirty clothing, hair, skin, nails, etc.
  • Not receiving proper medical attention
  • Isolation from friends, family and regular activities
  • Noticeable changes in the home, such as repairs that need to be made, hoarding, expired food/drink in the kitchen, unusual smells
  • Self destructive behaviors, like excessive alcohol or drug use

“Struggling to perform these self-care tasks make individuals vulnerable to other serious health hazards,” the site warns. “To help protect elderly loved ones, be aware of the signs of self-neglect and observe his or her behaviors. Stay in close contact with loved ones and voice your concerns to those around you.
“Those who need help the most will likely be the first to refuse it. This puts caregivers in a tough situation. Be patient and encourage your loved one to accept help, and offer your support when necessary. If you feel that your loved one is in immediate danger, however, seek professional help.”

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Caregivers Need Care Themselves

The emotional and sometimes physical stress of caring for a loved one with Alzheimer’s disease or some other form of dementia is intense.

Care in the home
(Photo credit: British Red Cross.)
A recent blog on The New York Times by Jane E. Brody highlights a book by San Jose, Calif., psychologist Judith L. London that focuses on 54 people caught in this plight.
“She based each of the stories on situations confronting caregivers she has encountered, offering suggestions that could help others in similar circumstances,” Brody wrote. “The challenges include convincing patients or other relatives that something is really amiss, that lapses are not only a result of the gradual decline in memory that can accompany aging, as well as keeping people with dementia from slipping unnoticed out of the house and getting lost.”
“Caregiving is an act of love, even for paid caregivers,” London said in an interview. “You put so much of yourself out there all the time, especially with Alzheimer’s patients. The average span of the disease is seven years and it can go on as long as 20 years, and the challenges only increase with time.”
London’s new book is “Support for Alzheimer’s and Dementia Caregivers: The Unsung Heroes,” and it is a sort of follow-up to her first book, “Connecting the Dots: Breakthroughs in Communication as Alzheimer’s Advances.”
“Dr. London worries a lot about the stress on these caregivers, and rightly so,” Brody wrote. “According to the data from Stanford University and the Alzheimer’s Association, more than 15 million people provide unpaid care for family members or friends with Alzheimer’s disease or other forms of dementia. The strain of the task has been shown in many studies to increase the risk of a variety of illnesses, and even death.”
“(C)aregivers are often the casualties, the hidden victims, of Alzheimer’s disease,” London was quoted as saying. “No one sees the sacrifices they make.”

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