July 19, 2022

Caregiving’s Toll on Work Happens Quickly

Caregiving often wins out in the struggle between work and fulfilling one’s obligation to a family member or friend who needs help.

Researchers have documented the phenomenon of workers being forced to eventually leave their jobs so they can devote more time to the person in their care. But the impact on the work lives of the people who are new to their caregiving duties is often dramatic and happens very quickly, a new study finds.

Employment levels for workers who become caregivers declined by 6 percent within a year after they started, and most of the drop occurred because they left the labor force entirely, according to the analysis linking Census Bureau surveys on informal care with the Social Security Administration’s employment records for working-age adults.

The decline in employment may occur as early as four months after caregiving starts, based on a second analysis using only the Census data.

Caregivers who decide to stop working are also more likely to go on federal disability – either right away or years later. Many of the people receiving the benefits are older people who, despite their disabilities, had persisted in their jobs. Once they were needed by a family member, they may have decided to apply for disability to offset some of the loss of income from working.

Indeed, the largest employment declines were experienced by people over age 62, who often have an elderly parent or spouse in need of care – and sometimes both. For many of them, leaving a job coincided with claiming their Social Security benefits in an indication that caregiving is often pushing them to retire. Workers between 45 and 61 saw a smaller decline in employment after becoming caregivers.

Men’s and women’s paths from worker to caregiver are different, however. Women report small declines in their employment levels, and they return to the labor force relatively quickly. The impact on men is more dramatic and long-lasting. …Learn More

April 19, 2022

UI Benefits Can Get Caregivers Back to Work

When older workers are laid off, the timing of the career disruption could not be worse – when they should keep working and saving for retirement. Their situation is even more precarious if a parent or spouse is in need of care.

A new study shows that people who become unemployed mid-to-late career are more vulnerable to being pulled into the demands of caregiving, which can derail their efforts to find another job.

Intensive caregiving spells usually kick in about four months after a job loss and can continue for up to 12 months – and possibly longer – according to the research, which was based on U.S. Census surveys of the unemployed prior to the pandemic.

“Family caregiving needs have the potential to turn short-term employment shocks into longer-run decreases in labor force participation, impacting the economic security” of future retirees, concluded Yulya Truskinovsky at Wayne State University.

But she also uncovered another factor in workers’ calculations: the generosity of unemployment benefits, which vary dramatically from state to state. The federal and state governments share the cost of the benefits, but states set the minimum and maximum benefit levels. During the pandemic, for example, the weekly maximum in Massachusetts was 3 1/2 times more than Mississippi’s, far exceeding the difference in the two states’ cost of living.

More generous unemployment benefits could cut one of two ways. They might give the worker enough income to support being a caregiver rather than returning to the labor force right away. The downside of taking so much time off is that it could be harder to eventually find a new job.

But the researcher finds that the opposite occurs: more generous benefits sharply reduce the likelihood that someone takes on caregiving duties after losing a job. Benefits that replace more of a worker’s earnings may make it easier to hire a professional caregiver or continue paying an existing one so the worker can focus on a job search. …Learn More

February 1, 2022

Every Caregiver’s Challenge is Unique

Caregivers for loved ones with dementia experience their duties in ways that are unique to the individuals they’re caring for.

Some wrestle with the behavioral issues of the people in their care, while others must balance caregiving and work or struggle to navigate the Medicaid system, line up day care, or track down a reliable in-home professional.

“There is no one way to care for a loved one who has dementia,” says Amy Goyer, caregiver and author of “Juggling Life, Work and Caregiving.”

Goyer feels that every caregiver’s perspective could be useful to someone else going through the same thing. She recently hosted a webinar that opened a window on the lives of three Pennsylvania caregivers – one for a father, one for a husband, and one for a partner’s mother.

The three women had a couple things in common, including the stress of shouldering the burden and the strain on their finances of paying for the all-day care that family members required, especially in the later stages of dementia.

But the similarities ended there. To understand the variety and depth of each person’s experience, there is no substitute for hearing directly from them in this webinar, which was sponsored by AARP, the Alzheimer’s Association, and the Pennsylvania Association of Area Agencies on Aging.

Here are snippets of their stories:

Robin Madison’s husband had Lewy body dementia, and Madison had four jobs: wife, mother, breadwinner, and caregiver. Her husband was 18 years older, and she was fully aware that she might one day have to take care of him. On the good days, he could be entertained by playing music on his tablet or watching television for hours. But he was often ill-tempered and difficult to manage.

Madison described her seven years of caregiving as a “battle” – a battle to get a diagnosis, to work at home while her husband roamed the house, and to secure consistent end-of-life caregivers for her husband, who died last year.

In the final months of his life, he was receiving in-home hospice, which proposed sending him to a facility close to home – for $10,000 a month. Should Madison pay that bill or pay for college for her son, Morgan? “I had to choose my son and his future,” she said. The pair shared caregiving duties.

Madison stressed that it was important to get something positive out of a very difficult time. Her son decided they should donate his father’s brain to science “to help somebody else,” she said. Madison is grateful to have emerged from the experience with a stronger bond with her son. “All we had was each other,” she said. Turns out that was a lot to have.

Diane Powell’s family could not afford professional care for her mother and father either. But one of the hardest things for Powell and her sister, who shared caregiving duties, came early in their father’s dementia, when they were “trying to figure out what is wrong.” Something was clearly amiss when her father, who owned a trucking company, would get lost on the road and couldn’t remember how to get home. A family member would figure out where he was and drive there to guide him home. …Learn More

November 4, 2021

How to Pick (or Be) a Retiree’s Financial Ally

If you need help managing your finances in old age, it’s a lot of work to find someone – and not a very pleasant task to think about.

But it’s crucial that retirees plan for this. As to when or whether you might need help, it really depends on your individual circumstance.

Attorney and researcher Naomi Karp cites a variety of studies that provide some clues to the different ways this process can play out. People who develop dementia obviously need what she calls a financial advocate. This might be a trusted friend, family member, lawyer or professional financial adviser.

But roughly a third of aging Americans who are experiencing natural cognitive decline are prone to making poor decisions about their money, she explained during a recent webinar sponsored by the federal Consumer Financial Protection Bureau (CFPB) where she used to work.

Financial acumen actually peaks well before retirement – at 53! – but wisdom makes up for some of that, she said. During one’s 70s and 80s, financial literacy declines, but unfortunately confidence about one’s abilities remains high. “That’s a risky situation,” Karp said.

She and other financial experts have put together an interactive website – the Thinking Ahead Roadmap – with six steps to follow to find an advocate. Each step has tips, tools, and information to guide you through the process. An adult child or caregiver could also use this website if they feel the need to assume more responsibility for an elderly parent’s finances. …Learn More

October 14, 2021

Caregivers Lament Elderly’s COVID Isolation

The magnitude of the tragedy is unfathomable: Americans have lost nearly 187,000 family members living in nursing homes to COVID-19.

Even when residents survive outbreaks in the facilities, their family caregivers experience trauma. Barred from visiting residents during the lockdowns, caregivers observed – on Zoom, over the phone, or from the other side of a nursing home window – loved ones suffering from the devastating impact of isolation.

“To think in her final year[s] when she is most vulnerable and most in need of love and support from her children and was denied this for 6 months is in my opinion devastating,” one caregiver said in a survey of 518 caregivers, the vast majority of them women and mainly daughters.

Granted, nursing homes – and the entire country – were not prepared for a once-in-a-century pandemic that has been difficult to control, given that COVID-19 is often asymptomatic. The lockdowns were a health precaution. Many nursing homes were also put in an untenable position when COVID-19 created staff shortages as nursing assistants and other workers took time off after contracting the disease or simply quit their jobs. And perhaps better communication between nursing home staff and family members would have eased some of the concerns.

Nevertheless, the caregivers’ perceptions of what unfolded inside nursing homes are alarming. “Anger,” “helplessness” and “heartbreak” were common reactions, conveyed in the survey compiled in the Journal of Aging & Social Policy.

The situation became so untenable for 30 of the caregivers surveyed that they pulled their parent or family member out of a facility and brought them home to live with them.

Four themes pervaded their descriptions of what their loved ones were going through: social isolation, cognitive and emotional decline, inhumane care, and a lack of oversight at the long-term care facilities.

The source of many caregivers’ concerns were nursing homes’ decisions to confine residents to their rooms to prevent contagion. But one caregiver said that while her mother’s facility went to great lengths to keep her healthy, the staff did little to ease her isolation: “Almost no effort has been made to ensure [her] mental health due to the isolation. Staff rarely stay and visit with Mom, no special in-room activities or stimulation has been attempted.” …Learn More

September 16, 2021

Retirees’ Need for Caregivers Varies Widely

Nothing causes dread in a retiree quite like the prospect of having to go into a nursing home someday or becoming dependent on someone who comes into the house to help with routine daily needs.

But media reports or studies with alarming predictions of infirmity in old age are not very useful to retirees or their family members. A new study provides a more nuanced picture of the various scenarios that can play out.

Researchers at the Center for Retirement Research estimated that roughly one in five 65-year-olds will die without using any care, and another one in five will need only minimal care.

But one in four will have such severe needs that they will require high intensity support for three years or more. The largest group of people – 38 percent – will fall somewhere in the middle: they are likely to need a moderate amount of care for one to three years. A strong indicator of how much assistance someone will require is whether they are healthy in their late 60s.

To determine future need, the researchers combined two dimensions of care: intensity and duration. The intensity of care varies widely. Many retirees can remain largely independent if they hire someone for a couple days a month to clean house or manage their finances, while others will need round-the-clock support.

The duration of care also varies. The researchers divided duration into three categories: less than a year, one to three years, and more than three years. Many retirees need assistance for only a few days or weeks after being released from the hospital. But others, including people who develop severe disabling conditions such as dementia, may need years of care.

The researchers used 20 years of biennial surveys of older Americans and data on caregivers to predict the share of 65-year-olds who will have minimal, moderate, or severe lifetime needs.Learn More

July 1, 2021

An Appreciation of Professional Caregivers

My 85-year-old mother had been up a few times during a night in early June and still wasn’t feeling well in the morning. I called her doctor, who sent a prescription to her pharmacy, and went about my day’s work. But when I checked in that afternoon, mom was in a full-blown medical crisis that she and her 92-year-old male companion did not think was bad enough to tell me about.

I asked her companion to call the EMTs, who immediately dispatched mom to an emergency room a few miles from her Orlando retirement community. These events marked the start of my maiden voyage as my mother’s caregiver from 1,300 miles away in Boston. It was a high-stress affair that challenged all my organizational skills and stamina – an experience I am, no doubt, destined to repeat.

I’ve heard about the stresses of caring for an elderly parent but had only a vague sense of what that would be like. Nearly a week was consumed with keeping tabs on mom’s medical care at the hospital and what she needed, tracking down busy nurses and doctors – in a pandemic! – for updates on her condition (pneumonia) and treatment. Finally, upon mom’s hospital release on a Sunday, I wanted to make sure nothing else would go wrong at home.

The clouds started to lift when I hired three professional caregivers – Rachel, Nadine, and Rosa – to keep an eye on my mother for the first 24 hours at home. I developed a great appreciation for their kindness and efficiency and the unique talents each one brought to the job.

The hiring process wasn’t seamless, however, due to the COVID. My mother and her partner are fully vaccinated. But Florida has a much lower vaccination rate – 62 percent of adults have at least one dose, compared with 81 percent in Massachusetts – and I quickly learned that 35-year-old Rachel, the first caregiver assigned to mom, was among the unvaccinated.

I was about to cancel the contract with the company employing the caregivers when they offered to give Rachel a rapid COVID test. That worked for me. Having made my intentions crystal clear, the company texted me Nadine’s and Rosa’s vaccine cards for the later shifts. …Learn More