Category Archives for Caregivers

Surviving, even thriving, when caring for a person with Alzheimer’s

Published in RINewsToday on March 3, 2025

Last Wednesday, Colleen Kelly Mellor, author and former feature writer for the Providence Journal, captivated a crowd at the Coventry Library with a talk about her caregiving journey. In her inspiring presentation, Mellor shared how she not only survived but thrived while caring for her husband, who suffers from Alzheimer’s disease.

Mellor, 79, has had a multifaceted career—raising two daughters, teaching school for over 30 years, and working as a realtor for nine years. The prolific writer is no stranger to seeing the devastating impacts of Alzheimer’s. Her father, two brothers and two cousins died of the cognitive disease.  And for the past 15 years, she has been her husband’s primary caregiver. For 13 of those years, she single-handedly managed his care, from ensuring he attended doctor’s appointments to overseeing his medications.  

This journey led her to write her latest book, Az and Me: A Partner’s Journey with Alzheimer’s.

The 284-page book, published last May, is a must-read for America’s caregivers. “The caregiving journey was so demanding, I felt compelled to write a book about what I learned—something that could help others,” Mellor explained. “I want to make sure they don’t repeat the mistakes I made, especially when I was uninformed, like not knowing about veteran benefits.”

What is the core message of Az and Me? Mellor stresses the importance of caregivers taking care of themselves. “Caregivers need to prioritize their own well-being, just like the airlines say: put the mask on yourself first, then on your child,” she says, adding that her book provides caregivers with the tools they need to do just that.

The Caregiver Journey Begins

“You can step out of the wreckage of your life’s journey,” Mellor encourages. “Keep stepping forward—even when you don’t want to and can’t see any change for the better. It will come if you persist.”

Mellor knows firsthand what that perseverance looks like. She admits that when her partner, Paul Wesley Gates, was first diagnosed with Alzheimer’s, she was unsure of what it truly meant to be a caregiver. But her message to caregivers, shared during last week’s library talk, was clear: find your footing and keep moving forward.

Mellor acknowledges that she paid the price for being uninformed. “I was one of those caregivers,” she says. Seven years ago, Mellor suffered a herniated disc and became disabled. At that time, she had no support system in place to help care for her husband, a 20-year career military veteran with Alzheimer’s. As she received medical treatment, she had to bring Paul to her appointments and medical tests because she had no support. “I prayed he’d still be sitting in the waiting room when I came out,” she recalled. During this period, Mellor had to place her husband in a care facility for a brief time. The cost? $8,000. Despite initially planning to keep him there for a month, Mellor pulled him out after just four days. The services promised to her were never delivered.

Through this experience, Mellor learned a valuable lesson: the importance of understanding available benefits. “I was paying full price for day care when I could have used my husband’s veteran benefits, which would’ve covered three of the four days,” she said. “No one—no doctor, social worker, or even facility—told me about the benefits he was entitled to,” Mellor added. “He could have stayed at a Vet-approved facility for free because of his military service, and I could have received respite care.”

For the past two years, Mellor has been visiting Paul, now 83, at the Veterans Home in Bristol. She and Paul married at her daughter’s home in East Greenwich last December so that, according to federal rules, she could be buried with her husband in Rhode Island’s Veterans Memorial Cemetery.  

A Guide for America’s Caregivers

Mellor is an advocate at heart, which is reflected in all of her self-published books. “I’m an advocate for people,” she says. In her children’s books, Grandpa and the Truck (Books 1 & 2), Mellor highlights the important role of truckers in our daily lives. In Boomerrrang, her real estate background shines through as she cautions people about buying and selling property. And in Az and Me, she champions the cause of caregivers and veterans.

Her Alzheimer’s book is easy to read, with super short chapters (just 1-2 pages). It’s meant to reach out to caregivers and share her journey, as well as provide practical tips to avoid the mistakes she made. Through her book and group presentations in Rhode Island, Connecticut, and Massachusetts, Mellor helps caregivers avoid pitfalls while navigating the demanding role of care provider.

Mellor shares snapshots of her and her husband’s life, highlighting the challenges they faced and offering practical strategies she used to cope with the stresses of caregiving. In her book, she explains how to determine eligibility for Veterans’ benefits and what those benefits cover. She also advises hiring a certified elder law attorney if needed, someone who understands the complexities of Medicaid eligibility, nursing home admissions, Medicare, Social Security, guardianship, and estate planning.

In her book, Mellor offers several practical tips for managing the challenges of caregiving. For example, when caring for someone with short-term memory loss, she suggests dressing your loved one in bright, easily visible colors. This makes it easier to spot them if they wander. She also recommends giving them a fake handbag or billfold, rather than the real deal, so you can easily access important medical documents. Mellor also shares tips on how to handle tough decisions, like when it’s time to take away the keys to the car. It’s one of the hardest decisions, she admits, but it’s necessary when it’s no longer safe for them to drive.

She advises caregivers to join an Alzheimer’s support group, choose a doctor they feel comfortable with, and divide caregiving responsibilities among family members. “A son can take Dad to his regular haircut appointment, then they can go out for lunch,” Mellor suggests.

Finally, she encourages caregivers to find moments of humor throughout the experience. “Laughter can be a lifesaver,” she says.Mellor likens her book to a box of chocolates: some pieces are sweet, others not so much—but all are essential. “There’s humor in it because my mission is to help caregivers cope and even thrive, not just survive,” she says.

In the end, Mellor sees Az and Me as a love story—one that shows how she and her husband found joy, even in the face of his debilitating disease.

To purchase Az and Me: A Partner’s Journey with Alzheimer’s ($20) or for more details about scheduling a speaking engagement, go to colleenkellymellor.com or call 401-480-3403.  

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It’s now time for Congress to give tax credits to America’s caregivers

Published in RINewsToday on February 24, 2025

Just a few days after the 119th Congress was sworn in on Friday, January 3rd, AARP, along with 94 organizations, sent a letter to Congress urging lawmakers to enact legislation to provide financial relief for America’s caregivers. This could be accomplished by including the bipartisan bicameral Credit for Caring Act of 2024 (S. 3702/H.R. 7165 introduced in the 118th Congress) in any tax legislation that is advanced during the new Congress, says the joint letter.    

S. 3702/H.R. 7165, introduced during the last session of Congress by Sen. Michael Bennett (D-Colorado) and House lawmakers Mike Carey (D-Ohio), would allow an eligible caregiver a tax credit of up to $5,000 for 30% of the cost of long-term care expenses that exceed $2,000 in a taxable year. The bills defined eligible caregiver as an individual who has earned income for the taxable year in excess of $7,500 and pays or incurs expenses for providing care to a spouse or other dependent relative with long-term care needs. 

The joint letter, dated Jan. 7, 2025, stressed that family caregivers make it possible for older adults, people with disabilities, and veterans, to live independently in their community and age in place at home.  It also cited an AARP study that found caregivers provided $600 billion annually in unpaid labor in 2021 to care for their loved ones. (This figure is based on about 38 million caregivers providing an average of 18 hours of care per week for a total of 36 billion hours of care, at an average value of $16.59 per hour). 

Caregivers take a hefty financial hit, too, having to cover out-of-pocket expenses associated with caregiving and losing income by cutting back on work hours or leaving the workforce entirely. When this occurs these individuals would see reduced Social Security and retirement savings by receiving reduced Social Security and other retirement benefits, noted the organizations in the correspondence. 

The joint letter also mentioned an AARP study that reported family caregivers spend on average, 26 percent of their income on caregiving expenses or over $7,200 annually. The uncompensated care saves taxes payers billions of dollars by delaying or even preventing admission to costly nursing home care and unnecessary hospital stays.  

The joint letter suggested that any tax legislation consider include a new, non-refundable tax credit of up to $ 5,000 for eligible working family caregivers would reduce the significant financial impact of caregiving.  Eligible caregivers caring for loved ones of all ages could receive the credit if the care recipient meets certain functional or cognitive limitations or other requires.  This tax credit would help working family caregivers regardless of whether they live with their loved one or if their loved one is a dependent. 

Overwhelmingly support for tax relief for caregivers 

A newly released AARP poll findings indicate that voters in competitive congressional districts want Congress to give financial relief to America’s family caregivers. The poll, conducted in late Jan. 2025, highlights a “clear, bipartisan mandate” say prominent pollsters from Fabrizio Ward and Impact Research. 

The bipartisan polling team conducted this survey of 3,000 registered voters nationally and 1,000 voters in the 28 most competitive House districts between January 27 and February 1, 2025. According to AARP, the districts chosen were the 15 Republican-held districts won by <5% of the vote in 2024, and the 13 Democratic-held districts that were also won by President Trump in 2024. The margin of sampling error for the national survey is ±1.8% and ±3.1% for the congressional districts survey.

The AARP poll findings reveal overwhelming voter support (84%) for Congress and the Trump Administration to act this Congress on a caregiver tax credit. Among various tax proposals currently being considered by Congress — including eliminating income taxes on Social Security, tips, and overtime pay—voters ranked passing a caregiver tax credit as their top priority. 

“America’s family caregivers put family first, helping their parents, spouses and others stay at home. They spend thousands of dollars every year on this care, while juggling work and family responsibilities,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy & Engagement Officer in a statement released on Feb. 11, 2025 announcing the results of AARP’s poll. “Without them, millions of older Americans would be forced into costly nursing homes—many at taxpayer expense. As Congress debates tax policy, the message from voters is clear: lawmakers must prioritize financial relief for hardworking Americans who are caring for their aging family members. AARP urges Congress to put money back into the pockets of hardworking family caregivers by passing a tax credit,” she says.  

Bipartisan

The poll findings indicate that support for the caregiving tax credit spans party lines, with strong majorities of Republicans (84%), Independents (82%), and Democrats (87%) in favor.  And support for a caregiver tax credit (84%) outpaces support for continuing the 2017 tax cuts (51%).  

Seventy-six-percent of voters agree that “Before Congress extends any tax breaks for the wealthy and corporations, it should support working Americans with a tax credit to help cover the expenses of taking care of a loved one.”  

Family caregiving crosses party lines, with nearly two-thirds of voters (63%) serving as family caregivers at some point in their lives—many of whom struggle financially. 

Most voters (63%) say they are worried about their personal financial situation.  Family caregivers nationwide, many of whom face financial struggles, spend an average of $7,200 in out-of-pocket expenses each year—making it harder to afford essentials like groceries and bills.

“Voters over the age of 50 are a critical voting bloc that all candidates should compete for every election cycle,” adds Tony Fabrizio, partner at Fabrizio Ward. “Our poll found that Americans of all political stripes want leaders to support family caregivers. Candidates looking ahead to the 2026 midterms should pay attention to this issue if they want to win,” he said.

Could tax credits for caregivers become a reality?

Maybe.  During the 118th Congress, Republican and Democratic lawmakers came together to cosponsor legislation that called for federal tax credits for caregivers. S. 3702, with 11 Democrats, 3 Republicans and 3 Independents, was referred to the Senate Finance Committee.  Its companion measure in the lower chamber, H. R. 7165, with 81 cosponsors (72 Democrats and 9 Republicans), was referred to House Ways and Means Committee.  Both bipartisan bills never made it to mark up or even to the House floor for vote. 

Tax Notes reporter Alexander Rifaat, who covers the White House and Treasury, reported in a web article posted on Oct. 29, 2024 that Presidential Republican candidate Donald Trump supported tax relief for caregivers. Rifaat noted that during his 2024 presidential election, at a campaign event held at New York’s Madison Square Garden on Oct. 27, Trump called for a national tax credit for caregivers who are “never spoken of” and stay at home. 

At the campaign event,  Rifaat noted that Trump told the crowd:  “I will support a tax credit for family caregivers who take care of a parent or a loved one. And it’s about time they were recognized, right?” 

Now, as President Trump has an opportunity to keep this campaign promise by calling on the Republican-controlled Congress to work with Democratic lawmakers to give America’s caregivers financial relief, through the passage of a national tax credit legislation that will benefit them.  It’s time to work together and put caregivers before partisan politics.

For a copy of the National Legislative Priorities Survey, Feb. 2025, go to www.aarp.org/content/dam/aarp/research/topics/voter-opinion-research/politics/federal-tax-package-legislative-priorities.doi.10.26419-2fres.00921.001.pdf.

For a listing of organizations urging Congress in Jan. 7, 2025 correspondence to provide financial tax relief to caregivers, go to www.nase.org/sf-docs/default-source/advocacy-documents/financial-relief-for-family-caregivers-credit-for-caring-act-sign-on-letter-january-2025-(1).pdf?sfvrsn=e6b0e0f0_1

www.bls.gov/blog/2023/celebrating-national-family-caregivers-month-with-bls-data.html

To read AARP’s Research Insights into Caregiving, go to www.aarp.org/pri/topics/ltss/family-caregiving/aarp-research-insights-caregiving/.

New report re-examines workplace policies and caregiving

Published in RINewsToday on June 10, 2024

As a newly released AARP and S&P Global report notes, working while being a caregiver is complicated.  While the researchers say that since the previously issued report in 2020, US employers have stepped up to the plate to offer access to caregiving benefits.  However, much more must be done. 

Since the 2020 AARP and S&P Global’s last report, employers have become attuned to the needs of working parents over the past decade and especially during the pandemic, and are now moving from awareness to action in providing support for employees with adult caregiving responsibilities.

Taking a look at caregiver employees

The report’s authors say this study “explores the workplace experiences of caregivers and how they use employer provided benefits and policies to remain successful at work while providing care at home. It reveals not only the challenges of balancing work and caregiving, but also how the right workplace policies can ease the burdens.”

According to the new analysis conducted last December by AARP and S&P Global, the unpredictable nature of caregiving for an adult is one of the biggest stressors the caregiver employee faces.  Sixty seven percent of family caregivers have a very difficult time balancing work with their caregiver responsibilities.  

Half of the working caregiver respondents reported having to make work scheduling changes, (including going in early, leaving late, or just taking time off because of caregiving responsibilities), the findings indicated.

The findings indicate that workers are even reducing hours at work.  Twenty seven percent of working caregivers have shifted from full-time to part-time work or have even reduced hours, while 16% have turned down a promotion.

Meanwhile the findings indicated that 16% have stopped working entirely for a period of time — and 13% have changed employers — in order to meet their caregiving responsibilities.

With the nation’s number of adults ages 65-plus projected to surpass the population of children by 2030, the report warns that US employers must continue to offer policies and benefits that are friendly and supportive of adult caregivers to keep them in the workforce.

In order to get a handle on the needs of working caregivers and understand the importance of employer benefits for balancing work and family care obligations, in 2023 AARP and S&P Global surveyed 1,200 self-identified caregivers who worked full-time or part-time at large US companies (employing more than 1,000 employees) and who provide at least six hours of care each week to an adult.

It’s complicated – being a working caregiver 

There were other key highlights from the Working while caregiving: It’s complicated report.  

Eighty percent of the survey caregiver respondents believe that companies were more understanding of childcare issues – rather than adult caregiving responsibilities.  The researchers say that this is particularly the case among caregivers who have an under-18 child at home and they have recent experience of both caregiving situations. Those caregivers without children reported less satisfaction with company support than caregivers with children (69% versus 89%, respectively).

For those working remotely, the survey’s findings indicate that they were more likely to feel penalized or discriminated against at work because of caregiving responsibilities when compared to in-office or hybrid workers (49% versus a combined average of 29%). The researchers say that this might reflect employer challenges in assessing and engaging with remote employees’ work-life needs.

Finally, the study found that among working caregivers providing more than 21 hours of care a week, 37% say they are experiencing significantly increased difficulty due to inflation. And for those providing fewer than 10 hours of care, 25% say inflation has made providing care significantly more difficult.

According to AARP, previous AARP research shows that of the nearly 48 million family caregivers in the US, 61% are juggling both work and caregiving responsibilities, including assistance with daily living activities, medical or nursing tasks, coordinating services and supports, transportation, shopping, and serving as an advocate for their care recipient. Most family caregivers provide at least 20 hours of care each week, equal to an unpaid part-time job.

The new report’s findings found that access to a flexible work schedule at the time of caregiving increased from 32% in 2020 to 45% in 2023. Additionally, the availability of caregiving policies or benefits increased in every category except unpaid leave. 

“As the backbone of America’s long-term care system, providing $600 billion every year in unpaid labor, family caregivers need and deserve greater support from their own employers,” said Susan Reinhard, Senior Vice President and Director of AARP Public Policy Institute, in a May 16th statement announcing the release of the 21 page report’s findings.  “As our population ages, it’s critical that employers support family caregivers in the workforce with the policies, such as paid leave, that can ease their everyday burdens,” she said.

“Despite the progress observed since 2020, the latest data shows the majority of employees with adult caregiving responsibilities continue to face barriers at balancing work and caregiving obligations and need greater support from employers through enhanced benefits and policies to stay engaged in the workforce,” noted Alexandra Dimitrijevic, Co-chair of S&P Global Research Council. “Employers can help by paying forward-looking attention to employee needs and the demographics shift of the workforce in the coming years,” she added.

Best Practices to support working caregivers

The report’s authors say that employers can do more to support working caregivers and detail best practices that companies can take to support their employees. 

They call on companies to consider offering and support flexible schedules and flexible work locations either hybrid/remote. Employer-supported access to support groups, career coaching and financial advising resources could be offered.  Paid leave specifically for caregivers and/or flexible leave can be used to help with caregiving duties, they suggest.

Yes, information is power.  Companies could host free sessions to highlight how caregiving employees can optimize employer benefits and policies, as a way to address the lack of awareness in using benefits.  Senior leaders could be asked to share their stories as to how they have used the company’s caregiver-supportive benefits and policies, signaling to both people managers and their teams that they are encouraged to use them.

The report’s authors urge companies to train people managers on caregiver-inclusive managerial practices and ensure that they are aware of caregiver-supportive benefits and policies. They must make it clear that it is safe to use them all without incurring career risk.

Finally, companies can start or support an Employee Resource Group (ERG) for parents and caregivers or create a caregiving initiative across all ERGs. 

To view the full 2024 report:

https://www.spglobal.com/en/research-insights/featured/special-editorial/working-while-caregiving.

To view the 2020 report:

Click to access somethingsgottagive_spgiaarp.pdf

For details on caregiving: 

Click to access full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf