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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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:

For details on caregiving: 

AARP Rhode Island pushes its 2024 legislative agenda

Published in RINewsToday on February 12, 2024

Standing in front of an AARP backdrop in the Rhode Island State Room at the State House, last week AARP Rhode Island hosted a 34 plus minute press conference plugging the “aging” group’s 2024 legislative agenda. The nonprofit organization, representing 125,000 members, unveiled its four priority issues: to increase temporary care giver insurance to caregivers, to boost the availability of Accessory Dwelling Units (ADUs); to create a program to allow employees to save for retirement; and to eliminate the state’s income tax on Social Security. 

Gov. Dan McKee, House Speaker K. Joseph Shekarchi (D-Dist. 13, Warwick), Senate Majority Leader Ryan W. Pearson (D-Dist. 19, Cumberland, Lincoln), State Treasurer James Diossa, came to support AARPs efforts advocacy efforts, backing its four priority legislative issues. 

“AARP’s mission is to empower people to choose how they live as they age,” said State Director Catherine Taylor, in her opening remarks.  At the event, she called on lawmakers to pass AARP Rhode Island’s legislative agenda. 

Taylor took this opportunity to share the results of the 2023 AARP Rhode Island Vital Voices survey that reveals that Rhode Island residents age 45+ overwhelmingly would choose to remain in their own communities and own homes as they grow older. “In order for this to be a reality, Rhode Islanders must have financial security in retirement, affordable and accessible housing options, and access to resources that enable them to take care of those they love,” she said. 

Let us take a look at AARP Rhode Island’s legislative priorities for this year.

Boosting the State’s Housing Production 

With the strong support of House Speaker K. Joseph Shekarchi (D-Dist. 13, Warwick), one of nine Democratic cosponsors of H. 7062, it is expected that House leadership will send the approved committee bill to the floor this week for a vote. The legislative proposal would boost the state’s housing production by allowing a homeowner to develop Accessory Dwelling Units (ADUs) on their property.

ADUs, sometimes referred to as in-law apartments or granny flats, backyard cottages, or secondary units, allow seniors to downsize enabling them to live independently and age in place in their communities. The bill was written in collaboration with AARP Rhode Island, and is one of the aging group’s primary legislative policy goals. 

H. 7062, introduced by Rep. June S. Speakman (D -Dist. 68, Bristol/Warren), chairwoman of the House Commission on Housing Affordability, would boost the state’s housing production by making it easier for homeowners to develop ADUs on their property. It would give the property owner the right to develop an ADU within the existing footprint of their structures or on any lot larger than 20,000 square feet, provided that the design complies with local building code, size limits and infrastructure requirements. 

Sen. Victoria Gu (D-District 38, Westerly, Charlestown, South Kingstown) will shortly submit a Senate ADU companion proposal but has yet to drop it into the legislative hopper. One Senator noted that there will be technical differences between the House and Senate ADU proposals which will have to be ironed out. 

Assisting employees to save for retirement – Secure Choice

Rep. Evan P. Shanley (D-Dist. 24, Warwick, East Greenwich), throws H 7121, The Rhode Island Secure Choice Retirement Savings Program, into the legislative hopper. The bill would establish a convenient, low-cost voluntary retirement savings plan for working Rhode Islanders.

According to AARP Rhode Island, about 40 percent of Rhode Island private sector workers, about 172,000, ages 18 to 64 in 2020 were employed by businesses that do not offer any type of retirement plan.

The retirement savings program, administered by the office of the General Treasurer, would see retirement savings accumulated in individual accounts for the exclusive benefit of the participants or their beneficiaries. The bill would see no fiscal impact on the state’s budget.

H 7121 has been referred to the House Finance Committee for consideration. A companion measure (S 2045) has been introduced in the Senate by Sen. Meghan E. Kallman (D-Dist. 15, Pawtucket, Providence).

Under Shanley’s legislative proposal, the General Treasurer, who serves as the custodian of state funds for the Rhode Island government, would be charged with collecting contributions through payroll deductions and investing these funds in accordance with accounting best practices for retirement saving vehicles. The elected official would also be responsible for setting minimum and maximum contribution levels in accordance with contribution limits set for IRAs by the Internal Revenue Code. The law would become effective for ALL eligible employers within 3 months of the opening of the program enrollment following a phased implementation period. 

Caring for Caregivers

Senate Majority Whip Valarie Lawson (D-Dist. 14, East Providence) and Rep. Joshua J. Giraldo (D-Dist. 56, Central Falls) have introduced identical bills in their chambers that would expand Rhode Island’s Temporary Caregiver Insurance (TCI) program from six weeks to 12. It also increases weekly dependent’s allowances from $10 to $ 20 or 7% increase of benefit rate whichever is greater. That would bring the Ocean State in line with other states and allow new parents more time for parental leave and caregivers more time to care for a critically ill family member.

S 2121 and its House companion measure, H 7171, would also expand the definition of critically ill family to include grandchildren, siblings and “care  recipients,” defined as individuals for whom the employee is a primary caregiver.

According to AARP Rhode Island, the state’s unpaid family caregiver labor force totals 121,000, providing 113 million care hours per year.

The United States is one of only six countries in the world, and the only wealthy country, without guaranteed parental leave, according to the Bipartisan Policy Center. In recent years some states, like Rhode Island, have stepped up to offer their own programs.

According to a statement released announcing the introduction of S 2121, Rhode Island became the third state in the nation to offer paid parental leave in 2013 when legislators created the TCI program. TCI, which is paid for through payroll deductions, allows new parents to take six weeks of paid leave to bond with and care for their child. It also allows individuals to take this time to care for a seriously family member. That can prove vital for a working adult who needs to care for their spouse after a surgery or a terminally ill parent.

Since 2013, however, many other states have surpassed Rhode Island’s leave offerings. Currently, 11 states and the District of Columbia offer paid parental leave, with two additional states set to offer it beginning in 2026. Most offer 12 weeks, while Rhode Island offers the least amount of time at just six weeks, says the statement.

Finally, it was noted that individuals on TCI in Rhode Island receive 60% of their normal salary. Of the ten states that offer similar programs, most workers receive at least 80%. In Massachusetts, workers receive 80% of their salary for 12 weeks. Workers in nearby Connecticut receive 95% of their salary for 12 weeks.

Cutting Taxes 

According to AARP Rhode Island, more than one in five Rhode Island residents, that’s 230,018, receive Social Security benefits.  These payments inject more than $ 4 billion into the state’s economy every year.

But Rhode Island is one of 9 states that tax Social Security beneficiaries, says AARP Rhode Island. The state tax on Social Security undermines the purpose of the retirement program, charges the state’s largest aging group, estimating that this program has lifted 50,000 Rhode Islanders 65 or older out of poverty from 2018 through 2020.

Three Senate bills and one House bill have been introduced so far.   

S 2061, introduced by Deputy Minority Whip Sen. Elaine J. Morgan (R-Dist. 34, Charlestown, Exeter, Hopkinton, Richmond, West Greenwich), identical to a bill introduced last year, aside from the effective date would allow a modification to federal adjusted gross income for all Social Security income for tax years beginning on or after January 1, 2025.

Sen. Mark P. McKenney (D-Dist. 30, Warwick) has introduced S 2158 and House Deputy Majority Whip Mia A. Ackerman (D-Dist. 45, Cumberland, Lincoln) just submitted H 7588. These identical bills would gradually phase in modifications to the federal adjusted gross income over a four-year period for Social Security income, from 25% up to 100%, beginning on or after January 1, 2025.

And, Sen. Walter S. Felag, Jr. (D-Dist. 30, Bristol Tiverton Warren) legislation, S 2058, would increase the federal adjusted gross income threshold for modification for taxable social security income. This act would also amend references to the federal adjusted gross income as it pertains to modification of taxable retirement income from certain pension plans or annuities.

To watch AARP RI’s legislation reception, held Feb. 8, 2024l, go to https://capitoltvri.cablecast.tv/show/214?site=1.

For obtain the results of the 2023 AARP Rhode Island Vital Voices survey, go to:

https://www.aarp.org/research/topics/life/info-2022/aarp-vital-voices-surveys-older-adults-2022-2024.html – and scroll down to “Rhode Island”