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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Advocates call for Governor to reject budget cuts they say would harm older adults

Published in RINewsToday on Oct. 28, 2024

As the state’s Office of Management and Budget (OMB) holds its Revenue & Caseload Estimate Conference to discuss the economic and revenue outlook for the upcoming legislative session, the Senior Agenda Coalition of RI (SACRI) warns of “onerous budget cuts” proposed by state agencies overseeing programs and services for Rhode Islanders. At press time, the state’s Medicaid and the Office of Healthy Aging offices proposed 7.5 percent budget cuts to be included in the upcoming fiscal year 2026 budget. 

“It is unconscionable that at a time when our older population is growing – projected to reach one out of every four Rhode Islanders in a few years — to propose budget cuts for programs proven to keep them healthy and safe and that in the long term can save taxpayers money,” says SACRI Board Chair, Diane Santos.

According to Santos, the requests put forward by the Office of Healthy Aging (OHA) include a reduction in state funds for the Meals on Wheels home-delivered meals program projected to cause 13,000 fewer meals to be delivered to persons unable to shop and prepare meals; cuts in funding for local Senior Centers and programs for older adults; elimination of grants to provide security services in elderly housing; and decreased funding to support the Elderly Transportation program. 

Santos warns that proposed changes in Medicaid eligibility guidelines are projected to cause hundreds of vulnerable older adults and persons with disabilities to lose state Medicaid coverage for their nursing home care and cause nursing homes, many of which are already struggling financially and face critical worker shortages, to lose millions of dollars if implemented. In addition, changes in the Medicaid CNOM (Costs Not Otherwise Matchable) program could reduce federal dollars that match state funding and impact hundreds of persons receiving home care and adult day services that help keep them living at home, the proposed cuts could result in greater spending in other areas.

For example, says Maureen Maigret, SACRI Policy Advisor, “Brown University researchers have shown that funds spent on home-delivered meals can delay or even prevent costly nursing home care.”

Over the years, Maigret noted that SACRI has worked to boost state funding to communities to assist them to operate local senior centers and programs. These serve hundreds of older adults and families across the state with a wide range of programs that keep older adults healthy, informed and connected to their communities, she noted.

SACRI has called for the state’s budget to provide ten dollars for each person aged 65 and over to Rhode Island’s 39 cities and towns, says Maigret, calculating that this amounts to about $20 per older adult. “The proposed cuts now being considered fail to recognize the increased need for these services due to the significant growth of our older population,” says Maigret.

Drawing a line in the sand

At press time, SACRI and its partners delivered a letter to Gov. McKee urging him to not balance the state budget on the back of Rhode Island’s older adults, stressing that the “potential ripple impact on families will be significant.

“Nonprofits and those who will be impacted need to know that SACRI and its partners are closely watching this process and are ready to advocate to protect programs and services which may impact our varied constituencies,” says Carol Anne Costa, SACRI Executive Director.

Costa continued, “The fastest growing demographic in RI is people over the age of 65. That is an obstinate fact. And cuts to the budget must be re-prioritized.” The Office of the State Ombudsman agreed, “If anything, OHA should be getting an increase, as they manage to complete all of their obligations on a shoestring budget. And kudos to Maria Cimini and her team at OHA for the outstanding work they do,” says Kathleen Heren, the RI Ombudsman.

Costa noted that OHA is Rhode Island’s designated state unit on aging. It serves as the chief advocate for older Rhode Islanders, adults living with disabilities, and family caregivers. “Prioritizing reductions in spending in areas not directly tied to OHA’s core mission or that would not harm vulnerable older adults and persons with disabilities dependent on Medicaid to meet their long-term care needs is clearly a place to start [in determining budget cuts]. Administrative expenses and the millions of dollars being paid out to consultants could be heavily scrutinized for budget reductions,” she says. 

Adds Mirelle Sayaf, Executive Director of Ocean State Center for Independent Living (OSCIL), “The proposed budget cuts pose a serious threat to the mission of the OSCIL, which is dedicated to supporting individuals with disabilities. Reducing funding, along with changes to Medicaid eligibility and essential programs, will harm those we serve. These cuts jeopardize vital services such as home care, nutritional support, and community engagement initiatives that empower individuals to live independently and maintain their quality of life.”

“Cutting the budget for the OHA when its resources are already extremely stressed to fully meet the needs of a growing older population is unjustified,” charges SACRI’s Maigret, who is also a former Director of the Department of Elderly Affairs.”

Maigret also opposes changes to Medicaid eligibility after advocates have spent years to ensure persons in need of long term supports and services have access to a range of affordable options, and avoidance of long wait lists for service. She calls for increasing resources to the Rhode Island’s cities and towns to help them support local programs for older adults and increasing eligibility for the Medicare Savings Program so lower-income persons on Medicare can afford needed healthcare.  But, Maigret also says that housing needs of older adults must be considered when allocating housing funds.

Food & Shelter important, too

Gerontologist Deb Burton, Executive Director of RI Elder Info also has some thoughts about the state’s proposed budget cuts.

“Cuts to Meals on Wheels that cause our most vulnerable, at-risk, elders to go hungry are simply unconscionable. Taking meals away from our elders cannot happen,” says Burton.

“We must bring back the housing stabilization unit for older adults. Older adult homelessness has increased more than 400% since COVID hit and rents skyrocketed. Rising housing costs, fixed incomes, and wait lists of 2-8 years for affordable elderly housing have all contributed to this crisis. In addition to these challenges, the application process for getting an apartment is onerous and nearly impossible if one does not have access to the internet,” adds Burton.

Eviction prevention is critical in addressing the elder homelessness issue, says Burton, noting that private sector partnerships and philanthropic donations can support a housing stability unit for older adults, ensuring sustainable funding for eviction prevention programs.

“We must find the strength and compassion to provide the funding necessary for food and shelter for our most vulnerable friends and neighbors. If we don’t, what does the future hold for ourselves?” asks Burton.  

A Final Call

“The November Revenue and Caseload Estimating Conferences will provide updated projections to inform budget development which will help set priorities. However, RI’s most vulnerable and fastest growing demographic must be prioritized in finalizing the FY2026 budget,” urges Costa.