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

By Herb Weiss, contributing writer, aging issues

Photos: Provided by C. Mellor

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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To read more articles by Herb Weiss, go to: https://rinewstoday.com/herb-weiss/

Herb Weiss, LRI -12, is a Pawtucket-based writer who has covered aging, health care and medical issues for over 45 years. To purchase his books, Taking Charge: Collected Stories on Aging Boldly and two sequels, compiling weekly published articles, go to herbweiss.com.