The Journey Ends and Begins

In the morning hours of March (date of passing), brothers Butch and Anthony Grimes lost their dearest mother, Gloria Dean Grimes, to the rigors of Alzheimer’s Disease. Both men remember their mom as a highly intelligent, strong-minded, independent and sometimes strict woman who raised them to be strong-willed and hard working, just like her.

When the brothers noticed her changing 11 years ago, neither could imagine the journey they would soon embark upon as a family. Gloria was diagnosed in 2013 at the age of 74. In those 11 years, the brothers would learn much together, as well as share in the frustration, anxiety and persistent sense of loss dementia can bring to a family.

Anthony, or “Tony”, the youngest Grimes brother, recalls the diagnosis began with her losing her tax receipts. He remembers their mom called him, upset, the receipts seemingly gone. He would end up flying from his home in Texas to their mother’s home in Los Angeles, California, to help Gloria look for the receipts, leaving them in a conspicuous place when he departed, where she couldn’t miss them again.

“Two days later Mom would call,” said Tony. ”to tell me the receipts were missing once more.” 

Tony would jump on the next flight back to LA, but this time to take Gloria to the doctor. After a series of tests, the brothers would discover their matriarch was showing signs of early dementia. They were caught completely off guard.

“No one in our family had ever been diagnosed with Alzheimer’s,” said Tony. “We had no idea which way to go, no road map.”

The brothers would piece together their strategy as they went, learning about the difficulties of obtaining referrals to a memory care plan, finding caregivers or taking over their mom’s finances. When Tony and Butch realized they could not safely leave their mother home alone, Butch took on the role of full-time caregiver.

 “I found out quickly how weighty that responsibility was,” said Butch.

Through the process, Butch was inspired to found “Who’sGonnaTakeCareofMe.org”, an LA-based (501-C3) non-profit raising dementia awareness and offering accessible Alzheimer’s programs, services and resources to those in marginalized communities. Eventually he would publish a humble Alzheimer’s newspaper for his community with a print run of 3,000 copies. By the third issue, demand sky-rocketed and “Alzheimer’s Digest” was printing 25,000 copies for widespread distribution.

“We don’t want for others to have to struggle as hard as we did for information or resources,” said Butch.

As the nonprofit inspired by Gloria’s dementia journey took root, she herself, remained always a beacon and an example. Even on her bad days she was a light for others. The Grimes brothers decided early on to share their family’s journey in an honest light, showing tribulations along with triumphs in their mission to educate others on the realities of caregiving a loved one with dementia.

“As we like to say at WhosGonnaTakeCareofMe.org, ‘be informed, not surprised,” said Butch.

As the illness progressed, Gloria would slowly forget who she used to be. Butch and Tony were her shepherds, watching over her as she left them little by little. They would grieve her absence in increments over the last decade of her life, grappling with different phases as the disease progressed.

“One of the first things I mourned when mom got sick was our usual interactions,” said Tony. “All of a sudden she wasn’t able to sit up and interact the way she used to, she could no longer enjoy a joke the same way”.

Swiss-American psychiatrist Elisabeth Kübler-Ross was the first to explain grief in five phases: denial, anger, bargaining, depression, and acceptance. According to Kubler-Ross, not everyone goes through all five and not everyone experiences them linearly, but the psychological basis is present in most circumstances of grief.

 Although everyone grieves in their own way, Kubler-Ross’ template has become widely accepted worldwide. For loved ones of someone living with Alzheimer’s, those stages are often drawn out over the span of several years. Both Butch and Tony would grapple with the varying phases in their own time.

“I remember going straight to denial and then to anger,” said Tony. “I couldn’t believe this was happening to my mom. Only about ten years before she’d had a radical mastectomy and beat breast cancer, only to end up with Alzheimer’s?”

As the stages of Gloria’s Alzheimer’s progressed, each brother would find ways of learning to grieve then accept the progression. Tony remembers when he and Butch moved Gloria from memory care to higher level care, her ability to walk or feed herself gone.

“By the time we got her to higher care it felt like we were in a heavyweight fight with Alzheimer’s” said Tony. “We’d get her to a stable place, where we felt like she was safe, and then it’s like Alzheimer’s would just up the ante, and she’d get worse.”

Through that years-long fight, the brothers would come to understand the importance of self care and finding the correct support for themselves, as well as Gloria.

“Seek out support,” said Tony, “either from friends and family that are on the journey with you, or from a support group. If you don’t you could very well land yourself in the hospital, too.”

In the last few years of Gloria’s life, her personality and memory would wane completely. Her boys would learn to focus on the present moment, making what memories they could with their mom in the time left.

Try to enjoy the small moments,” said Tony, “a smile, a meal or just sitting with them on the patio on a bright sunny day.”

Now, Gloria’s memory lives on in the work both brothers do to raise awareness and help others in their Alzheimer’s journeys. Tony says that although his mom is no longer here with them, he knows in his heart that this is not the end, that he and Butch will see their mom again.

“For us, her passing was a time to remember the good times,” concluded Tony. “Mom loved parties so that is how we will say goodbye, by celebrating her and the time we had with her.”