MJ Grant: CODA, Dementia Caregiver and Advocate for Deaf Individuals
National Deaf History Month is celebrated annually in April to recognize the accomplishments of people who are deaf and hard of hearing. There are individuals in this community who are making incredible contributions to awareness, advocacy and caregiving for deaf individuals. Today’s article honors Mary Jane (aka MJ) Grant, a CODA (child of deaf adults) who advocates for the deaf, especially those with dementia. Deaf or hard of hearing can increase the risk of developing dementia, and resources are limited for the deaf community when it comes to treating Alzheimer’s and other neurodegenerative diseases. MJ is on a mission to bring awareness and resources to people with dementia in the deaf community. As a caregiver to her mother, she knows first-hand the challenges of caring for those who are deaf and is working hard to increase access to resources.
Caregiver to All
MJ was born to deaf parents and has been a member of the deaf community in Maine since childhood. She provides sign-language interpreting services throughout New England. Her mother Carmen worked in a factory in Maine while MJ was growing up. MJ recalls Carmen dealing with isolation as one of the few deaf people in the area. Carmen looked forward to enjoying a life of travel once she retired, but her mother—MJ's grandmother — was diagnosed with Alzheimer’s Disease. Instead of the travel plans she had dreamed of, Carmen spent her days as a caregiver. While caring for her mother, she started developing signs of dementia herself.
As Carmen’s dementia progressed, MJ saw that there were very limited resources available for deaf people who are living with dementia. Carmen was initially in a memory care facility, and she was isolated and lonely because there weren’t any staff members or other residents who knew sign-language to communicate with her. For her social well-being, Carmen needed a dementia caregiver with sign language capabilities, so Carmen moved in with MJ, her husband, and their young children. At the same time, MJ’s mother-in-law also had dementia and had moved in with the family. MJ and her husband were juggling taking care of their children and their 2 mothers. As caregivers, they could hardly leave the house as neither of their mothers could be left alone. What made matters more difficult was that their mothers were unable to communicate with each other as a result of Carmen’s deafness. The entire situation made MJ and her husband the poster children of the “Sandwich Generation”, adults raising a family and caring for parents at the same time.
As a caregiver, MJ grew to understand the deeper role of interpreting. She’s the bridge for her mother during difficult moments when she’s in a confused state. MJ is patient and loving with Carmen as she progresses through memory loss and dementia.
Documenting Their Story
MJ remembers her mother being a patient and loving caregiver for MJ’s grandmother. Although MJ never planned to become a caregiver herself, she inherited that same patience and dedication to giving her mom the best level of care that she could. Her love for her mother is very evident in the way she interacts with her. While caring for Carmen, she started documenting their experience of deafness and dementia, and caught the attention of the deaf community and beyond. She talks about the difficulties that deaf people with dementia have in accessing appropriate care, but also shows the sweet connection between mother and daughter. MJ is capturing the ups and downs of her mother’s journey with this disease, and shares how her mother’s dementia diagnosis has brought them closer together. This silver lining has allowed MJ to see a new side of her mom. MJ’s story shows how just one family member’s battle with a disease affects a whole family.
MJ has observed many powerful moments of joy with her mother, even through this difficult experience. In her viral social media video titled “Dementia Can Be Beautiful”, Carmen discovered that MJ is actually her daughter, and brings many viewers to tears. As she captured more and more of their journey, MJ realized she needed to help others become aware of the unique challenges deaf people with dementia and their families face, and that’s where her idea of a documentary came to life.
Making a Lasting Impact for the Deaf and Aging Population
MJ and her team are racing against the unknown clock of dementia to create a documentary of their journey. “I Remember When” is an inspiring story of MJ and her mother, including the challenges and joys they face with dementia and caregiving. It is MJ’s goal to raise global awareness of the challenges faced by people with similar stories. She wants them to know they are not alone, and she is driven to create change in a system that doesn’t readily support the needs of the deaf and aging population. MJ hopes sharing her story will educate people about the deaf community and life as a caregiver to a parent with dementia.
To learn more, check out the website for MJ’s documentary “I Remember When” and consider donating to https://rememberwhendoc.squarespace.com. You can also follow MJ and Carmen’s journey on Instagram @mjgrant_.