MJ Grant Wants Long-Term Care to Be Better for Deaf Adults Like Mom

​Any examples come to mind?

Like encountering anybody from a different culture who uses a different language, sometimes you’re making assumptions about what you think they understand and don’t understand. It’s tenfold now because of her dementia. At a certain time of day, she would start to get [anxious]. [She thinks] she’s supposed to be going home. She’s not expressing it explicitly in that way, but I know that’s what she means because of all the conversations she had while she was living here. When she makes these certain expressions in the home she’s in now, they have no idea that she actually means she’s waiting for her mother to pick her up. 

It’s hard to articulate how these everyday subtleties can lead to such misunderstanding. It affects her care, right? Because she’s scared.

It’s not like I’m holding staff accountable in a way that insinuates I’m blaming them for not knowing sign language. I’m frustrated that I can’t find a place close by where my mother can be cared for by people who are deaf, where she has deaf peers.

What misconceptions has your mom faced while receiving care?

The assumption that she can understand a person when they have a mask on [to prevent Covid-19’s spread], and they’re talking to her without using any gestures. Clear masks are so important when you’re communicating with a deaf person, because there are some grammatical features of American Sign Language that are on the mouth. 

[There’s] an assumption that my mother doesn’t need the level of interaction that she actually needs. An assumption that because she’s getting cared for in this home, she’s safe and that’s good. Actually, interaction is one of the most important things about being a human being.

​What services would you like to see available?

​​​The goal would be to keep a person in their home or in a home with a family. Caregivers need more support by somebody who can communicate with the person they’re supporting. ​

The other part is I would really like to see every state have an option of direct services. I have to really be careful how I frame this because accessible care is incredibly important. And in the context of accessible care for my deaf mother, it would mean a sign language interpreter. That’s not the same as direct care from a deaf person who knows sign language, and who has grown up navigating the world as a deaf person, and is part of the deaf culture and deaf community. Every state needs to work toward having the option of direct care programs with deaf staff, staff who are fluent in sign language and understand the culture, and also are trained in dementia work.

My mom’s home — what would it be like if there was one wing set up for deaf residents? What would that be like if that one wing had deaf staff, signing staff, right down to the CNAs [certified nursing assistants], the nurses and the doctor who comes in to check on the residents once a week? I would love to see that happen.

You have two Instagram videos showing how your mom sometimes doesn’t recognize herself or forgets that you have four kids. You have a positive outlook. How did you come to that?

I’m a person who loves connection. When I’m looking in the mirror with my mother, there’s multi layers to this because she’s connecting with somebody that she doesn’t necessarily know is her. All of a sudden, she realizes it’s her and she’s connecting with herself. That’s beautiful in so many ways. Then she sometimes goes into thinking the person in the mirror is a friend. It shows me my mother’s true nature of connecting that I didn’t always see growing up.​

I’m never tired of telling her I have four kids. Every time, she’s like, “Four children!” There’s just so much [awe] that she expresses upon discovering the things that she thinks she’s learning for the first time.

Talk about the documentary you’re working on.

It’s essentially the story of a mother and daughter’s journey through life, and navigating this journey with care for my mother. The goal is to create awareness and use it as an educational tool. And, hopefully, use it for some lobbying efforts to create new laws and better support for caregivers, for better services in care homes.

​What have you learned from caregiving?

That you can’t do this alone. Recognizing the entanglement that occurs when you’re caregiving and how to create a healthy separation so that you can exist in a healthy way is important.

​This interview has been edited for length and clarity.