Family Legacy of Dementia Caregiving with MJ Grant

Family Legacy of Dementia Caregiving with MJ Grant

Episode #62

The stories of people living with dementia and their families need to be told, heard, and valued.

I’m honored to share the life of, MJ Grant, as she describes the legacy of caregiving in her family, her transition to becoming a caregiver, and the isolation many Deaf people living with dementia experience.

 

Here’s what you’ll discover in this beautiful interview: 
  • [06:26] MJ talks about the viral “Dementia Can Be Beautiful” video that has had more than 2.5 million views.
  • [14:22] How MJ’s mom’s dreams of travel and enjoyment in retirement were thwarted by caregiving for her mom (MJ’s grandmother) who had Alzheimer’s.
  • [18:23] Through the eyes of herself as a little girl, growing up, MJ experienced her mom as being dedicated to her and her sister and as a “survivor” working in a factory with not many people to talk with as a deaf person.
  • [23:03] Becoming a caregiver seems to come so naturally to MJ, but she describes her experience coming to terms with it, “I never thought I would be taking care of my parents, ever, you know, so, so there was a little bit of struggle there for me”
  • [26:44] MJ talks about the bind of being in the sandwich, between caring for children and for her mom and mother-in-law with dementia.
  • [31:06] MJ shares how she talks with her 5 year old about dementia.
  • [34:47] Being a CODA (a Child of Deaf Adults) is an important piece of MJ’s identity. She shares what this experience was like for her and what life was like for her mom as well.

 

 

About Mary Jane “MJ” Grant

MJ Grant is a CODA, that’s a “Child of Deaf Adults”. MJ was born to Deaf parents and has been a member of the Maine Deaf community since childhood. She currently provides sign language interpreting services to Deaf communities in New England. She’s married, caring for aging parents, and parenting four children ranging in age from 6 to 25.

 

Watch the video that went viral of MJ talking with her mom below. You’ll want to grab a box of Kleenex.

MJ Grant 0:00

My mother spent years of her life pretty isolated when she moved to Maine from Rhode Island and raised her family working in a factory that she did not belong in. She My Mother, she, my mother is a ray of light. And that light is something I that that light was quite dim for many years, because of depression because of isolation because of anxiety. And so to see the shedding of the veil, and the light coming out and shining, for me was incredibly powerful and seeing my mom have joy. She retired from working in a factory for 2530 years, to go take care of her own mother, who had Alzheimer's. So she moved to Rhode Island and she lived with her mom, and she took care of her mommy, she couldn't travel. She couldn't do the things that she had set out to do. You know, before retiring, she couldn't do that. She had to take care of her mom. And while she was caring for her mom, she started developing symptoms of dementia. So I had spent many years as a child, just wanting her to have a sense of peace, and not have to struggle. And then for her, I thought when she retires, she'll be happy. Then she had to retire to go take care of her own mom, and she was isolated still. So and then to develop symptoms while you're caring for your own mom. And then your mom has to go into a nursing home because you can't care for her anymore because you have to mention.

Dr. Regina Koepp 1:42

I'm Dr. Regina Koepp. I'm a clinical geropsychologist, which means that I'm a psychologist who specializes with older adults and families. And this is the psychology of aging podcast, your go to resource for Mental Health and Aging.

Dr. Regina Koepp 2:01

If you've been following me for a while, well, actually, if you've been following me since even before I had my podcast, I had a little video show called the caring for aging parents show. And one of my first interviews was with m. j. Grant or Mary Jane grant. You may know MJ from a video that she posted that went viral. It's a video of her speaking with her mom, Carmen and her car. Her mom Carmen is deaf and MJ is using sign language and communicating with her mom. Her mom who has dementia doesn't recognize her and there's this beautiful exchange of MJ being with her mom being present with her mom, and kind of explaining gently, or just answering her mom's questions about that, in fact, MJ is her daughter, and it's the most touching lovely video you will ever see. I will link to that video in my show notes. But after that video came out a couple of years ago, I reached out to MJ and asked if I could interview her to share her story. And she said yes. And so I interviewed her for that video show that caring for aging parents show. I don't do the caring for aging parents show anymore because now I do the podcast and write a lot of blogs and create guides and all sorts of things. But today I want to share that interview with you where MJ talks about what it's like to care for her mom with dementia who's deaf. At the time that we interviewed she she was also caring for her mother in law, who has dementia and was also living with her and just the complexities of having both her mom and her mother in law in her home. At the time of this podcast release, I believe that her mother in law no longer lives in her home and has since moved to I think long term care memory care. And MJ his mom Carmen is still living with her.

Dr. Regina Koepp 4:15

One of the reasons I am sharing this interview on the podcast today is that MJ is raising money so that she can make a documentary about her life and experiences of caring for her mom who's deaf with dementia. And one of the reasons I think this video and this documentary is so incredibly important is that caregivers often say and people living with dementia often say and the Deaf communities often say that they are left out of many conversations that they are kind of discarded from society and pushed aside And the more we can share caregivers stories, family stories, stories of people living with dementia, stories of relationships, the better. I think when one person in the family has an illness like dementia domitian dementia is an illness. The whole family experiences that illness. And so I love the idea of a documentary because it shares the full family experience. So in MJ is home, our her mom, herself and her husband, her children, MJ has four children. I don't think all of her four kids are living at home. But her kids range from young adult to I think six or seven, if you would like to contribute to Mjs documentary, I will link to her sponsorship page on the show notes. And you can contribute as little as $25. And so if that works for you, and if if you can do that, maybe consider it so that we can all be a part of sharing stories of families of caregivers of people living with dementia of children living with grandparents with dementia, these are stories that need to be told and heard and seen and valued. Alright, let's jump into my interview with MJ grant.

Dr. Regina Koepp 6:26

We connected because I saw your incredible dementia can be beautiful video, which you had on YouTube. And then I saw somehow on Facebook, and I like grabbed it and said, Oh, this has to be shared with the world. It's seven, I posted it. And then I've been using it when I teach different groups that are caring for folks with dementia, and there's not a dry eye in the house when I share the video. And so, um, I was wondering if you could talk a little bit about how you made that video and the significance of that video to you and your mom. I?

MJ Grant 7:09

Well, I guess I mean, when I initially created the video, prior to that, I was already starting to post a few things here and there on my Facebook account to share about my mom and the experience of her being in a memory care facility because she is deaf, she has dementia. And at one point, we did have to move her into a memory care assisted living facility and she was experiencing isolation, even though there were a lot of you know, staff there. And there were a lot of residents, she was lonely. And because nobody signed, she didn't have a lot of visitors who are deaf coming to visit her. So she didn't have a ton of interaction with her peers. And I just started to feel every time I went to visit her, she would say, you know everybody's talking. And I don't know. And I'm, you know, just sort of left out and it broke my heart. So I started posting videos to not only create awareness, the goal was to you know, can somebody visit her? Can somebody who used a sign language visit my mom. And so, months after that, we basically ran out of money, because it's expensive. And if you don't have a lot of money, you can't really afford to, you know, have somebody in a place like that, you know, if you want really good quality services. And so when we ran out of money, we had to move her back into my house, she had been living with me prior to going back into my home. And so she was re acclimating to living with us. And at this point. So when the video came out, it was in January, she had moved in at the end of December, it was after Christmas. And she hadn't. She hadn't at that point, forgotten who I was that I can recall. I don't remember her, you know, looking at me not being sure of who I was. But I remember that day specifically, when we were driving, I was bringing my daughter to pick up her car that she was purchasing. And I decided my mother loves the beach. And I you know, I have this sort of drive to just expose her to everything she loved so much, you know, that she really didn't get to experience because of other things I can share with you later. So I really wanted to bring her to the beach and she could, you know, feel that that sort of healing energy that you get at the beach. And while we were driving there, she started talking about me as if I wasn't there. She was saying my daughter MJ and Luann. And so I parked the car and I and I had had the camera running because I started documenting quite a bit at that point already. And I was finding a lot of I don't know there was a lot of healing coming from just documenting and and taking pictures and And documenting a story for myself and sharing some of it. So I was already running the camera and, and I decided to ask her, you know, where MJ where MJ was to see what she would say, I figured she might say she's right, your MJ, but she didn't. And so at that point, you know, that sort of started that whole conversation that you would see in the video. And it was just such It was such a sweet moment, because when she discovered that I am mpj. And, and, I mean, what she does all the time now is not uncommon. Oh, I'm so surprised, you know, everything is just such a surprise, but that he just reached out and helped me. Like, ah, my baby, you know, so special. And I never imagined it would get the attention received? Never. When I posted it, I thought okay, my my friends on Facebook are going to see my sweet Mom, you know, and in this sweet moment, but it went like it should credible? Because it's good. I mean, I understand it. At first, I didn't really understand why I thought okay. Is it because of, you know, the fact that she's deaf? Is it because we're using sign language? Is it because what is it? And then about a month ago, I looked at it again. And it's been now I mean, it's been several months now. And I think I realized why, you know, it's like, oh, there's something really incredibly special about this moment that the world saw. And I experienced it to be a little bit different than what the world experienced. And, but in that moment, about a month ago, when I saw that I'm like, Okay, I get it, I get it now. Yeah,

Dr. Regina Koepp 11:55

What what stood out to you as the special...

MJ Grant 12:01

The the level of presence, the level of presence, and, and how I demonstrated, and it's hard to talk about it, because it's sort of like, you know, it saying something positive about myself, right, which is great. As a culture as a society we don't often do, like, MJ you demonstrated, being present with your mother. And, and, and patient and kind and curious. And regardless of what path, you know, going on, and, and having a little distance from the video and seeing it again, was like, Okay, I get this, I get it now. So before, though the takeaway from me was, wow, I mean, just experiencing those those sweet moments in life and just cherishing them. And, you know, that's really special. And there's this whole other element of presence, incredibly powerful in that video.

Dr. Regina Koepp 13:04

One of the things that really stood out to me, along with the presence is you had so much grace and your mom did, too. I think the presence that you're talking about is that you were present with her and that she was matching that. And just the connection, even in the midst of not knowing was so beautiful. And the other thing that strikes me is that because I work a lot with people who are caring for folks with dementia is that they call dementia, the long goodbye. And so when there are moments like this, where the person with dementia doesn't remember you, it's it can be so painful. And it can be a layer of the grief process that gets like torn. You know, it's just so raw and painful. And a lot of people talk with me about the grief when they're when their loved one doesn't recognize them, and how just, it's kind of like torture and that your experience with it. You were giving another view of what that could be like, and I wonder for you if you had that moment of pain and loss or because you seem so in the moment.

MJ Grant 14:22

Yeah. Yeah, that's, you know, in that moment, what I experienced was joy. And, and because my mother was so I don't know, I didn't experience a sense of, of grief in that moment or a sense of loss. And I know a lot of people see that and how did she do it? How did she sit there? How did she not cry? No. Because my mother was happy. I don't know. I think it's just that I've always wanted my mother to experience joy. And one of the things that a lot of people don't realize is that Cuz I don't think I've really talked publicly about it is that my mother spent years of her life pretty isolated when she moved to Maine from Rhode Island and raise your family working in a factory that she did not belong in. She My Mother, she, my mother is a ray of light. And that light is something I that that light was quite dim for many years, because of depression, because of isolation because of anxiety. And so to see the shedding of the veil, and the light coming out and shining, for me, was incredibly powerful. And seeing my mom had joy. She retired from working in a factory for 25-30 years, to go take care of her own mother, who had Alzheimer's. So she moved to Rhode Island, and she lived with her mom, and she took care of her mommy, she couldn't travel, she couldn't do the things that she had set out to do. You know, before retiring, she couldn't do that. She had to take care of her mom. And while she was caring for her mom, she started developing symptoms of dementia. So I had spent many years as a child, just wanting her to have a sense of peace, and not have to struggle. And then for her, I thought when she retires, she'll be happy when she had to retire to go take care of her own mom, and she was isolated still. So and then to develop symptoms while you're caring for your own mom, and then your mom has to go into a nursing home because you can't care for her anymore. Because you have to mention

Dr. Regina Koepp 16:45

The tragedy. Yeah, the pattern and the tragedy. Yeah. How old was your mom when she started to develop symptoms?

MJ Grant 16:56

I found an email from my sister back in 2009. And it said, Don't forget to ask the doctor about her memory, I'm concerned about our memory. And so I think she must have been It must have been 2008, nine, you know, that time frame. And then we got her assessed. And, you know, she definitely had vascular dementia at that point. And five, six years ago, five years ago, six, about six years ago, we had to move her back home to me. And so she really didn't get to experience her her life the way she had envisioned. Because she would always say, when I retire, I'll do this. And someday she's going to be happy. And yeah, she didn't, she didn't get that. But now, he's so joyful. And it's like, you know, it doesn't always have to match what you thought it was supposed to look like, in it, you know, Joy can come from other places, you know, it doesn't have to be from traveling, it can be from even just that moment of presence. And so there are a lot of moments of presence that I share with her. And I see joy. And, you know, kind of through the lens of a little girl who just wanted her mom to be really happy. You know?

Dr. Regina Koepp 18:20

What was your mom like, when you were a little girl?

MJ Grant 18:23

My mom was, she was she was a good mom. She was very dedicated to being with my sister and I, she also was a survivor. You know, having worked in the factory, she was not happy there was you know, she was they were my dad worked there too. So they had each other and maybe one other deaf person, but nobody really signed. So she felt isolated. So she would come home I I would sense depression. Oh, and I would sense feeling anxious about things. I don't think she ever felt embraced by the deaf community here in Maine because she didn't grow up here. She grew up in Rhode Island. So I saw a mom who loved to make bunny cakes during Easter, who loved to make chocolate chip cookies and with what my sister and I look, you know, better. And she was a mom who wanted everything to be fair for us. She was a mom who genuinely really, truly loved us. She had patience to the point of maybe being too passive, you know, and so she had these two kids who were sort of running amok and taking control of everything. And she was just trying to manage that. And she's kind and very, just very loving and her big thing was, you know, this, okay, even though I know, there was a storm going on inside of her, you know, and she would just try to bring it down with "it's Okay"

Dr. Regina Koepp 20:03

So soothing.

MJ Grant 20:05

She was, yeah, she wasn't the mom, who would go to your soccer games. She wasn't the mom who would go to your school play, even though she actually no, she did. And I think the reason why she didn't go to a lot of events is because they were not interpreters. So she was often just sitting, you know, so she would sometimes forget to pick us up at school. I mean, I think she was going through her own struggles with depression, she would forget, you know, and we come home, and we'd be knocking on the door, and it would be locked, because, you know, she couldn't be unlocked for us or things like that. And I look back and think that was in part because of her own sense of being overwhelmed. And she was incredibly kind, you know, there was not a bad, she didn't have anything. She's just, she doesn't have a spiteful bone in her body, she doesn't have a hurtful bone in her body, she just wants goodness, that's what she wants. You know?

Dr. Regina Koepp 21:06

Wow. So, you know, the so many things are running through my mind about what I want to ask you. Because you have so many of the similar qualities you have, you know, you've witnessed your grandmother, and now your mom. And now you're caring for your mom and your mom cared for her mom. And there's this generational pattern in your family, and you're in line. And there's that, and then there's a similarity there. And then there's this similarity in your kindness, and in your presence. And it's just remarkable to me reflecting on that all of these. While you get the generational pattern of caregiving, you also get the generational pattern of kindness and peace and love,

MJ Grant 21:58

I feel that that's what I witnessed with her taking care of her mother. She was kind, patient, gentle. That's what she is. She's gentle. And I saw that for many, many years. And, and somehow internalized a lot of that, thank goodness. I don't think any of us set out, you know, thinking, Okay, I'm going to take care of my parents someday. We don't think that I thought I've been a mother since I was 19 years old, going on 20. Okay, when my kids are older, I, you know, I'm gonna live my life and do all of these things. I never thought I would be taking care of my parents ever, you know, so so there was a little bit of struggle there for me. And then when I started to really remember what how she treated her own Mom, I watched my aunts, you know, care for their mother as well. And it's like, okay, you can either resistance or you can embrace this, which one is going to make you feel better here.

Dr. Regina Koepp 23:03

So how many years now? Have you been a caregiver, she,

MJ Grant 23:06

We moved her back here, I started going to Rhode Island to help her out with her appointments around 2009 ish. And then we moved her back here. The same year, I had my my daughter who's now five, so in about 2014. So it's been about five years since I've been really, you know, having to monitor and having to make sure that bills were paid. And, you know, my sister and I really had a hands on kind of approach with her. She did live by herself for about a year in an apartment, when we first moved her back to me, but a lot of we had hired a woman who's deaf to come help out, and things like that. So it's been a, you know, five or six years.

Dr. Regina Koepp 23:48

From independent living, to assisted living to living with you. Yes, indeed,

MJ Grant 23:56

To meeting a man who she knew for many years, and so she developed this this really nice friendship relationship kind of, you know, dynamic. Yeah. moved in with him. And I think he started to realize, okay, hurt Yes, she's really progressing. And I realized that too, and I said, this is this, we need to take over. And that's when we moved her into my house Initially, the end she lived with us for about a year or so before she moved into the memory care, assisted living facility. And then back with us again.

Dr. Regina Koepp 24:33

How long has she lived with you this time? since we moved her in December 28.

MJ Grant 24:38

So, I mean, we're going out a year soon in December

Dr. Regina Koepp 24:42

Is she's still in contact with her friend, the man that she lived with.

MJ Grant 24:46

She doesn't remember at all when she sees him. She looks at him and I think sometimes she she knows she knows him. Or but for the most part, she's totally forgot that dynamic. She has I remember living with him, none of it. And to be honest, I'm glad, because I think it was really hard for her. For us to move her out of there. That was a really hard decision. Because I felt like I was ripping her away from something where she felt love. loved and cared for. And I was pulling her away from that.

Dr. Regina Koepp 25:20

Oh, and an independent life. Yeah, with connection and yeah. intimacy. Right. So, now you It's been almost a year that she's lived with you. And so how did you and your husband make that decision?

MJ Grant 25:43

Well, we, at this point in our life, it's just we have to do what we have to do. You know, we've we've done it, we did it once before. And we knew that it was necessary. And then, you know, something happened where we had to, we had to take his mom into, and it's sort of like, just do what you got to do. And you try to make the best of it, you know, do the best you can. Because what we're both, neither one of us are going to resist reality. We don't want to suffer. We don't want to be you know, angry. We don't want to feel, you know, we want to live a good life a happy life. So you just do what you have to do. That's sort of the motto in our house.

Dr. Regina Koepp 26:30

Yeah, well, that is incredible, because it's hard to transition from having, you know, living a pretty carefree life to living a life of a caregiver is really tough.

MJ Grant 26:44

It really tough because now, I mean, he can't, we can't really go anywhere together unless we arrange for people to come to the house. And then we have to arrange because his mother is living with us too. And she has dementia. She's not deaf, my mother's deaf and needs access to communication, right? So if we hire a woman, you know, or somebody who's deaf to come into the home, then we're dealing with How is his his mother going to communicate this person? So we have to think about all of those things. So most often, it's just me going somewhere coming home, and then he can go somewhere, come home, and maybe we'll have a date night. How do we go? You know, it's really happen.

Dr. Regina Koepp 27:26

God, yeah, cuz and then not only that, arranging, companions or caregivers for your parent for your moms. It's also for your kids, because you have a five year old.

MJ Grant 27:36

We have a five year old. And thank goodness for my dear friend, Sarah Jane. She is a godson, and she has basically helped to raise our daughter. And so she's been like, the person who watched my daughter when I would go to work. So she's the person we would ask, you know, because she has a daughter and my, my daughter's good friends with her daughter. They're like, we don't have to worry about that part. She's, she's always there. Yeah.

Dr. Regina Koepp 27:59

So you have a village?

MJ Grant 28:01

Yes, yes. Absolutely.

Dr. Regina Koepp 28:04

But you're really in the sandwich. I mean, you're mashed, right in between aging parents and kids.

MJ Grant 28:13

And I think to myself, what's going to happen? I try not to project too much in the future. But what's going to happen when this is all done? Yeah. Yeah.

Dr. Regina Koepp 28:23

What do you mean by this is all done?

MJ Grant 28:26

When I'm no longer caring for parents? I mean, as it is, you know, we were helping to care for my dad, by going to his home, he developed an illness. And this was all happening at the same time. And then once he passed, it was like, Whoa, space. What do you do with that space? I mean, of course, there's lots of things that things that can drop into that space. But it was such a Whoa. incredible feeling to to not have that anymore. And this has been such a huge part of my life now. But you know, I wonder what it would be like, I mean, I don't know if I would experience that, that sort of crash, and depression, or if I would just bounce right back and say, this is this is life, and we keep going. Now, especially since that video, my mom, you know, she's been highlighted so much, you know, that I feel like in some ways, it's like, she will leave behind a beautiful legacy, you know, and it will be really tough, because it's been such a huge part of our lives. Right. Now. I do wonder what that's like for what that's like for other people and what that will be like for us as a family?

Dr. Regina Koepp 29:40

I'm sure it will be all of it. I'm sure there will be days that are crash and burn and other days that are the memory of her is joyful. I'm sure it will be all of it.

MJ Grant 29:53

That joyfulness that she brings into our home. Every, every moment are there moments where she's not easy. The moments when she goes into the bathroom, and we need to use the bathroom. Oh, no, she's in the bathroom, the light on the outside, and the light is broken on the ceiling. And we've yet to replace that light bulb. So we have a light inside the bathroom. So the easy thing would be to fix the light bulb, but instead we don't fix that and we go just go in the bathroom. Shower upstairs is not working. And we're all like, it's become a running joke in our house

Dr. Regina Koepp 30:51

So you hurry up in shower after she goes to bed.

MJ Grant 30:54

Wash I get up, I get up at the crack of dawn. And I'm like in that shower. You know, we're all in the bathroom before she gets up. I mean, the moments like that sort of funny, but no, she does not. She's at a really interesting stage in this, you know, with her dementia, and she's just happy all the time.

Dr. Regina Koepp 31:16

So now, how did you how do you talk with your kids about dementia? So you brought her to live with you when your daughter was four?

MJ Grant 31:26

Yes, four. Right. And she had already lived with us Previous to that when my daughter was. But now that my daughter's four, I mean, I had taken her to go visit, you know. And so she knew that mommy had dimension, she knew that she forgot a lot. But we finally reached a point, we had to look at her. And it just came to me one day, and I don't know how. But I said to her because she was getting frustrated with my mother repeating the same question. You know, where's mama? Where's mama? How old are you? What's your name? Where are you? You know? And she would just look at my mother. You know? Now she just looks at her like, you know, and she's really frustrated. But I said to her Alanna, she's like Dory, from Finding Nemo. And you made the connection. I know now that I apparently that movie was purposefully You know, I think it was purposely created to create more awareness about dementia and Alzheimer's maybe I mean, like by casting dority is that the character who always forgot. But in the I didn't realize that, you know, I've seen the movie, but I didn't realize, you know, that might have been some of the intent. And maybe it wasn't, maybe I just made that whole thing up. I like it. Oh, my it, though. In that moment, I said to my daughter, she's like Dory, and then we just so when in moments, she would get frustrated with my mother, I would say Dory, you know, she's like Dory, she can't help it. She can't, it doesn't love it, level of frustration. But she started to understand it better. You know, and it's hard for her. I think it's endearing. And in moments. And in other moments, it's hard and she just wants mommy to herself. She'll say she's recently started saying you like mommy better, or model, certain different a certain level of attention that like, she requires eye contact, she requires me to be in the same space with her when we're having a conversation. She's lost her vision and her right eye. So so she requires a certain, you know, kind of positioning. So I have to be really focused when we're communicating. And when my daughter saying Mom, Mom, Mom, mom, and I'm trying to engage in a conversation and give my mom that moment of presence. And I have to put break, you know, eye contact, hold on a second. And look at my daughter who's going Mom, Mom, mom, she's sensing that, you know, struggle, me being in the middle, and she just wants to pull me away from it and have her mommy to herself.

Dr. Regina Koepp 34:01

And then you're constantly in the middle.

MJ Grant 34:03

I'm constantly in the middle. And I think well, I'm the adult, I can handle this. I'm the adult. She's the child trying to figure out I can't I just have my mom to myself. So I have to be really conscious and aware of taking time with my daughter without anybody around anybody. And that's hard.

Dr. Regina Koepp 34:21

Oh, yeah. You know, and this what you just shared the moment you said, Well, I'm the adult, I have to find a way to be steady in this reminded me of you describing your mom having this inner turmoil and still being soothing and disappointed. But I think and this is probably me reading way too much into it, but it's just

MJ Grant 34:47

I don't think you're reading into it. I think that's exactly what it is. Yeah, I mean, in in those moments, it's just like, you just got to pony up MJ and you're just gonna have to be the adult here because parts of me I'm still that little girl. CODA (Child of Deaf Adults) in those moments, there are moments that I'm that little girl coda that little child of deaf adults is screaming, why can't the world embrace sign language? Why can't every buddy just sign your Why am I here to even bridge communication between my kids and my mom? Why? it you know, and so I, me screaming for the injustice screaming for you know, you know, the, the the frame in which you know, the world generally views, you know, people who are deaf, and just screaming for everyone to just embrace each other and embrace communication and, and be accessible, you know, those are the things that come up for me in those moments. Because I'm truly have always been in the middle, you know, always kind of trying to be the bridge, you know, and even in my own family in my own home with my own children, because they don't really sign. And for number of reasons, for a number of reasons, because my mom was brought up during an era, you know, it was like, people who weren't deaf, you know, sort of had all the power in decision making about, you know, what kind of communication, you know, or language you would decide to to expose your child to who was deaf? So, should we use sign language? Or should we speak? Should we, you know, so that the by and large, the majority community would say, you want to teach your kids to be like us, right? So my mother grew up feeling subservience of just inferior to, you know, folks who are not deaf. And so, as a result, I have my hearing children, she would speak to them. And I would say, you don't have to speak to them, you can sign and expose them. And she would say, no, they're hearing, I have to talk. To me. It's incredible. Yeah. And in denying her, it's denying her to have a relationship that she could be developing with her grandchildren. It's denying my children that experience of being able to communicate freely with their grandmother and getting to know her and my father on a very deep level. And it's just such a reflection of such a broken system. And it makes me really sad. And so all that stuff comes up for me.

Dr. Regina Koepp 37:33

Oh, yeah. Well, it's not only broken, it's oppressive, and it denies humanity to be fully engaged.

MJ Grant 37:41

Thank you. Thank you, why are we not just embracing everybody as they are? And you know, however, they communicate, let's, let's, let's all be part of it. We're all in this together. And when I say that, we are literally in this together, why are we dividing? Why are we separating ourselves from other individuals? Why, you know, why not embrace it? And so, yeah, it's... I'm dealing, I deal with a lot of that kind of stuff.

Dr. Regina Koepp 38:10

So you're bridging between your mom and your children, and you're also bridging between your mom and society? Because you've been interpreting for your mom and your parents for your majority of your life. Is that right?

MJ Grant 38:23

Well, I spent a lot of years as their interpreter. Yeah. Now it's different. Because I tried to really make sure that their interpreters that their appointments, but I still aid in communication, you know, making sure that there's understanding and all of that, but yeah, I've been bridging my entire life, my entire

Dr. Regina Koepp 38:42

Well, now you're bridging more more than between hearing and deaf people. You're bridging life experience and from life to death, and from illness to wellness. I mean, just that you're caring for two mothers who have dementia and are working on your own wellness. I mean, you're bridging so many worlds. It's just such an important thing to share. So I really hope people follow you and find you and we'll make it easy for them by linking in the in the show notes. Yeah. Well, thank you. Thank you, thank you, thank you. I just is such a gift for me to and such an honor for me and my listeners to get to meet you on a really personal and intimate level. I mean, your just your willingness to share some of the deepest experiences in life is just a beautiful thing. So thank you so much.

MJ Grant 39:36

You this has been truly an honor. And I really appreciate the opportunity to share my story.

Dr. Regina Koepp 39:45

MJ's willingness to share about the legacy of caregiving and her family about her transition to becoming a caregiver, about how she communicates with her children about dementia. About caregiving by demonstration, you know just by showing and then also, through talking is so beautiful. People living with dementia families living with dementia, caregivers stories of caregiving, the caregivers experience, these stories need to be told, need to be seen need to be valued. Mj is raising money to film a documentary about her life as a caregiver and her mom's life living with dementia and her family's life including her children living in a home where they're caring for em Jays mom, Carmen with dementia. If you would like to contribute to MJ his documentary, I'll link to her sponsorship page on the show notes you can contribute for as little as $25.

Dr. Regina Koepp 40:58

And if you have not yet seen the new my new www.mentalhealthandaging.com website, I really encourage you to check it out. There are tons of great resources and information there for you. I have a great new guide called the memory loss and mental health guide. In that guide, I share signs and symptoms of dementia, I share signs and symptoms of depression and mental health concerns and what to do if you're concerned about your older loved one. If you're noticing signs of memory loss or mental health concerns, download that free guide as well. I'll link to that in the show notes too.

Dr. Regina Koepp 41:36

If you haven't yet subscribed to this podcast, please please please subscribe. It really helps other people to find this show. I really want people to feel less alone in their caregiving journey. I want older adults to feel less alone in their mental health journey and their dementia journey if they have that. So please subscribe and leave a review. It really does help. All right, I'll see you next week. Same time, same place. Bye for now.