Talking Deafness and Dementia: A CODA’s story

Colm Cunningham: 0:12

Hello to you and welcome to The Dementia Podcast. Today we're talking deafness and dementia, and specifically people who are born deaf and how when dementia occurs it can impact on their needs, it's very important to recognize that hearing impairment that can happen with age can often get mixed up, with people appearing more confused. And therefore, people thinking that dementia, for example, has progressed. Or, for example, thinking with dementia's occuring when there may well be an information issue. So we will, in future episodes talk about the importance of ensuring that the person hearing is being tested and their hearing aids are working and all of those other things that can impact on somebody. But today, we're talking about the Deaf community. And to do that, I wanted to refer to the trigger for all of that, which is a number of years ago, myself and the team at The Dementia Centre. Watched a YouTube video with our guest MJ Grant. She was communicating with her mother Carmen. And there's a point that she captured on video, where she realized that her mother did not realize that she was her daughter. Now that interaction is between a mother and daughter. But I also have referred to it as a very strong example of good communication with somebody who has dementia, because MJ helps her mother find their connection again, at a pace that allows her mother not to be distressed and remain in control of the conversation. And it has a very powerful end to it that it touched many hearts across the world. But this led to a friendship and partnership with MJ and HammondCare's Dementia Centre. And there's a number of great resources that have come out of that, which as usual, we will link at the end of the podca st. MJ runs her own interpreter service in Maine, USA. And she also cares for her mum, and as you'll hear has many other responsibilities in her life. But one of them is to become a really strong advocate when dementia becomes part of the deaf community. So joining me from Maine USA, welcome MJ grant. It's great to have you on the dementia podcast.

MJ Grant: 2:25

Oh, hello, Colm. It's so great to be here. Thanks for having me.

Colm Cunningham: 2:29

MJ, I wanted to start firstly by understanding better the deaf community and some of the issues that are faced so firstly, one of the things I was learning was that of course, a Wikipedia tells me there's over 300 languages spoken here in Australia, it's called AUSLAN. Where you are assuming it's American Sign Language, is that the right language?

MJ Grant: 2:51

That's correct, yes. And a lot of countries have their own sign language. So I don't know how many sign languages there are. But definitely in the United States American Sign Language is is the primary language used by the deaf community.

Colm Cunningham: 3:06

MJ I'velooked at what is the definition of somebody being part of the deaf community. But what defines the deaf community for you?

MJ Grant: 3:14

Well, really, when I'm talking, I guess I'll speak from my perspective, as somebody who grew up in a deaf family. When I'm referring to the deaf community, I'm referring to those who by and large socialize within the community of other folks who are deaf use sign language to communicate may or may not have gone to a residential deaf school and you know, their primary language is sign language. So it isn't necessarily about the decibel loss, if you will, it's more of a cultural experience where they share values and traditions and language. So really, for me, when I say deaf, those who are in the deaf community, I'm thinking about those who are considered to be culturally Deaf, like my parents.

Colm Cunningham: 3:56

And another term that in my time with you I've learned and actually, hopefully through Apple, others will have is a term called CODA. What does that mean?

MJ Grant: 4:07

That means child or children of deaf adults, which I am a CODA, because both of my well it doesn't matter if you have one or two parents who are deaf. If you have one parent who is deaf, you are considered to be a CODA. So that is, that's how I was raised. I was raised as a CODA. I didn't know the term until I actually became an interpreter. So I was in my early 20s. When I discovered that term.

Colm Cunningham: 4:28

What are the differences being a child of somebody who's deaf?

MJ Grant: 4:32

Well, I mean, you know, this is always an interesting question, because I don't know the difference. Right? I can only speak to my experience, but what I know is that I would go to friends houses and they didn't have lights flashing when their phones were ringing and they didn't have lights flashing when somebody came to their door and rang the doorbell and they didn't have a TTY, which is what we had back in the day. Now they have video phones, but now they're video phones for deaf people. But you know, we had TTY teletext typewriters so my parents could make a call, and you know, with big rolls of paper, so none of my friends had that. And, and they could easily call their parents, you know any from anywhere and have a conversation and I had to either use relay or figure out a way to get a neighbor to run to the house and tell my parents what I needed. Or you actually try to communicate with my dad on on the phone, he had a little bit of hearing. So I, you know, I think that culturally too, there were a lot of differences. And there were things that I would say and do that were just different from that of my friends who are not deaf or didn't come from Deaf families. And I was felt a little bit strange and different and special at the same time, because I knew a language nobody else really around me knew. And that, you know, made me feel proud and, and in a lot of ways, I was excited to share that with people. But it was definitely different. I definitely knew something was different. I didn't realize how different until I got older.

Colm Cunningham: 6:06

And we're talking about your mum, Carmen. Something obviously must have appeared different when dementia became part of your lives together. Yeah. What were the early changes that started that you started to notice or that she did?

MJ Grant: 6:23

Well, at the time, she was actually caregiving for her mother who is not who was not deaf and had dementia, or Alzheimer's. And so she was her full time caregiver living with her and the some of the early symptoms were that my mother would forget to wear her little buzzer that would go off if my grandmother opened the door because, you know, how would my mother know if she didn't hear the door opening. So in order to be alerted, they there was a little pager almost that would go off and alert my mother that the door had been open. She forgot to wear that a few times. My grandmother did get out. And one time in fact, she got out and she fell on the ice. And it was in the middle of the night my mother woke up and discovered my grandmother was not in the house and found her out in the driveway. And but she didn't, you know, one of the things that struck us was that she didn't call 911. You know, she sat there with my grandmother and she she kind of dragged her in the house as best as she could. So that was a little bit strange. You know, there were also other things that she started doing. Eventually, my grandmother did have to move into what we call nursing home here in the States. And she did have to move into a nursing home because she had broke her hip in the driveway. And then we knew at that point she couldn't be cared for at home. But so my mother continued to live in that home by herself. And she would go driving to visit my grandmother at the nursing home and she might hit a curb. This happened a couple of times where she would hit a curb in her tire went flat and she would keep driving. She would continue to drive with three tires. And she did that twice things like she would she was cold. I didn't have a video phone at the time. So I couldn't see her. If I called her I couldn't see her on the video phone. I could only talk to her through the video relay service. And so my mother kept saying she was cold. And finally I asked the sign language interpreter who could see my mother on the screen. You know what is going on with her environment? What do you see it was the dead of winter and my mother was in, you know, a sleeveless shirt with a little heater in front of her. So that was a little off. So things like that, because she hadn't paid her oil bill. So she had no heat. But she didn't make the connection. The final straw was when she fell in she broke her wrist and didn't say anything for several days. Oh my goodness. Yeah. And we brought her back to Maine where we live at about two and a half hours north of where she was in Rhode Island.

Colm Cunningham: 8:52

And MJ I guess one of the things is that you've helped us produce a guide for family carers and that which again, we will link for audience listening. But I imagine people often complain that for people who aren't deaf, there's very little information out there. It's not easy to access on dementia, but I imagine it was even harder for you in the context of your mum's experience.

MJ Grant: 9:17

Oh, absolutely. And the only reason why I knew anything about anything is because my grandmother had dementia when I was a child. I would volunteer in nursing homes for some reason. I'm not quite sure what drew me to that. To begin with. It wasn't anything my parents encouraged me to do. But through that experience, I had a lot of exposure to people with dementia and Alzheimer's. So I had some some knowledge of it but I had no idea what to do with a deaf parent who, you know, was experiencing this and I just knew we were going to face one barrier after another which we did and continue to.

Colm Cunningham: 9:53

One of the things that's really interesting about you MJ and heartwarming and my privilege of getting to know you is The first time I met you was on YouTube. And it was that communication between you and your mum. And the beauty of it. Many people have got a lump in their throat when I've showed them it. And what's interesting is you're talking about some of the challenges you faced. And clearly, that's challenging and distressing. And it puts a lot of pressure on you and your mother. But somehow, within all that you have sought to get a message of positivity out. And I am interested in why that's been so important to you.

MJ Grant: 10:32

Well, it's funny, because I think through this whole process with my mom, I have discovered quite a bit about myself. And I think there's a lot of healing that can happen when you're experiencing hard things. And I, one of the things that I personally as her daughter was experiencing was a sense of there was sort of a renewal, because it was as if, you know, for my mom, she for several years had struggled with anxiety with some depression with some isolation, she, you know, she had moved up to Maine away from her family in Rhode Island, she wasn't part of her community she grew up with in Rhode Island, raising kids here wasn't that happy in her job, very isolated, in a lot of ways. So as a child, you want nothing more than for your parents to be happy. Really, truly, I think that children just want to see their parents happy. So I started to discover that my mother was experiencing joy, and sort of rolling with it and going with the flow in a way that I had never witnessed, I realized that through the experience of just sharing space with my mother where she the veil was off the bit veil had been removed. There was no, she was she was the stress and anxiety was starting to dissipate. And there she was, you know, just this sort of purity and innocence about her, that allowed us to really just share this connection of not necessarily so much mother and daughter, but human and human, then I felt Wow. You know, isn't this something that when you when you are caring for another person's basic needs, you know, and you and you see the vulnerability? And you know, what, what is it essentially that that is really really truly needed? Its connection. Right? And, and so, because I really, that brought everything to light for me, I felt like wow, what why are we not talking more about this?

Colm Cunningham: 12:44

MJ, when I met you, I had the privilege of getting to Maine in the beautiful place of Maine and getting in autumn. So it was lovely. But at that point, you had your mother with dementia, your mother in law with dementia, and your family all in one household? Yes. Can you share with us a little bit about that dynamic, its challenges. And you obviously went on to make a movie. "So happy to meet you" which again, we will link to try and share some of that. But I'd love to hear from you. Some of what life was like

MJ Grant: 13:19

yeah, okay, so So we've had my mother in and out of my home a couple of times now. And initially, when we moved her back from Rhode Island, she was in my home, we found her an apartment for a little while and hired a deaf woman to go and help out every now and then. And so eventually, we did have to move her into into our home full time. She lived with us for approximately a year and things started to become a little bit more difficult. And at that point, we found a memory care home that was about 20 minutes away from home and we moved her in there. And then a few months later, my husband's mother was found sort of wandering around the streets of our town. And the police picked her up and brought her to the hospital and discovered there were some stuff going on. And we knew that things were not right. But we weren't sure. You know, there were other factors. So eventually, when she was released from the hospital, she had nowhere to go. She couldn't live on her own. So she moved in here. So my mother had been here a year, she we had moved her into the care home, or memory care home. And then three months later, we have my mother in law here. My mother in law was here for a year. And then we had to move my mother back in here because we ran out of money and she didn't qualify for state aid or anything. And we moved my mother back here. So my mother was here. My mother in law was here. The two of them lived together in the house, same time for a year while my father, who is also deaf, lived about 15 minutes away and was struggling with progressive Supranuclear palsy. So I was navigating his care Navigating my mother's care trying to figure out what to do for a mother in law, my mother in law, she's not deaf. And still, there were barriers there for her. So, I would say that by, you know, we did find a place for my mother in law about a month before COVID hit. And that was probably a blessing. Because COVID became a really stressful thing in a lot of ways. And, you know, a sense of renewal in other ways. Some days, you know, some moments, I wouldn't say days, I would say moments that, you know, I feel like, okay, I failed here. I failed there. And that's okay. I can keep trying. And, you know, there's always an opportunity to to have the new moment, you know, and do something different. But it's been a lot of it's been a lot of patience that has had to be practiced and resourcing resourcing, because I, because not only did I have to be there for my mom, I also had to show up as a wife and show up as a mother and show up before a seven year old girl who has some meltdowns every now and then.

Colm Cunningham: 16:08

And you also had to run a business. Oh, yeah. You forgot that one. Just yeah. And within all of that, you still chose to be a voice and an advocate. So you have done a lot to raise awareness, certainly for my team here to dementia center about some of the issues we need to be thinking about. And I realized we're only scratching the surface. In a recent video from you, you talked about the fact that your mom's isolated, in many ways is what I felt I heard because, you know, some, some people may think, Oh, well, this situation happens in care homes as well for people whose first language may not be the language of the dominant culture they're living in. But this feels even more profound than that. And I'd like to hear some of what you think we need to do better to support people with dementia who are from the deaf community?

MJ Grant: 17:08

Well, first of all, I think of having anybody who's interacting with with a person in a care home, who has who is deaf, to learn some signs, learn some sign language, learn a little bit about Deaf culture, it's not just about learning some signs, but learning about Deaf culture, and understanding that, you know, people like my mom are relying on on what she's relying on what she's seeing. For information, right. So so when nurses and staff are wearing masks that are covering their mouth, my mother is missing, not only auditorily, what's happening, but she's missing half of what's been what's on a person's face. So that's missing, you know, so then, and then, you know, when you're still talking through a mask, it's not helpful. It's not helpful, don't bother talking. Use your hands use your body to communicate. And so a number one is learning some visual gestural communication skills, learn some signs, some actual signs, learn some ways to communicate things with your body, to show things that, you know, oftentimes we get stuck on how do I communicate this? Well, what does it look like to pick up a cup? What does it look like you hold the cup and you pick it up and you put it to your mouth? If you take a sip of water, that is a gesture, learning how to do that with people who are deaf, it goes a long way, but also being willing to, to look at things a little bit differently. It's a bit of a paradigm shift. But you know, just saying right out the gate, no, we can't do clear masks, because we can't afford clear masks. I mean, it we need to start thinking outside of the box. Being willing to allow volunteers and who are you know, at our university, we have an interpreter training program, allowing the students who are learning how to become interpreters to come in and do some volunteering with, with residents up encouraging other deaf residents to move into the home. So I haven't I'm in conversation with one particular family in the same state who has a Deaf sister who's in a memory care home in a different town. And I'm trying to get them to move her where my mother is. Wow. So and then also consider hiring somebody who's deaf. Deaf, Deaf staff can work with hearing residents as well. So, you know, if we're, if we're saying, Oh, no, they can't do that, then wait a minute. Why are hearing staff able to work with deaf residents?

Colm Cunningham: 19:38

Yeah, I mean, I'd go further than that, even in fact that we spend a lot of time pointing out that with dementia, verbal communication is going to become more complicated, and and be absent in many situations. So you're actually relying on all of those other skills. So you'd imagine a deaf employee is going to add to your strength and your skill As a community of carers

MJ Grant: 20:02

right, and it just, it broadens your horizons. And you but I, I know, having been in the field of sign language interpreting for several years now that typically employers are resistant with them, but the minute they they kind of let their guard down and are willing to take the quote unquote, risk and hire a deaf employee. Oftentimes, they're the best workers, it creates a paradigm shift within a company when they hire a deaf employee and people, like you said, Colm. I remember when I first interacted with you, and you said, we never thought about people who are deaf. We never thought about that. You know? Well, a lot of people haven't.

Colm Cunningham: 20:46

You're absolutely right. As somebody who's congenitally deaf, you would have thought that I would have thought about this more, I think I did think a lot about the things around hearing degeneration with age and you know, and I would say about the importance of Have you checked their hearing aid is working, you know, early on and relatives dementia, people are saying, oh, you know, is dementia is progressing? And I'm saying, Have you checked is hearing aid? So those classic things? Probably I was well focused on a maybe a bit more sensitive to, I guess one of the things is that you could have been angry. You so even your comment to me is you could have said you should have thought about this, you have chosen not to do that you've chosen to make the short film with us and partner with us on "So happy to meet you" on these books. And I think that that's been really helpful is that you're you're seeking to say how do I get alongside you? How do I help you understand? Because you've just said and I actually don't know the answer to this. So you've really just put a new challenge to me about how many deaf employees there are in my organization. So I'm, I'm, I've got a task right after this podcast asked that question. So I think it's just that real, putting out those questions in a way and really challenging. But I realized that that's, you've got to reserve, you've just listed off all of the things that you're doing. How do you look after yourself as a carer? A mother, I personally run the business.

MJ Grant: 22:18

Hmm. Well, I think I don't get me wrong, there are moments I have been angry there. I mean, at one point, towards the end of having my mother in the home, I was really starting to fall apart. But I always felt the need, I always felt it was really important to show up in a way that I don't know. Remember, she's relying on my face. Okay. So I felt like I needed to show up in a way that was friendly, and kind. So that is one thing. So a lot, some of that was forced, even though there were moments I was just really dying inside. I think, um, through this process, as I said earlier, is there's been a lot of self discovery, I decided to seek out a spiritual counselor who's sort of a transformation coach, and I've been seeing him for three years. And he's been, you know, he's been really talking me through recently, the concept of resourcing and the concept of, of using these really hard things as fertilizer for growth. And because there's a lot of self discovery that can happen so I think that through the process of caregiving, finding this transformation coach really unpacking some of my stuff, and discovering a lot has allowed me to naturally begin to resource and create space in my body in my life. Also, I'm one that discovers hobbies. So roller skating, you know, was a hobby I picked up during the pandemic and that made me I think my neighbors thought I was a lunatic because I would go back and forth down my neighborhood down the street and I was just smiling from ear to ear with my ear pods in and feeling like I was flying and dancing, you know, and that made me happy. I also I I feel like I'm a person who tends to reach out if I need if I need something if I need support. And in other ways I'm very much I can do it all by myself sort of person which I'm still learning to shift to because it definitely does take a village but I am one who has many many people in my life who I know I can call upon for certain things I might I might call upon my you know, dear friend Margaret for a really wholehearted conversation about something that that I might you know, I might not call upon somebody else for but I might call upon my you know, good friend Sarah Jane for if I need somebody to just be an ear for something and I just know no matter what I say she's going to have my back you know, I had people in my life and then I might call upon somebody else who I know is going to be brutally honest with me, which is what I think I might need, but not, you know. So I think I tend to be one. Again, going back to being a connector, I have a lot of people in my life, which is a great thing. And during the process of caring for my mom, there were times when I just pushed everybody out, because I, because I was starting, I was beginning to shut in. But I also think there's a, there's a recipe here, right? I have a, I have a husband who's extremely supportive. And, and I, I think, honestly, too being on having that video go viral, and realizing that the world felt that something, something in that video resonated with them. And and the more I dug deeper into it, it went back to that connection piece. And I realized, wow, you know, look at how many people the world felt so small, at the same time, because it when something goes viral, you meet people from all over the world. And it was it, there was a whole offshoot to that as well, and realizing there's so much beauty that people want to connect with, or they see and they, they, they they too how they too wonder how do you do that. And, and I think it's just by mere connection

Colm Cunningham: 26:29

you've said a lot about and of course, you do have your husband you do, you do have networks that you can call on. But so so much of what you said about the importance of that particular thing that people who may be listening, and they don't have those things is at the core is we've got to have the support. If we if we want to support you as carers, we need to create the networks to support people to be able to continue to care. Now, I think you've thankfully helped us do that by the creation of these free downloads we'll connect on which of these booklets for care staff and for family members, now you've done a Australian version, and we connected with the UK version of this, you're still on the process of getting that US version done. And you've kindly because the pandemic did something negative for you and I, which is I was so looking forward to you coming speaking at our international conference in Australia. But we made the best of it. And we even got you on rollerskates. And so happy to meet you. So we will also put the link to your channel but also that important film that you kindly made for us to get that message across. Yes, just wanted to thank you for for taking part today. But for your continued a campaigning and passion because I think it is, for me your approach to all of this. That makes also people connect and listen. And I'm very thankful for that.

MJ Grant: 28:01

Oh, I'm thankful for the fact that Hammondcare saw something in this whole journey that you felt compelled to support. And I feel a tremendous amount of support from from you all and you know, you the fact that you were able to support the creation of that short film,"So happy to meet you", it sort of was a springboard for us working on a longer documentary, which is called "I remember when" and we're in the midst of filming that right now. And the goal is to get it out into festivals. And so so the more information that gets out there, you know, the more I think awareness will be created. And I do, I do see shifts happening at some point during my lifetime. I don't know if it'll happen during my mother's lifetime. But I do think it will happen during my lifetime. And oh, and by the way, my family and I still really want to go to Australia to go out there. You know, I'm hoping that we can continue to spread this message throughout the world. And also and I also want to say I just want to be really clear about the fact that caring for somebody can be really, really, really hard. And some of this I came into the world with a certain personality, right? And so some of this is my personality. And and I want to be happy and I want I want to I want to dance and I want to have a good time. And this is as far as I know, this is my one life. And I and I feel really honored that I can see my mother. Despite her struggle and the barriers and her having dementia I still see an element of her that is absolute joy and that brings me a lot of joy. And and there are there's as I was saying earlier, you know, through the process of discovery, I do feel like, I've also discovered that there are reasons to be angry too. And it's okay. And it's and it's okay to to express that. Hence, my recent video that I posted that you saw when I was in tears and saying, you know, this is really frustrating. And there's no good solution here. And this is not okay, that we need to do something about this. And, and those are the real raw moments that I have, being a CODA. And I think a lot of other CODAs experience that as well.

Colm Cunningham: 30:35

Well, it's not okay. And Hammondcare will continue on the journey with you to learn and be challenged. And I'm just grateful for you joining us today and sharing this, some of that and looking forward to more that we will learn with you. MJ, thank you so much for joining us today.

MJ Grant: 30:50

Thank you. Thank you so much.

Colm Cunningham: 30:53

Well, MJ I was challenged by your question about whether people employ somebody who has deafness. We do have a deaf employee, a carer. And you're right, the importance of clear masks was not only important for her work in caring for the residents she loves and supports, but also in the way she remained connected and engaged with her staff and colleagues. So it's a very important issue you raised. Thank you again for joining us. On this episode of The Dementia Podcast. We certainly have quite a number of links to resources that we're pleased to have created. These are free resources and there is a UK and Australian version of guides on deafness and dementia. But don't worry, we are continuing to work with MJ on the USA version. So that link that you'll see keep checking in because we're determined to get that guide very soon. I look forward to you joining us again on the dementia podcast. Bye for now.