Dr Regina Koepp: This is part two of a very special interview with MJ Grant. Today I have the incredible honor of interviewing MJ Grant and learning about her experience of caring for her dad at the end of his life.
Dr Regina Koepp: Hey there I am Dr Regina Koepp and this is The Caring for Aging Parents Show. I'm a board certified clinical psychologist and I specialize with older adults and families. I help you to manage the most complicated situations with your aging parents so that you have peace of mind knowing that you are doing everything you can to help your parents live their best lives without giving up your own life in the process. So for the best tips on helping you to care for your aging parents, hit the subscribe button and don't forget to hit the bell ("ding") for new tips every Wednesday. So you may remember that last week I spoke with MJ about her mom living with dementia. I wanted to share with you an important freebie I made if you're needing more information on dementia, it's called Dementia 101: A Beginner's Guide to Dementia Disorders. In it, I describe what dementia is and isn't. I talk about the phases of dementia and what to do if you're worried that your aging parent may have dementia. I'll link to it in my show notes, so take a moment to download it. It will answer some of the most frequently asked questions I get about dementia.
Okay. Now back to our topic at hand. Today I am going to be talking with MJ Grant about caring for her dad at the end of his life. This is the second part of my interview with MJ and in this interview MJ shares some of the most raw and intimate details of caring for her dad at the end of his life and she also talks about her grief process and how she takes care of herself along the way. She even had me in tears in this episode, so you don't want to miss it. Mary Jane., 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 Maine, New Hampshire, and Massachusetts. MJ is also married, caring for aging parents and parenting four children ranging in age from 5 to 25. And today I get to continue the conversation with her.
Dr Regina Koepp: Will you share a bit about how it was discovered that your dad was deaf?
MJ Grant: Yeah. So he, um, he's a rubella baby and so his mother had rubella when he was in utero. And as a result, he was born deaf. They did not know he was deaf until he was five years old. So he went five years without language. So that's, you know, that critical window, that critical period for language acquisition and, you know, to develop those critical thinking skills and all of that - Gone! My father is incredible and I think to myself, if he had been given access to language from birth, he could, he would have done anything! He could've done anything! And because he didn't have that access right away, you know, there were gaps, you know, major gaps in his life. And, despite that, he fought hard to make a really good life for himself and for his family and he was a hard worker and kind. He's kind, my father was so kind and funny. He taught me to, to keep things light cause I can get really serious and deep and you know, overthink everything. He taught me to keep it light. So that was his experience growing up. And, um, he grew up in a family with four sisters and so he was the one boy and he was deaf. And so a lot of focus was on him. And despite that, he still never felt fully a part of family, not because they didn't love him entirely, but because again, going back to that generation, they did fine. They were told not to sign, you know, and so there's still, there's, there's lots of things that were missing in terms of how they could connect with each other, but what they could connect on was love and family.
And there were many other things they couldn't connect on because of that gap. And that divide, that barrier, that language barrier. It's getting better now. I see more and more awareness around, you know, let's embrace sign language and it's a natural language for deaf people. It's getting better now. And at the same time, you're still seeing a lot of these situations like what my father went through. And, I feel for my grandparents because they didn't know. Right? They didn't know. Here, they find out their son is deaf, you know, so, so back then, what do you, do? You listen to the professionals, right? They were people in positions of power who made decisions that affected my father's life for the rest of his life. You know, and they probably, they were not the best decisions or the best advice to be giving.
Dr Regina Koepp: Right. I remember a phone call that you and I had in March. You were sharing with me that, uh, your dad was on hospice and the hospice worker, would write for him, to communicate with him. And you shared with me that this was not acceptable. That, and your dad's most vulnerable time... I'm paraphrasing, but in your dad's most vulnerable time, writing is not his primary language, signing is his primary language. And so you need an interpreter to help him communicate authentically his most vulnerable, emotional, intimate experience. And...
MJ Grant: I actually forgot about that...And, For the hospice worker to be able to communicate her thoughts in a way that would be accessible to him. Right? And so that was, that was an instance. You know, they, they were still learning, I had to educate, you know, about, okay, so you have to have an interpreter. I mean, this is, this is his natural language. Writing back and forth is not really accessible. And it's unfair. It's just unfair. I mean, here's a man who's dealing with a neurodegenerative disease. He's facing dying in six months to a year. Can we please, please just make sure that this is accessible. As it is, you know, it's already difficult. Let's not add on that other layer. And they were wonderful. They were wonderful about it. I mean, it always requires a level of education, you know? And, once I explained that, it didn't take long before they were "Yep, you're right, we need an interpreter." And every time they would go see my dad in his home, they would bring an interpreter after that. I forgot about that conversation.That was in the midst of, Oh, no, not now. Why are we having to go through this again? You know. Again and again and again. Why? Especially in the dying days. Come on. Yeah.
Dr Regina Koepp: So, speaking of your dad and where you're sitting now, you know, where we're filming this interview is particularly meaningful related to your dad. Can you talk about that?
MJ Grant: Yes. So my dad, when, when they discovered he was deaf, they sent him to a residential deaf school. And at the time the deaf school was in town, Portland, Maine, and eventually moved to this Island Mackworth Island. Governor Percival Baxter dedicated his property for the purpose of- I can't remember the exact purpose- It was for a special purpose school, I think. And so, they built the deaf school here and my father eventually came over to the Island and finished off his schooling here on the Island and it's in Falmouth, Maine. And so I was brought up, you know, coming here sometimes for the different events that would go on in the deaf community and, um, you know, different, different, uh, barbecues or deaf culture festivals or whatnot. So this is like home to me. My dad slept here in the dorms. It's really special and meaningful. And when he passed, we had his service here on the Island. And, so everything sort of comes full circle and this place has a lot of meaning to me. It's just a, it's a beautiful, beautiful place.
Dr Regina Koepp: So when did your dad die?
MJ Grant: He passed away June 6th. Yeah, passed away June 6, 2019. And um, yeah, it was pretty fast. You know, the progression of his disease was really rapid and then he made a decision, you know, that was probably the best thing for him.
Dr Regina Koepp: What was the decision? Are you comfortable talking about that?
MJ Grant: Yes, I mean he, he had been falling quite a bit because he had something called Progressive Supranuclear Palsy and that ...I'm sorry for the noise in the background, some copy machine is going off... So he had Progressive Supranuclear Palsy, otherwise known as PSP and it's in the Parkinson's family. Um, and so it's a neuro-degenerative disease. You start losing your ability to walk, you fall backwards. You're eventually going to lose your ability to swallow, to move, all of that. And so slowly he started to shut in and become a prisoner of his own body. And that particular day that he was brought to the hospice home, the Gosnell House here in Scarborough, Maine, he had fallen again. I would get calls, "your father's fallen. I can't get him up." I would go over there and I would try to pick him up. And at this point, my sister and I were alternating going over every morning and every night getting him in bed and out of bed, and that a particular day he had fallen in the bathroom because he was still trying to maintain his independence, trying to get up and do his own thing. And he fell. And when he fell, he fell on his wife on the ceramic tile floor. So he fell and she got black and blue. And at the same time, the hospice nurse was actually coming to the home where the home health aide, you know, from hospice was coming to the home to help bathe him. And she, she called 9-1-1 because he had already, he had just fallen before she got there. And, so that day he said "my back, I think I broke my back."
Dr Regina Koepp: Oh (Gasp!)
MJ Grant: Yeah, this is the second time. Because he had already broken it a couple of years before that.
Dr Regina Koepp: Oh my God. (Gasp)
MJ Grant: And at that point we knew it's done. If he broke his back, he's done because he will not be able to move now. And then it's just bedridden. And, he was a large man, so moving him and shifting him and it would have been very, very difficult. But what I thought that day was they were going to bring him to the hospice home for sort of respite. Let's get him, you know, sort of, um, what is it, palliative care? You know, get some meds in him to keep him comfortable. But we can't do surgery. We're not a hospital. Surgery would not, he would not survive surgery. But as the days went on in hospice, he thought he was going home. We thought he was going home. And then there was this one night nurse who's just so incredible. She's really like an angel. She came in after everybody had left, and I had stayed with my dad. I was diligent about staying with my father, and she came into the room at night too, turn him. And at this point he was saying, "I don't need any meds. I don't need pain meds or anything." But he would tighten up every time, you know, she tried to turn him and she said, "He's in pain. He's not telling us." And so the interpreter had left. Already. They were there during the day. So at night I would, I would sleep there. So the interpreter had left and the nurse was saying, "I think he's in pain and not telling you," because I think he's afraid that he knows if he takes the pain medications, he knows the road it will lead to, which is ultimately everything's going to start shutting down. And I knew in this moment, this was going to be the moment of truth. That my 44 years of existence as his daughter was going to just come flashing, you know, before my eyes. And it would make sense that it was me who was going to have to kind of ask that question: "Dad. The nurse thinks you're in pain and the nurse thinks you're afraid to die. Can we talk about that?" And he looked at me and said, "yes", you know, and he said, um, he signed, "I cry." He couldn't shed tears because his eyes were so dry from the PSP. He just signed, "I cry", you know, and "I want medicine," meaning "to just take a pill". And then he spelled D-I-E. And it was like the first time in my life, I had no voice. I just had this lump in my throat. And the nurse was looking at me saying, "what did she say?" And I just went (hand motion- pause) because there I am as his daughter having to relate to the nurse, "he wants to die" and being the bridge again, not only being the bridge, but also being the support for him and saying, "and that's okay. That's Okay." So that was really, really emotional and beautiful. It was incredibly beautiful, because my dad and I sat and talked for the longest time after the nurse shared, "this is a process and we will support you, you know, and we are here to make sure you are comfortable. And um, you take all the time you need. You sit with your daughter and you take all the time you need." And, she was in tears, you know,
Dr Regina Koepp: Oh Yeah!
MJ Grant: She had never seen this kind of dynamic, and she left the room and it was just my dad and I and it was surreal. It was a surreal conversation to have with your parent. And, um, and he said, "okay", you know, after we talked for a bit, he just said, "I need to go to sleep now". And I said, "okay." And when he woke up in the morning at four in the morning, um, he slept like a log that night and he hadn't, previous to that, he had been waking up all night, every hour, every hour, every hour. I have to go to the bathroom, I have to live bathroom. It was anxiety. And it was his pain and all of that. He wasn't resting and he slept like a log after we had that conversation. And then he woke up at 4:00 AM and said, "I would like some medicine." Okay. And then he slept for hours and then woke up in the morning and said, call the family in. And so I called all the family and they all showed up within an hour and we all go to just hug him in and love him and be with him and allow him to just cry. And it was incredible. It was incredibly powerful. Yeah. And so six days later he passed and it was the most beautiful experience of my life. I have never walked that journey with someone. Life changing.
Dr Regina Koepp: Not just someone, I mean, your dad who you love deeply.
MJ Grant: My father. Yes. So it was really a powerful time and it changed my life really, really.
Dr Regina Koepp: Thank you. I mean, just talking about this end of life process and your experience with your dad and your emotional- just the intimate details of these conversations. I mean end of life conversations are so impactful and if we allow them to be, transformative. Like you're saying.
MJ Grant: Yes. Right? And they're so important. It's so important to show your loved one that you're going to be okay. All he wanted to know was that "you going to be okay. Are you going to be okay? Is everybody going to be okay?" And the entire week, I just reassured him "we are okay. We will be fine. You will be at peace. You're going to fly with the birds, and you're going to fish with your best friend, Bob. And you're gonna like you're gonna, you're gonna meet babe Ruth. You're gonna..." Every time he'd wake up, "I'd say you're so lucky. You're so lucky. You're gonna to experience such peace." And do I know that to be true? No, but what I do know is that he's not going to suffer anymore.
Dr Regina Koepp: But you know what also gave him peace was waking up and seeing people that he loved right next to him along the journey with him.
MJ Grant: Yeah.
Dr Regina Koepp: That when he opened his eyes, there was somebody there who loved him.
MJ Grant: Absolutely. Yeah. Yeah.
Dr Regina Koepp: Okay! So then, you really embraced the process of his end of life journey and then you emceed his service. And what is the grief process been like for now, to date?
MJ Grant: It's, it's interesting the day, I mean, when he passed that particular day, that night when I left. At first when he passed, took his last breath. I was like rooting, I was like his cheerleader, like (gasp) I am so happy for you, you know? And, and then I walked out of the building and all of a sudden I got, I became angry and I, that came out of, I don't know where that came from, but I felt anger at PSP, at everything I just went through at... you know, with, with, you know, everything, it was like my whole life, you know, just came and punched me in the face and this is not fair. And he didn't deserve this and I felt so incredibly angry and I was angry the next day. And, um, and then, you know, and then I got really sad and, and it was like everything felt, um, I don't know. I mean, I don't know if you've ever grieved in, it's to the point in which you're like, is this even real? Am I? Is this real? Like everything was like surreal. And I got very close with nature during that time and I found it to be really helpful. And I did a lot of journaling, a lot of documenting, like creating little videos of my father. And, um, and then I had a job and that was to prepare the service. So then I got a job that kept me busy. Um, and even at the service, I didn't feel deep grief. I felt like I have a job. It's OK if I break down, it's okay if I don't. What I felt was a sense of community, coming together, embracing one another, embracing love, embracing the journey, and um, that was really beautiful. And the times that I grieve now are the times when I'm driving to the gym in the morning. And before it was, instead of taking a right to go to the gym, I would go straight to his house to get him out of bed. And I don't go straight anymore. I take that right. That breaks my heart. Every time I get to the gym, I feel like I'm in, you know, going to cry because I'm no longer going straight.
Dr Regina Koepp: Oh yeah, that's a road you will never travel again.
MJ Grant: I'll never travel that road again. I'll never hear his voice again. That, that the unique way in which he would say my name. And I'll never, I'll never see that twinkle in his eyes again. He and I shared a very special bond and we got each other. We understood. I knew when he was joking and teasing and trying to pull a fast one on me. And, and he knew when I caught him in it, you know, and so we just had that bond. I'm daddy's girl! Big time! Always was. And so I'll never experience that. Um, and I don't want to forget. I don't want to forget. And I can look back on videos and remember, and I remember the feeling, but it's just, it's a lot of, I'm still hanging onto a lot of things that I am sad to never see again.
Dr Regina Koepp: Well, what a beautiful gift your parents have given this world in you.
MJ Grant: Tremendous, tremendous, tremendous. I mean, gifts beyond gifts, beyond gifts, beyond gifts...
Dr Regina Koepp: I'm not sure that you heard me fully. I said, what a beautiful gift your parents gave to this world in you, MJ!
MJ Grant: Thank you.
Dr Regina Koepp: And your willingness to talk about it and to be so real with it and um, to not be too precious or protective of the experience and to fight for justice and to advocate and make room and space. It's a beautiful thing.
MJ Grant: Thank you.
Dr Regina Koepp: So, okay, so now I'm going to dry up!
MJ Grant: I never know when I'm going to break down and when I'll, you know, I never know when I'm going to cry, but I, I can tell you I cried more than I ever have in my entire life and I love it. Love it!
Dr Regina Koepp: Well, welcome. Welcome to my world of tears. And I'm the one interviewing,
MJ Grant Deep breaths, that's what I do, I take a lot of deep breaths
Dr Regina Koepp: Oh yeah, I noticed that in your videos. This (deep breath)
MJ Grant: Yes.
Dr Regina Koepp: And then signing. Okay. Let me ask you two more questions because you also have to get to another meeting.
MJ Grant: I do, yes.
Dr Regina Koepp: Okay. So, how do you know you're getting burned out as a caregiver?
MJ Grant: When I look at my husband and I say: "No, I'm not doing it. I can't do this. I can't do this. I can't handle one more thing." Because on top of being a caregiver, you know, I have four kids, one of them is 25, so he's not at home, you know, so I have a daughter, an 18 year olds who's trying to figure out her life. I have a 15 year old who's in varsity soccer and you know, I have a five year old who needs her mom, and they all need their mom and I have a full time business and I'm interpreting out in the field and I and there's always somebody who needs a piece of me. And sometimes- "NO- I don't want any of that!".
Dr Regina Koepp: Stop!!!!
MJ Grant: So, I just took off for a week last week by myself. And um, that's, that's sort of like the way in which I can recharge, recalibrate, recenter, refocus. I come back. But, yeah, there's moments. I mean, I've, I've, I've been known to lose my mind every couple of months and it's, I might just scream, you know, just scream, you know? Yeah,
Dr Regina Koepp: Do you cuss?
MJ Grant: Yeah.
Dr Regina Koepp: I would be like... All my words would be beeps basically.
MJ Grant: Yes, Yeah, that was happening. I was swearing, I was swearing a lot before my, before I took off for a week. My husband was saying "MJ, you need to watch your mouth". Swearing a lot in front of anybody. I didn't matter. I was losing my mind. Yeah.
Dr Regina Koepp: Now how do you take care of yourself when you're getting burned out? So one you said was, uh, you take some time for yourself, like you had the week off, but do you do something on a daily or...
MJ Grant: Well, I try to get up early in the morning and go to the gym. I do CrossFit, but I haven't been able to get there as much as I would like to because being so busy. But, I really do enjoy going to the gym. I take time to- I'm with nature more than I yet used to be. In between jobs, sometimes I will just park my car and sit in a park that I've never sat in, you know, or just sit at the water here on the Island and look at the water. It can be something very simple or just sit in my car and shut my phone off and take some breaths and just really kind of tune into my body, see what's coming up for me. You know, I also have an amazing counselor who I see. He's in Canada and I see him through Zoom every week and I'm really diligent. I've put a lot into wellness over the past year. That's been incredibly helpful to me, going back, you know, sort of looking at some of the past stuff, seeing how that informs me now and what I can do about it. It's just really acknowledging and tuning into your inner wisdom and that's been really helpful to me. Yeah.
Dr Regina Koepp: Wonderful. So thank you. Thank you. Thank you. Where can people learn more about you and follow you?
MJ Grant: Well, right now it's just my personal Facebook account. That's MJ Grant and I haven't, I'm planning on opening up a new account that would share this journey and I'm not quite sure what I'll be calling it. On Instagram, my handle is, uh, I believe it's the Heart Sessions and or you can probably look up MJ Grant. Um, I do have a Twitter account. I'm trying to figure out a way to kind of use all the social media platforms, but if you look up MJ Grant dementia, you're probably going to find me on YouTube. You're going to find me on Twitter. You'll find me on Facebook and Instagram.
Dr Regina Koepp: Well, I can link to your social media, where you want people to link to so that would be great. You can share that with me and I'll link to them and people can find you easily.
MJ Grant: I really love connecting with people. I've met the most, the world's most beautiful people over the past year of my life. It's been incredible. So I just love connecting in that way.
Dr Regina Koepp: Well, thank you. Thank you. Thank you. Thank you. It just is such a gift for me and such an honor for me and my listeners to get to meet you on a really personal and intimate level. I mean your willingness to share some of the deepest experiences in life is just a beautiful thing. So thank you so much.
MJ Grant: Thank you. This has been truly an honor and I really appreciate the opportunity to share my story because I think it's just part of my journey right now, sharing is really important to me. So thank you.
Dr Regina Koepp: Words cannot express the admiration I have for MJ and her family. It is such an incredible gift that MJ is giving to the world by sharing her caregiving journey. So please show her some love by visiting her on social media. I'll link to where you can find her in my show notes. So you might remember that last week MJ and I spoke about her experiences with caring for her mom with dementia. As we wrap up today, I wanted to share an important freebie filled with loads of information about dementia. It's called Dementia 101: A Beginner's Guide to Dementia Disorders. In it, I describe what dementia is and isn't and the phases of dementia. I also talk about what to do if you're worried that your aging parent may have dementia. So take a moment and download it. It answers some of the most frequently asked questions I get about dementia. If this video was helpful, be sure to subscribe and hit the like button so I know to make more videos like this. And don't forget to share this video with your friends who are caring for their aging parents because nobody should have to do this caregiving-thing alone. Lots of love to you and your family. Bye for now.
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