What's Anticipatory Grief? A Grieve Leave Chat with Jessica Guthrie

It was an honor to sit down virtually with my friend Jessica Guthrie to talk about her feelings of anticipatory grief as she cares for her mother. We covered a lot of ground in our half hour together, including the intersections of race and grief in America. I hope y'all will get as much out of our conversation as I did. Watch our interview below, or read the transcript.

 

It was an honor to sit down virtually with my friend Jessica Guthrie to talk about her feelings of anticipatory grief as she cares for her mother. We covered a lot of ground in our half hour together, including the intersections of race and grief in America. I hope y'all will get as much out of our conversation as I did. Watch our interview below, or read the transcript.

Grieve on. 

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Rebecca Feinglos: [00:00:00] Hi, everyone. Welcome to the second episode of Grieve Leave: Let's Talk, where I, Rebecca Feinglos, founder of grieveleave.com, am sitting down with some amazing people who have grieved out loud and I'm learning from them in this year that I'm spending, figuring out my own feelings and learning about grief and grieving and what that actually means.

I couldn't be more excited today to welcome one of my favorite people on the planet, truly. My friend of a decade— actually 11 years! This is Jessica Guthrie, who has been sharing her journey online as a caregiver for her mother who is terminally ill with Alzheimer's. Her journey is being shared online, and it's called when career and caregiving collide. [00:01:00]

Jess. It is incredible to see you and I can't thank you enough for taking the time to be here. Let's just kick things off. Can you start by telling all of us just a little bit about you and who you are, and can you tell us about your mom?

Jessica Guthrie: Awesome. Well, hello everyone. My name is Jessica Guthrie. We'll probably use Jess and Jessica interchangeably on this chat today.

I am a caregiver of my mother who is 73 years old, living with Alzheimer's disease. My mother is someone who is fiercely independent. She is extremely strong and has been so intentional in the way in which she raised me. And so it only makes sense that I have spent the last seven years, pouring back into her, and taking care of her.

And so a little bit about me. I am an only child. My mother is a single mother, originally [00:02:00] from Virginia and spent about 12 years in Dallas. I would like to say that I am a caregiver, I'm an educator, an executive leader, and a dance fitness instructor in my spare time.

Rebecca Feinglos: Okay. Pin in that, that's our next conversation.

Jessica Guthrie: But I spend my daytime working for an education nonprofit, and then all of my other hours are spent caring for my mother. I recently moved back home about two years ago, to be her full-time care, so that I could be as present and proximate to her and not have any regrets on this journey. And so that's a little bit about me.

And then my mom, you know, my mother was actually an educator as well. My mother worked in education for the past 18 years, before that she owned her own salon, and she became an educator so that she could take care of me, which I think is always just like so powerful – like she gave up her [00:03:00] career, her traveling around the world to pause and make sure that I got the best education possible.

I had the greatest access to resources and opportunities. And so, you know, when you fast forward to now, I am putting my career on pause, sacrificing so much, to ensure that she has the greatest access and resources possible navigating the journey. So I just, I find there's a lot of like parallels in our stories. But I'll pause there.

Rebecca Feinglos: No, this is incredible, Jess. And I mean, I've been following what you've been putting out on the internet for a while now. And— but I think most of the time when people think about grief and grieving, the automatic thing that comes to people's minds is that is the feeling that takes place after someone has died.

Jessica Guthrie: Mm.

Rebecca Feinglos: And people might not immediately think of grief as a feeling you might have while someone is still alive. And I wonder if you could share more about how you might be grieving for your mom, even though she is still alive. And what that means to you, what that feels like for you.

Jessica Guthrie: Yeah. As of today, August 11th, 2022, my mother is still alive and kicking and doing well.

But I— let me share a brief bit of context. So my mother has Alzheimer's disease. Alzheimer's disease is often thought of as just like, oh, it's a memory disease, but that's actually the furthest thing from the truth. My mother was diagnosed with early onset Alzheimer's about a little over seven years ago. And it starts out as, you know, cognitive decline. So like forgetting where things are, misplacing things, but it then moves into personality changes. And we are now at the stage where, her physical health is [00:05:00] starting to decline, so she no longer walks. She can't sit up, and she's fully bed bound.

And so that's just like the context of Alzheimer's. I would say though, because this is such a progressive disease that focuses on the brain, I have been grieving my mother from the very beginning of this journey. And I say this because, I think Alzheimer's disease is like a slow death because you watch someone change right before your eyes.

And so when I say I've been grieving seven years, I think the first thing that you grieve is like, oh, my mother is no longer the same. She doesn't remember to call me. I can't call her and gossip and tell her all the, the things happening in my life too, you know?

I am now grieving how my life is changing. Because I had, I packed up everything, put my stuff in storage and made the choice to move back home. And so it was both the grieving, my mother changing. [00:06:00] There's the grieving of who I once was so that I could shed all of that and be present for her.

There's also the grief of like who we were as a unit. You know, I just posted a picture recently of just my mom. Like it's photos of us throughout the years and like we have been inseparable. And I think what I didn't have words for in the early part of this journey is what I now know is grief because I no longer have the person that I depended on. She now fully depends on me. And so I have taken on the role as being her, like, provider, her supporter, her caregiver. She looks to me for support. She looks to me for strength. And so in that role reversal, I'm also grieving the fact that my mother is no longer my mom. And that's never coming back.

But I got ahead of myself. [00:07:00]

At the beginning of this journey, honestly, Becki, I was always just so sad. I would cry myself to sleep. I would like have these like anxious, panic attacks and I didn't have…I didn't have the words for it. Yeah. But what I now know that those are like all symptoms of me, like, grieving and what they call is anticipatory grief.

Right. But I didn't know that that was happening to me cause I didn't, I didn't see people who looked like me my age, having to navigate, caring for a parent, let alone, you know, being 26 years old. So that's probably been the hardest part is, like, the slow changes. And so it almost makes me want to, what's the word, savor every moment, because literally the next day could be so different.

I was thinking this the other night, I, every night we would, I, we [00:08:00] sing this good night song. It's like [sings] good night, sweetheart. Well, it's time to go. And it's like, [sings] do, do, do do. And my mother would always do the, do, do, do dos. And I always, I was like, I should record this one day and like, I never recorded it.

And Becki, when I tell you the other night I sang to her and it was completely silent. And it was like, oh, I should have taken advantage of the moment because she will no longer do the do to dos. And so, you know, it's, it's the slow changes that put you in this space of like, oh, I'm grieving every day, every day.

Rebecca Feinglos: I mean, you've said so much, that is so profound and powerful and even challenging the idea that there has to be a death to feel grief.

Jessica Guthrie: Mm-hmm.

Rebecca Feinglos: Even though you didn't have the words for it, you were feeling [00:09:00] grief and I just have to say what you've described so far reminds me of losing my mom slowly to brain cancer as a child, and now reminds me of how I feel with my 98 year-old grandmother. And just watching that slow loss, anticipatory grief hurts so much.

Do you feel like you are able to take space to actually process your feelings? I mean, you are incredibly busy as a caregiver and a professional. I know you've now taken leave as a caregiver, but have you made the space for your feelings and to feel this grief?

Jessica Guthrie: In the early part of the journey— So I would say, this has been seven years. So like the first, the first four years I did not make this space. And the way in which I was processing my grief was like, go mode, like, you know, get the systems in order, get the routines, doctor's [00:10:00] appointment this, you know, be present for that, fly here, fly there.

Right. So I, I actually channeled my feelings into action. I channeled my feelings into creating all the things to try to make, you know, caring for her as like efficient and easy as possible, you know, finding caregivers or, you know, setting up the home, make it easier for her to navigate. So I would, I almost— I would not say intentionally avoided it, but I definitely like pushed it down because I was like, there's no time for this. We have limited amount of time. And like, I need to make sure that my mother feels like she has everything she needs and she's treated with respect and dignity. So I will do whatever it takes. Like it was just like, I would do whatever it takes by any means necessary, you know.

However, I will say I did not start like feeling and creating space for this grief until I made the transition from living in Texas to [00:11:00] moving back home to my mother's house, because for me, that was like a moment of like, who am I? Not just who am I, but like, what am I going to do with myself? Which also opens up all these like feelings. I was also a place where I couldn't dream anymore. It was no longer like the next five years I wanna do this. It was like, I felt stuck and I could not see beyond my nose. And so I share that because in that transition, I was forced to say, okay, “What are you really feeling Jessica, what's really happening?” And then of course the pandemic started a year after that, once I moved back home.

And so it actually forced me to slow down. It forced me to take intentional moments in the evenings or in the early mornings before my mom wakes up. I take this space often to just like reflect, to meditate, to do my own prayer process to let it out. I cry every day, but [00:12:00] crying doesn't have to be a thing that like, oh, woe is me. It's like a, it's a release, it's, you know.

I often spend the mornings thinking like, you know, today will be an okay day. Today is not yesterday. I get a chance to start over. Right. And then I'll spend in my days thinking, okay, what is different? But also what went well? And then that often leads me to like, thinking about memories and moments of my mom.

And so even last night, like I, I laid in bed just started thinking about, oh, my mother will never be able to do this thing again. But that's okay because I've been here, I've been present and I've been alongside her the whole way. And so there's no regrets.

So to answer your question, that was a long way. I spend time on the front end of the day. Yeah. And in the evenings slowing down and pushing myself to feel whatever it is and not like letting myself feel bad about however I'm feeling. [00:13:00] 

Rebecca Feinglos: You know, that's so brave, Jess. It is brave to make space for your feelings and not just push it down and not just, these are big air quotes, not just focus on the caregiving structures and channeling your feelings into work.

You are being so brave by creating that space for yourself and I have immense respect for that bravery. So thank you for being vulnerable enough to share that this is something you've learned over time, how to, how to grieve, you know, how to create spaces and systems that work for you to do that.

Jessica Guthrie: There's no book. There's no guidebook, you know?

Rebecca Feinglos: I kind of wanna make one, but anyway, that's like also another conversation. Okay.

Let's come back to something you said. You said like kind of as a quick clause, offhanded little, and I wanna, I wanna come back to it because it's something that I know is important to you. It's important to me too. [00:14:00]

I am 33 years old. I am a white woman. Both of my parents are dead. That felt to me as a very rare, shocking thing when it happened. I guess I was 31 years old when both of my parents were dead, because my dad died two years ago.

But as—and my mom died down as a kid— as I have spent time this year, learning about grief and grieving and really sitting in that, what it means to, to have— let's go with kind of the death side of things— to have death in my life. Something that seems so obvious now…there are astronomical differences in the amounts of grief that people in our country who are black and brown, the amounts of grief that they face by the time they're 31 years old, or 33, however old they are.

I wonder to [00:15:00] what extent did your identity as a black woman influence your decision to share your story as a caregiver, which, as you've now shared, is also a story of grieving. And how does, how does your identity as a black woman come into play, here?  

Jessica Guthrie: So I, I decided to start like publicly share my journey because I did not see people who looked like me when I started. I was 26 years old, young, black woman early in my career, single, right. Like, not married. My mother's a single mother. So there's like the, everything fell on my shoulders and that was like, partially why I was also probably anxious all the time.

Cause I was like, oh my gosh, I'm so alone. Right? No one's experienced this before and lo and behold when I started [00:16:00] sharing my experience publicly, there are so many of us that are young black women, early professionals who were just trying to figure it out and in search of community connection, support.

And so my identity was actually one of the main drivers of sharing so publicly outside of like my private social media. That's part one. I think two, as I've been on this journey, and had to navigate the systems of healthcare systems of home health, hospice, Medicare, like everything. It has been a stark reminder of how just inequitable our country is.

Particularly when you think about the experience of low income black Americans, on top of perceptions, assumptions, and biases of how people [00:17:00] treat me and my mother within this system. And so I think experiencing the little microaggressions, experiencing that feeling of people, are they listening to me, experiencing like the barriers of trying to find out information, and this is all, like, rooted in race and class, right. Access, all that.

It has led me to be even more passionate about sharing, because what I also realize is that, like, I've got a really loud voice. I am an advocate for my mother, and there are so many people who are defeated and who, like, give up or don't seek out resources because they don't see, like, people who look like them navigating that.

That's the second thing. And then to the first part of what you were saying, so my third point, this piece around by 33, there's so many people, especially people who identify as black and brown in this country, who've experienced so much grief and loss. I think that's, that's true. [00:18:00] I mean, I think every day, walking through the smog of racism and oppression, like, creates moments of grief for people.

And so it just, this experience has almost amplified for me how visible I am yet, how unseen I am at the same. And that is, it's just a, it's a strange thing to carry. And so I think my way through that and holding that has been sharing my story, being open about it, holding space for other people, whether you look like me or not.

But to normalize, talking about dementia, particularly in the black community, the perception of Alzheimer's disease, like I said, is, is like, it's just a memory thing. But when you actually look at the statistics, the number of black people in this country, black women impacted by Alzheimer's, it's actually significantly greater than any other racial group. 

Rebecca Feinglos: Wow.  

Jessica Guthrie: Yet we're not talking about it. Families aren't supporting us. [00:19:00] People don't know. And so it just creates an even greater loneliness, which is also why my identity has forced me— not forced, but been an influencer of sharing even more.

Rebecca Feinglos: I wonder, could you speak to what could happen if we were as a society to empower our communities of color to be more visible in their grief? What do you think? What would that look like? What would it feel like in our country?

Jessica Guthrie: Wow. Empower communities of color to be more visible in their grief. And I say this, knowing that there are people who are actually really visible in their grief, like it's not that it's not happening.

However, what I think would be more true if this happened across the board more consistently, is that, one [00:20:00] people would actually leverage resources available to help them navigate their grief. Let's not talk about the fact that like people of color, communities of color are not taking advantage of mental health resources in the ways that non POC communities are, right.

Like there's way more we could be doing there. But there's a stigma in that, when we start talking about grief. We start talking about the ways in which we navigate…We start talking about like how we move through and strengthen and empower ourselves. How some of us have done that is through the use of therapy, through, like, speaking to other people, letting those feelings out. 

I think that's one thing. I think the other thing is that throughout this journey I've also realized how lonely it is and how people almost like turn away, because talking about grief, navigating death, seeing someone change is hard for [00:21:00] people. But imagine if we normalized being vocal about our grief, we would almost create a, I would think just a more supportive community that wraps our arms around each other.

Right. I can't tell you the number of times people have called and said, oh, well, I've accepted her diagnosis. So I'm not going to stop by. And you're like, what? Why. And so I just like little things like that, where you're just like, how do we shift that mindset and that orientation so we don't leave people high and dry. Both the caregiver and the person who is sick. Like my mother still loves to be talked to. So that's the second thing I'd say.

And then the last thing honestly, is like the more visible and the more we start talking about grief, especially in communities of color, it allows us to take control of the narrative. It allows us to be even more just [00:22:00] emboldened and unapologetic about, you know, controlling our health, controlling the choices that we make advocating for what we need. Right. Like part of the reason why there's, the policies are not set up for us to thrive is because we are not talking loud enough. You know what I mean? Like, and so it's like, how do we own it?

And then turn that into getting the things that we need to thrive versus what it feels like right now, being stuck under like an oppressive system that does not support or see each other. And that's not okay.

Rebecca Feinglos: So no, I mean, what a beautiful vision— and a stark reality you have shared in what the present feels like.

You've said the word lonely or loneliness multiple times just in our conversation and that resonates with me because even I have felt lonely in navigating the death of my father, and I feel actually quite [00:23:00] embraced by a very open community. I think there's so much fear in talking about grief and talking about death and talking about illness and that is true across America. I think we, we have overall fears there, but I think you've spoken really beautifully to what could be possible.

Jessica Guthrie: Mm-hmm

Rebecca Feinglos: I want to be cognizant of our time together and round us out with one more big question for you, Jess. You shared something the other day on Instagram that has stayed with me for days. I'm paraphrasing, but you basically said at some point, you know, you're glad that your caregiving journey and your mom's journey is almost over and it surprised you to have said that out loud.

Jessica Guthrie: Mm-hmm [00:24:00]

Rebecca Feinglos: Can you speak more to that gut feeling that you shared with the internet? And how that feeling of, you know, oh, this is almost over, how that feeling might intersect with grief and grieving?

Jessica Guthrie: Yeah, I said it very clearly too. I was speaking to a lady at the auto shop and I said, it's been seven years and I'm ready for this to be— I'm about ready for this to be over. And I never said it before. Like I— that had never come in my, my mouth before. But I think that that was, that was a sign to me that my head and my heart were aligned and that we had, I had gotten to a point where one, I am mentally exhausted. I am physically exhausted. I have had to carry this for so long, on top of seeing my mother, who I can tell you [00:25:00] very clearly is also physically exhausted.

She still got so much spunk and energy, so she's, she should, she should stick around, but like she could, you could tell she's not fully as there she once was. And I think me saying that was almost an affirmation to myself that if she left here tomorrow, that I would be okay. And that, the journey coming to an end— I'm aware of it. I'm not scared of it. And I welcome when that time comes.

I was not here two months ago.

At the end of April, top of May, my mother fell unconscious. And when I tell you, I could not, I could not bring her to come back. And I was like, mom, don't go. Don't go. It's too early. I'm not ready. I'm not ready. Like I remember like pushing on her chest saying I'm not ready.

She eventually opened [00:26:00] her eyes. And I think like, okay, why wasn't I ready at the end of April? But why am I ready now? And I think it's because I've taken the time to realize that, one, you've done everything you can. And you've been an amazing daughter. You have poured into her. You have given her not just your time, your energy, but you have created moments to carry me through.

And then, two, is like, I've honored her with the most respect and dignity to ensure that she was still dressed to the nines and treated well. And so there's a, there's like almost a sense of closure.

And so, yeah, when I said that it was like— I'm exhausted and I'm ready. And don't get me wrong: seven years is— because I've been grieving for so long, I've been saying goodbye to my mother. [00:27:00] It would not be a surprise to me if she didn't wake up tomorrow. And I would not regret not, not telling her that I didn't, that I, that I loved her, right. Like I tell her that every moment of every day, because I know that it could change at any moment. Oh, I've, I, I don't know if that was clear, but…

Rebecca Feinglos: It was, Jess. It was you… you have shared that you… but this, this comes back to you having made, you have made space to feel, you have made space to tell your mom that you love her. You have made space to process the feeling of loss to grieve every single day. And maybe that wasn't true a few months ago. And because you have done that for yourself, you've done the brave thing. Your mom is being brave, too, I think we should also add here. And you know, that. You've both been incredibly brave, and you have so much to be proud of. [00:28:00] I'm proud to just be your friend every time I see you post I'm like, hell yes, Jess.

Thank you for everything that you're sharing and what you're doing. And it resonates for me in what I see in you. I know it is resonating to so many thousands of people, particularly people of color and the space that you have created on your platform is invaluable. Thank you. Thank you for all you're doing, Jess.

Jessica Guthrie: Thanks, Becki, such good questions that, that helped. That helped me. This is a moment of me also processing out loud. So thank you.

Rebecca Feinglos: Oh my gosh. Yes. Well, I can't thank you enough for taking time out of your time…with your mom to have this conversation. And that means a lot to me personally, and I value our friendship so much. But thank you. As, as we share online, I know it will mean a lot to other [00:29:00] people too. So thank you for being here.

Jessica Guthrie: Absolutely. Absolutely. Thank you for holding space for me.

Rebecca Feinglos: Totally. Make sure, folks who are watching, to follow Jess, Jessica Guthrie @careercaregivingcollide on Instagram. And please don't forget if you enjoyed this conversation or you felt like you learned something today. Go to grieveleave.com at the bottom, scroll down, join my mailing list. And you can follow me on Instagram too @ RebeccaFeinglos. I actually think it's @ rfeinglos. I should know my own handle by now. But thank you all so much for joining and grieve on everybody. Thanks.

Jessica Guthrie: Bye!