Episode 174
Who Will Name the Bees? A Memoir of Motherhood and Alzheimer's
Today, we dive into the profound and often heartbreaking journey of caregiving through the lens of Sarah Vosburgh, who shares her deeply personal experience of caring for her mother diagnosed with Alzheimer's disease. As roles reversed, Sarah navigated the emotional complexities of guilt, grief, and the intricate healthcare system while witnessing the gradual loss of the woman who raised her with love and wit. Her story highlights the invisible emotional labor of caregiving and underscores the need for understanding and support for those in similar situations. We also discuss the importance of presuming good intent and finding grace amid the challenges of caregiving. Join us as we explore how this journey can build bridges of compassion and connection in our lives. A heartfelt exploration takes center stage as we dive into the poignant journey of Sarah Vosburgh, who shares her profound experiences navigating the complexities of caregiving for her mother diagnosed with Alzheimer's.
The conversation unfolds with Rev. Dr. Keith Haney, who sets the tone for an insightful dialogue on themes of love, loss, and the intricate emotional labor involved in caregiving. Sarah reflects on her once tumultuous relationship with her mother, colored by misunderstandings and differing perspectives, which were put to the test as her mother’s illness progressed. The discussions delve into the painful reality of Alzheimer's, highlighting how the disease transforms relationships, leading Sarah to grapple with guilt, grief, and the challenges of a convoluted healthcare system. Through laughter and tears, Sarah candidly shares the wisdom gleaned from her mother, emphasizing the importance of presuming good intent and the grace we owe each other in our imperfections. This episode resonates deeply with anyone who has experienced the slow, daily loss of a loved one and seeks to understand the emotional weight of caregiving in a system that often feels inadequate. In today’s episode, we witness not just a story of personal struggle but a universal narrative that speaks to the heart of human experience. As Sarah recounts her journey, she provides insights into the trials caregivers face, from managing daily responsibilities to navigating the emotional toll of watching a loved one slip away.
The discussion touches on the often-overlooked burdens of caregivers—being part of the sandwich generation, balancing the needs of children alongside those of an ailing parent, and the social isolation that can accompany such a role. Listeners can expect to hear about the moments of humor that punctuated the darkness, as well as the raw honesty in Sarah's reflections about her mother’s decline. With the heartwarming backdrop of beekeeping woven into the narrative, the episode serves as a reminder of the beauty and complexity of familial love, urging caregivers to seek support, trust their instincts, and find solace in shared experiences. This episode is a testament to the resilience of the human spirit and the connections that bind us through the trials of life. As the conversation wraps up, we are left with powerful takeaways about the nature of caregiving and the shared experience of those walking similar paths. Sarah's story serves not only as a personal testament but also as a beacon of hope for others in similar situations. The podcast reminds us of the importance of community, encouraging listeners to reach out to support networks and advocate for better resources for caregivers. With a focus on unconditional love that permeates the dialogue, Sarah's reflections invite us to embrace the messiness of life and the profound connections that arise even in the face of heartache. This episode is a clarion call for empathy, understanding, and the courage to build bridges, reminding us that we are never truly alone in our struggles. It’s a beautiful reflection on what it means to love and care for someone, even when that process leads us through the valleys of grief.
Takeaways:
- Sarah Vosburgh's journey through her mother's Alzheimer's reveals the emotional complexities of caregiving, including guilt and grief.
- The podcast emphasizes the importance of presuming good intent in relationships, as illustrated by Sarah's reflections on her mother's advice.
- Caregivers often navigate a complicated healthcare system, facing misconceptions about the slow progression of diseases like Alzheimer's.
- The conversation highlights the hidden burdens caregivers bear, especially those balancing family life with caring for a loved one with Alzheimer's.
- Sarah's memoir, 'Who Will Name the Bees?', illustrates how writing can be a therapeutic outlet for processing grief and memories.
- Listeners are encouraged to seek support systems, reminding them that they are not alone in their caregiving journeys.
Links referenced in this episode:
Transcript
I am your host, Reverend Dr. Keith Haney. Each week, we sit down with people whose lives invite us to see courage, compassion, and connection in new ways. Our guest today is Sarah Vosberg.
For much of her life, Sarah felt misunderstood by her mother, a woman whose life exemplified the rhythms of suburban America. But everything changed when her mother was diagnosed with Alzheimer's disease.
As roles reversed between mother and daughter, Sarah finds herself navigating guilt, grief, and an increasing complex healthcare system while addressing the slow, daily loss of a woman who raised her with honesty, vulnerability, and even moments of dark humor. Sarah's story sheds light on the visible emotional labor of caregiving and the profound transformation it demands. Sarah, welcome to the podcast.
Sarah Vosburgh:Thank you so much. It's a privilege to be here.
Rev. Keith Haney:That's glad to have you on. This is an important topic. So many people deal with that in their life.
So I'm glad we will be able to kind of give some insights from your experience and kind of help people who are navigating that form, that time in their life as well.
Sarah Vosburgh:Indeed.
Rev. Keith Haney:Someone ask you my favorite question? What's the best piece of advice you've ever received?
Sarah Vosburgh:You know, I thought long and hard about that because I know that's how you start your podcast. And.
And I think the best piece of advice I got was from my mother, and it was something that she lived but didn't say out loud to me till I was probably a tween. And I was really annoyed with my paternal grandmother and complaining about her and about how she wasn't the grandmother that I expected her to be.
And my mother said maybe she's the best grandmother she can be. And my mother lived that. She. She presumed good intent from everyone until she was shown otherwise.
And even when she was shown otherwise, gave people a lot of grace for their own quirks and failings, probably because she would have liked some of that in return, especially from me, you know, growing up, that mother daughter thing. But, yeah, I did see her live that on a daily basis. And it does echo in my head on the regular.
Rev. Keith Haney:Wow, that's powerful.
Sarah Vosburgh:Thank you.
Rev. Keith Haney:Powerful statement, but also a powerful testimony to how we need to approach life and people understanding that we don't always know their circumstances, we don't know their background, we never walked in their shoes. So maybe we're just doing the best we can at with what we've been given. So.
Sarah Vosburgh:So, yeah, it was a good lesson, and I. I didn't really get it when it was given, but I have certainly gotten it, and it. It continues to resonate yeah.
Rev. Keith Haney:So let's get into your story. So before Alzheimer's into the picture, you often felt misunderstood by your mother.
How would you describe your relationship back then and how did it. History shape it and change it?
Sarah Vosburgh:My mother and I just, I think, came at things differently and before the, the advice about accepting people where they were and presuming good intent, before that really sunk in and I really began to feel that and know that I judged my mother a lot for her quirks, for her what I perceived as her shortcomings and the ways in which we were different and we approached a lot of life differently. And she would encourage me to be different and then later diss me for it.
So it was, it was just this, this interplay that I think got kind of convoluted. But there was always love underneath it and I didn't.
When it came to the, to the Alzheimer's and her being sick and, and all of the things that went with that, I'm not sure that our. I'm not sure our relationship really changed. Change so much as it got suspended because she wasn't.
I was losing her in bits and pieces, even those things that I appreciated even when I was 12 or 13. But obviously I grew to appreciate her wisdom more as I got older.
And not having it there or her not being able to reach for it in her memory was disconcerting.
And if I jumped into it rather than suspending it, I think it would have rendered me incapable of doing what I did during her infirmity and making the decisions that I needed to make.
Rev. Keith Haney:This is a disease that is a slow moving one oftentimes. When did you first realize something was truly wrong?
Sarah Vosburgh:You know, they say judgment is the first to go and I didn't recognize any of that. Looking back on it, I can see it. There's a lot I can see looking back, I'm not really sure. I would say a good 10 years though before she died.
I knew something was off, something was wrong, but I also didn't again didn't allow myself to think too much about it. She was married at the time. She was obviously her husband was with her most of the time and not me. And he was totally clueless.
The only reason I wasn't clueless, having the distance from her that I did because I wasn't living with her, was that my grandmother went down the same path. And I was old enough to watch my mother navigate that and old enough to see the way my grandmother disappeared in bits and pieces. So as I.
It took largely the same progression with my mother.
And so when I recognized it happening, I pushed a lot of it aside because she did have someone with her who was a caretaker and who didn't seem to be bothered by her foibles and so on. And I probably didn't really, really get worried until four or five years before she died.
Rev. Keith Haney:What do you think is the most common misconception when it comes to Alzheimer's?
Sarah Vosburgh:I think that it.
I. I think the understanding of the slow progression of the disease and for how long it goes on and how much you lose of someone in tiny, tiny little bits and pieces is hard to fathom unless you're in the middle of it or, in my case, afterwards, when you're looking back on it.
Rev. Keith Haney:As a caregiver who has a parent who's maybe dealing with it or a spouse that's dealing with it. What words of wisdom did you learn from your experience?
Sarah Vosburgh:Part of my reason for publishing this memoir has been about wanting other people to understand that they're, A, not alone, and B, that much like parenting, which is an amateur business, this is an amateur business also. And you make the best decisions that you can at the time with the information that you have, hoping to do the best by your loved one.
So you're not alone, and you need to trust yourself to make the best decisions you can.
Rev. Keith Haney:So tell us about the title of your book and tell us a little bit about the background behind why you wrote it.
Sarah Vosburgh:So I never intended to write a book. We used to joke about it. I had friends who were English majors and all of that back in the day, and it was never something I was going to do.
And then I went through all of this, and my mom died, and I found that stories about her were kind of knocking on my brain in a hurry to get out. And they would wake me in the middle of the night, and I would. I'd be searching around for scratch paper and so on.
And at that point, my husband had the brilliant idea to get me a piece of glass to sit on the top of my night table. And he did that and handed me a Sharpie and said, keep this by the bed.
When stories wake you up in the middle of night, write down what you need to write down, and then you'll have it in the morning. And that is what I did. And I would take a picture of it with my phone or whatever before I wiped it off for the next night.
But the stories kept coming. And during that time, we moved from the east coast to the west coast, and they just kept coming and coming and coming.
So I decided to go to a writing class to see what that was all about and to meet new people because I had was just here. And so I went to San Diego Writers Inc. Which is kind of cool. And, and there I, you know, I did a couple of one off classes and stuff like that.
And then there was a woman, two women, Tracy and Marnie, who were doing a workshop on memoir writing. And I said, well, you know, a lot of what I've been doing is kind of memoir esque. And so let me see what that's all about.
And I went to a short couple of sessions and then took a longer year long course with them on memoir writing. And we wrote, we, we responded to assignments five pages at a time to bring to class.
We would get an assignment on Saturday morning as we were leaving. We would bring it back the next Saturday, five pages because there wasn't enough time for everyone to read know tons of pages.
And I literally wrote it five pages at a time. Looked at the pile. I would print them out every week and they sit on the left hand corner of my desk. And I realized that there was a pretty big pile.
So I sat down on my living room floor one day and tried to sort it out and realized that it was somewhat chronological and that I could probably do something with it. And that was the beginning.
Rev. Keith Haney:I love it. It's an interesting name for your book. Who Will Name the Bees? Tell us why the title?
Sarah Vosburgh:Yeah, I'm hesitant to do that because it kind of ruins that story. Well, it doesn't ruin it.
But my mom talked about at one point, it was one of the very last times that the family together with my mom had any kind of lucid conversations.
And one of the things that she asked me about was the beehives that we were, we were just, we had just started beekeeping and she asked me about the beehives and asked me how I was going to name them all. So that is the, the short version. It's longer, but that's the short version.
Rev. Keith Haney:You have interesting chapters in your memoir. You have it by months. Tell us a little bit about the rationale for writing it the way you did it.
Sarah Vosburgh:Well, so it would have been kind of all over.
Like the stories that came out that I kept writing on my night table or the bits and pieces that I would write on my night table, they were all over the place and I realized that I needed to confine them a bit. So I decided to write about what was happening the months that my mother was in Memory care.
And so the book begins in October when I take her, and it ends in June when she dies. And it's. It's referred to in the trade as beads on a. Beads on a string, not bees. Beads on a string. And it. You're not supposed to do that. It's not.
It's not supposed to be cohesive for readers, but it was. It worked for me. And I said, what the heck?
So the first half of each, then I structured it a little differently because I had a lot of flashbacks stuff.
So I structured it so that the first half of every chapter was about what was happening with my mother in memory care, negotiating that whole situation and how. How it was for her and for me. And then the third.
The last third of each chapter is flashbacks to another point in time in my life with my mother that would have happened in that month or near that month. And in between each of those is a poem.
I consider the prose black and white, and I consider the poetry in between as color snapshots, because sometimes you can say a whole lot more with poetry than you can with prose.
Rev. Keith Haney:Yeah. And it hits people differently, too.
Sarah Vosburgh:It does indeed. Yes.
Rev. Keith Haney:Yeah.
So I'm just curious, as you think about the time you had with your mother, and I know people who've had dealt with Alzheimer's have said it's kind of like there's a daily feeling of grief because it's like daily goodbyes. How did you grieve someone who's physically present but slowly disappearing?
Sarah Vosburgh:I didn't. It wasn't denial. It was, I have to put this aside. I have to suspend this or I cannot make. I cannot watch this or make decisions about my mother.
All my grieving and all my acceptance came afterwards.
Rev. Keith Haney:And how did you compartmentalize that? You had to somehow learn to. Cause I'm thinking, how do you feel?
Sarah Vosburgh:I honestly don't know. There were times that things were just so.
So awful that I would come home and I would cry and I would call my bestie on the way home, and we would talk and I would cry, and then I'd get home and husband would give me a big, long hug and I would cry.
But those were few and far between because if I allowed myself to really sink into what was happening, I. I really wouldn't have been able to deal with the things that I needed to deal with. So. And I think I, I. That's probably how I operate in general. I do. I do my. My stuff. I have delayed stress and delayed grief.
Rev. Keith Haney:I'm curious what kind of challenges you face in the healthcare system with your mom's Alzheimer's, you talked about how you navigated the, you know, the labyrinth of the healthcare services with appointments and how did that all. How did you navigate all that? And because I'm sure this is difficult in this day and time.
Sarah Vosburgh:So it was, it was very difficult because first of all, she was. She only fell apart in pieces like they all do, and no one saw what I was seeing and they didn't have concerns about her.
So we went to town social work, and we asked for help from them. We asked for help from people at church who recognized her foibles but were like, it's not that bad, it's okay, it's not that bad.
We looked for help from motor vehicles, but she would have had to gone in for a test and she, she wasn't going to do that. And I went to her doctor and said, we happened to go to the same primary care physician. And I said, look, this is what's going on with my mother.
It's significant. Help me out. What can I do? Where do I go? How can I get her in for an appointment? What can you do?
And she basically told me that there was nothing that she could do and that I needed to have more grace for my mother and just accept her foibles. And I said, look, she's driving left on the road. We do not live in the uk. This is not okay.
She's going to hurt someone or herself or both, and that's not okay.
And, you know, her suggestion was, again, take her to motor vehicles, which my mother was not going to do because she saw her keys in her car as freedom and autonomy. She would say, no one's going to take away my keys. There will be no one that will take away my keys.
And she said that so many times when we encouraged her not to drive. And many of us, her friends and me and so on, offered to drive her places that we were going together.
And she became more and more willing to accept a ride with someone because it gave her more time to socialize with them. Right? You like going together rather than alone in your cars. And it was a long time of her saying, no one's going to take away my keys.
And my husband, who's, you know, just that step enough away, realized that she literally meant at that time, and now we're talking about those minuscule little pieces of someone that you lose, she literally meant, no one's going to take away my keys. Because the keys to her represented the freedom she didn't think as far as the car was concerned.
And I'm not sure that she had the executive function skills, the planning skills to get from. I have my keys in my hand now.
I need to go out the door, I need to get in the car, I need to open it, I need to put the keys in the ignition, and so on and so forth. So when all was said and done, we never took her keys from her. We took the battery out of the car.
My husband put a note in the battery cavity that said, if this. If. If you happen to be helping out with this car, this is the mechanic that takes care of it.
And the owner has Alzheimer's, so if you would please contact the mechanic. And that's how it went from there. But that's an example of those really little sort of nebulous things that you may not. When.
When you're right in the thick of it that you may not notice it. Keys to me meant her car and going places on her own. Keys to her meant that she had freedom, and only my husband recognized that.
Rev. Keith Haney:Wow. What do you wish people understood about the hidden burdens that you and people like yourself face with people with Alzheimer's?
Sarah Vosburgh:Well, it's that letting go in bits and pieces, and it's also the time I was a sandwich generation when this was happening. I had children to raise, young children to raise, and. I was sandwiched in between them and her and her needs.
And her husband was, as it got, more progressive. He was not particularly responsive, and I'm going to presume good intent, But I don't know whether he just couldn't deal or he didn't want to deal.
I'm not really sure what that was all about, but I kind of did a takeover thing of those kinds of things for her. But one of the things that I had to face was that at the very least, if not abused, my mother was being neglected.
He expected her to be what she was when he married her, and she wasn't. And so he kind of ignored her or ignored her needs. And again, I don't know whether that's out of a lack of understanding, whether it was.
Well, I don't think. I don't think it was intentional abuse. But the upshot was that my mother's needs were neglected, and that was not okay.
And part of the reason that I stepped in. So those are some of the more subtle problems as you go through that you might not expect.
Rev. Keith Haney:Sure.
Sarah Vosburgh:And then just her eating and her taking her meds and those simple dressings, you know, she Would put on two. Two blouses and her bra over top of it, or, you know, something along those lines. Or she wouldn't remember how to eat a sandwich.
And she would take it apart and cut it, cut the pieces with a knife and fork. And then when she went into memory care, they. First of all, when I took her into memory care, and this is when the abuse thing came up.
And that was a look back to opening my eyes and saying, oh, wow. So there's a lot of stuff I think you don't recognize when it's happening, but you look back on it and it is.
But she had the interview for memory care, and they interviewed all their prospective residents.
She had the interview for memory care, and they held it at a restaurant because she wouldn't go to the memory care center because that was for old people who were, you know, who. Who were out in space. She would say, that's for old people out in space. And she was not an old person out in space.
So they met her, her and her husband at a restaurant. And he talks with his hands, and he did. And every time he raised his hands to gesticulate, my mother cowered.
And they called me right after the afternoon after the luncheon and said, we know that we had a month, a date two months out from now for your mom to come into residence here, but we're going to move her up and we'd like to see her in two weeks. We're afraid her husband is abusing her. And that was the first time that had crossed my mind.
Had she had black eyes and bruised shins and that kind of thing before that? Yes. Did I accept her answers or her not willing to give answers? Yes. Because I didn't know what else.
It didn't occur to me to think that that was going on.
And again, it could still very much have been, you know, she tripped, she fell, she hurt herself because she wasn't being attended to, but not because somebody sucked her in the eye.
Rev. Keith Haney:So this podcast is called Building Bridges. What bridges do you hope your story helps build for caregivers and families?
Sarah Vosburgh:I hope that caregivers reach out to a support system, whether that be from social work is much better at this now than they were in the, like, town social workers and stuff. City services and things like that are much better. Elder care, support groups, that kind of thing.
Find places for support to build yourself a bridge, whether it's between you and someone who's already been there or someone who, like with my bestie. My bestie has known me since I was 6 years old.
We went to school together, and she knew my mother and she knew my grandmother, and she saw all the same progressions that I did. She was close to my family.
So, you know, building a bridge with someone like that who has some understanding and knows your history and your background is very helpful, and then finding someone in the medical community who can support you. I did get that in the end, and it was done in a very lovely and gentle way and very much appreciated, but I didn't. I just did it.
I'm an only child, and it's been my thing to do things on my own and independently for probably forever. And I did not reach out as much as I could. And there are places to reach out, local Alzheimer's chapters, all of those kinds of things.
And if it's not that you want to be buried in the disease, if you will not, you know, thinking about it all the time, then join your local book club and just have people to talk to in a place where you don't have to think about it for a few minutes. If you're one of those people who processes while it's happening and not like me, who processed afterwards.
Rev. Keith Haney:Yeah. Speaking of that, if you look back at that experience, what's one emotion that surprised you the most?
Sarah Vosburgh:Unconditional love. Both ways. I didn't realize that my love for my mother was so big. And I definitely didn't realize that her love for me was so big.
Rev. Keith Haney:Wow, that's neat. As you think back to that, what's one moment that makes you smile?
Sarah Vosburgh:The bees. The bees make me smile. When she commented about the bees. And she had all these funny little things that like, Queen.
Queen Elizabeth visited the United States. And for some reason she was remembering that it was not current to. Whenever she was remembering it, but she would say things like.
And this is the humor in the blackness of it, if you will. So everything's so dark and it's consuming you and you're losing her and she's not there.
And she'd say something like, I wonder how the queen packs all of her clothing for her visit here to the United States. Her hats make. Must take up so much room. Like, why would the queen ever have to worry about how many. How many bags she took or whatever.
But it was just sort of that literal back to the keys and the bees. It was sort of that literal place where. Yeah. And then she would confabulate things.
She always fed the birds and the critters around her house, and she would confabulate stories. You Know, kind of Snow White esque about, you know, the. The animals gathering in her backyard and having a party or whatever.
And she was very into it, and it was sweet. It was sweet and innocent and not connected to reality at all. Except that she did have plenty of flora and fauna in her backyard.
Rev. Keith Haney:Yeah. What's something you wish caregivers need permission to do?
Sarah Vosburgh:Trust their gut. Trust yourself. Trust yourself to make decisions. Trust the people that you surround yourself with.
That said, I know that people who come from larger families have a harder time with some of this because siblings don't necessarily agree about what should happen. But find someone that you do trust that you can bounce things off of. Therapy's not a bad choice in that situation either.
It helps a lot to be able to talk through those things.
Rev. Keith Haney:What's one thing you wish you'd known from the beginning of this journey?
Sarah Vosburgh:I guess that it really was going to happen and there wasn't anything I could do about it. That it wasn't my. This wasn't my responsibility. I didn't make this happen.
And that, yeah, I needed to do what was right by her, protect her dignity and so on. And that was the best I was going to get out of the really awful days toward the end.
Rev. Keith Haney:Wow, that's a lot. I love to ask my guests this question, too, as we kind of wrap this up, is what do you want your legacy to be?
Sarah Vosburgh:That people don't feel alone in this process, that they know that someone else has been through it, that there are places to reach out.
If you go to my website, I have places for people to reach out relative to all of the issues surrounding my mother's story and that they'll go through it differently, but they're still not alone. We've. We've been there, and it's only going to get worse. If this is a situation you're in, your.
Your loved one is going to slip away bits and pieces at a time. But you make the best out of. Of each little minute that you have of cognizance or lucidity.
And you know that you're not alone and that you're doing the best you can with what you have.
Rev. Keith Haney:Where can people find. You mentioned your website. Where can people best find your website and find your books?
Sarah Vosburgh:I'm@SarahVosberg.com. Do you need me to spell that?
Rev. Keith Haney:Sure.
Sarah Vosburgh:S A R A H, V O S B U R G H. And you can get books on the website. I have a Facebook page, Sarah Vosberg, Instagram page, Sarah Bosberg. And you can buy books at, on Amazon or off the website beginning on April 22.
There's an an audio version that is nar narrated by my daughters and me and there's an ebook version and a paperback.
Rev. Keith Haney:Wow. Congratulations on that.
Sarah Vosburgh:Thank you very much.
Rev. Keith Haney:So we have something new this season. We asked a surprise question. Pick a number between 1 and 10 for your surprise question.
Sarah Vosburgh:7.
Rev. Keith Haney:Would you rather have unlimited sushi for life or unlimited tacos for life?
Sarah Vosburgh:That's a tough one. I'm gonna go with unlimited tacos.
Rev. Keith Haney:Okay.
Sarah Vosburgh:I'm in San Diego. The tacos are good here.
Rev. Keith Haney:So are the sushi.
Sarah Vosburgh:I bet it is. Indeed. It is indeed. And I do like them both. So hard decision.
Rev. Keith Haney:There you go. Well, Sarah, thank you so much for your courage, your honesty, and your willingness to turn pain into connection.
Your story reminds us that caregiving is not just a task, it's an act of love, even when it breaks our hearts. To our listeners, if this episode resonates with you, don't carry it alone. Share it with someone walking in a similar road.
Reach out to a caregiver, you know, advocate for better support systems. And remember, building bridges begins with listening deeply and loving bravely. Be sure to subscribe to coming Bridge Builders podcast.
Leave us a review and join us as we continue to amplify stories that help us understand what truly makes us human. I am your host, Reverend Dr. Keith Haney. Sarah, thanks so much for being an incredible guest on the podcast today.
Sarah Vosburgh:You've been a most gracious host and I thank you for your time. And I thank you for your listeners for their time. Also.
Rev. Keith Haney:Thank you.
