Hope for living, loving and caring with no regrets!
Rayna Neises, your host, speaks with Carolyn Birrell. Carolyn worked for the American Cancer Society at their National Headquarters and then as a real estate agent before retiring to Idaho. Soon after her move across the county, Carolyn made the difficult decision to relocate her aging mother, Fay, to be near her. She then spent the next eight years caring for Fay while she journeyed with dementia. Carolyn’s documentation of their time together led to her book, “Walking with Fay”. She describes it as the book she was searching for but could not find during her time as a caregiver. She provides the following insights:
- (5:14) Typically, caregiving for a parent falls on one child’s shoulders.
- (7:00) When caring for a person with dementia, it is at times necessary to just answer their questions in a way you think is going to make them happy.
- (8:00) Deciding when the time is right to take over your loved one’s care can be difficult.
- (14:00) The pages of her book came from email interactions she had with friends describing the situations she experienced while caring for her mother.
- (16:27) The book is unique in that Carolyn admitted her mistakes and her feelings for the average reader to benefit from.
- (17:07) Contact Carolyn at her website carolynbirrell.com and order her book there or anywhere you can buy books online.
- (17:42) Please leave reviews online as they are very important for the algorithms used by the sites as well as enabling others to find the book.
- (18:07) This conversation has been brought to you by the Encouragement Series created just for you to encourage, inspire, and offer you hope in this season of life. By joining, you can learn some new tips and tricks to help you take care of yourself. Enroll today at EncouragementSeries.com.
*Transcript is an actual recount of the live conversation
So I kind of just did what I think a lot of people do, which was, tuck it away and hope for the best, hope it would resolve itself. That was kind of how the years went by with my mom for a little while before I really needed to make a decision to get involved in her life.
Welcome to A Season of Caring Podcast, where there’s hope for living, loving and caring, with no regrets. This is Rena. Nice as your host. And today we have special guest Carolyn, Birrell. Carolyn retired to Bonners Ferry, Idaho after spending 20 years in Atlanta, Georgia, where she worked for the American Cancer Society National Headquarters, and then as a real estate agent. Soon after her move, she relocated her aging mother to be near her and spent the next eight years caring for her while learning all things dementia. She began writing initially to help her make sense of her mother’s Early Stage Dementia and the terrifying behaviors that came with it. It didn’t take her long to realize she’d been writing the very book she’d been searching for. The one that not only tells one woman’s story of traveling down her mother’s path into dementia from its beginning to its inevitable end, but also helps others who are struggling to keep pace with their own loved one and desperately needing help. Walking with Faye can be found at www.carolynbureau.com and on Amazon and anywhere you buy books .These days, you can find Carolyn pulling weeds, plucking strings on her ukulele or paddle boarding. Welcome. Thanks so much for joining us today, Carolyn.
Oh, it’s a pleasure to be here. Rayna.
Oh, sounds like a hard journey with mom and we as caregivers like to be able to connect with stories. So tell us a little bit about your mom and a little bit about your journey.
My mom was salt the earth. She was the, the caregiver of the family. She raised three kids. We were taught about the work ethic and honesty and just, you know, being a good person. She was there for Easter egg hunts and Valentine’s Day cards and all of the Christmas decorations. She was somebody that, you know, every kid, every kid should have as a mom My dad was a plumber and he, you know, raised a family of five. So we were just a working class, middle America family. What started happening for me was that my mother started exhibiting signs of, of dementia when I received a phone call from the sheriff one morning in Idaho. It was really early. It was dark out and my phone rang and he had called me to tell me that a number of people had called into the sheriff’s office complaining about my mother’s driving. She was driving on the wrong side of the road. She was cutting people off, and he wanted to know if there was something I could do about it. You know, blinking my eyes into the dark, trying to figure out, how I was gonna respond to this. I was 3000 miles away. How was I going to solve this problem for him? I promised him that I would talk to her about it, which I absolutely did not do. Later that morning because you know, telling my mother that people had been calling the sheriff about her and complaining about her driving, and these are people she knew, her neighbors right, her congregation, that was not gonna go over well. So I kind of just did what I think a lot of people do, which was, tuck it away and hope for the best, hope it would resolve itself. That was kind of how the years went by with my mom for a little while before I really needed to make a decision to get involved in her life.
That sounds really challenging and where she was, sounds like it was pretty safe overall, so it wasn’t like she was driving in the middle of a city that you were worried about her care. But I think it is such a hard discussion with driving. We were really blessed with my mom. She, My dad took early retirement and he just kind of naturally took over the driving because he was the one that drove when the two of them were together. But when my dad needed to stop driving, that was so hard. We were so worried about how that was gonna go and we ended up hiring a caregiver to take him places, and we still thought, Oh, he’s not gonna like that very much, but he really handled it pretty well. How did your mom eventually handle giving up driving?
For my mom, what I did was I told her that I had to put her car in the shop and it was in the shop because she must have bumped into something and she was insistent that she hadn’t done any, anything wrong to the car, but she always conceded that, Okay, well, we’ll just let them take a look at it. And I got that idea from my local Alzheimer’s Association group because she was repeatedly asking for her car and telling people that her daughter had stolen her car from her. So I, I was at a loss, I what to do and I knew I couldn’t let her back in that, that driver’s.
Hmm. It’s such a challenging piece of that, and so many people don’t think about it, and like you said, just don’t know what to do. I love that you found the support that you needed to have those conversations. So it sounds like you mentioned you have siblings and it sounds like a lot of the decisions were falling on your shoulders, and so she was taking that out on you. What was going on with the rest of the family?
I had that sibling experience that I, I learned about later from reading about um, dementia and caregiving families, and that typically caregiving for a parent falls on one child’s shoulders. It’s hard to predict which child that’s going to be. It isn’t always the youngest or oldest or middle. But it typically does fall on one child. And for me it was, it was mine, my shoulders that it fell on. And I think learning about that helped me a little bit with my sense of disappointment and sometimes anger at my brother and sister. I wasn’t so mad that. They weren’t helping me because sometimes it felt easier that they weren’t, they weren’t getting involved. They were giving me autonomy over a lot of the decisions that we made, that I made. But what I was mostly disappointed in was their dwindling phone calls. Their lack of interaction with my mom. Frankly, they were scared to death. My mother was terrifying in the early stages of dementia. She fired off questions left and right, and we were raised not to lie, we didn’t lie to our parents. So this whole therapeutic fibbing that you read about and, and distraction that we’ve learned about. That is a hard task and task to master. So my fa my brother and sister could get very tongue tied quickly when mom would fire off a question, Adam, you know, where’s my house? What are you doing? When are you coming to get me? Who’s watching my blueberry bushes? Who’s paying my bills? Who’s feeding my cat? You know that she would fire these off and they were scared to death, and I would reassure them, just answer any way you want because she’s not going to remember tomorrow. Just answer it any way you think it’s going to make her happy, And they never quite grasp that.
I think it can be so tough for our long distance caregivers to know how to support, and like you said, they’re not living in it all the time, so it’s difficult for them to realize the repercussions of their answers or like you said, even just that tomorrow it won’t matter. And so it’s hard to wrap their mind around why this is beneficial. Why do I need to do this? This isn’t way we are raised. This isn’t the right thing. As far as the expectation with a healthy brain. I think so many times we don’t realize how much damage is in the brain, and so it can be really difficult to navigate that. So as you were seeing concerns, you stepped in and what, Was there something specific that prompted you to kind of step in and help with her care? Or how did you decide? Now’s the time.
It was years for me to decide that it was time to step in. As you can imagine, you’ve been through this with your father and your mother to, to insert yourself in somebody’s life and basically take away their independence is a huge move, especially when they can tell you no. So, For me to decide that it was time for my mother to fall under my care took many years of me hoping for the best, hoping that she wouldn’t make that next mistake that was larger than this last one, but the sheriff’s phone call that morning. And a follow up phone call a couple of months later from the Department of Health and Human Services came from my mother’s town because she had fallen and they had taken her to the hospital. And once they stabilized her, she couldn’t give them a name of a friend or a family member to come get her. So they assigned her Mrs. Bream and Mrs. Bream carted her home and saw the conditions she was living in and was very upset. She found my number on the refrigerator and called me and in no uncertain terms told me that if I didn’t do something about my mother’s living conditions, that the state would step in. Now, understand, I had just been there eight months ago. I went every year and yes, I noticed my mother’s reduced housekeeping abilities and her lack of cleanliness, but again, none of it was at a state that I felt I could move in and take over. In fact, when I did try to clean her kitchen for her, when I visited, I was promptly removed from the kitchen, you know, by a stern voice saying, Leave my things alone. I don’t need you to touch anything in my house. I can do this myself. So when your mother’s telling you that, you listen.
Mm-hmm. And you don’t have any way of knowing how long it’s gone on or where it is today until you get that difficult phone call. So I’m sure that was really hard because I imagine Mrs. Bream wasn’t too kind in that conversation.
She wasn’t she, She came right out and said, What kind of a daughter would let her mother live in these conditions? Did you know that your mother is making a hole in the bottom of a chicken stock? Can and I, I was appalled, you know, mortified that this would happen or could have happened and I was embarrassed that I was, I was that daughter that she saw through her eyes.
That’s really hard. So hurtful too, cuz that’s not never in your intention, but that relationship is so difficult, especially in that authoritative relationship, which I grew up in that same type of setting, so it can be difficult. When we were first struggling with my mom as a teenager, I took the brunt of a lot of that because I didn’t talk back. And so when you tell me, You don’t know where I was, or I didn’t tell you what I was doing, and I knew I did. I often felt crazy because I’m like, I did tell her. Right. You know? And so it can be so hard, and I think in the same side, they can be more defensive and more aggressive because they’re scared. They realize things aren’t right, but they don’t know what’s wrong either. So it can be such a tricky thing. There’s so much isolation in caregiving and it’s really between our two shoulders. You know, we’re the ones who are, are having that self talk that we’re condemning ourselves, we’re ashamed of the feelings that we have or the thoughts that we have. So I do think it makes such an impact to realize you’re not the only one, You’re not the only one that’s experiencing those feelings and those thoughts. So I know I mentioned in your bio that you were just kind of a journaler, a writing down your experiences throughout. So tell us about why you wrote the book and what’s in there?.
Yeah. What happened was when I moved my mother out west to be with me. I got indoctrinated by fire. It seemed like everything fell apart as soon as I got her there. Nothing went as planned. She immediately started acting out. She was very upset with me for removing her from her home. She was suspicious that I had ulterior motives that I was now, I was stopping her mail from arriving, and now I had canceled her bank account and who was paying her bills and who was watching her house and all of the things. And she directed all that energy toward me. So as she fired tennis balls at my head, I was batting them back as fast as I could. And each time I did, I, I made terrible mistakes. I tried to rationalize with her. I tried to tell her that no, she was wrong. That what she imagined was happening wasn’t happening. And what ended up coming about from that was I became this conniving, suspicious daughter that she couldn’t trust and now she was in this house that was foreign to her because I had moved her there. And she was losing all of her independence because I had taken it from her and each time I tried to interact with her, we just had, terrible, terrible fights, terrible interrogations from her and it just wasn’t going smoothly at all. So I started looking for books. I went to the library on a regular basis and the librarian there would often have something pulled aside for me and say, Let’s try this one. What about this book? And I would literally sit there and read through that book before I left because I knew I wouldn’t have time to do it on my own. And each time I did nothing quite hit the mark. I read The 36 hour Day. That was out at the time. This was 2012. You know, in 2012 there weren’t a lot of books out there. 36 Hour Day came the closest to helping me. But even they had so many examples of people who, with dementia, that was further along and my mother was still pretty darn lucid. You know, she could talk a good game. She could walk anywhere she wanted. She could say no whenever she wanted to, and I just didn’t have ready answers to these things she was firing at me. So, I started writing to friends and saying, Oh, you’re not gonna believe you know what my mother did today. My mother said this to me today. Can you believe that? And we would have these email interactions. And after not too long, I’d say about a year, I was going through my emails and I thought, I have the pages of the book that I’ve been looking for. These are the stories. These are the man on the street, everyday scenarios from people. You have to get up and go to work that morning, or you have to care for somebody else, or, go grocery shopping and do your own chores and here’s your loved one. Taking a large majority of your time and being very difficult at the same time. Those were the stories that I had been searching for, and now I had a nice collection of them. What I started doing was adding to them. This time I was thinking about the chapters of a book. This time I was adding more details, so months could go by where I wouldn’t change anything because I didn’t have any stories, you know, any Fay stories to add. And then sometimes I would be writing every day. Near the end, I knew that what I would be doing was kind of waiting for the final chapter. And I was able to do that, and then I went back through the whole book all over again and started creating a bonafide manuscript.
You mentioned your book kind of walks from the very beginning all the way to the really the end. What else would you say makes yours unique and what would they find really beneficial in it?
What I’m finding now from the feedback from people who have read my book, I, I get messages on email now from my website where I have a contact button, they can click and sometimes I’ll wake up in the morning and I’ll get a message from someone who says, You know, I can’t believe you admitted that you made this mistake or that mistake, and it’s something I never would’ve admitted to anyone. And now I feel so much more normal. Because of it. Thank you for being transparent. I’ve been asked more than once how difficult it must have been for me to admit feelings that I had had during times that my mother was lashing out at me. And I, I always said back, Well, the book wouldn’t help anyone if I wasn’t honest. So I made sure that I put it all down there, the ugly you know,. I think that’s what makes my book unique, not just the average person’s dilemma when called upon suddenly to care for a loved one, but also admitting my mistakes and admitting the feelings that I had. I mean, there were times I had the devil and the angel on my shoulder, you know, talking back and forth to each other, rapid succession. I think that that’s what Makes my book something that the average person could really benefit from reading.
So that’s powerful. So tell our audience where they can get in touch with you and again, remind them about where they can pick up the book.
I have a website. It’s www.carolynbirrell.com and my book is available anywhere you buy books online. You can even go to your library and request it if they don’t have it, they’ll order it for you. It’s called Walking With Faye. Just type that in the Google search bar on your computer and you can find it listed pretty much anywhere. Barnes and Noble Walmart.com. Target, Amazon of course, and be sure to leave a review after you’ve read it. That’s always important. It’s, it’s what keeps me up at the top of the algorithm when you search for a book on dementia.
Yeah, definitely. People don’t realize how important those reviews are. Just a couple of sentences can make all the difference, not only in the algorithm piece, but also in other people seeing what your book’s about and that review just helps them to know that connection and see what they found that was a little different and unusual. So thank you so much for joining us today, Carolyn. It’s been great to be able to hear a little about your mom and your story
It was my pleasure. Thank you for having me on your show.
This conversation with Carolyn has been brought to you by the Encouragement Series. The Encouragement series was created just for you to encourage, inspire, and offer you hope in this season of life. I feel like this season is hard. There are a lot of things going on right now for everyone, and as a family caregiver, even more is on your plate. So I would love to offer you an opportunity to take some bite size lessons on how to improve your overall wellbeing. By joining us for the Encouragement Series. You can learn some new tips and tricks to help you take care of. So join us. Enrollment is open today at www.Encouragementseries.com. Just a reminder, A Season of Caring Podcast has been created for the encouragement of family caregivers. If you have financial, medical, or legal questions, be sure to consult your local professionals, and take heart in your season of caring.
This Episode was Sponsored by:
Carolyn Birrell retired to Bonners Ferry, ID, after having spent 20 years in Atlanta, GA, where she worked for the American Cancer Society National Headquarters and then as a real estate agent. Soon after her move, she relocated her aging mother to be near her and spent the next eight years caring for her while learning “all things dementia.”
She began writing initially to help her make sense of her mother’s early-stage dementia and the terrifying behaviors that came with it. It didn’t take her long to realize she’d been writing the very book she’d been searching for – the one that not only tells one woman’s story of traveling down her mother’s path into dementia from its beginning to its inevitable end, but also helps others who are struggling to keep pace with their own loved one and desperately needing help.
These days you can usually find her pulling weeds, plucking strings on her ukulele, or on her paddleboard. “Walking with Fay” can be found at www.carolynbirrell.com, on Amazon, or anywhere you buy books.
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Meet Your Host
Rayna Neises, ACC
Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected