A Candid Conversation: How Mom's Dementia Hurt My Relationship with My Sister

Picture this: your vibrant, independent mother gets lost on a familiar route home, and you're hit with the gut-wrenching realization that Alzheimer's has silently crept into your family. Join Darleen and her dear friend, Valerie, as they candidly share their experiences of navigating this unforgiving terrain. Listen as they recount the difficult decisions they had to make, the emotional toll it took, and the strain it put on their relationships with their siblings. This episode is a window into their journey, a look at the challenges they faced, and an intimate conversation about caring for a parent with Alzheimer's.

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SPEAKER_00 0:01

Senior LivingGuide.com Podcast discusses topics which are relevant to the everyday lives of seniors and their caregivers. We are joined by experts who share their knowledge on a variety of issues. Senior LivingGuide.com Podcast offers solutions and resources to create the best quality of life as we age. And now, let's welcome your host, Darlene Mahoney.

SPEAKER_05 0:27

Thank you for joining us on this episode of Senior Living Guide.com Podcast. Our podcast can be listened to and followed most anywhere you enjoy music or podcasts, such as Spotify, Apple Podcasts, Google Podcast, and even Alexa, and many more. And please don't keep our podcast all to yourself. Share with a senior or caregiver who you think will benefit from the support that we provide. I am your host, Darlene Mahoney. And I am excited to share the news that Senior Living Guide.com provides a one-stop shop to finding senior housing, including independent and active seniors, a new home while providing an excellent resource to assist in living, skilled nursing, memory care, or even home health and caregiving services solutions. And one easy to navigate website. So visit seniorlivingguide.com today. And I would also like to thank our podcast sponsors, Parish Healthcare and Parish Medical Center. At Parish, they offer the Parish Senior Consultation Center and Parish Senior Solutions, where each patient's evaluation and follow-up care will be personalized to meet the needs of the individual and their families.

SPEAKER_02 1:46

At Parish Healthcare, we believe in our community. We believe in keeping our community safe. We believe in the art of healing. We believe in healing patients, healing families, healing communities. We believe in the best and brightest working together for the common good. At Parish Healthcare, our team focuses on you as an individual because every life is a work of art to us. Parish Healthcare, where the art of healing comes to life. Visit Parish Healthcare.com/slash healthaware for a free health risk assessment.

SPEAKER_05 2:16

Today is going to be a little bit of a different podcast than what we typically have. I have invited a friend of mine. Her name is Valerie, and we have been friends for quite a while. She and I get together and we do a lot of really fun things together, but we also engage in really like deep conversation because since I've met her, she's begun a journey with her parent that was diagnosed with Alzheimer's. My dad had dementia and it was quite the roller coaster. If anyone's listened to the podcast, My Dad's Dementia, it tells a little bit of the personal story that I shared quite a few years ago with Dr. Trinetti and Janet Rooks about my personal journey. And I've shared a lot of that with my friend Valerie as she is experiencing that. She's just begun somewhat of that journey. I've been able to share with her avoiding the pitfalls and some of the signs and some of the things, along with the fact that I've learned so much just doing this podcast and listening to a lot of the expert panelists and a lot of the things that I've really learned to be able to share with her. And I know she's um been able to listen to some of the podcasts here and been able to utilize them. But I did want to invite Valerie to the podcast. Thank you for joining us today, Valerie.

SPEAKER_06 3:36

Thank you so much. It's exciting to be here. I've listened to so many online. So um it's wonderful to be a part of one. I've learned a lot from just listening to you and your guests as well. So thank you.

SPEAKER_05 3:48

Yeah, no, thank you. One of the conversations that we've just recently had is one I haven't talked about so much either, because this is super, super personal, but you just started experiencing in your journey taking care of your parent is what can happen and what some people don't realize can happen and can be very, very detrimental is the strain that it can put on siblings. In my case, I know that I shared with you that it completely was the catalyst. My sister and I probably didn't have the greatest relationship anyway. We always had somewhat of a bumpy relationship, but I haven't spoken to my sister since the day that my dad passed away. And she did not come to my dad's funeral because of the crazy town that was occurring when my dad had dementia. But my sister lived in a different state. So you started experiencing some changes yourself. So tell us a little bit about the stressors of that.

SPEAKER_06 4:52

Sure. For me, uh, I've always been really close to my sister. She's younger, much younger. Um, I mean, I can remember the day that she was born and all the memories that we've shared growing up. I've always been incredibly protective of her, but we've been very close all these years, and it was totally unexpected. The conflict that we had, I wasn't sure how to navigate it. And at the same time, I was trying to make decisions for our mom, and I wanted to include her. She and I had always worked as a team. We had realized mom was having memory problems. I think the day that we realized something wasn't quite right was she was driving back from an appointment and got lost on the road, and she was just driving around the city for hours and didn't know how to get back home. She was an independent living community at that time, and you know, she had a cell phone with her. She could have pulled over, she could have called someone. And, you know, my friends were saying this to me, like, hey, well, why didn't you do this? Why didn't you do that? And I'm like, well, that's the problem. She couldn't figure out how to problem solve her way out of that situation. And that's my greatest concern. And at that point, my dad had been having a lot of health issues at the time as well. So we'd really been focused more on him. But that was the day that I was like, oh my goodness, we need to figure out what's happening with mom. So for about in a year and a half, it was, you know, trying to make sure she had the right level of care. She lives a couple hours away from me in the city where my sister lives. So we were working as a team. I was handling what I could remotely, you know, managing her finances because she no longer could. You know, she was more the on-site support, you know, feet on the ground. And so we really worked hand in hand, I felt, up until the time when it was time to find another place for mom to live because where she was just wasn't working, and then she also could no longer afford it. So we knew we had to find a solution. And so it was trying to figure out what's the right next step. You know, emotions are high. We both love her, we both want what's best for her. We just had different ideas about that, and it really did in a time when I felt like, oh my goodness, this is when I would hope we could be supporting one another, we were very much at odds. And so it made things, you know, challenging for me. And and it was an very emotional time for me, too. So right.

SPEAKER_05 7:27

I will say with my sister, what happens now in the year of 2023, people take to text messaging. And text messaging can get very long because people do those voice-to-texts, and they can get very confrontational, and sometimes they may not even be meant to be confrontational, but it's how it's perceived in the moment. If I get a really long text, I'll be honest with you, I probably don't read the whole thing. I read to the point where I'm now ticked because it comes across as confrontational, and then I don't read the rest. So you have two people that are not speaking to each other, they're angry texting back and forth, and then all it is doing is escalating the problem. I think that that is how we are now trying to resolve issues in general, not just in this particular situation. And it doesn't resolve, it never resolves. If someone wants to email me and say, This is how I resolved a problem, please do, because there's nobody that has resolved a problem through angry text messages back and forth. It's not gonna work. But some people, that's what they want to do because they really don't want to have either a face-to-face conversation or because they feel like they can get everything out that they want to say without being interrupted or without having a conversation or without having to defend it per se. Did you kind of feel that or did you experience that as well?

SPEAKER_06 8:54

I did. And you know, I'm smiling as you're as you're speaking, because yeah, it's bringing back a lot a lot of memories of how we were communicating differently. I respect that everybody is comfortable communicating in different ways. For me, and I'm a pretty direct communicator, I prefer face-to-face, especially if there's conflict or disagreement or confusion, just because I want to look someone in the eyes. I want them to see that I'm speaking from my heart. I, you know, the the tone and context gets lost in text or email. So it can definitely be more challenging to communicate in those ways versus face-to-face or a phone call or a Zoom, even if you can't be together in the same room. So it's hard to know, I think, completely where someone's coming from when you're just reading words on a screen. I agree with you for sure. That can add another l layer of complexity. And that's exactly what happened in our case. We ended up for a time there just limiting our communication to only talking about mom and nothing else.

SPEAKER_05 9:58

I will say that's where probably my downfall was. I was so emotionally driven by what was going on with my dad that I did not want to speak to my sister. It was a level I couldn't handle because I was trying to handle him and what was going on. So for me, the texting was just easier, but it was the wrong choice in retrospect. I probably should not have gone that route. I should have not done so much of the texting because it was probably very detrimental because there was so much miscommunication with her. And I know that there was. Even with some of the texting she wrote, I'm I don't even understand what half of her texts were, to be honest with you. I can remember reading them, going, I don't even know what she's talking about. And then I would respond to them. So it was a different level. Also, the other thing, you're trying to juggle all these different balls, um, trying to find different community and different levels of care for your mom. So that's so much work. People until they've actually started doing it really don't understand how tolling that can be on you emotionally. And then especially if there's the financial aspect of it. Um, senior housing can be very expensive. So trying to find something within your budget that's also gonna meet your parents' needs because we love our parents. We want to make sure that they're in a community that is going to take care of them, that's gonna provide them healthy meals, that's emotionally gonna support them, that's going to do all of the things that we can't do for them. And then you've got this other thing that's going back and forth and back and forth at you. And it can be very emotionally hurtful, especially when it's supposed to be someone that you think this person's supposed to be helping me and supporting me and uplifting me. And why aren't they? So it's like this dagger, at least for me, it was like this dagger in my heart that why why are you not my, you know, support? Why are you not the person that's like lifting me up and you know, saying, hey, what can I do to help you? What can I do to assist you? What can I do, you know, what do you need from me? And it wasn't there, it wasn't happening.

SPEAKER_06 12:10

That's true. And it was a decision that was really weighing on me. It's tough because you want to get it right. You know, you love your parents, you want what's best for them. My mom was in a really tough spot because she made a little too much money each month to qualify for assistance, but didn't have a enough money to have a lot of options, really. And the conflict between me and my sister was really about placement for her. You know, my sister really wanted to consider her moving in with her family. And I really felt like that wasn't a great solution for a lot of reasons. You know, one was that I knew the impact of having my mom live with my sister and her family would significantly change my sister's life and her family because I knew that, you know, mom's best day is today. She's in middle stages of Alzheimer's and in reading about it, researching online, listening to your podcast, Darlene, and your guests, and and just your personal stories that you shared with me about the progression. It really helped me understand that the longer my mom would live with my sister, the more of an impact it would have on my sister's day-to-day life. And I really didn't feel like mom could be in a place where she could be left alone at all. It worried me that she may wander, you know, turn on the stove and forget. And not that I don't trust my sister with my whole heart. I know that she would provide amazing care for her mother. Um, I have no doubt about that. I just knew that for mom, she needs consistency, routine is very comforting for her, and she needs to be in a calm, peaceful environment, really with peers, others her own age who, you know, she can socialize with. I felt like she's used to having her own space. I know that family dynamic can change if you're living in the household. When I grew up, we had my grandmother living with us so for a time. And so I knew that that can change the dynamic versus being able to go visit mom in her own space. You know, I wanted her to have her dignity and her independence as much as she could have. It was really rough because we were very much at odds about that, and we had some difficult conversations around it. Ultimately, it became very much like what you're talking about texting back and forth, emailing back and forth.

SPEAKER_05 14:39

And one of the things we've talked about is your mom also had problems leaving the house. And my dad was the same way. I realized putting him in a car caused him great stress and anxiety, which, unless you've experienced it, you don't really understand. And if you're not educating yourself on dementia and Alzheimer's and what that can look like and how to really manage someone that is in a progression of those diseases, you don't really understand what you're what you're really gonna be dealing with. So you took a different path and had a better outcome than I did. And that's why we're talking today, because I want to share that with our listeners, because we're all about solutions and resolutions. So we're gonna take a quick break for our podcast sponsors, Parish Healthcare and Parish Medical Center. And then we are gonna come back and we're gonna talk about your outcome because you have a smile on your face today that unfortunately I didn't end up with the same solution at the end of mine. But I definitely want to share what you've done. So we'll be right back.

SPEAKER_01 15:41

Hey mom, how's retirement home search coming?

SPEAKER_04 15:44

Oh my gosh, I'm just so stressed out. I don't even know where to begin.

SPEAKER_01 15:50

Well, why are you so stressed? What's the matter?

SPEAKER_04 15:52

I I just I I don't know where to find anything. I just need everything in like one place and know what all the options are.

SPEAKER_01 16:00

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SPEAKER_03 16:39

At Parish Healthcare, we believe every life is poetry in motion, motivated by strength and determination. As your bone, muscle, and joint health care partners, we believe in blending the art of healing with the science of medicine to keep your body in motion. We believe in healing patients, healing families, and healing communities. For a free orthopedic health assessment, visit Parish Healthcare.com forward slash orthoaware, Parish Healthcare, where the art of healing comes to life.

SPEAKER_05 17:08

All right, once again, we are back with Valerie as um we're just sharing and discussing our personal journeys with the relationships with our siblings and how it negatively affected some of the decision making that we had to do with our parents, who um my dad had dementia, he had vascular dementia, and Valerie's mom has Alzheimer's. My dad has since passed, and Valerie is still in that journey with her mom and with her sister. Valerie made some better decisions. You started not responding. You decided not to respond to some of like the long texts that were argumentative. You decided I'm not going to engage. Is that kind of one of the decisions you made?

SPEAKER_06 17:52

Yeah, I mean, it's not in my nature to respond to a lengthy text with another lengthy text, especially if it's a difficult conversation. And I do prefer, you know, face-to-face communication or at least via Zoom or a phone call, just so you can hear someone's tone. You know, I've just I've always felt like that leads to a better outcome. I think a lot gets lost in translation in a text or an email. So I tried to take the emotion out of my responses and uh use a lot of I statements and really focus on the facts about what was happening and at times share my research. And the reason that I felt a high responsibility is that my parents had already signed paperwork. I had their power of attorney, I'm their health care surrogate, and certainly my sister is on there as well. But by virtue of being the firstborn child, uh essentially, that duty, that responsibility fell to me, and I take that very seriously. I was really focused on making the best decision for my parents. And, you know, so my sister and I really didn't disagree. Like I said, uh up until that point when it was time to move my mom, you know, I really felt like we were working in sync. We were a team, and I felt good about decisions that we were making when we were in agreement. What I hoped for was that we would be in agreement about where to move mom. You know, I wanted my sister involved in touring facilities and checking places out. And but because we were so much in a d disagreement about what to do, um, I felt that weight on my shoulders to make the decision. So what I did for myself during that time is I really leaned on certainly you, darling, as a support for me and another friend that I have who um has been in a similar situation who had to make a decision about her dad. So you were my like reality check, my sounding board of here's what I'm thinking. What do you, you know, tell me your thoughts, please. You know, do you feel like this is the right decision? You know, so really identifying the the people in my life who could support me in lieu of having my sisters support, that was, I think, something that was just incredibly helpful to me and helped me move forward and helped me have confidence that even my decision-making process was sound.

SPEAKER_05 20:17

Yeah. If you don't have someone that you can talk to, I think it's really hard to navigate. And at the time, I personally really didn't. I mean, I was trying to talk to my college-age son. He was like my biggest support. He didn't know what the heck. He really didn't. And then I had a couple aunts that still didn't know either, and they weren't local, and they literally just probably were my sounding board where they were just listening to me like lose my mind versus really providing me any guidance at all. And I really had no one providing me any guidance at all on what my dad was going through on the dementia side. So I was literally winging it, but having that support, finding someone, and there's caregiving support groups. So going online, finding those support groups, it's so important just in general. But when you do start having these family issues and things like that, it can be a game changer. One of the things you did that I wasn't able to do or that I could have potentially done with even just putting my sister on speaker phone is that you really have done something that I think is important, included your sister on educating her as well on medical visits so that she understands while you're really engaged on the process of what happens in the reality of Alzheimer's and the care that your mom is going to need on down the road. You've included your sister in letting a doctor, a neurologist kind of explain it to her so it's not just coming from you, which was really helpful.

SPEAKER_06 21:57

I am no expert about Alzheimer's. I was trying to educate myself and lean on people who I knew who had experience with this. But we made some mistakes along the way. I mean, there were definitely signs that were actually more related to her Alzheimer's that we thought were other health issues, or we just didn't understand what was happening. So she had started exhibiting these sort of ticks. She also started presenting with some skin issues that, you know, we initially took her to see a dermatologist. It turns out she was actually like picking at her skin as a way to soothe anxiety. And that was actually related to her Alzheimer's, which I didn't initially understand that that's what was happening. And so I did, you know, certainly lean on friends I knew for support emotionally and to give me advice on my process. I actually called the Alzheimer's Association. One of your guests had actually been on the show and I'd listened and I thought, you know what? I'm going to call their hotline and find out more because my primary concern was making sure that mom was in a facility that was going to provide the right level of care. And also I wanted to try to minimize any movement. I knew that any kind of disruption in her life is very, very difficult and probably going to become even more difficult as her Alzheimer's progresses. And so I was trying to, in my mind, find a place for her where she could progress, if it was an assisted living, to a facility that also had a memory care on site, for example. So that this would really be her last move because I knew moving is difficult for her. I did call the Alzheimer's Association. I wanted to understand what stage mom was in and what they would recommend in terms of level of care. And then ultimately we made an appointment. My sister and I jointly decided to agree to take mom to see her neurologist and really get their advice on what the right level of care would be for her. And just to ask a lot of questions to better understand mom's needs.

SPEAKER_05 24:06

Yeah. When you told me about that, I was like, that's the game changer. That's probably what pulled all of this together, where it really helped that relationship that you now can be able to enjoy again with your sister, where everybody's on the same page. And that brought me so much joy that you're past that because just to button it all up, it was hard for me to see because I knew you when you were like enjoying trips with your sister, and um you had such a great relationship, and you were going up and spending time with your sister weekends and you know, doing the things that sisters should be doing. And then the controversy started, and and you started sharing with me some of the things that were happening, and that was hard for me to watch because you're my friend and I care so deeply about you, and I'm gonna start getting emotional. It broke my heart because it's just such a terrible thing and it shouldn't be. And I would think, you know, even with my experience, my mom was had passed away at this point, but my mom would be completely heartbroken. You know, when I was growing up, my mom would say to my sister and I, because my sister and I are completely different, we're completely opposite little people, even as little children. She would say to us, You two, when your dad and I are gone, you will only have each other. She would say that to us. And it was ingrained in my head. It was almost like she was forecasting. She knew. I'm glad she's not here to see it because it would completely break her heart. And then it would break my dad's heart to know that it was a disease that he had no control over, and the situation he had no control over was like the straw that broke the camel's back in the relationship that I had with my sister. I mean, it's just it's just awful. But I'm so thankful and so joyful that you were able to navigate and maneuver that back into such a positive way.

SPEAKER_06 25:58

Yeah, I I agree. I mean, I just I felt like I needed to give her time to process as well, you know, what was happening because the emotions are high for everyone, right? And, you know, you care about this person, you want to do the right thing. And so I did engage experts because I'm not one. You know, I really wanted to hear it from them. And I wanted us to hear it at the same time, in the same room, have the same information to work with. And I asked a lot of questions. You know, we talked about can mom travel? You know, we used to take road trips with her, you know, what can we expect in terms of the support she's gonna need and what is the right level of care for her now? So those were all questions that we asked, and I think it was tremendously helpful for both of us. There were other factors at play as well. My sister had gotten a new position at work that involved more travel, and so I think you know, that changed her thoughts about the support she'd be able to provide mom if mom were to move in with her. And so I'm so happy that at this point our relationship I think is on the mend. So I really hope we can get back to that place where we are, you know, traveling together and having fun together as we once did, because we've always been so close. And so this was incredibly difficult. And knowing, you know, how divisive it can be for sibling relationships, that was always a fear of mine, you know, once we started kind of having these disagreements. And I expressed that. I was like, you know, I don't want that to happen to us. You know, she's she's really my whole family, you know. Uh, she's really, really important to me, and I want her to always be part of my life. So I'm I'm happy that uh ultimately she and I did have a conversation about a facility that might work well for mom. We toured it together and we both asked questions and got to see it, and then uh we've been working together on transitioning mom to uh her new home.

SPEAKER_05 27:56

So yeah, and your mom is now in the new home, correct? She is. How's she doing?

SPEAKER_06 28:02

You know, it's all an adjustment. When I ask her about, you know, what it's like living uh in her new assisted living facility where she is, um, where she can age in place. And, you know, it's the last stop for you know many of their residents. And they have a a woman in the facility who's 105 years old. Oh wow. I know, I know, and I just I love it. It's a small community, which I think is is perfect for her because you know, she doesn't really utilize a lot of the amenities that the larger communities uh have. And so this is really a perfect setting for her. I think it's small enough that she feels safe, but big enough that she feels like she has her own space and you know, she likes the other residents, she likes the food. So I I think it's gonna work out. You know, she's still adjusting, but it's uh I think it's a good fit for her.

SPEAKER_05 28:54

Well, that's great. I love it. It's a full circle journey, so this is perfect. A great, great story with a great outcome. Well, thank you so much for joining us today on Senior LivingGuide.com podcast, Valerie. I really appreciate your friendship and everything that we've um been able to share together in both of our journeys over the last several years. If you enjoyed this podcast, please check out our other podcasts. We have three seasons of podcasts, and they are available anywhere you enjoy your music or podcasts, such as Apple Podcasts, Google Podcasts, Spotify, even Alexa. Thank you.