Transcript
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Yeah, let me see how I can create more meaning in your life because she was like, I'm helping people and I need to do more like, can't I have a job and I and then I would go to the facility and be like, Okay, how can we create a teaching environment? Because my mom used to be a teacher. She was a professor, a graduate professor and so like, how can she pseudo teach a class to give her some meetings a
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sense of purpose? Yes. Helping
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people because that's what she's done for her whole life.
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Hello, and welcome to dementia discussions, the podcast for and about caregivers. If you'd like to share your caregiving story with me, I'd love to hear it. Please call me at 310-362-8232 or email me at dementia discussions.net.
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Today on the show, I welcome Skyler. I had the privilege of meeting Skyler and her mom about a year and a half ago. And I have not been in touch since then. Skylar, welcome to the show. It's great to have you on.
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Great to see you again.
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It's so good to see you too, Barbara. So I
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saw you and your mom. That was back in November 2022. And from what I remember your mom, well, then she was 68.
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So yeah, yeah. And beautiful.
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Just this beautiful woman living in her own home, you were very aware that she had trouble with her memory and really trying to kind of keep her home with services in place. I remember you had gotten like a tile system to keep track of her things. We were trying to arrange like meals for her because that was difficult. And she kind of lived in a house up in the hills. And I remember that being challenging, and you're really trying to bring in more help for her and just kind of running into some obstacles with all of
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it. Yeah. To say the least. It's like the pandemic. I had just graduated college, basically. And so like I met, and then all this stuff happens, and I'm at home, and I'm trying to figure out like, I know, my mom really wants to be home. I want to honor that as much as possible. At the time I was I think I had turned 2423 24. And I was kind of at my wit's end.
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Because I was caregiving for her full time, I was like, watching the decline, I was noticing that it was getting scarier to leave her alone, she was still driving, which was also very alarming. And I tried so hard to create some type of situation in which my mom would feel comfortable having caregivers come, I interviewed so many caregivers, and I gave them the situation and said, You're not going to be a caregiver, you're just a friend, then you're coming to help out twice a week.
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And it's just a friend of a friend and having to construct these really grand plans so that mom would agree to the help was challenging. And I tried to execute a few of them. But ultimately, it wasn't something that was going to be sustainable in a real way. And like with the agreeableness of my mom, and then also financially, it just wasn't something that I was, it wasn't a realistic at the end of the day.
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Yeah. And that's, I think a lot of people can relate to that. Because it's so expensive to bring care on the home. Yeah, and what you said about your mom agreeing to care, I mean, just the story you'd have to create to get the care in there. Very challenging.
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Yeah, it was a lot of had to use a lot of brain power to figure out okay, how am I going to orient this in a specific way so it's digestible enough for my mom at this specific time doesn't mean it's gonna be later and I have to use something else to have her cooperate with me. But yeah, it was it took a lot of brain
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I would right because we were looking for a companion that could really take her to exercise at this particular place and lunch at that other place and would look like a caregiver it looked like more of a friend and so it seemed difficult.
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Yeah. And unfortunately, like, my relationship to my mom isn't one that is like super, super close and tight knit and like, she's not my quote unquote best friend like a lot of people feel about their parents and a lot of people share in my support group about how their parents think it's like you're losing your best friend and I don't have that relationship with My mom, we have a very complicated, tumultuous relationship. And so it wasn't it also wasn't an option for me to take her on these adventures and advocate for her in that way, like day in and day out. I knew that we wouldn't be able to exist harmoniously together, if I were to take on that kind of responsibility. And we have very different personalities, I'm very confrontational. I'm not afraid to advocate for myself to stand up for myself to stand up for other people that are being treated unfairly or talked about unfairly. It's just not how I roll, that kind of personality, with someone who likes to kind of rush over things and be happy all the time. Even if there's other things going on. It just, it's not very compatible.
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Yeah. And plus, you're so young, it's not like you've had a full career and you're retiring from your career and can take care of your mom know, in your early 20s. So here you are just the beginning of a career. I remember when I met you, you would want to actually leave Los Angeles figured out my life. Yes, figure out your life.
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And then suddenly your mom has what was her diagnosis,
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she definitely diagnosed with major cognitive impairment, dementia, essentially. And then it was like leaning Alzheimer's, it was very clear that it wasn't like Lewy body, or frontal temporal dementia, it was clear that it wasn't any of those. And so it kind of just turned into casually Alzheimer's, but not like, I don't think that there were any we did any, like further testing for plaque and stuff in the brain, just because it was very hard to get my mom to see the doctors in the first place. And the Neuropsychology testing was such a nightmare in itself, I was like holding my breath the whole time, because it's like a five hour test for someone that doesn't want to be tested. And it just, I knew that it wasn't an option to keep pestering this solid diagnosis when like, I know, all I need to know. And I just need to figure out how we're going to keep her safe.
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Yeah, that's exactly right. I mean, at some point, maybe the diagnosis is kind of academic, you're just dealing with your mom and all her behaviors and all the things that are happening in her life.
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And I mean, at some point, it's nice to know the diagnosis Exactly. But you're really you just need to care. Take care of your mom and make sure she's safe. So, day to day basis. I don't know that it matters what her exact diagnosis is no, here you are struggling with all this stuff a year and a half ago or so. And two years ago, was it has it been two years already.
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Yeah.
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And two and almost a half years since all of this is really started. What did you notice at the beginning? I can go back to middle school. Right?
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So I'm 25. Now, middle school, is like I don't know, 1617 years ago? Was
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your mom having trouble with her memory back then? Yeah.
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I mean, when I was in middle school, she had really strong fits of paranoid. At the time, it was like, she really believed that there were bugs crawling in her skin. And it was something that went on for at least a full school year, where my mom was just like wigging out about these bugs in her skin, having like waking me up in the middle of the night to go to the hospital because the bugs were in her skin. And then like us having to live in a hotel for a while because the bugs in the house and the just like, so that was a that was the first indicator that I didn't realize, actually, until recently, like what that really meant, and I know that she would keep talking about the bugs to other like other people and, and her workplace. And then my mom had always, she'd always lose her keys. That was something throughout my whole life. She had never had a super awesome memory to begin with. But you know, she had her job and she was super functioning, and it was fine. And I think I really started to notice things more significantly when I would go home when I would leave for college and then come back home.
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And that time away. I was able to really clock Oh, this is new.
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This is something different. And some of those things were like, she started having more trouble with pronouns and confusing pronouns or physically getting words out. Finding the word that she was looking for more challenges with technology. I think it started to become really shocked. seem to me when I'd be at home for like a month, right? It's winter break, it's summer or whatever. And I would try to reference a conversation that we had the week before. And there was no recollection of that. And slowly it became a few days before no recollection, day before no recollection. And then like the hour before, no recollection. And watching that slowly happen was very scary.
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She wants told me like I was driving, and I didn't know where I was, but she knew how to get home. But she couldn't. Like she had her motor skills and tagged enough, but she just didn't have the cognisance to conceptualize where she was. And yeah, those were kind of the beginning stages. I mean, she would lose her car and parking lots. And then she tells stories of Oh, and the firemen helped me find my car. And it was like, very like, Oh, thank God, like, people were there to help you like awesome, like Lucky, like, great. Because she's good at brushing it off. She's very good at show timing. For a very long time, she was really presenting as though there wasn't an issue.
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And you would only really ever understand their an issue if you were to spend maybe five to 10 hours with her, which isn't really like, consistently happening with a lot of different people. So that was happening. Those were the early signs. And then my grandma died.
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And I was like, You know what, Mom has lost like 20 pounds in six months. I said, Finally, this is my shot to bring her to the doctor, like, I've been trying to advocate for her this whole time, have discussions with her, try to level with her.
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I'm concerned about you, I just love you. And that was always shut down with How dare you. And so I was like, Okay, here's my end, she's lost this amount of weight. My other family member can see that. I'm going to construct this whole plan to get her to the doctor, but I'm not to bring in her. My other family is going to bring her we were able to get her to see the doctor. I don't know how that appointment went right. Like, like, I don't know what he said.
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But it was very scary. It was like she's gonna die. This is what was told to me through the grapevine of like, she's gonna die if she doesn't start eating.
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And it was all of these really scary absolutes. And I was like, Oh my gosh, okay. Like, I was working preschool at the time, I was a TA for preschool. And I was like calling mom every at least twice a day before I leave, make sure she a call her for lunch. And then I'd be home by dinner. And I was doing that for like two months. And I realized, I can't do that. It's not I don't have the capacity. I simply I don't have anything left in me. I'm with kids all day. And then I have mom, and I'm trying to manage it all. And it's just too much. And I was also taking care of my grandfather at the time. So it was like very overwhelming. And you're an only child. Is that right? I'm an only child. Yeah, my mom did me. So it's just me and her. My whole life is really just us. So then I was like, okay, quit my job. Okay, what do I do? And so luckily, you know, one of the largest saving graces for me was Reddit, are slash dementia. They told me, you need to get your POA days in order.
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So you your legal documents, you need to get your legal documents. Yeah, I quit my job in February. And by the end of April, I was able to get the trust together. And all the medical releases and the POA is, and that was taken care of. And I was like, thank goodness, like, Thank God, I did that because mom didn't want to do it. She wasn't ready to do it.
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But I was I had to also very, like much facilitate, how am I going to bring this to her so that she will agree to it. And also around the same time, I think around March, I started going to a support group for young adult caregivers, for loved ones with dementia. And I'm so happy that I connected with them very early on in this process, because you don't know what you're doing until you do it. And and even when you're doing it, you don't know what you're doing. And so me is like, I was 23 I was like I don't know what I'm doing and I need help.
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And so I was so grateful. And I still go to support group now.
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And I just I the connections that I've made there have been absolutely incredible.
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So but you have that and I can't even imagine at 23 getting legal documents together. I mean, these are like, big adult things. You're not an adult at 23. But you're not really thinking about your parents legal documents at that stage. No,
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I had to figure out how to get into all of her accounts do her taxes like all of these things that it was also how do I maintain a property to because like, we have a hillside It needs to get cleared every year year, how do I do that? What you know, so,
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yeah, all of these things of
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that novelty was very jarring. And especially because my peers, the people, my age, are not going through the situation and still aren't. I think that the closest kind of similar thing that someone my age goes through that's like this as if their parent has cancer, which is more common than like, dementia. But yeah, it was also very isolating, because I was like, wow, my peers are able to have careers and exist in their lives. And I feel like, I am getting sucked into something so much larger than me, that I have no control of, and it's just kind of I'm all of a sudden, solely responsible for. And that was very challenging as well.
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Yeah, sounds very stressful. And isolating is a good word. I mean, at 22, you graduate college, you're expecting to go, whatever may be on to grad school at certainly onto some sort of job somewhere.
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Who knows if it's here in LA or elsewhere? Not the thought of caring for a mother with dementia, I'm sure had not crossed your
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mind. And it was the pandemic, also, I graduated college at 21 in March 2020, which was when lockdown happen?
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So it was a lot. But now, going through all of it, it's I don't know, I feel like I've gained so much in my development of myself that I have a lot of gratitude for the situation with all the pain and suffering and desperation and anger that I was reading back in my journals.
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When I was looking at them today. I was like, Yeah, but it was really pivotal for me to experience all of these things so intensely, so I can set myself up. Right, as I continue to grow up,
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and maybe having this time, as we know, dementia only progresses, right? All of what you're saying really contributes to, I guess, an overwhelming sense of grief and loss. And we're losing your mom at such a young age. Like it's not like your mom is still has been at your wedding or would have met your boyfriend or I don't know all these like milestones been a grandmother, you know, been there for your kids like all of these milestones, right? In the future. Most people are kind of look forward to and Yeah,
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after I got her trust in order, it was like a first awesome major victory. I worked on her getting diagnosed. And that was an uphill battle and learning how to talk to her and learning how to not present her with logic and kind of have to swallow my pride to hop into her world and validate her fears.
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And then redirect, that was a very arduous process as well.
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But yeah, it turned out that after I've tried to get caregivers to come in and keep her at home when she was her wish, ultimately, I had to make the really challenging decision to start looking for assisted living facilities for her. And with that, I felt so much guilt so much grief. Like, I felt like a failure. I felt like a bad daughter. But it wasn't realistic for me to take care of her full time. Like it was to the point that I my mental health was like I would rather die than have to do this day in and day out. It is so painful.
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It's so challenging. And at the same time, my safety is at risk because my mom does have violent tendencies, sometimes aggressive tendencies. And so it was like, Okay, I'm not physically safe with her. She's not physically safe. By herself. She set the microwave on fire, like, this is getting very serious and I can't do it all like I, a lot of people through this are like you're Superwoman, but I was like, I'm not Superwoman. I can't do it. Luckily, I was working with placement managers, who just on a silver platter handed me places to tour that met my qualifications. And I toured about four places. And I the fourth one, I was like, You know what? This feels right.
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You're giving me all the right answers and you're answering my questions and in the way that is the correct way. Like what are you going to do if this happens?
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Yeah, and I ended up moving mom there. It was the most stressful time of my life. It was a lot for my body. She
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needed to do that. On What did you say to her? So I had
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a plumber and electrician come in, it was true. Our pipes were galvanized, they needed to be changed. Like, there was a lot of construction that had to happen. And electrical was very outdated and not safe, you know. And that was also very true. And I had them talk to her about it because it's her home. And it was under the pressure like, Okay, well, we just talked to those guys. So we got to, for the time being, we got to figure out where to go, I'm gonna stay at my partner's house at the time, you will stay with your sisters for a while, and then you're gonna go to a hotel. And so I was kind of prompting her carefully as the weeks were following. And at the same time, I was going to IKEA and buying furniture and setting up her room and trying to come up with the plan of like, that plan in itself took a long time to construct. And so when it came down to it, I said, Okay, Mom, we're gonna pack your bags, and you're gonna stay at your sister's house for a few days. And then we're gonna go to hotel, we did that. While she was there for a few days, I moved out her furniture, like set up the room even more. And then I took her to this beautiful place, and it does look like a hotel. It wasn't like a
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really, it wasn't such a stretch. It's like this, like it wasn't
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like this is definitely an old folks home. Like this is a nice place. There's reception, it's at lobby, like there's cookies, there's stuff like refreshments. She was able to have her dog with her, which that was very important that she could keep her dog for as long as possible. And acclimating was also a very scary and
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going back one step was your aunt on board with the plan
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at that time she was and so yes, at that time, it was like, I know you're gonna do your best Skylar like, you take care of it. And she did for those like, I think it was like four or five days, house mom, which was a big deal. It's hard.
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It's not easy to do that.
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acclimating was hard. The third, By the third day, she was like, her bags are packed, she was holding her dog in her arm, and she had her she was going out the front
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door and she's ready to go. Or that it's done or Yeah,
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and the facility was like, we're gonna call the police on her. I was like, Don't do that, like, Oh, no. And so it became this whole telephone tag, and basically, were able to get her back inside without the police and
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moved her into the assisted living part, not into the memory unit. So she could walk out the front door, I see. And that
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was the only way she could have her dog. So after that, like her going out the door and other random stressful details that happened at the time. Then she was back inside and was like, I guess we'll stay in this hotel a little longer.
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And then she was she's been happily there ever since. Wow, with her dog with her dog. But now just like two days ago, she was moved to memory care. She had a little over a year extra with her dog. But it just got to the point where her wander risk was too high. And honestly, Memory Care is a better place for her to be. And so now I've been the past few days, I feel like I lived 12 lifetimes, I've been figuring out what to do about mom's dog. And luckily, the place that I've picked out from mom, they've been like holding my hand every step of the way, emotionally, physically. And that support that I haven't received throughout this whole journey, especially the physical part.
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Like they moved all of mom's stuff straight into memory care.
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Like I didn't have to pay movers to do that. They're fostering mom's dog, while they outreach to the community to see if anyone else wants to adopt her.
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And so I don't have to foster mom's dog and go through that pain. And yeah, they've been really wonderful. And so I feel very proud of myself for doing my due diligence at the time and figuring out if this place was right
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for her. And it has proven to be the right place for her. It sounds right.
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They're doing a great job caring for her and yeah, and you really along the way. Oh, definitely.
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And
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I don't know if it's because I'm like super young that they like feel extra bad for me that they want to like help me out. But that could be and that's okay. I'll take it like the generosity is so greatly appreciated. I've been feeling a lot of gratitude for that lately. Yeah. So that's the that's where we currently are with mom on. So
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is she still asking to go home or she's not asking anymore? Well,
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I mean, I don't think she really asked to go home.
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Initially, when I first moved her. I mean, she does call me and says like, well, I don't know how long I'm gonna be here for like, I'm gonna go somewhere else. And I'm like, Oh, really?
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Like how are you going to do that? Oh, interesting. And so she's had conversations about that with me kind of like this antsy. This with being in one place for so long. And I don't think she realizes how long she's been there. But you know that feeling of being in one place for a year, whether you like it or not, you can sense it your body kind of knows. So they
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just go with it like, Yeah, Mom, you're right. I
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go, Oh, well, I was trying to figure this out with my support group of like, what do I say to her? I can't be like, oh, yeah, I'll find your new place. And we're gonna move Get ready. Like, because that it feels like a dangerous world to jump into. Like picking which worlds is smart to and not like another dangerous world to jump into is like, oh, yeah, people are stealing things like No mom.
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Like, that's not something that I was ever willing to validate.
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But for that situation, I would hear her and be like, oh, you know what, Mom? It sounds like, do you think your feelings like stuck like, you feel trapped?
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Like, do you? Are you looking for some novelty? Something new?
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And she'd be like, oh, yeah, you know, I just don't know about here. Like, I need to do something different. Like, yeah, I hear you, Mom, it's hard to feel like you're in one place.
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Because I try to also not like assume what she was feeling either, because that could land you in a sticky place as well.
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And not just with everyone in the end. I wish there was something that I could do for you or tell her you know what, Mom, and I'll work on it for you. And let me see about that.
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I hear you. I hear you. I'm so sorry. Like, it's hard. But let me see what I can do about it.
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Of course, that's nothing. No, of course you're not gonna do is I'm not doing anything, of course.
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But in the moment she feels understood. And she feels heard and understood.
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validated. You get me? You're not like No, Mom, you're not going anywhere. Of course, you're not saying that. You're saying, I hear you. Maybe you're feeling bored or stuck or need something new. You're feeling antsy? Let me see. Let me look into that for you. Yeah, let me happen to that. I'll get back to you. Let's see what we can do about that. Yeah,
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let me see how I can create more meaning in your life because she was like working here. But I'm helping people and I need to do more like, can't I have a job? And I and then I would go to the facility and be like, Okay, how can we create a teaching environment? Because my mom used to be a teacher, she was a professor, a graduate professor. And so like, how can she pseudo teach a class to give her some meetings and sense of purpose? Yeah, helping people because that's what she's done for her whole life. And then when you're kind of like in retirement, like, what am I doing here? And I think that's also like a general thing to have. When you reach retirement age. It's like, well, you have to be ready to retire, have a plan to retire. Because what does retirement look like to you like, you need a schedule you need to have and so the pandemic forced her to retire fully. And but then it was like, we're in isolation. So there was no really plan in place. So it's like, years of kind of being like, wow, I was dedicating my life to a purpose. And now I really don't have one. And there's something missing. It was just a very natural feeling.
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And
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is the facility pretty good about like, oh, yeah, let's pull her into this.
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Let's pull her out to the office and have her do some air super, some tasks. Super good about
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that. I called memory care today, because I was just like, keeping tabs on the situation. You know, I'm there.
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Were saying like, the Eclipse was yesterday, and your mom was kind of heading towards the doors. And I redirected her to help her set up the solar systems and Eclipse stuff, because it was the viewing. So it was very exciting. You spent like an hour doing that. And then was like, Okay, so now what do I do with them? Like, can I put them somewhere like, she wants to be of service, and so they're so wonderful, and keeping her active and entertained, and very clean and safe. And like, again, like I'm feeling overwhelming gratitude for the place I picked for her, because it's great to be wonderful.
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That's great.
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And is she on the younger side of people that are there. She
00:29:02.490 --> 00:29:22.259
is surprisingly in a companion suite now, which I didn't think that she would bode well with because she's kind of been on her own her whole life and read adopted me as a single mom, and then even me in the house. We're still kind of like in our own little bubbles. And I was like, Oh, God, you can't do like, I don't know about that.
00:29:19.109 --> 00:29:34.619
But she seems to be doing just fine. And her companion, the person that's in the room that's kind of roommates with her is also in her 60s. Mom's turning 70 This year, but the person with her is also quite young.
00:29:34.619 --> 00:29:41.940
And so it's not like clearly, you know, oh, this person isn't my age. I mean, my mom thinks that she's 25 like me. Exactly.
00:29:41.940 --> 00:29:49.410
I also always thought that like she's, she's always thought that she was significantly younger than she was. And she looks young.
00:29:50.099 --> 00:29:52.859
She's a cutie patooties Yeah, total cutie.
00:29:52.859 --> 00:29:53.549
Yeah.
00:29:54.839 --> 00:30:05.039
It worked out actually really well. But of course, it's still early like things can divide. A lot of things can change. But right now we're in a relatively stable place.
00:30:05.640 --> 00:30:12.180
And when you moved her into memory care, did she realize what was going on?
00:30:07.680 --> 00:30:12.180
Or she didn't really, she didn't
00:30:12.180 --> 00:30:27.000
really know. Honestly, I wasn't there. It just kind of happened. They just did it the facility just Yeah. And we had calls all day about it, and oh, we're gonna put a water guard on her, Oh, she's taking it off.
00:30:23.250 --> 00:30:27.000
Okay, that's not gonna work.
00:30:27.000 --> 00:31:19.230
We're gonna have a caregiver come overnight to just stay outside of her door while she sleeps, which is $500 a night, which I had a panic attack about because I was like, we can't afford that I'm already paying 7100 a month for this care. And then 500 A night is like, not possible. It's just not feasible for us. They knew that that I was very financially stressed about it. I said, Okay, well, we're going to take the opportunity to move her into memory care when we want it feels right. And so we had the one night of the caregiver outside the door. And then the next day morning, they just were like, Oh, come on Terry over here. And I think they just ushered her over there. And that our stuff, did it. And I didn't even have to be there, which I think would have made things much more difficult ultimately.
00:31:20.160 --> 00:31:27.569
So you can just show up, and she's in her new space. And yeah, you don't have to go through any of that transition. And it sounds like she really didn't either.
00:31:27.690 --> 00:31:30.630
Doesn't sound like she was standing at the door. Like, where's my room,
00:31:30.720 --> 00:31:40.230
she has tried to go for the door many, many a time. And she did get a little aggressive with the care staff. But I just know that my presence there would have escalated her aggression.
00:31:41.579 --> 00:31:44.640
They just easily redirect her or it's
00:31:44.640 --> 00:32:15.900
a new day, right? Each day is a new day. Some days are better than others. Some days she's like, surprisingly lucid other days. It's like, oh, yeah, it's nonsense today. So it's just slowly as they come up with a schedule for her and a routine. She will become better adjusted. And yeah, I'll figure out when I can go and see her because I want to see her honestly, I would love to see her now. But I know that that wouldn't make sense for her acclamation. Interesting. So you're holding off a little bit.
00:32:12.359 --> 00:32:15.900
Oh, that's missing her? Yeah.
00:32:16.049 --> 00:32:22.619
Oh, definitely. Because I just know that. She needs to just figure it out on her own, just like this. I did the same thing.
00:32:22.619 --> 00:32:32.039
When I initially moved her. I didn't see her for like, I think two months or two months. It was like, like her,
00:32:33.240 --> 00:32:34.680
said she she had no idea that
00:32:34.680 --> 00:32:42.960
two months had elapsed, and she she was had her routine enough and established enough to be like, Wow, I know, this person's come comforting to me.
00:32:43.200 --> 00:32:53.549
Wow, that is really throwing your trust into the facility. Right? Like just Oh, totally trusting the staff to do what they need to do for your mom. Yeah.
00:32:53.579 --> 00:33:11.849
And I was very fortunate to like the place had just opened six months prior, they seemed very experienced. I asked questions like, what if my mom starts to become aggressive or really irritable? And they would say, well, we would redirect her like that was the right answer.
00:33:08.339 --> 00:34:25.260
Like we would like hear her and redirect her. And all the other facilities before did not give me that answer. And I was like, Oh, these people know this world, in what is mixed in this world, even in assisted living, the fact that they were kind of newer, and there weren't a lot of residents there. My mom could have a lot of attention. And that was very important, because I knew that she needed very close eyes on her especially, she's a tough cookie. He's a fighter, like, we went through like she's been through a lot of stuff in her life. Like she, she's very fierce and strong and stubborn, and also very brilliant. And so I knew I needed a lot of eyes on her at the time, because it was a newer place was a part of a larger corporation. But like it had just opened, I knew I would be able to get the kind of care that she needed. And then the help that I also needed because I was going to hire someone to build the IKEA bed for her. But then the maintenance lady was just like, oh, yeah, I'll just build it. And she just built it for me. And I Wow, thank you so much. Yeah, that is, uh, above and beyond. Like, I was not expecting that kind of care.
00:34:21.360 --> 00:34:40.019
They had a whole moving team helped me like a whole separate like, okay, yeah, this is what's going to happen. This is what we're like. And it was incredible. So I was very fortunate. And it was among the chiefs on the cheaper side of the places that I had looked at, so it was a win win all around.
00:34:40.440 --> 00:34:42.539
So great and close to your house.
00:34:42.869 --> 00:34:46.170
No, it's pretty far.
00:34:42.869 --> 00:34:46.170
It's about it's about an hour.
00:34:46.349 --> 00:34:50.039
So you ultimately ended up moving back into the house.
00:34:50.219 --> 00:35:23.820
Since I moved mom I cleaned out the entire house like basically 60 years worth of stuff. Wow, that was very challenging because it was like I'm saying Seeing her as a person, I'm reading her journals, skimming them, like, oh God, mom was so much more than just my mom, like she had a full life and full thoughts and so many different relationships that she was worried about in the way that I worry about different relationships in my life. And it was like, very challenging to sort through that. But we were able to do it.
00:35:23.820 --> 00:36:02.340
And then after that, I've just been in renovation this whole time, just construction. So for a year, and almost like I would say, a full year, I've been in really intense property management. And I had a, I had a tenant battle, I guess you could say, that was like six months long. And that ended and he moved out. And so I've just been preparing the house to be rented because I need to support when mom gets worse. And I don't have a career right now. Still, I'm still able to live off of savings. But I've been doing manual labor, mixing concrete digging holes,
00:36:02.340 --> 00:36:06.239
building, Wow, you are doing this. Oh, my goodness, yeah.
00:36:06.239 --> 00:36:51.030
And I have a wonderful contractor who is my Super buddy, he's a grandpa to me, he's turning 76. He's amazing. I love him. He's been teaching me how to do things. So I've been patching the house painting, the house staining, like doing all this stuff. And so that's what I've been absorbed with in the past year. And it's much it's just because the house has been neglected this whole time. It's like the disease added to the neglect of the house. And, of course, wasn't livable. And so getting it up to standards, and I did end up redoing the galvanized pipes and redoing the electrical because it needed to help you know, I wasn't sure I really did meet that need to happen. And so it's been eating away at savings, but it's worth it because
00:36:51.090 --> 00:36:56.909
I don't rent the house out. Yeah, you'll rent it out. And then your mom will be able to get the care she needs.
00:36:56.940 --> 00:36:59.940
Right. Yeah, with that additional income. That's great.
00:37:00.059 --> 00:37:30.179
So I'm trying to be smart. Like I'm trying to be really proactive, and preventative, and a lot of people would ask me, where are you going to sell it? And like, no, I got a plan for mom's future. Like, there's no and also my future, you know, like, I get an opportunity like this again, to be like a homeowner, it's very hard to buy a house at my age with the job market and what people my age are getting paid. And so just trying to be really overall smart for both of us. Yeah. The priority. Yeah.
00:37:30.690 --> 00:37:34.920
And your support group? Is there anyone as young as you are in your support group?
00:37:35.550 --> 00:38:13.530
No, I think there have been some people on the younger side of like late 20s, maybe, but mostly early 30s. And my closest friends and support group are in their 40s. And I also don't know what I would do without them, like simple as that. Like, I'm not going to my 25 year old friends talking about this. Like there's not a world in which they understand the complexities and chaos and stress of this specific situation, going to a support group targeted for caregivers, young adult caregivers, caring for loved ones with dementia.
00:38:13.530 --> 00:38:20.699
It's like, they know exactly how I'm feeling. And they know exactly how frustrating it is.
00:38:17.010 --> 00:38:40.110
And they know exactly like the ins and outs of the system of aging. And they've been on this journey longer than I have. And they're mentoring me through it as well. Those are my people who I cry to. And also I've been in therapy this whole time. So help that helps. Like twice a week for a while. You're right.
00:38:40.110 --> 00:38:57.090
I mean, those are the people who are experiencing the same loss the same grief that you are, they don't have the parent. They thought they would have even in their 40s Right. I mean, their parents are probably in their 60s Maybe 70s They're still young men in the world to geriatrics.
00:38:57.090 --> 00:39:01.980
That's still pretty young. Yeah, most of their parents are like, 80s 80s you can be a healthy 80
00:39:01.980 --> 00:39:07.559
Yeah, but still, it's 20 years on your mom. Yeah, your mom you said is set just turned 70
00:39:07.650 --> 00:39:10.289
She's about to Yeah, now to turn. 70 Yeah,
00:39:10.320 --> 00:39:12.030
so that's another 10 years.
00:39:12.059 --> 00:39:24.480
I mean, and she's still pretty She's kicking in she's pretty mobile. She's I don't know how long she can keep living for and I mean, I'm just planning for all of it because it's not like she's really on her deathbed.
00:39:26.699 --> 00:39:29.400
No, she's crazy.
00:39:26.699 --> 00:39:29.400
Yeah, it doesn't seem right.
00:39:30.420 --> 00:39:51.630
It's about being smart and being thorough and, and also being gentle with myself is super important to be gentle with yourself. Yes. I'm so happy that I had read it initially to like help guide me in the right direction and then support group off the bat. Because I haven't had a lot of physical support but emotional and mental and logistical support I've had boatloads
00:39:53.400 --> 00:39:56.190
Yeah, good.
00:39:53.400 --> 00:40:06.480
Yeah, that's probably why you can laugh now and not bitter and resentful. You You're just kind of taking it all in stride and just doing what you have to do, you're in like, check the box mode.
00:40:06.599 --> 00:40:54.570
It's funny, like I'm at this point where I'm like, I've had to spend so much time being so thorough and doing my due diligence and making sure like all my eggs are perfectly squared away. When I'm like, also ready to be 25. And like really make mistakes or like get myself into situations in my personal life where like what I'm doing like, I'm like, kind of excited for that. Like, I'm excited to jump into things much like low stakes, things, write things that are not life or death, which I feel like Mommy is life or death. I'm excited to jump into things and not really think them through because I've had to just expend so much brainpower, really considering every potential risk and fear assess all of it. I'm ready to be 25
00:40:55.199 --> 00:41:02.460
salutely And do what 25 year olds do. Yeah, exactly. impetuous decisions where I mean, not crazy.
00:41:02.489 --> 00:41:02.789
Nothing.
00:41:04.139 --> 00:41:15.659
Extreme, very low. But just morass. Yeah. Yeah, just being young and learning from silly little situations, wholesome situations like that I'm getting myself into,
00:41:15.869 --> 00:41:18.719
and you can, your mom is squared away, right?
00:41:18.750 --> 00:41:33.300
Your mom is basically not that you can walk away, but she's pretty much safe where she is, they're going to call you if anything happens. So you could just take the your eye off the ball for a moment here and focus on yourself a little bit.
00:41:33.750 --> 00:41:59.519
And that's the piece that was so hard for me to do, because another part of my support system is visiting a monastery that I grew up going to with my mom, like every summer, it's like Vietnamese Zen Buddhism, it's called engaged Buddhism, it's pretty like it's like, woke. It's like woke Buddhism, pretty chill. Not very religious, just kind of like life is full of suffering.
00:41:56.820 --> 00:42:31.829
Here's how to cope with it, if you want to, like you don't have to, but like, if this is what you want, you can do it. One of the biggest releasing things for me was this talk that a super honorable nun gave, she was talking about like, I don't know what the Buddha was talking about this. But the four kinds of people, the first kind of person is someone who does not practice welfare for themselves or for others, which isn't very good. The second person is someone who practices welfare for others, but not themselves.
00:42:32.010 --> 00:43:37.619
The third person is practicing welfare for themselves, but not others. And the fourth is practicing welfare for themselves and others. I think the Buddha was saying, like, obviously, the fourth person is like, where you want to be, but the third person of practicing welfare for yourself only, that is much, much more favorable than the first or the second option. Because what was what I was doing for the longest time, was sacrificing myself to take care of mom, giving up my life, my autonomy, and that battle, losing my autonomy, it being taken from me was so hard to live with. It was I was so desperate, I was so angry. I was so sad. I was full of grief. It was like, My life wasn't mine and the world that I was in I didn't like, but it's because I was sacrificing myself for someone else. I wasn't taking care of myself, I had to just put me on the backburner and focus on mom. And why that's so dangerous is that the second person grows resentment and bitterness, towards read that.
00:43:33.690 --> 00:44:00.329
And then hearing that the third person who cares for themselves but not others, that's the better option. There's nothing wrong with quote unquote, being selfish in that in this kind of way, right? Like, there's nothing wrong and in prioritizing your needs, and realizing your limits, like that year was the year of realizing my limits and honoring them, like truly honoring them. It wasn't
00:44:00.329 --> 00:44:05.219
the hard thing to do as a caregiver really. And because
00:44:05.429 --> 00:44:14.400
a I didn't want to have to be like bitter and upset with mom and the situation, which I was for a very long time. Right.
00:44:14.400 --> 00:44:17.099
Like, I didn't want that for her. That's not fair to her.
00:44:17.099 --> 00:44:58.590
Because all of this is out of our control. And at the same time, like, yeah, it showed me that like, Oh, it's okay. Like, I don't have to sacrifice myself for this. Like, you deserve to have autonomy. You deserve to have a break. You deserve to have joy. How can we create joy in your life to help you get through this? And so then I started to get very serious about okay, what can I look forward to in life? How can I create joy so that all of this is less unbearable? How can I start taking care of myself more deeply and intentionally, instead of just like, as best as I can in passing, like, how can I be intentional about it? And I think that really changed everything for me.
00:44:59.519 --> 00:45:02.820
Was that include like a meditation practice, or
00:45:02.849 --> 00:45:26.940
Yeah, so there's meditation involved. And it's honestly a practice of deep gratitude, constantly remembering and reminding yourself, my body is healthy, like, I'm able to breathe today I woke up today, the food that I'm eating came from our beautiful earth, just finding ah, in everything ah, and in beauty and realize that like, life can be beautiful.
00:45:27.449 --> 00:45:31.800
Just the littlest the smallest things in life, since the agonizing them, keeping
00:45:31.800 --> 00:46:12.719
it really simple. And luckily, I grew up with this practice. So it's, I feel like it's pretty inherent in into who I am as an adult. But being able to go there and recenter, myself and reprioritize How do I want to approach the situation? How do I like what relationship do I want to have with it was really wonderful, because I'm currently in EMDR, like, hashing out trauma that mom's given me from my childhood. And I really want to make sure that I am taking care of my relationship, because it's a horrible feeling to grow with anger and resentment towards your loved one, it's horrible. It's a very low vibrational place
00:46:12.719 --> 00:46:26.969
to be you right and wearing really wearing on you. Yeah. So to be able to try to work that through in some way and get in touch with your gratefulness is, takes a lot of work, I'm sure
00:46:26.969 --> 00:47:48.000
a lot of work. It's very hard. Yeah, hard. But one of the biggest things that I've taken on this whole situation, besides figuring out how to manage my grief better, and knowing that like, anticipating my grief isn't really serving me at all like, like, stuff like that, because I'm so young, and I'm still developing into myself and my identity. This has really shown me what kind of person I am, and has given me like full confidence in who I am and how I've moved through life. And it's given me this, like abundant wealth of self love and compassion, because I don't know how I was going to get that self esteem. Otherwise, I mean, I don't have maybe in my career, right, maybe through my friends, maybe in my personal fitness goals, or whatever it may be, but this has really rocked me to my core. And it's given me this gift of honoring my, my authentic self, and loving her, and loving like the person that I am, which is something that a lot of us just struggle with, in general, like, it's, it's just just like a part of being a human, that's really challenging. And this is showing me like, when you hit rock bottom, this is the kind of person you are, and I respect that person,
00:47:48.719 --> 00:48:09.059
you find that since you are kind of getting more in touch with your more loving self, that you're more loving towards your mother, since you're trying to kind of let go of the history of the difficulties you've had with her the resentment, the anger, you find that when you're with her, you are more loving you.
00:48:09.539 --> 00:49:09.570
I think I was able to be my most loving self when I wasn't caring for her 24/7 I think has really helped us. But you know, I've been doing resentment work about her for a very long time. And I think I've always ever throughout years of my life, I've reminded myself, she's so much more than just a mom, like she's a full person, like I said earlier. And she didn't ask for this either. Like no one asked for this. And it's not her fault and evil wickedness that I see present day is the disease. It's really not her, even though I feel like through many times in my life that my mom wasn't there for me, like when I take her to the dentist and I see that she's in pain, or she doesn't know she's in pain, but like her gums look bad. And the dentists are telling me that, that breaks my heart. I can't help but have that empathy and compassion for someone that I love. I don't want her to be hurting. It's very similar to what I feel like. It's like to be a parent.
00:49:09.900 --> 00:49:34.559
I feel like I'm Mommy. I'm Mommy now to my mommy and I'm kind of a young mommy, but I don't want her to hurt. And I want her to have the world and I will do everything in my power to give her the world like having her dog with her keeping them together as long as possible, making sure that like she has the treats and the things and all. I don't want her to suffer.
00:49:34.619 --> 00:49:46.050
And it's also a good thing that she doesn't know that she has dementia. Can I think that's a whole mind trip. That is a whole other thing. completely separate? Absolutely.
00:49:46.050 --> 00:49:57.329
Yeah, it's good that she doesn't have insight into her diagnosis. I must say I am grateful for you being here today. And sharing this these past couple of years with me.
00:49:57.480 --> 00:50:36.960
You are just from where I saw you 2022 You've just really, like done so much work. Because you were that person you were very you were angry and resentful of what had become your life suddenly, right? Not wanting it not having it. And so it seems like you've done so much work. You have it, and you've really worked yourself through so much, it seems. I mean, I can hear it like it's really come through. So I appreciate you being here today and talking about some really hard stuff with your mom. Thank you for sharing your story. So thank you for that.
00:50:37.530 --> 00:50:38.519
Thanks for having me on.
00:50:43.679 --> 00:51:10.530
Remember that you can follow dementia discussions on Apple podcasts, Spotify, Google podcasts, and many more. If you listen on Apple podcasts, it would mean a lot if you would leave me a review. For any other information about this podcast please visit me at dementia discussions.net. And please share this podcast with someone you know if you think it may help. Thanks again for listening. And I'll see you here again next time on dementia discussions.
