Building A Sustainable Caregiver Wellness Routine

Nikki Nurse
Nikki Nurse

Nikki Nurse talks about her caregiving experience and building sustainable wellness routines.

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Podcast Transcript

June 9, 2023
Note: This transcript was computer generated and might contain errors.

Nikki J Nurse:  So, my name is Nikki Nurse and I am a daughter and a wellness advocate. I was a caregiver for my mom for 12 years until she passed away, February 2023. And I have just been on a mission on helping caregivers to prioritize their wellness and their well-being.

Katie Wilkinson: Yeah. And thanks for sharing about your mom. It's a long time to be caring for her. And I'm sure this transition has been Complicated and can you talk a little bit about you know in those 12 years I imagine many many things were different over those 12 years. But you know, what was most challenging and what was most rewarding of your caregiving experience at large?

What was most challenging and most rewarding about caregiving?

Nikki J Nurse: Yeah, it was definitely large. Right, not small. So there were a lot of challenges but that, you know, I found that there was balance in being a caregiver. So initially when I started, I, I was working in the fashion industry and when my mom was diagnosed, she was diagnosed in her late 50s. She was about 57, um, and I quit my job so that I could take care of her because she was just my person and I, I took it on as a project like, alright, mom, we won't staples. We get in this big wall calendar. And we go right down everything that we're doing today. It didn't work like that it because my mom again was in her late 50s. And at that point, there's a, there's a stage in your life where you feel like, you know, you just want to relax, you just want to travel or do whatever you want. You don't want anyone telling you what to do, right? And here I come all this energy trying to tell her what to do so

Nikki J Nurse:  It didn't, it didn't work out, so great initially and there was a bit of a learning curve but

Nikki J Nurse:  With the bumping of heads that we both had, I was able to find space for a conversation with her. So we could just talk about what this new lifestyle was going to be for both of us because it wasn't just that she had dementia. It was also that I would be there to help her through that journey and I didn't want her to see it as this, you know, devastating diagnosis. Even though it might feel that way, I wanted her to still find hope that she wasn't going to be alone. And that I would ensure that she'd have dignity of care throughout the entire time. My mom was also a nurse for patients with dementia. So I did come into this knowing some things about the disease, but I had no idea that it was not just losing your memory. I, I soon found out that when you have dementia, which is what I would like to

Nikki J Nurse:  To, as a cognitive decline or cognitive disability, it it really affects your overall life, your personality, your senses, everything is affected. So when it came to, my mom and caring for her, the challenge was, How do I get her to remember certain things or engage with certain things? And, instead of triggering her memory as in, you know, giving her a direction to something, I would trigger her senses. So, her sense of sight, her sense of touch her sense of taste. And I did that with intention, so that she could connect the dots on her own. So, one one example would be when it came to her grooming.


Nikki J Nurse:  Um, she never wanted to brush her teeth or comb her hair. It was I, I incorp I initially. I thought maybe she didn't want to do that because it was like, keeping her sense of control in a sense, um, because everything was being stripped from her and taken away. So the only thing that she did have was her body and, and the things that she could touch so to help her along with that, I started playing music and music became my perfect sidekick. Like I was Batman and music was Robin. And I, whenever I wanted her to engage with some grooming activities, I would put on the Jackson 5 and she get in that bathroom like Yeah, let's do it. Why are we here? Oh brushing our teeth. Okay, if we must

Nikki J Nurse:  So it really did help and I learned so much about the power of music and how it does connect and trigger your memories other things too. Like the sense of sight, My mom's favorite color was red. So I made sure to always have red nails on or to wear red lipstick to make sure that when I was making her meals, that they were in a red bowl that she had red sneakers on that, she had a red bag and even like her headphones for her music that they were red. So it it created a sense of calm for her and also it helped her to associate that these are things that are familiar so I am safe. So in spite of the challenges, there were a lot of great benefits from that because I was able to pivot and learn and, you know, a lot of the learning, it took some time, but once we got it, I mean it was good. It was golden.

Katie Wilkinson: Yeah, thanks for sharing those examples too. I think those are really helpful to hear like not everything works for everyone and these you know it took you a while to unlock what worked for you guys and you know your mom passed a couple months ago. How how has the transition been for you since then?

How has the transition been since your mom passed?

Nikki J Nurse: Right. Yeah thank you for the question so my mom you know, it The transition has been tricky because again when you have a cognitive decline like dementia, you as a caregiver are going to be faced with anticipatory grief. So you're kind of like always on alert. You never know when will be the last and there are specifically three stages to dementia. You know, the early stage middle stage and end stage but

Nikki J Nurse:  Within those stages, anything can happen any complication can occur. So, yeah, as a caregiver, you're constantly thinking and you're always aware of that. So when my mom was in the final stages, it was a two-year journey for her on that transition. And it's, it did take a lot on my emotions and also it helped me to understand the purpose of being present. It's not just sitting in a room with her and, you know, texting someone, on my phone. It was really about meaningful moments with her and protecting her peace. You know, not just being in the space and doing what I enjoy or watching something. I enjoy. It was really protecting her peace and, and making sure that I was still honoring her and giving her the dignity that she was deserving up even though she stops speaking. Even though she wasn't able to move on her own, I still honored her as a human going through this journey.

Nikki J Nurse:  so the chance of, so how I've been handling her passing, it has been through a lot of

Nikki J Nurse:  Quiet moments, therapy, pet therapy, too. I've also been working out a lot. I think what has been really effective with me when I'm going through something emotionally is to work on something physically. So because it's like my heart space and I can't touch my emotions. The things that that I would want to control like the sadness and the depression, I, I can't put my hand to it, but what I can do is I can take a walk, I can be outside, I can get the vitamin D, I can go and lift some weights. And and that helps me to process the grief or whatever emotion that it is that I'm feeling in that moment. So I've been doing a lot of working out. They know me by name that at the gym. It's like my cheers. So, oh, I guess I'm aging myself with that. But yes, they know me very well over there. And also I'm trying to learn

Nikki J Nurse:  How to Connect with People Again, Because being a caregiver, I did isolate myself a lot. It was, it was a challenge to be a millennial caregiver because of how


Nikki J Nurse:  How vast the changes when caregiving culture has changed? So it's usually, you know, an older relative taking care of another older relative, but when you are, I was in my late 20s. I was 28, when I started becoming my mom's primary care giver and I couldn't find anybody that looked like me or sounded like me, or had the same struggles as I did, or was even open to learning about new techniques in managing someone's care. So, that was a bit of a tricky spell for me, but now now I'm learning to connect with people. I'm learning that it is okay to connect with others. And to have other people understand that I'm grieving and to speak about it. And and not feel ashamed about the grief. I

Katie Wilkinson: Yeah, I love that after. After my mom died, I remember people would sort of, you know, they sort of like scrunch up their nose and go. I'm so sorry. I was like That's not that doesn't really make me want to like talk to you about, I don't know. Like it's hard to connect when you know, you feel like pity. It's like I'd rather someone ask, I don't know whatever. I don't know how to describe that in further, but it's hard to connect with people afterwards, who have not been through a shared experience. That was a bit of a ramble, but I'm glad you're connecting with people.

Nikki J Nurse: No, you know what? Thank you. I don't really think that was a ramble. I think you described it really well, you're absolutely right. It is like an awkward situation when you know that someone is experiencing grief, it's it's something that we maybe need to work on as a culture, too. You know, changing the narrative and maybe asking the questions, like How can I show up for you right now? Or How can I support you through this or I don't know what to say in this moment except that I am here, you know? So I I think if we can learn to have these conversations and not feel too awkward about it that we can we can allow each other to support one another

Katie Wilkinson: Yeah, yeah. And I mean I totally understand how it can be awkward or uncomfortable for someone to like you know get in the boat with you and talk about it and it's been really interesting to me other caregivers or other people who have lost a parent young in life or you know, people that have just been through a similar experience,…

Nikki J Nurse: Yeah.

Katie Wilkinson: you know, can be easier. To connect with it. Also has given me more language to talk about it with other people who maybe aren't comfortable. Bringing it up. I can just talk about,…

Nikki J Nurse:  Right. Yeah.

Katie Wilkinson: you know, my experience and not try and break the ice for them.

Nikki J Nurse:  Yeah. What else is interesting? Is that I think our culture here is always on green light, you know, we're always ready to go, go fast, you know, Oh she just died yesterday. Well, we need you to get back to work. You know. Wait, why can't we take some time? Why can't we sit and process, right? Not everything needs to go in the microwave. Some things have to go in the stove. Yeah. Do this old school? Yeah, I mean so I think it will be helpful. Not just

Nikki J Nurse:  You know, having conversations around someone who has lost someone who's no longer here, but also loss of a job loss of a pet fur baby or loss of a relationship. We need to learn to understand that it is okay to experience loss and we are safe to process that. So I think that this might actually turn around in a good way. I'm hoping

Katie Wilkinson: I think so. You started to talk a little bit about obviously your platform a lot of your like content and energy and, you know, focuses on self-care. You started to talk a little bit about how you've been taking care of yourself since your mom died.

Nikki J Nurse: Yes.

Katie Wilkinson: And you know, I'd love to know. How did you sort of like first discover the importance of self-care? And what were some of the like early steps or early changes? You took? Once you you know, realize the importance of this?

How did you discover the importance of self-care?

Nikki J Nurse:  Yeah. You know, I did not think it was important. I was in my late 20s and I was accustomed to the hustle. I was always running around trying to do something. I was staying busy, you know, that was my mindset. Like, if I'm not busy, I'm lazy and I'm not doing enough. but, being some, when you have to take care of another person and it's an adult person, it is constant busyness. So much so that you forget to slow down and take care of yourself. So, how I learned about, self-care was burnout? Yeah, burnout burnout came, let me at the door and shut me down. I was so exhausted. I was I was always with the with an attitude and just moody I I couldn't get myself straight. You know, I was breaking out like it was just so bad and I felt


Nikki J Nurse:  Just lethargic, you know, I had like no energy and if you know me, you know, that's not my game. I am always high energy. So uh yeah, it came to a point where I got really sick physically ill and I couldn't take care of my mom, and I did not like that. I didn't like that. Now She couldn't depend on me and that made maybe, maybe it was like a ego thing for me, but I just was not gonna have that anymore. So I tried to figure out what really was going on and I realized, you know, my sleep cycle was off. I realized that I wasn't eating properly. I made sure that my mom had her medication, and her diet was really well. And that we were active for her on her level that she can keep up with. But for myself, I wasn't doing that. I wasn't checking in on me, so I started to get really

Nikki J Nurse:  Intentional about how I was spending my time and trying to figure out a way to compromise our days. So that I had her with her time and then I gave myself an independent time so that I could just do whatever I needed to do to refuel and re-center and then engage with her again. So at that time, being that I was in my 20, self-care was really trending. It was all about, you know, you're a boss baby get your nails done or you you've got black magic so maybe you should just get your hair done. Like it was just a lot of the glam but I was looking for something that was gonna hit me internally, you know, on another level that

[16:50-17:10 crop out dog barking]

Katie Wilkinson: It's like I got opinions.

Nikki J Nurse: Yeah.

Nikki J Nurse: Attention on me please.

Katie Wilkinson: Yeah.

Nikki J Nurse: Um, you know, yeah, but I was really looking for self-care to hit me on a different level. I wanted something that I could practice every day, because every day I was being my mom's caregiver, so, I needed it regular. So, I could, I knew, I couldn't sustain getting my nails done every day, or my hair done every day. So I needed something. And something that I found was,

Nikki J Nurse:  He drinking tea. I love tea and drinking water. I'm constantly thirsty. So I found a way to incorporate what I like, but doing it in a way that was sensory, sensorally pleasing to me. So I would drink water out of a really cool fancy glass and I would get like a gold straw, you know. Um, or when I'm making my tea I would have these really funky diffusers one that look like a robot when they look like a monkey. I mean, I really, I really had a good time and it made me so excited. It gave me something to look forward to at that specific time of the day and other things too, like breathing exercises because in different stages of Alzheimer's,

Nikki J Nurse:  You like initially in the beginning stage you're not gonna have that much time for yourself, you know, because your person is might be in the wandering stage or might be in that stage where they're asking, you all the questions all the time 10,000 times, right? So How would you? How does one respond to that right after the first 96 times? It's like, All right, I'm done with you, But You can't do that. All right, because they're just gonna keep on asking and they remember and retain energy. So you lose it, then they're going to lose it and not even understand why they haven't attitude. So I had to figure out how I'm going to do this. When my mom is in this early stage, asking me the same question again and how I did that was through breathing exercises out, she would ask me like, Hey, where are the keys? Where's the remote? Hey, where are the keys? Where is the remote? You know, after I tell her the 96 time, I'm just like, all right. [Cut out quiet space 

Nikki J Nurse: Where did you put the remote? You know, like it really helped. I mean It was very small and it was very in the moment, but that little quick breath, It was everything for me. It really was like that waiting to exhale moment and I felt so much better. I didn't feel like I was losing control and I think a lot of that happens, you know, mentally you're thinking like I'm about to lose it or I can't I can't control what's happening to you. I don't know what to do and this feeling of lost.

Nikki J Nurse:  Again, the anticipatory grief. You know, this feeling of I have no control. I can't help you. I don't know what to do. You can control what you can control, and that is your breath, your thoughts and your responses. So, I learned that again through the hard way, but I still learned how to do that and practicing it made it become so habitual and then that became a part of my character. So, even when I go out, like now, 12 years later, Whenever I'm feeling frustrated, or I feel a bit of social anxiety, I take a breath. And I've centered myself again, and it does help.


Katie Wilkinson: Yeah, I love that. And I love how you've shared little examples of like a gold. Straw brings you joy in that self-care to you or like your robot diffuser, a deep breath because I think you're right.

Nikki J Nurse:  Yeah.

Katie Wilkinson: I think there's like a misconception that self-care is like getting a massage or like whatever these big things and it's like it's that and it's it's like every day care and you've shared a little bit about,…

Nikki J Nurse:  And daycare.

Katie Wilkinson: you know, little places where you were able to like insert self care into your days, can And I maybe to the point of like it might be a massage or maybe a tea diffuser like self-care looks different for every person. Can you talk a little bit about how someone can identify like their unique self-care needs? And are there any resources you have for someone to help figure out like…

Nikki J Nurse: Yes.

Katie Wilkinson: what might work for them?

Self-care looks different for everyone. How can caregivers identify their unique self-care needs and preferences?

Nikki J Nurse:  Oh absolutely, that's a great question. So I think self care is supposed to look different on and on everyone. Everyone is unique. Everyone is different and that is lovely for myself. I am a glam minimalist. So because I come from a background of fashion, I'm always deliberating off of that. So as a minimalist I like to have you know like capsule wardrobes things that are structured with a number. So like maybe three tops five bottoms, things like that and then adding a slash of glam. So when it came to my self care it was reflected reflective of that. So when it comes to other people, though, I think what is going to help them, understand what self-care should look like is

Nikki J Nurse:  Knowing your personality and understanding your lifestyle. So when you know, your personality and their 10,000 personality tests that you can take, but when you understand your personality so whether you are a quiet person, maybe you're an introvert. Extrovert, Maybe you are very vibrant. Whatever that personality is now putting into play your lifestyle and your lifestyle will include, um, your financial budget. It will also include your health status and other things, like, your social circles. That's all gonna take a part in your self-care because when so specifically to social circles, when you are going through something emotionally, it's best to understand that, not all your friends, or even your family members will be able to resonate with what it is. That you're going through, because they're not caregivers, or they're not a caregiver like you are, right? So being intentional about

Nikki J Nurse:  Who you speak to about what you're unpacking about what you're going through emotionally that needs to be very on purpose. And you need to be very mindful of that, maybe even going outside of that circle and hiring a life coach or a therapist. But someone that can really help, you understand what you're going through and support you through that.

Nikki J Nurse:  And then when it comes to your health status, self-care needs to be very specific to that. So as a person living with type 2, diabetes myself here, could not look like having chocolate every night. Right? Because my glucose was not having it. Oh, so myself here when it came to emotional uproar it for me, was about taking a small moment to journal and journaling. Thank God. It's not just restricted to writing with a pen and paper which I think is really great, but when you're on the go and you're constantly like trying to get this wanderer to get back into their room to get back into the bathroom to get back into their room. I mean,

Nikki J Nurse:  You might not have time to get that piece of paper and write it in the book. So I journaled on an app and I used my phone with that, a lot of the times, but yeah, back to, 

when you are trying to create that self-care moment for yourself, really understanding about your health status, that would really help as well and then your financial space. So, as much as I love a good massage, I know it's not sustainable to have that every month, or maybe not even, every two weeks.

What are some affordable or accessible self-care options that caregivers can explore without stretching their budgets?

Nikki J Nurse:  So what I liked to do was create a list of the things that I really enjoy that. I know, I can't do every day or even every month, but I would write it down and then I would have my circle which would be encompassed of my family and my friends. And I would make a birthday lists for myself. And when my birthday came around, I would ask for these gift certificates, like, Hey, I would like a massage, I would like this bottle of perfume, you know, what I mean? Like so. So that helped me with my financial space when it came to self care and all. So um really really taking advantage of all the free services that were out. There, there are free coloring books or pages that you can download to just color and do some, you know, movement meditation meditation is great. When if you could like sit down and actually meditate like close your eyes, do the breathing, but sometimes you can't. Sometimes, you want to go.


Nikki J Nurse:  So moving meditation is super awesome because you can literally go with what you're doing and still find that sense of serenity. So that is really helpful. I'm just finding out what the free resources are going to the library, and finding out there are any free audible books books that you can listen to maybe that would be the way that you have those self-care moments. And, and I think once you can incompreting compass, all of those things, those areas, those three specific areas, then you can really figure out what self-care will look like for you.

Katie Wilkinson: Yeah, I love that. You answered sort of my next question around like, you know, a lot of care. Givers are no, it's good but like a lot of caregivers are, you know? Finances are tight and, you know, people some people don't have the resources, like you said to do these sort of extravagant things, you mentioned, you found or know of, you know, free resources that are available for different things. Do know them off the top of your head, like, Can you share where people might look if they're looking for free resources, like what you just mentioned like coloring sheets, or do you have a, You know, meditation app that you like?

Nikki J Nurse:  Oh yeah, yeah, totally. So the library is is an amazing source to find a ton of different free, available activities that you can get into. And it's really good too because it's also a mental exercise. And you can also share that with your loved ones, depending on the stage that they're in, you know? So if you have the coloring pages, you can have your loved one color with you. And that's a really great bonding activity. Another thing that I like, I love apps. I'm always with my phone safe connected to me. So one app that I use for meditation is called insight timer. So I had mentioned before like my sleep cycle was kind of off and on insight timer. They have a ton of sleeping meditations and those meditations are really powerful. They are like adults bedtime stories, it's like Peter Pan or Alice in Wonderland. It's really cool. You know, they make it, they make you feel the fair like, oh, but also

Nikki J Nurse:  Soothing, I don't know how they balance that but it works. And then there's also like guided meditation which is really great. I do also have like the peloton app and that is helpful because they have different routines like walking routines, they have yoga breathing exercises on there as well. So I like that. I can still move around and still show up for myself in that way. But those are well Peloton isn't free. Let's read for like 30 days, but as far as the app goes, insight timer is a free app and also the libraries are really great resource and I would, I would, I would even mention using your directory wherever you live. And asking for free therapy services because that is also available to a lot of cities.

Katie Wilkinson: Yeah, I love that. Thanks for sharing, all that, and something that keeps standing out to me, as you talk is like, Like creating moments of self-care doesn't have to be this thing. That's like, isolated from the rest of your day where you carve out two hours to sit down, you can like build in these moments, you know, amongst all the other, you know, chaos of caregiving.

Nikki J Nurse:  Yes.

Katie Wilkinson:  I don't know if this was true for you, but I do know that many caregivers struggle with feelings of like guilt or like they're neglecting their loved one when they take time for themselves and

How can caregivers embrace the importance of self-care without feeling guilty?

Nikki J Nurse: Yeah. Yeah, Guil is like the worst boogeyman ever. What a bully? I mean. Good God. But guilt is real and it was something that I faced throughout my 12 years of being my mom's caregiver like to the very end. I still had those little 10 things of of guilt and I I really

Nikki J Nurse:  I really think it boils down to a mindset shift. You have to give yourself permission if you have to make it a mantra, then so be it. I give myself permission to show up for me. Today, I am allowed to take up space for me today. You have to give yourself permission to do that and then, you can start to break down this reason as to why you feel guilty. So for me, my reason for feeling guilty is my culture, you know, I come from a very hard working family and to sit down and relax is a problem. It is taboo, you cannot do that. What are you? Are you sitting down? No, you can't do that. Oh, I had to, I had to also, you know, find a way to


Nikki J Nurse:  To break that. It's like it almost felt like a generational curse like You know, I'm breaking this down. I cannot I need to take a break and it is okay for me to sit here with my feet up or it is okay to just sit and listen to some music with this lady. Like I please allow me that and having the conversations with my family members or even with some of my friends like who would have wanted to see me and spend time with me and I was tired

Nikki J Nurse:  Saying no and actually meaning it and making it a complete sentence. Like, Oh, I'm not putting Dot Dot, it's just the dot. That's it. It's a no, I'm not going it and and you know there was fear with the guilt, you know. So I was afraid that people will be upset with me or disappointed and I had to again, learn to get over that and give myself permission to show up for me because if I broke down and got sick, again, who was going to do what I do regularly every day for my mother and even for myself, no one just me. So

Nikki J Nurse:  I had to start showing up for myself in that way. And I'm really, I'm really proud of the work that my mom and I did in this caregiving journey because we helped each other, find the strength in a lot of the debilitating situations. You know, when you are surrounded with this, this enormous amount of guilt, it does feel debilitating because you don't feel like you're deserving of you know, taking a longer shower or going for a walk outside. Like you, you don't feel like you should be doing that because you should be with your person, you know? But what they're neat, you need to find a balance where you have independence, and they also have independence. You don't want to become so dependent on each other that you start to lose your identity, they will also lose their identity in you. So, we need to start learning how to find the balance of not feeling guilty figuring out where that guilt is coming from. And

Nikki J Nurse:  Processing it, and finding a way to just show up for ourselves without the guilt, right?

Katie Wilkinson: We had a therapist from cerebral on the podcast and she talked about self-care as like a and, and the guilt that can come around this or as a What did she say? It's like a principal of mattering. Like when you're caring for someone else,…

Nikki J Nurse:  Oh,

Katie Wilkinson: there might be different levels of independence. So someone requires more time. By way of like activities of daily living in a sort of thing. But if you can like accept that you don't matter any less than that person, just because the level of independence is different, she was like, then it makes it a lot easier to take like Get rid of this, you know, feeling of guilt. And I thought that was interesting.

Nikki J Nurse: Oh, that's

Katie Wilkinson: She said it much more eloquently than I just did. But I can, I can link.

Nikki J Nurse:  oh yeah.

Katie Wilkinson: I can link, I can link the podcast because when she said that I was like Oh that you know. It changes it for me, even the way that I think about self-care. I matter no less than this person. This person just has,…

Nikki J Nurse:  Right.

Katie Wilkinson: you know, greater Has less independence than I do. And so that was interesting. You Yeah.

Nikki J Nurse:  I think that that is interesting. Yeah.

Could you share some insights & examples of how you established and maintained boundaries as a caregiver?

Katie Wilkinson: And you started to talk about, you know, boundary setting and saying no as a form of self-care. Can you talk a little bit more about how you like established and maintained boundaries and how what impacts that had on on you and your mom?

Nikki J Nurse:  Oh, okay, so yes, so saying no was, I mean, it makes you sweat. It really feels like a workout when you first start it because you haven't done it in a while, right? But it's a muscle, okay? So if you think about it, that way, you should practice it, you should practice it regularly. Get comfortable hearing yourself, say it like, Okay, no. But with my mom and I, I, again, back to finding those moments of independency, I had to affirm with my mom, when I was not available. And even though we lived in the same house, there were times where I wanted to just be in my room.

Nikki J Nurse:  And just laying down listening to an audible and with the cameras in the house, it made it very functional for her to still, you know, do her wandering or whatnot and not getting any problems or trouble. So she was still safe. And I felt relieved that also helped me with the guilt is like protecting my place. How can I do that? So, I don't feel like I need to be watching her all the time. Well, I can incorporate technology, I can get my own Amazon echo. I can get my ring cameras, I can do all the things that get all the locks. You know what I mean? So, that also help with the guilt. But back to saying, no, I had to practice with my mom, and thank God, I took advantage of her repeating the same question because then it helped me to repeat the same answer. Hey, it's still a no, yeah, it's a hard note too.


Nikki J Nurse:  Again, but I, again, I, I took that challenge and I guess I transmuted that energy because when it came to my mom's care team, and how they were treating her at a specific stage in her dementia journey, I had to affirm no on her behalf. I had to learn the power of my voice as her advocate, and that in turn helped me to become my own advocate with my own health and back in the days, I would always listen to the adults. I always listen to the doctors and everyone who's in charge and I never took the time to do my own research, and understand what it was that they were saying or diagnosing me with. But when it came to my mother, I was like, so obsessed with her. So I pay attention to every detail and when it came to her diagnosis, I read all the books and try to act all the questions. So I was really involved

Nikki J Nurse:  So, when it came to her care and and speaking with her career team, I was very adamant about saying, No, no, you will not speak to me about her with her sitting next to me, you will speak to her. She is here and I'm here to support You know, and even when she was in that stage where she was forgetting a lot of her words, she's still a human deserving of dignity, she still a human going through this experience of dementia, but she's still a human. So you're gonna respect her and treat her as thus. And yeah I mean it takes practice until you start using it as a superpower.

Katie Wilkinson: do you remember like the, I don't know the tipping point between You know, sort of like a tentative. No. Like I think I'm gonna say no, as a full sentence and feeling like empowered by that. Do you know, if there was like a tipping point or like a certain amount of time, it took to practice it.

Nikki J Nurse: Yeah, it's like a really long time for me because because I had a lot of pushback from family and friends like Como and I mean, they are so freaking convincing like Come on Nick, don't you want to go out? No, I'm tired. Come on Nick, I'll pick you up. No I'm still tired. So it took practice. It really did. And what what helped me though with the practicing is really listening to my body? I I learned that when my mom was in the final stages of Alzheimer's because she become nonverbal. So, all that I can do to connect with her is to look and listen and pay attention to our body language. And that helped me to pay attention to my own body, and how I was moving. You know, I remember my mom, when there were too many people in the room, she would, she was start to Tear off her nails.

Nikki J Nurse:  And I interpreted that as she's nervous right now she does not feel comfortable and then other things too like she would rub her leg and I would indicate that as okay maybe she's experiencing pain you know because she did have arthritis. So yeah, that helped me to understand how to listen to my body and to really to really show up for myself in that space. So when I had a friend who wanted to take me out and I knew I wasn't feeling well, I knew I was just exhausted from the day. I said no. And I affirmed it with

Nikki J Nurse:  A period. A full stop because it didn't need an explanation. No, is still no, and it's good as gold and later on, you know, a lot of the friendships that I did have they ended up dissipating. Like, they ghosted on me and and I do understand why. Because again, not everyone is going to be in your role, or understand all the things that the sacrifices that you have to make. And the, the time lapses and consumption that they won't really understand that especially if you're young in this journey. So I, it was hard to let them go. But at the same time, I was really glad that I was able to stand up for myself and feel empowered by that. And then, you know, practicing it with my mom's care. Team, that came easy because it was my mom. So, I was fighting for her, I wasn't fighting for myself, but when it came to me, like, I'm like,


Nikki J Nurse: I just want you to like me or I don't want you to be mad at me, don't get disappointed but for my mom, I don't care. Listen, no, you're not giving her that she is very petite. She can't handle that dosage. No. Come back again, with something else. Why is that, where do I have the energy for her? And then for me, It's like all this. I'm like timid all of a sudden I'm having anything to say. Yeah, I took a lot of intersection.

Katie Wilkinson: That millennial urge to be light.

Nikki J Nurse: Ure. Oh, I don't like it. It's for the birds.

Katie Wilkinson: Yeah. Well,…

Nikki J Nurse: No, thanks, we know.

Katie Wilkinson: I love that. Thank you for sharing about, you know, it takes some practice and it's probably gonna feel a little bit awkward to start, but like you obviously feel empowered by it and…

Nikki J Nurse: Yeah.

Katie Wilkinson: passionate about it. Now the ability to set a boundary and like stand firm by it. So I think that's encouraging for other people to hear.

Nikki J Nurse:  Yes.

Can you talk about how jewelry-making became a source of joy for your mom and contributed to your daily routine as a caregiver? How might this translate for other caregivers?

Katie Wilkinson: And you and your mom started making jewelry. And that was a thing that brought her and…

Nikki J Nurse:  Yes.

Katie Wilkinson: you both joy and also gave you some sense of routine. And can you just talk about this experience and how that finding something that worked for her like a hobby? That brought her joy? How this might translate to other care givers?

Nikki J Nurse:  Yeah, I think it also boils down to the question that you asked earlier about trying to figure out what your self-care should be like. So Making jewelry for my mom. And I was like self-care because it's very therapeutic. When you are in

Nikki J Nurse:  in that mode, that work mode, you're grinding, you're using, you're using all of your elements, really? You're using your sense of touch, your sense of sight. Sometimes. Even your sense of smell because different products smell differently, like wires to elastic, even certain beads like the texture. Some are smooth, some are course. So you're you're brain, is triggering all of these sensations. So, it does become like this therapy moment. When you are sitting down doing the same repetitive task putting one course bead into the wire, putting the smoothie next to the course be and just repeating it. So it was really calming for my mom and it was also very common for me. And my mom was really creative. So, she would come up with all different types of way to, to create these necklaces or bracelets. I think. Also, it gave

Nikki J Nurse:  sense of purpose and a sense of self because it was a task and it was a job and

Nikki J Nurse:  You know, even today when you have a job, there's so much pride that comes with that and the pride comes from it. You're showing who you are in this specific role, right? So it becomes a part of your identity and it's always very tricky. You know, when you think about how to do the work life balance when work is your life, right? But when you can separate yourself from the work and create an identity outside of that, then you can find that sense of balance. So, for my mom, having the job of making jewelry, it did give her back that sense of purpose. Like, Oh, I'm here to do something. I'm here to take care of this is my responsibility and that gave her joy. Yes. But it also helped her to identify who she was. I am important. I am doing something that is important.

Nikki J Nurse:  I am important and you know that that she kept on repeating it too so that became her mantra and I I encourage all caregivers to find some activity that you can connect and bond with your loved one that can give them back that sense of self, that sense of purpose and also fun, you know, have have a good time with your person. Dementia is what it is. But in the moment, every day, being present for your loved one is something magical and not every day. Obviously is gonna feel like, Oh my God, this is a rainbows in the sky. No, of course not but you can still make those magic moments throughout the day, you know, or maybe skip that day and go to the next, you know, start a fresh. But with my mom, we didn't just start doing jewelry. We actually did a whole bunch of other activities until we found jewelry and jewelry stuff. But before that, you know, I try to get her to do yoga and like going to after schools and helping like.

Nikki J Nurse:  Kids and trying to be active in the church like doing the things that she had enjoyed even joining. Like the why with her? And that was always something else because I was super young and it was all these senior citizens. It was like, I was invading their space, but it is what it is, you know, I just tried different things to see what she really gravitated towards, and eventually making the jewelry had ended because her, she had progressed to a different stage and that turned into a bonding activity of coloring with her and listening to music and then eventually that evolved into just watching movies with her and bonding with her that way like holding her hands and talking to her or rubbing her shoulders and just connecting with her. That sense of touch is really powerful, so I would just encourage all caregivers to do that. Find something fun. Some activity that you're gonna also enjoy that you can do with your loved one.


Katie Wilkinson: Yeah, I love that. I love the jewelry making. It was like, you know, took some trial and error, but you found it. And then I I really like what you just shared about like once that wasn't possible anymore, coloring, watching movies. You know, you've spoke about it already…

Nikki J Nurse: Yeah.

Katie Wilkinson: but like the sense of trying to maintain her dignity throughout and not just saying, Well, she can't She can't call her anymore so we're just gonna she can just in bed, you know, like I like that you still found activities that you know, you guys could still stay connected and adapted to you…

Nikki J Nurse:  oh, Yeah.

How has ALCIB become a vehicle for raising awareness about Alzheimer's? What impact do you hope to make?

Katie Wilkinson: what she was able to do so. And I really like that, you obviously still have, you know, jewelry is obviously still like a key part of your life, your platform, a log cabin in Brooklyn has, you know, transformed from, you know, an educational blog to like a full-blown brand and jewelry collection. Can you tell us a little bit about that and how you're using it as a vehicle to, you know, raise awareness and advocacy for Alzheimer's.

Nikki J Nurse: Yes, absolutely. I was really passionate about a log cabin in Brooklyn from Jump Street. And when I first started it, really was a blog. I, I had moved into the basement of a house that was next door to my mom and that basement had wood panelings everywhere. So, I was living in a log cabin and at the same time, I felt like I was rebuilding my life because I had just quit my big career and I'm trying to help my mom who's my best friend, but she didn't seem like my best friend anymore. I'm trying to relearn her and also learn who I am. Like, do I always have to be busy like why can't I just relax? Why am I so anxious? Like learning all these things? And I wrote about that, I wrote about how how difficult it was to face these things and feel so low. Like you're all alone, you just got thrown in there and

Nikki J Nurse:  And that eventually led into my mom and I finding that, that activity of making jewelry. And then we used to do a lot of farmer market, grocery shopping. And I remember, someone had stopped. My mom and asked her where she got her necklace from, and I had said, Oh yes. She made that. And they were like, Oh my God, are you selling Well? We are now okay. So we started at Etsy shop and then eventually, I was able to open my own website where I would sell our products and I wanted I asked my mom like about this this new lifestyle that we were on and the journey that we were taking and I asked her, how comfortable she would be with me sharing about our story and she was really comfortable with it. She and I think also because she was a nurse, she also had a passion for healing and helping people, so

Nikki J Nurse:  I eventually took our story and and put it into social medias, which was new at the time 12 years ago. So then I started I started sharing our story. I started talking about what, what our day was gonna look like, or making videos with my mom, making the jewelry, or, and it was like mundane things, you know? I would show my mom, help me put the groceries away and because again, you know, when the stages they do shift, you don't know what's gonna last for six months or two years. So, sometimes, when my mom, she was able to help me with the groceries and and she was able to put the grocery where it should be like, you know, frozen food in the freezer type of thing. Then it got to a point where she was just leaving it on the floor. So, okay, now we have to shift, we have to pivot, so maybe if you can't help me, put the groceries away, maybe you can help me. You can help hand the groceries to me and I'll put

Nikki J Nurse:  So, you know, I would share all these stories and I would get a lot of feedback like positive feedback from the community and I ended up growing a community of amazing caregivers and it was so it made me feel so validated. When I heard that or read read a lot of their messages saying, how they've never seen someone who looked like them caring for a loved one and doing it in such a positive way. Because I think the takeaway had always been that this negative light on dementia or you're only seeing it at the final stages. But even if you did see it at the final stage, there's still grace in that. You know, like my mom was at that point where she wasn't speaking, she wasn't able to move, but I had fidget pillows for her and I could put, she can still move her fingers. So I would put the fidget pillow right near her fingers and she would play with it for hours, you know? Or I would have like


Nikki J Nurse:  My cat and I would put him on her bed so she could at least um, put her hand on his on his fur. You know, and feel some type of sensory stimulation but there's always something to find that can be helpful for both you and for your person. So I'm glad that I was able to show that on our social media platforms but also share it into what we were doing at LC the log cabin in Brooklyn because it really did evolve into this.

Nikki J Nurse:  I I think like such an amazing space for wellness and, and not just a trendy. Oh, what are you doing for self-care this month? Type of situation or conversation? Now, it was more about, How are you showing up for your overall well-being today? Yeah. Today, how are you doing? Did you drink water yet? Oh, did you go outside? Did you take your multivitamins? Because there's gummies for that, you know, so I like that It has translated to something even more impactful for caregivers and the community.

Katie Wilkinson: Yeah, I love that. And I mean you can feel that through your social channels, they're talking to even just on your site like even if you just landed on your site without having like heard you speak before, I think, you know, the heart of this is very clear. We like to ask You're welcome we like to ask everyone as like a final question to the podcast you know looking back now and…

Nikki J Nurse: Oh, thank you.

What do you wish you had known when you first started caregiving (specifically about expenses, insurance, benefits programs, etc)?

Katie Wilkinson: you have 12 years of experience. Obviously life is changing for you now but you know what do you wish you had known at the very beginning of your caregiving experience that you know? Now.

Nikki J Nurse:   Oh, I wish that I knew about intuitive caring. Um, I like, I had mentioned before, you know, I used to just believe the adults and believe the doctors and just don't even do my own research just trust blind faith, right? But throughout my years, on this journey, I because my mom was my person, and maybe because I was obsessed with her, and I just paid so much attention to her. I really knew her. I understood her. I knew when she was nervous, I knew when she was afraid, I knew when she was happy. And I knew when she had a uti, and, and those things didn't come with, like, Big bells and whistles.

Katie Wilkinson: Again.

Nikki J Nurse:  Yeah, those things didn't come with bells and whistles. It had no grand announcements. It was just a knowing. And I, I did doubt myself a lot and not just because, you know, I wanted to because it's Sunday. I doubted myself because people doubted me, hey, like, oh, you don't know what you're talking about. Oh, you're being dramatic. Oh my God. Can you just let her do whatever she wants to do? And I wish that I had known earlier to trust myself. Because a lot of this caregiving hustle is about intuitive care about just knowing your person, understanding what they're going though, putting yourself in their shoes and being empathetic to that. So that would be the one thing that I wish I knew sooner to just trust my intuition.

Katie Wilkinson: Yeah, I think that's so empowering to I think it's true. You see a doctor or whomever that's like in authority and, you know, they must know better and or it's easy to,…

Nikki J Nurse:  Right.

Katie Wilkinson: like, explain something away. I, you know, I did this to myself where you like, Let's say a gas, let myself maybe that's aggressive, but like I would explain away things that I was like,…

Nikki J Nurse: No, you're right.

Katie Wilkinson: No, no, no, it's this thing or, You know, this sort of thing and I agree with you. I wish that I had like paid closer attention to my intuition earlier on, in my own caregiving journey, because I think that would have Been helpful at the beginning. So that's super helpful to share what,…

Nikki J Nurse:  Yes.

Katie Wilkinson: you know. Now, to those that are, you know, beginning their caregiving journey

Nikki J Nurse: Yeah, Katie you're right. It is gaslighting. Yeah, we gaslight ourselves.

Katie Wilkinson:  Yeah. Yeah.

Nikki J Nurse: We allow others gaslight us too, because we trust them, but why is it that we're trusting them so much? Where's the validation coming from? Why do we feel like they can be validated but not our voice? Why? I think that's a great introspective conversation to have with ourselves like, Okay, so what is it that? They're giving me things that I can't give myself. Is it that they know what they're talking about? Okay, so now I'm gonna do the research so I know…

Katie Wilkinson: Yeah.

Nikki J Nurse: what I'm talking about, you know? So I think that would have helped me as well, so I would have felt more sturdy and confident in my intuition, like, Wait a minute, wait a minute, wait a minute, when someone has a UTI, these are these are the symptoms that occur. These are what I'm seeing and witnessing in my mom, so she needs an antibiotic. Yes, now immediately actually right.


Katie Wilkinson: Yeah, I I love that if people would like to, you know, join your community and follow along with you online. Where can they find you?

Nikki J Nurse: Yet, what you can find me on all, practically all the social media platforms. The big guys. So I'm on a log cabin in Brooklyn on Instagram and on Twitter Pinterest. And I do believe Facebook,

Katie Wilkinson: Awesome. We'll make sure to tag you everywhere so people can find you Nikki.

Nikki J Nurse:  Thank you.

Katie Wilkinson: I really appreciate you sharing. So honestly about, you know, your caregiving experience and what you've learned and you know, how you have baked in care, self-care moments into your journey.

Nikki J Nurse: Thank you so much. It has been such an honor. Thank you for making space to this conversation. I had such a pleasure. Thank you again.