The Caregiving Soul:

When Caregiving Ends

Hosted by Dannelle LeBlanc, April 10, 2023

When Patti LaFleur’s mother, who had been diagnosed with dementia had to move in with her and her husband seemingly overnight, they didn’t know quite what to expect. When she began sharing their care partnership on TikTok as @CarepartnerPatti, Patti and her mother’s journey became a comfort and resource for others navigating similar experiences. Since her mother’s passing in 2022, Patti has refocused her energy on her own healing and providing resources about dementia and grief through her social media and website. 


About Patti LaFleur

Patti LaFleur is a Kindergarten teacher and former caregiver to her mother Linda, who had dementia and type 1 diabetes. After being diagnosed with dementia in 2017, Patti’s mother moved in with her and her husband in May of 2020 and lived with them until her passing in 2022. Patti is now navigating the next phase of her care journey – life after being a full-time care partner and grieving the loss of her mother. Patti shares her caregiving and grieving experience on her popular TikTok and Instagram accounts. 


[00:00:00] [Music] 

[00:00:03] Patti: So, my mom was diagnosed with dementia and my dad cared for her for as long as he could until it became unsuccessful for him. He ended up actually in the hospital, and so she moved in with me overnight. It was right at the start of the pandemic, and she moved in with my husband and I. My husband was extremely supportive. In fact, it was his idea to have her move in with us.  

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[00:00:35] Dannelle: When Patti Lafleur’s mother, who had been diagnosed with dementia, had to move in with her and her husband seemingly overnight, they didn’t know quite what to expect. Patti knew she wanted to give her mother the best care possible and when she began sharing the experience on TikTok as @CarepartnerPatti, the journey became a comfort and resource for others.  

[00:01:04] Since her mother’s passing in 2022, Patti has refocused her energy on her own healing while continuing to provide resources via social media and her website about dementia as well as the grieving process.  

[00:01:23] Welcome to “The Caregiving Soul”. I’m Dannelle LeBlanc. 


[00:01:30] [Music Ends] 

[00:01:30] Patti: There wasn’t really a decision to be made when my dad ended up in the hospital, but then when decisions were being made, he was the biggest supporter of keeping her at home with us and allowing me the space and flexibility as a wife and a partner to really be there and show up for my mom. 

[00:01:54] Dannelle: What a precious thing to have given to you. And it just really illustrates the huge difference it makes when we have support, versus when that kind of support, and awareness – 

[00:02:11] Patti: Mhmm. 

[00:02:11] Dannelle: – even, is not present.  

[00:02:15] Patti: Yeah, and it really allowed him the space to build a relationship with my mom too, in a way that he wouldn’t have been able to had she not lived with us. Right? They always got along, but they got to have such a more positive relationship. Even though my mom wasn’t able to recognize him as a son-in-law and recognize me as a daughter. And his mom, when I speak of people that were really involved in my mom’s care, his mom was someone that was really involved in my mom’s care as well. 

[00:02:48] I think the challenge came when my mom passed and I was so heavy and deep in my grief that I didn’t necessarily recognize that my husband was also grieving my mom, and that I think became actually a challenge for us. He was so supportive and so helpful throughout the process, but then when I was grieving, I didn’t recognize that he was also grieving my mom. So, I think that’s something that now I’m able to recognize and support and be a partner on. And he understands that, he’s lost a parent, but now I reflect on that and I’m like, oh, he was grieving too. 

[00:03:26] Dannelle: And that makes perfect sense, and I think that that is human and normal. When you lose a parent, one that you loved and cared for so much, then it’s no wonder that you can’t see beyond, the grief that you’re surrounded by. So, I think that the timing of that and you being able to reflect and recognize that now, versus the immediate – 

[00:03:58] Patti: Mhmm.  

[00:03:58] Dannelle: – loss makes sense. Patti, you know, so there’s so many wonderful things that happened for you and for your husband and for your mom and your mother-in-law, everyone involved in the care for her, but it does not mean that it was easy –  

[00:04:20] Patti: No.  

[00:04:20] Dannelle: – obviously. Can you share with our listeners what some of your biggest worries were about having your mom move in with you, especially when, with it being an overnight situation, and what kind of adjustments did you have to make? What, what were the hurdles you had to overcome?  

[00:04:42] Patti: I think with her moving in with me, I just really didn’t know what I didn’t know when she moved in, I guess. Like, I was thrown into this and I didn’t know where to turn, right? I didn’t know what resources were available. When she had gotten diagnosed with dementia, they didn’t offer a ton of resources, which I’m learning is more normal than not. 

[00:05:06] And I think that for me, one of the biggest hurdles or the biggest worries was from a safety standpoint. I worried a lot about her getting up in the night. I worried about her falling. I think that the physical demands of caregiving concerned me more than the emotional or financial barriers that there were. I was constantly wondering, like, what was gonna happen and was gonna not allow me to keep her safe in our home.  

[00:05:41] I felt like emotionally it was hard and painful, but I was really able to separate my mom from the disease and really, like, when I was mad or frustrated, I was taking it out on the dementia, not on my mom. So, I feel like emotionally, I was in therapy, you know, I had a good support system of friends. I had a beautiful online community. I felt really supported emotionally, but I just constantly worried about when was she gonna reach a point that I wasn’t gonna be able to successfully care for her. 

[00:06:15] I think I probably asked my husband that on a monthly basis, like, okay, like is it time? Can I still care for her? And he continually reminded me that we’ll for sure know if we can’t. And I was, I was totally able to care for her in our home until her last day, which is really beautiful and amazing and I’m shocked, you know.  

[00:06:38] I mean there was all these conversations we kept having about what ifs and what happens when she progresses or if she stops talking or all of these things. And a lot of my worries didn’t come to fruition in the way that I thought they would.  

[00:06:54] Dannelle: Yes. When we look back on all of the worries that we have and the constant adjustments, it’s so stressful. You mentioned the point about taking out your frustrations on the disease versus on your mom as a person, and being conscientious about that distinction and when speaking and hearing from people who are caring for a loved one with some type of cognitive disease, there’s an emphasis on the present moment and how to connect with a family member, friend, loved one in the present moment, and I’m wondering what that looked like, what that meant for you? 

[00:07:49] [Music] 

[00:07:50] Patti: I continually just tried to remind myself to slow down, that every moment that we had was an opportunity to connect, whether that’s meal times or whether that was doing an activity together. My mom and I did a lot of activities together. We crafted, we painted, we danced, we were constantly doing things together and my biggest reminder in those moments was to really slow down. 

[00:08:21] There was always gonna be time to get the dishes put away or to sweep the floor, but there were just some really beautiful, quiet, connected moments that we had, and I really tried to hold onto those as much as possible as a way to stay in a positive relationship with her.  

[00:08:45] [Music Ends] 

[00:08:45] I mentioned that she didn’t know my name and she didn’t know I was her daughter. She thought of me as her really good friend. That’s the way that she identified me. And that just really speaks to the fact that we were able to maintain such a positive relationship and stay so connected to each other. 

[00:09:04] I think it’s so easy to get caught up on doing things or doing things to the person living with dementia, but for me, as I really shifted my mindset into the partnership I was able to focus on those moments of connection. And then as her disease progressed and those moments got a little bit fewer and further between, it really helped me to just slow down and focus on those times where I really felt like we were in a positive relationship with each other. 

[00:09:39] Dannelle: That’s so beautiful. I’m so glad you shared about slowing down. It’s kind of like, the universe telling us, take a breath, and pay attention to those small moments. You’ve built this huge following on TikTok and Instagram sharing your care journey. What’s it been like for you building this community?  

[00:10:06] Patti: It was all really unintentional. So, if you look at my Instagram, in four years back, it was my personal Instagram. It was just what I shared pictures of my friends and I doing stuff, or my dogs. And then my mom moved in with us and she became my world. She became my life. I wasn’t doing cute things with my dog and my friends. I was doing cute things with my mom. 

[00:10:31] So, I just started taking pictures and posting videos on our story and then using a dementia hashtag. And I got connected with other caregivers pretty organically. I have an amazing group of friends, but they are not caring for their parents, and so they didn’t get what I was going through. I joined some support groups. There was a lot of spousal caregivers, not daughter or son caregivers, and so they were experiencing different things.  

[00:11:02] So, I started sharing our story and then at that same time, I was also looking for connections, and so I made some connections. I’ve made some really beautiful friendships with people across the country. I mean across the world really, but across the country that I have now even had the opportunity to meet in real life and spend time together. The connections, as far as friendships that I’ve made have been, there’s nothing like it.  

[00:11:33] And then since my mom has passed, I’ve really used my platform as an opportunity to advocate for caregivers, advocate for people living with dementia, share our joy. I truly believe that there’s still a big stigma around dementia and Alzheimer’s. You hear that word, and you picture something, and that picture isn’t typically my mom, you know. You picture some sadness and life is over and my mom lived life and there’s a lot of caregivers out there that are providing these opportunities for their loved ones to live. 

[00:12:07] And I’m really thankful that I am still being so vulnerable in this space because I continually get messages when I’m talking about grief or I’m talking about caregiving about, “I feel seen, I feel heard”.  

[00:12:21] Dannelle: Yes. The beauty and the power of that community, both in giving and receiving – 

[00:12:30] Patti: Mhmm.  

[00:12:32] Dannelle: – is so hard to walk through our grief in a public way, and I thank you for continuing to help support others and ask how are you doing? 

[00:12:49] Patti: Well, grief is weird. Some days are harder than others. Some days feels like my mom just passed yesterday and other days it feels like it’s been years. I think that by continuing to share her story, it really allows me to still feel her and honor her and let her sunshine live through me. 

[00:13:15] And I’m a processor, like processing my emotions online, I’ve been sharing my journey so vulnerably for three years, it would feel weird to not be vulnerable in my grief as well, right? My husband kind of jokes like, you don’t need to talk to me about your grief because you talk to millions of people online about it [Laughs]. Like – 

[00:13:37] Dannelle: [Laughs] 

[00:13:38] Patti: And I mean therapy and journaling and giving myself the space to know that I’m gonna be sad about it probably for the rest of my life, but what are the coping tools and strategies and things that I can do so I can live. I can’t be in a place where I’m just sad, but I can recognize that everything’s gonna have maybe a tinge of sadness for the rest of my life.  

[00:14:03] Dannelle: Yeah, it’s both, isn’t it?  

[00:14:04] Patti: Yeah. 

[00:14:05] Dannelle: The joy and the sadness go together. We can’t really have one truly without the other. So, this journey, our caregiving journey and life in general, sometimes we notice the same lesson coming back to us, and we have to keep learning it and relearning how to navigate it. What’s that lesson been for you? 

[00:14:33] Patti: I think I have two. [Music] I would say my journey in caregiving would be this continual lesson on patience and granting patience to my loved ones, but also granting that patience to myself. I think that that was a lesson I was continually learning. It felt like all day long I could be really patient and kind and compassionate to my mom, but then when it came time for me, I didn’t give myself that same patience and grace. 

[00:15:09] I would think about things, and I’d let myself kind of live in this negative space because I was giving so much to others, which kind of ties into the other lesson that I continually go back to, and it’s this piece around loving myself. And, I think for me, one of the hardest parts of losing my mom was it felt like I lost the person that gave me unconditional love. And I need to learn how to love myself like my mom loved me, and that is hard.  

[00:15:43] I have spent a lot of time not knowing my value or my place or what is next for me, and I just have to remember to give myself grace and give myself patience. There is this peace around learning to love myself. 

[00:16:01] [Music Ends] 

[00:16:01] Dannelle: Thank you so much for sharing that. You do deserve that love. We all deserve that love and learning to give it to ourselves feels really kind of strange. 

[00:16:14] Patti: A hundred percent. And I think that sometimes if you are a caregiver or you are someone who loves others hard, it can feel kind of selfish to love yourself. And I think I just continually have to remind myself that it’s actually selfless to love myself. Like that’s how I show up for others. I think that is a huge thing in caregivers. You think about how often caregivers end up sick or end up having all these health problems after caring for a loved one.  

[00:16:49] Dannelle: I like to use the word “self-full”. 

[00:16:53] Patti: Ooh. I love that. 

[00:16:55] Dannelle: Yes. Yes. Gotta refill. 

[00:16:58] Patti: Yeah!  

[00:16:59] Dannelle: “Self-full”.  

[00:17:00] Patti: I love that. I’m gonna start using it. [Laughs] 

[00:17:04] Dannelle: Yes. That’s how I talk to myself and I’ve, I’ve gone through the same thing of the process of learning how to speak to myself. What I tell myself, how I speak to myself, the words that I use. 

[00:17:20] Patti: Yeah.  

[00:17:21] Dannelle: And that’s really difficult. It is so important that we learn how to speak to ourselves.  

[00:17:27] Patti: Yeah, and empower ourselves.  

[00:17:29] Dannelle: Empower ourselves! 

[00:17:31] Patti: Yeah! The way that it clicked the best with me was like, I need to speak to myself like I would talk to my best friend. I would never tell my best friend that she was like, “Oh, you made that huge mistake today on accident, but you should think about it all night”, you know? I would be like, “Girl, it’s okay! We all – 

[00:17:51] Dannelle: [Laughs] 

[00:17:51] Patti: “make mistakes. Like, “You’ve got this!”  

[00:17:54] Dannelle: Yes! 

[00:17:54] Patti: You know? So, like speak to yourself like you’re speaking to your best friend.  

[00:18:00] Dannelle: To wrap up our conversation, I just wanted to ask you if there’s anything else that you want our listeners to take away?  

[00:18:12] Patti: If you’re thinking about how you are going to be able to show up for yourself in caregiving it is to find your support team, and even if that’s just one other person that can check in on you or one other person that gets it and helps you feel seen and heard, or it’s a group of people or a support group, or your husband or your cousin, whoever that person or people are, I think that that is how you are able to show up as your best caregiver self is by really feeling like you have these connections who get it and understand. 

[00:18:51] I am so thankful for my husband and I’m so thankful for my friends, but this online support system is what has gotten me through my caregiving journey, my grief, the reintroducing to caregiving, the advocacy, I mean anything related to caregiving. These are my people and it’s invaluable. I mean, it could be one person out there that can help you feel seen and heard, really helps you to feel empowered and feel like you can show up for your loved one and yourself.  

[00:19:29] Dannelle: Patti, thank you so much for joining us today on The Caregiving Soul. It’s been wonderful talking with you. 

[00:19:38] Patti: Thank you so much for having me and for helping me think through some things too, and giving me my new phrase, “self-full”. 

[00:19:47] Dannelle: [Laughs] 

[00:19:47] Patti: [Laughs] 

[00:19:49] [Music] 


[00:19:52] Dannelle: Thank you for joining our conversation with Patti. While we continue to strive to grant patience and compassion for our loved ones, Patti acknowledges the struggle with giving that kind of care to ourselves. Finding ways to show loving kindness towards ourselves is vital for mutual wellbeing. 


[00:20:17] Check out our show notes to connect with and follow Patti. 

[00:20:21] Every episode of The Caregiving Soul has a page on where you can find the extended show notes, including tips and takeaways, transcripts, and relevant resource links.  

[00:20:34] For additional bonus content from this episode, and to connect with us, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod. 

[00:20:49] The Caregiving Soul is an Empowered Us original, presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to the show wherever you get your podcasts.  

[00:21:06] And remember, the right care includes care for you. 

[00:21:16] [Music Ends] 

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