[00:00:32] Dannelle: LeAnn Specht and her husband, Jeff’s love story took an unexpected turn when Jeff’s behavior began to change in seemingly unexplained ways. What they initially thought was stress slowly progressed into a formal diagnosis of Early-onset Alzheimer’s. Jeff is currently living in the early-late stages of the disease. As Jeff’s full-time care partner, LeAnn documents their journey on TikTok as @alzheimerstips, sharing her insights from the perspective of husband and wife. Her videos shed light on their experiences and the realities of losing the person she knew and finding love in who he is today. 

[00:01:21] Welcome to The Caregiving Soul. I’m Dannelle LeBlanc.  

[00:01:28] [Music Ends] 

[00:01:28] Dannelle: I’m so excited that you’re here and just wanna thank you because I know that you are in the midst of and continue to caregive 24/7 and that’s hard work. 

[00:01:42] LeAnn: Yep, right in the trenches, that’s for sure. [Laughs] It’s not for the faint of heart. I’ve learned that. 

[00:01:49] Dannelle: And I’ll tell you one thing, if you are faint of heart, then you quickly get some fortification. [Laughs] 

[00:01:56] LeAnn: True. [Laughs] 

[00:01:58] Dannelle: Isn’t that –  

[00:01:56] LeAnn: Yes. 

[00:01:58] Dannelle: – the truth? Right? 

[00:01:59] LeAnn: People always ask me how I’m so patient and I go, “Who? Me?” [Laughs] I’m like, “It just comes to you when you need it the most, I guess”. 

[00:02:08] Dannelle: I’m glad you mentioned that. When people ask, “how are you so patient?”, another question that comes up frequently is, “How do you stay so strong?” And, we were having a little discussion about this prior to the episode about other people’s perception of our strength.  

[00:02:28] LeAnn: Mhmm.  

[00:02:29] Dannelle: And, for you and the work that you do in support of so many others, and this appearance and presence that you have, and so many of us have as caregivers all the time – 

[00:02:43] LeAnn: Right, right. 

[00:02:44] Dannelle: – when we’re not feeling strong. 

[00:02:46] LeAnn: Correct. I think, because I do tend to compartmentalize with my emotions and really just deal with every task as it comes, and I am a person that sweeps things under the rug, the big picture things. And so, I think that I make myself be stronger because of that, so I don’t let myself have those breakdowns. 

[00:03:11] I want to be strong and so I don’t deal with those raw emotions all the time because I want to be strong for Jeff, for, you know, I also caregive for my mother who has stage four metastasized breast cancer, to share that with the listeners. And, I also have a child still at home, so a lot of caregiving, as you mentioned and on my plate. And so, I just have to take everything one day at a time. 

[00:03:34] But I, I do break down. I don’t want it to come across that we should try to fool other people and make them think that we’re strong 24/7. I just do try to, I guess not share that as publicly, if you will. 

[00:03:47] So, just like I’ve mentioned before, with taking care of my husband Jeff, and keeping his dignity and not showing certain things in my videos and stuff. I think it’s the same way, I guess with wanting to come across as strong. I rarely would video myself breaking down and not being so strong in the moment. 

[00:04:05] In fact, one day I was going to, I had given him a shower and I ended up having to get in with him at the last minute and save an accident from happening with soap not ending up where it’s supposed to be, not being ingested, right? And so, I ended up in my clothes, my hair soaked, crying, and I was gonna put that on TikTok. 

[00:04:25] I even filmed, I think myself saying, “This is what it really looks like”. And my daughter said, “Mom, no, don’t put that out there. Keep that for yourself”. So, I’ll tell you, and your listeners, but not videoing those moments where you’re not so strong or because Jeff has had an issue I don’t wanna share for his dignity, putting that on videos. But yeah, strength and patience are all in the eye of the beholder. [Laughs] 

[00:04:51] Dannelle: I think that your strength is in being there for so many others in support, and wanting to encourage and uplift while also maintaining your own dignity. 

[00:05:04] LeAnn: Mhmm. 

[00:05:05] Dannelle: When we share our stories, we want people to understand the realities of caregiving, but that does not mean that we show and share everything. So, that’s a difficult, tightrope to walk sometimes. And so, I would love if you would share with our listeners what inspired you to share you and your husband’s story? 

[00:05:31] LeAnn: So, I think, because I learned so much myself in taking care of Jeff for five and a half, six years prior to starting my TikTok, and I learned so much of what I learned from TikTok, from following other people, from Instagram people I followed, reading books, along with other education sessions that I’ve attended through the Alzheimer’s organization and, and different local organizations, nonprofits, and so on. 

[00:05:57] And the one thing that I noticed that, is that there was hardly anybody taking care of their spouse. I think because of Jeff having Early-onset Alzheimer’s, which is only 4 to 5% of all Alzheimer’s and dementia, there aren’t as many people, and you know, sharing that in that age group. So, you do tend to find people more my age are taking care their parents, their siblings, their grandparents. And I had only personally ran across less than a handful of people that were sharing that story with their spouse. 

[00:06:29] And I had so many things compiled that I thought might be useful to share, and wanting to give back. You know, I thought, “Oh, I’m going to share all these tips and all this knowledge that I have”, just cannot believe what I’ve gotten back out of the community, and it’s become my support group as well. 

[00:06:46] But that’s what really just inspired me was that I just felt like there wasn’t enough Early-onset Alzheimer’s being shared, and then specifically with a spouse. So, that was why I started it. 

[00:06:58] Dannelle: And, I keep hearing this echoed, and Good Days did a live stream earlier today for National Minority Health Month, and one of the speakers was talking about the value of support groups, and she was sharing experiences from people who participated. 

[00:07:16] And one of the things that came up was the fact that one of the biggest values that people got was that they went into it not necessarily expecting to receive, but to give and show support for others as an advocate, for example, but ended up experiencing this circular energy of giving and receiving. And I think that’s so true of caregiving in general. 

[00:07:46] LeAnn: Right, right, not just a support group, but even with what I give Jeff or my mom, but then the joy and the little moments, and even like I tell people I take my mom to chemo three Fridays out of every month, and that’s our alone time though. And I wish it was under different circumstances, but at the same time, I get dedicated time with just my mother every Friday for five or six hours. And so, finding just the joy in that situation. 

[00:08:14] I mean, for Jeff and I to share, again, other than that we’re together, I’ve started to get some respite care, but more or less 24/7 I’m with him. And most people are not with their partners like that, that much. And so, [Music] our time together is limited, but then I find that joy in it of being, knowing that even though our time togethers going to be limited because of the fate of his disease, that we’re getting so much time in this compacted, you know, number of years. 

[00:08:39] So, like you said, this circular I give to him, I take care of him with his physical needs, you know, every day. But, there’s many days where I’m still just filled up. I tell people, “I still love being with him”. I still, even though his communication, he has aphasia, so our, his communication isn’t clear, I can still make out what he’s saying 90% of the time or what he’s trying to say, and still have conversations with him. So, it is, it’s definitely so many things of giving and taking and all aspects of caregiving for sure. 

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[00:09:12] Dannelle: That doesn’t just happen. So, it does take work and awareness, and I’m curious what kind of challenges have you experienced as Jeff’s wife and the impact on your marital relationship? 

[00:09:31] LeAnn: So, I think like when I do look at the difference in taking care of someone with dementia, or Alzheimer’s, as a spouse versus say a parent relationship, for example, I think one of the biggest differences is that we have lost all future plans. So, I think that, you know, you might be taking care of your parent, again grandparent, sibling, whatever, that you feel like you have lost so much and you have, I’m not discrediting that, obviously, but you have your own life. 

[00:10:02] Like, it’s temporary as a caregiver, right? You know that you’re going to go on and have the rest of your life, right? You might be taking care of that parent for a year or five or whatever it may be, but you’d go on and have the rest of your life back with either your partner, your spouse, your children, whatever. 

[00:10:19] And I think that that’s one of the biggest differences, is that we’ve lost all future plans. When, when this is over, Jeff’s journey has come to an end, I have to start completely over. I don’t know where I’ll be at that point. And when people ask me what I feel like the biggest loss is, that’s the biggest loss to me. 

[00:10:40] The second biggest loss is that, because of his memory losses and communication, all of our little intimate moments and joys and falling in love and things we experienced, we can’t chat about that anymore. I have to carry those memories for us.  

[00:10:56] On the other side of things, taking care of him, as I mentioned, we’re together 24/7, but I’m supposed to be. Right? Like, he’s my partner and you’re supposed to be together. And I think that when you’re called in to take care of a parent, you’re in a different situation of, well, wait a minute, now I have to halt my life, right? I have my spouse or my children or my job or whatever. 

[00:11:16] So, I think that there’s, you know, like I said, give and take. My long-term plans are going to be more altered, because of it being my spouse, but my day-to-day it wasn’t such a big step out of my comfort zone. Like taking care of my mom, I sit and go, “What am I gonna do? Am I gonna move her in with me? I can’t move in with her”. 

[00:11:32] So, you have all those different things where your spouse, well at least we’re here, right? We live together anyway. [Laughs] So, there weren’t that type of decisions to make, if that makes sense.  

[00:11:40] Dannelle: I had never thought about the loss of future plans, and the impact that that has on how you live day to day.  

[00:11:54] LeAnn: Mhmm. 

[00:11:55] Dannelle: And then the decision about, okay, what kind of quality of life can I create with this reality? 

[00:12:03] LeAnn: Correct. We do so much of trying to live as normal as we can and I think make the most of our time together as partners and I think that’s a huge part of it, is just knowing that, that this is not just temporary for me. When I lose Jeff, I’ve lost everything I can think about. 

[00:12:25] Dannelle: You know, you talked about compartmentalizing, which actually makes perfect sense when, you know, you’ve, you’ve got fires you gotta put out. You didn’t – 

[00:12:35] LeAnn: Yes. 

[00:12:36] Dannelle: You gotta, sometimes, just sweep some stuff under the rug just to make sure the house doesn’t – 

[00:12:42] LeAnn: Right.  

[00:12:42] Dannelle: – burn down. [Laughs] 

[00:12:43] LeAnn: That’s the truth. Yep. 

[00:12:44] Dannelle: Right? 

[00:12:44] LeAnn: Sometimes quite literally. Yes. [Laughs] 

[00:12:48] Dannelle: So you, you’ve made a few different videos on respite trips 

[00:12:52] LeAnn: Mhmm. 

[00:12:52] Dannelle: – and bringing in a caregiver for your husband to renew yourself, because this is, LeAnn, an awful lot. It is a lot on your shoulders.  

[00:13:07] LeAnn: Mhmm. 

  

[00:13:08] Dannelle: And so, what do these breaks do for you? How do you use these breaks to care for yourself?  

[00:13:17] LeAnn: The reason I decided to get respite care was feeling like I was losing myself, and having other people around me tell me that, and not getting invited to things anymore, people starting to quit asking when you’ve said no so often. And again, to what we were just talking about with when Jeff’s gone feeling like I will have lost everything, I know that I have to keep up some of those other outside relationships so that I’m not completely devastated and alone. 

[00:13:45] And I’ve only had respite about four months now, and a limited number of hours. I’m easing into it. It, it’s hard cause like I said, when I feel like I’m supposed to be with my husband 24/7 and I’m supposed to be his partner, when I leave him at home to go out to a dinner, there’s definitely that level of guilt that’s there. 

[00:14:04] And so, being able to just let loose for that few hours that I have somebody and to feel like myself and not to be losing myself. Like, being able to call my friends back up and say, “Guess what? This month I can go to lunch and dinner these two different days”, and that type of thing. 

[00:14:20] So, [Music] as far as what it’s done for me, I would say that’s the biggest thing is just feeling like me again, getting a piece of me back, laughing again, being more relaxed when I go somewhere again. I’ve also taken a few overnights and that’s been really hard. I’ve cried on every one of them because of missing him at some point. 

[00:14:40] And again, that feeling of guilt and things when we loved to travel and now he can’t be with, but they’ve just been trips he couldn’t tolerate and that type of thing. And so, you know, as far as that goes, that, that’s just been wonderful doing those things for me. 

[00:14:54] [Music Ends] 

[00:14:54] On the flip side, I really thought that it would make it that when I came back home, I’d be more patient. I can remember when my girls were little and having that girl’s trip or going out for that dinner, I’d always say, it makes me a more patient mother. And at that point with my kids, I really felt like that. 

[00:15:12] And so, I thought that was gonna be the same situation, and it’s really not. For me, it hasn’t worked out that way. While I’m gone, that few hours, that respite, but with dementia, boy, you walk back in the door and you’re thrown right back in the thick of it. So, it’s, it’s hard. Like I’ll think, oh, I’m gonna come home and get to just go right to bed. 

[00:15:33] Well, maybe right before I walked in the door, he’d had an accident with incontinence. But they’re gone and they’re leaving. So, here I am now, you know, immediately getting in the shower with him, within five minutes of getting home. Or he won’t lay down and go to bed. And I’m tired and I’ve been out, or I’ve gone on this three-day trip and so I don’t wanna complain. I’m blessed that I’ve been able to do those things. But I think that that piece of it, I’m, I’m just honestly, hasn’t given me what I thought that it would.  

[00:16:01] Dannelle: Well, that’s the reality. And, it’s really hard on the heart. And so, I think being aware that the reality may be that it’s not an experience of wading back in, feeling refreshed, but more like, you’re back up to – 

[00:16:19] LeAnn: Yes. 

[00:16:19] Dannelle: – your neck. And so, while the respite is really important, to get those breaks, to have a realistic expectation of what it’s gonna be like when you get home.  

[00:16:34] Your TikTok is full of so many great tips for caring for a loved one with brain change, and I would love for you to share, based on feedback from your followers, or just from your own perspective, what are some of the top tips that you would like to share with us today? 

[00:17:01] LeAnn: The overarching things that I talk about with creating normalcy, trying to live as normal of a life with your loved one as you can. I mean, I think that’s been more of what’s been really well received. For us it was still going to concerts and going out to eat a lot and going to happy hours and continuing to travel. So, whatever your normal looks like, whatever it is you enjoy or your person enjoys, to try to live as normal as long as you can, because there will obviously come a time when you cannot. 

[00:17:33] Also, I talk a lot about meeting your loved one where they’re at, and what that might mean. So, maybe I can’t get my loved one to shower, and tonight was getting down and dirty with trying to get Jeff to shower because we’re conditioned that you get up in the morning and you take a shower. And he has sun risers. 

[00:17:52] And so, what that means is that Jeff’s mornings are really tough. So, it’s more common with dementia to have sun downers, where when the sun – side note here – when the sun goes down, that they get more agitated and pacing and confused. Jeff is the opposite. He wakes up confused and agitated. 

[00:18:10] So, one day it just dawned on me that these morning showers were not working. So, we take his showers in the afternoon, or towards evening or before bed. So, that’s just an example of meeting him where he’s at. 

[00:18:23] And then being mobile. I think mobility, for the long run, for so many reasons is so important. And so, we go for walks four and five times a week. And I think that because becoming bedridden, you know, happens and it, it will. I know I can’t keep it from happening, but maybe I can keep it from happening until the end. And, that’s just such a challenge if your loved one becomes bedridden with dementia. So, just to keep moving and keep mobile.  

[00:18:52] Dannelle: All of those tips are hugely impactful and important. The caregiving situation is that there’s not one right way of doing everything. And it ties into your point about meeting our person where they are. Sometimes we’ve got to come up with, not sometimes, we frequently have to come up with solutions that are outside of what used to be our norm, you know?  

[00:19:32] I mean, yeah, the norm is to wake up in the morning and the first thing that you do is you shower. And so we’re operating out of that, these societal rhythms and normalcy that just do not work sometimes. And so, we have to be like flexible, which goes to your point about mobility. 

[00:19:49] LeAnn: Yes. [Laughs] 

[00:19:50] Dannelle: [Laughs]  

[00:19:50] LeAnn: Right? [Laughs] 

[00:19:51] Dannelle: [Laughs] I mean… 

[00:19:54] LeAnn: Perfect segue. [Laughs] 

[00:19:57] Dannelle: Okay? I’m like laughing because I wasn’t –  

[00:19:59] LeAnn: Right? 

[00:19:59] Dannelle: – planning that but it just –  

[00:20:01] LeAnn: Yes. 

[00:20:01] Dannelle: – worked. 

[00:20:02] LeAnn: Yeah, it did. 

[00:20:02] Dannelle: Right? So we gotta go – 

[00:20:04] LeAnn: Yes. [Laughs] 

[00:20:04] Dannelle: – with what works, LeAnn. 

[00:20:06] LeAnn: Exactly. [Laughs] 

[00:20:07] Dannelle: [Laughs] 

[00:20:07] LeAnn: Yes, we do. [Laughs] 

[00:20:11] Dannelle: What else would you like our listeners to know about caring for a spouse? 

[00:20:19] LeAnn: Oh boy. It’s just, it’s a more intimate level, I think is how I would describe it. The care is just different. It’s just, that intimacy between us still remains, as far as our love. I had a friend ask me the other day, “Do you mind ask, if I ask you how your relationship is with Jeff? And I said, “Well, you know, we still, every evening when I’m done taking care of him and the dishes and whatever else, we spend our evenings on the couch. I am leaning against his chest, and you know, my hand on his leg or his hand on mine and we’re close”. 

[00:20:58] He’s a, a touch person. That’s his love language. And so, I think I was saying that when I have the respite care and I missed him so much, that makes me sad because I think, oh, his caregiver is not sitting with him on that couch this evening comforting him, rubbing his arm or that type of thing. 

[00:21:16] And so, I think that that’s one of the big things is that level that’s there. That, even though other things are fading, and being able to like discuss the joy of our memories, and our courtship and all of that have faded, that we still can have that intimate relationship, and that could be lost at any moment. It’s just that, that’s the big difference in caring for your spouse is just that the intimacy involved, and hoping that you don’t lose every bit of that before this is said and done. So… 

[00:21:53] Dannelle: I hope for you to continue to find ways to sustain the intimate love that you have for one another. It’s just, it’s written all over –  

[00:22:09] LeAnn: [Laughs] 

[00:22:09] Dannelle: – your face. And so, I would love to wrap up this episode with you, LeAnn, by finding out what else you are passionate about outside of caregiving? 

[00:22:29] LeAnn: Oh, that’s a good one. I haven’t been asked that in a long time. And it’s hard because I am passionate about, well my children, which obviously is still caregiving, but I am going to be a grandma this fall. And so, that’s exciting.  

[00:22:43] Dannelle: Congratulations! 

[00:22:43] LeAnn: Yeah, for the first time. And so, that’s such happiness for all of us and been long anticipated. And so, that’s exciting. And that’s something that just for our family to have that happiness that we need. We’ll be adding taking care of the baby into my caregiving [Laughs] before I know it. So, it’ll be fun. That’ll be fun caregiving. 

[00:23:04] Dannelle: Yes. Ugh, that is so wonderful.  

[00:23:07] LeAnn: Yes. 

[00:23:08] Dannelle: Well, congratulations. 

[00:23:09] LeAnn: Thank you. 

[00:23:10] Dannelle: Well, thank you so much for sharing your story. I, again, learned so much, so many new insights and wisdom. And so, I, I just truly thank you so much for joining us today on The Caregiving Soul, LeAnn. 

[00:23:30] LeAnn: You’re welcome and thank you for having me. Anything we can do to spread awareness about dementia, I’m, I’m here for it. So, I appreciate very much you having me today. Thank you. 

[00:23:42] [Music] 

[00:23:45] Dannelle: Thank you for joining our conversation with LeAnn. LeAnn describes her biggest loss, the future plans she envisioned with her husband, and how she’s now the only one able to carry the memories of their relationship. While grieving a future that now looks different, LeAnn remains focused on normalizing the present moment.  

[00:25:10] Her remarkable perseverance to stay connected by meeting Jeff where he is, is the hard work of intentionality and self-awareness. Her work to find ways to spend quality time together is a testament to the power of their bond, and so their love story continues. 

[00:24:32] Check out our show notes to connect with and follow LeAnn.  

[00:24:36] Every episode of The Caregiving Soul has a page on empoweredus.org where you can find the extended show notes, including tips and takeaways, transcripts, and relevant resource links.   

[00:24:49] 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.  

[00:25:03] 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. 

[00:25:19] And remember, the right care includes care for you. 

[00:25:27] [Music Ends] 

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