Dawn Taylor|9/26/2022

Transcript

Dawn Taylor 00:09



Hey, hey, hey, welcome to Taylor Talks. Today I have the honor of talking to Melissa. She is a former certified nursing assistant. She worked primarily in long term care, before she had to transition to being a full time stay at home mom and caregiver for her husband. So she's now really passionate about talking about what she's learned over the last two years, and she really wants to help other younger moms and spousal caregivers through the ups and downs of their journeys. But today we're here to talk about how hard it is to be your spouse's caregiver. What goes with that? And why do we not support these people more? Or why are we not talking about this more? So in typical Dawn fashion, we're gonna dive right in.

Dawn Taylor 00:54

Hey, Melissa, Hey, I am so glad you're here.

Melissa Miller 00:57

Thank you for having me. It's an honor to be here and a privilege to meet another spousal caregiver. It's like I'm two years in and now I'm starting to find people coming out of the woodwork that are touching on the subject that I teach about. So this is a treat for me. It's really a treat.

Dawn Taylor 01:13

Oh, I'm so glad you're here. So one of the things Melissa and I have in common is I have a spouse who's had some major health issues over the last - well we've been together 26 years, married 22 - and right now, I'm not having to be a caregiver. But he still has the health issues. And at times I've had to be the caregiver and to deal with that. And for myself, I know I felt so alone, I felt so unseen, unheard. And this is where I want to dive into this today. So Melissa, tell us a little bit about your story.

Melissa Miller 01:47

So our journey started two years ago, my husband was actually finally diagnosed two years ago, actually, as of this month. He was diagnosed with epilepsy officially in July of 2020. But our journey began in December of 2019, when my husband had his first seizure, and it wasn't like you see on movies where they're thrashing and convulsing, you know, and foaming at the mouth. It was just a simple, we woke up at 4:30 in the morning to change our daughter's diaper, she was almost one, I stepped out of the room to do something, came back to just help to see where he was at, if he needed help with anything while he was finishing up. He had a weird glazed look over his face and he just passed out. I asked him right before he passed out, are you okay? He got three words out, I don't know, and crashed. Thinking with my healthcare background, I was thinking oh, it's just, he's, you know, he was in his early 50s. So okay, parenting with a almost one year old is different than when you're in your 20s. So I thought maybe he's just exhausted from being a parent again to a small child, working 40 plus hours a week, and so maybe it's just a chemical imbalance and exhaustion. I never thought it would be epilepsy and seizure disorder. And my journey of transition didn't kick in until about May of 2020 when my husband's epilepsy really kicked in. Again, we didn't have an official diagnosis, but his seizure activity had skyrocketed. He went from having three in the span of three months, he had one in December of 2019, one in January of 2020, and then one in March of 2020. April, something just clicked, that was his first month that he had 10 to 20 plus seizures a month, it was so bad. We blew through our first doctor, our first medication, and then we were transitioning to a specialist. And that's when I started to realize, you know what, this may not work anymore, I cannot afford to be outside the home anymore because my husband needs care when he has a seizure, because it is causing damage to his brain. And it's very important that he gets medication, is observed for safety, and obviously, with us having a one year old at the time, she can get into God knows what and she can't call 911 or do the triage things that I need to do to take care of my husband. So that's what started my journey to being a spousal caregiver and stay at home mother full time.

Dawn Taylor 04:02

Wow. So aside from the chaos of this, and the shift of life, and everything else that went on, how terrifying.

Melissa Miller 04:09

It was very terrifying, because here's the thing, I do have a - like you said - I have a 15 year background as a certified nursing assistant, and I'm thankful for that training. But in that span of that career, I never had a patient that really had a seizure disorder, or specifically epilepsy. So for the first six months, I was nose diving into as much information as I could to know how to take care of my husband with this illness. And unfortunately, epilepsy is one of those chronic illnesses that is misunderstood. It's dealing with the brain, there's not a lot of research and funding yet, it's pretty much, treatment is pretty much you're just basically throwing spaghetti at the wall because you're dealing with someone's individualistic brain. And so there's 40 drugs on the market right now for for dealing with epilepsy and seizure disorders. But I guarantee you, if you have 40 people in the room, they'll all be on a different medication, all have a different reaction to the drugs, all be on a different dosage and treatment, and some it may not work altogether. And so they either go to another drug, they might look at a seizure device placement, or even looking at surgery like we're in the season of looking at now. So it's not a cure. It's an illness that never goes away. Certain disorders are something that is with you for the rest of your life, it might go quiet for a while, kind of think of like a volcano, it might go dormant, but it can be triggered again, and then it can skyrocket again. So it never goes away. So the damage to your brain is permanent, there's no treatment to fix the damage. All there is is trying to stabilize, prevent more subsequent damage at this point. So it's a long haul disease, my husband will have it for the rest of his life. And I will be caregiving for him for the rest of it.

Dawn Taylor 05:54

So here's the part nobody talks about. And I remember, at a point in my life, when I was the caregiver of my spouse, is there was a lot of like, Oh, it must be so nice that you can take care of your husband, you can do those things. And for me, there was a big identity loss. I went from being his wife, his lover, his best friend, his, you know, fill in the blanks, to his nurse, his caregiver, his... and still manage work and life and everything else and emotions and that became super, super hard. Is that massive loss of identity. How have you dealt with that?

Melissa Miller 06:32

I struggled because I did, especially from a career standpoint, I mean, think about it. Well, even as a mom, let's backtrack, let's pull back a little bit. So I had always associated and planned on being a working outside the home mom, because financially speaking with where we live and the jobs that my husband and I have, we don't have the capacity financially for me to be a stay at home mom. Now we talked about it, but there was just no way that we would survive with how rent is, utilities, you know, and gas.

Dawn Taylor 06:59

Cause, where do you live?

Melissa Miller 07:00

We live in Idaho, we live in southern Idaho. And yeah, there was no way. I worked as a certified nursing assistant. And it was, you know, I could make a decent living, but it wasn't like, we couldn't just live off one income more than another. My husband worked in our gas station, I worked as a CNA, there was no way that we were going to be able to just live on one income. So we planned on just working opposite shifts to also alleviate the need for childcare. Because let's face it, where we live childcare can be as much as a rent or mortgage payment in a month, depending on where you go, how many kids you have to be in childcare, it's expensive. So that was another thing. And we didn't want to be the type of parents that just totally impacted our families, as much as they wanted to help, they have their own lives. And so, and we do have family that are impacted by some nasty health issues as well. So we were sensitive to that at the season of life and we became parents. So that's what was my identity, is I was going to be in healthcare, I loved my career in health care, I was going to be a working mom. And that's what we thought the norm was going to be. I never for a million years thought I would be transitioned to being a stay at home mom, building a business, and shifting a whole new career in of itself. And also, like you said, filling in the gaps, not just being a mom, a wife, a lover, a best friend, but also being a caregiver. And sooner than expected, here's the thing, we anticipate caring for our spouse, or excuse me, for our parents and grandparents because of the age gap. That's something that's expected. And once our spouses hit 65 and above, statistically, that's when health problems do kick in, body starts to break down, and then there is more subsequent health issues. Typically. Typically, we don't anticipate on caring for our spouses when we're in our prime, my husband was only 53 when he got sick. I was 34 - 34-35 excuse me - and we had a one year old. So we weren't anticipating needing to care for each other in that sense when we still had our daughter to raise for the next 18 years at home. You know, we anticipate those health issues kicking in with our significant other after the kids are grown, when we're older and grayer, and you anticipate those things. You don't anticipate an unexpected illness or injury, especially a chronic illness with no medical history to hit you. But if it can happen to me, it can happen to somebody else.

Dawn Taylor 09:23

So in that, what were some of the resources you used or, like, the things that you could dive into that kind of saved you in those moments. Like I know for myself, one of the things I did was I'd go swimming lanes with all the seniors, I'd go swim with the elderly women at the pool, just as an escape like at five o'clock in the morning when he was still sleeping in. Like those are the things that I would do, or books or music or different escapes that I had. What is it that you do on a regular basis to keep yourself more grounded in this?

Melissa Miller 10:00

I will say back then the girl that you see now, talking now, I'm a lot more emphasis on personal, on whole body self care, physical, mental, emotional and spiritual self care now for myself. But I didn't in the beginning. Okay, so here's the thing. In the beginning, I didn't go to those escapisms. The first year, I burned out hard because I did not practice whole body self care. I skipped wellness visits, I was just totally in mom mode. And plus, we were dealing with the pandemic, we were shut down.

Dawn Taylor 10:28

Oh, totally.

Melissa Miller 10:29

Yeah. So we were not only dealing with this big change to our family, and shifting and several layers in of itself. We were dealing with being isolated from our families and shutting down and isolated because we were both, obviously, still working or trying to work. In the beginning of 2020, before my husband's health really defined, my husband was being exposed to the public working in the gas station. I was working healthcare as a CNA, with my patients. So yeah, it was crazy. And I didn't have those self, before all this happened my favorite escapisms would be to watch some TV, I definitely love to knit, I love to journal, love to read books. I wasn't practicing that in 2020. The girl that you see now, I am. Those are some of my favorite escapisms: reading books, listening to worship music, knitting, those are the things that feed my soul and feed my mind and my body. But back then I wasn't doing that. And that is so critical and pivotal, because what happened with me specifically, is I have hypothyroidism, and I get a lot of bad gut attacks from that. And by the tail end of 2020, I started having worse attacks than normal, and I put off going to see the doctor, which was the worst thing that I could have done. Because by the time we hit spring of 2021, I was so sick. And I'd had enough, I finally said okay, I gotta go see the doctor. And because I hadn't been keeping up on my wellness visits, and I'd just put it off for so long, it did take a long time to get me diagnosed. I didn't get my diagnosis of IBS until December of 2021. And it took four doctors and two procedures. So I was sick the whole year. And since January of this year, I'm just getting back into it. I've had one flare-up episode since then. But other than that I've done better since I've been, you know, obviously really limited my diet to avoid trigger foods, and I'm on medication, and there were some other things that we caught to when I'm on this health, on this journey to figure out last year what was going on, we found I was deficient in some other things, too. So it's been a journey. And now I'm very intentional with making sure I spend my time with the Lord, making sure I drink enough water and get enough sleep, and try to get 15 or 20 minutes of movement in a day when I can, you know, in some way, shape, or form. So those are the escapisms I definitely utilize now. But in the beginning, you don't think about that you're just, you're totally tunnel vision on your scared because you don't want to lose your spouse or your partner, you're overwhelmed with what this diagnosis means. I mean, especially for those, I can understand how even just medically sound people who, or excuse me, people who are not medically sound - like I am with having a 15 year career in healthcare, which I'm thankful for - for the average person like yourself, it's scary, right? You hear the word diagnosis, and you have no idea what that means. And maybe even if you are medically sound, you might be scared. Like I said, I never was expertise or trained to handle this type of illness that my husband has. So it was like I was back in med school again, the first six months when I was trying to dive in and then just feeling so frustrated when I couldn't find a lot of information. Well I mean, I could I couldn't, but just knowing that it's chronic, there's still so much that we don't know about it. And that's it's not curable, it's only manageable. So that's not very helpful or very encouraging. You hope to find a cure and go back to your baseline, you know, going back to work, going back to the normal and the life that you thought, rug was totally pulled out from underneath us when this happened. And it's the norm now for the rest of our lives and for our family, and it's impacted our, you know, and we're gonna go there. So you know, for sure it impacts your intimacy with your loved one because meds or procedures, it changes their mood, their libido, and even just your communication. Because think about it, for men, they're fixers, they want to provide, they want to work. So for my husband, it's been so hard for me as his wife, to see his masculinity get taken away from him to some degree, or be impacted, if you will, like he can't work 40 plus hours a week anymore because he has to keep his stress down, because that stress, not enough sleep, and missing his meds are triggers for his illness. And then he can't drive because we never know when an attack is going to happen. We don't want to get hurt or kill somebody. So that's hard. So his independence of being able to strive and go to, like, run to the store to get a gallon of milk. He can't do that. He can't be home alone with our daughter anymore. So that's hard. I mean, he's a wonderful father. And he just adores our daughter, our little girl. He's an incredible father. But that, but even just that small thing of being able to just go out alone with our daughter, he can't do that anymore. What if he has a seizure by himself? And our daughter is now three, or three and a half, but she's still small. She doesn't know what to do. So when something like this happens with your spouse, it doesn't just impact you financially. It impacts how you parent, it impacts all levels of your relationship, your communication, you know, and it's more on the mom. I want to say it, to call that out right now, it does put more on the mom to some degree, because since my husband can't drive I do all the driving, since my husband can't, if my husband has an attack he's down for the rest of the day, because he takes medicine that doesn't make him sleepy, but also just physically speaking, for those of you who aren't in the headspace of seizures or epilepsy is, when you go through a seizure, it's like you've run a 26 mile marathon. He can't recover from that overnight, so you'd have to sleep it off and then you'd have to have medication to help prevent and stabilize and prevent another subsequent seizure. So it knocks him out. So, for example, my husband has seizure right now, I'd be dropping this call, running, giving him his medication, triaging him, and then calling in for his work, and then he's down for the day and I'm in mom mode for the rest of day, I'll take care of our daughter, because he can't do it. He needs to rest. So it impacts you a ton. And this is the ucky stuff that is underneath the service as caregivers, spousal caregivers, excuse me, that we don't touch on.

Dawn Taylor 16:38

I don't know if you know this, my day job is a trauma specialist. And I often talk to clients about this: a spouse will often lash out at a spouse when they feel emasculated, when they feel like their ground has been shook underneath them, when they're losing control over something they can't fix, right? Because we're their safe person, we are their safe person. And I know my husband, and we've talked a lot, like him and I, about me talking about his story. And I even wrote about it in my book a bit. But when he would get so sick, he'd get so angry. And it was like he needed to lash out at something and he couldn't lash out at the disease. He couldn't lash out at those things. So it was me, right, I became his scapegoat for that attack. And thankfully, like praise the Lord, he's not always like that, or I wouldn't be married, let's be honest. But that's a big shift is dealing with that. Is that something you've had to deal with?

Melissa Miller 17:40

Oh, yeah. Oh, yeah. My husband definitely has been more moody, not because he's trying to. But he's been angry. He's been angry he can't work 40 hours a week, he's angry he can't drive anymore, he's angry he can't be doing things on the whim by himself without making sure he has medication, his phone, or an adult close by to be able to triage him if something goes down. That's a tough way to live. And he's only 55. Can you imagine? You know, and again, going back to that piece, as a father, as a husband, as a lover, as my best friend, that rug, this illness has robbed him of so much. And the fact that we didn't have any warning, you know, for seizure disorders and epilepsy, there's 20 to 30% of the population that with no medical history as a child, which is lots of times how it's caught, or in your family history, like if you did have a relative that had it, you know, it could potentially come down the pipeline. But there's that subsequent amount of the population that will get it without no apparent reason. And that's where my husband falls. So can you imagine getting hit with something like that unexpectedly, and just having it rob you of the rest of your life to some degree. I mean obviously that's not a healthy way to live. We're trying to choose to live in hope and grace and, you know, give a good life and still have a good marriage and a good life for our daughter. Don't get us wrong, don't get me wrong, but still, it hits you, you get angry at God, you get angry that this happened to you, you ask those questions of why, which is normal. Okay, we're human beings. We have, we're human beings, we have emotions. So we're supposed to feel angry, we're supposed to feel ticked off, we're supposed to have those questions of why. But the problem is in our culture, is that we don't, since we don't talk about it, we don't develop safe zones for people to share about this. Because for their mental health, or their emotional health, their physical health, or their spiritual health, they need to talk about this. You have to have a safe place to talk about this. And what really ticked me off when I started my journey is I could find stuff for stay at home moms, but it was more directed at stay at home moms who had made that financial decision with their spouse prior to getting married that they were gonna stay home and take care of their kids because their spouse made a big job, made good money at their job. And no disrespect if they choose that, God bless them.

Dawn Taylor 19:54

But that's not your situation.

Melissa Miller 19:55

That's not my situation. Again, on the caregiving side, I could find stuff that was more directed at the person who maybe had the illness or older people, like, you know, for your, like your parents and your grandparents, or maybe a special needs child, something like that. But it wasn't for me with being, you know, with having a one year old, quitting my job cold turkey to prioritize my family for safety, not just in terms of me wanting to be a little selfish and make sure I was the one that didn't miss anything, that I was here for my little girl, that I was here for every subsequent episode that my husband goes through, and every medical appointment, but also just thinking with my medical brain, we were in the pandemic, there was no vaccine yet. I'm like, I'm sorry, I don't want strangers in my house. And we have this going on, I do not want to risk exposing my family to other health issues. So there was that piece of it. Yeah. But how do you navigate that if you don't have support? Hello, we're human beings with emotions that need to have a safe outlet for those emotions. But then on the other flip side of that, we need to have support for people that can actually say it and call it out and go like, I got you. I've been through that situation. But we don't have that. That's the whole problem.

Dawn Taylor 21:04

And there's no, I remember someone one time they were like, how are you doing? You know that voice, right?

Melissa Miller 21:12

You know it, you call it out, you know it.

Dawn Taylor 21:14

Right? You're just like, really?

Melissa Miller 21:17

It's like, you're really gonna go there? Sometimes as, yeah, sometimes as caregivers the thing we need the most is just a place to let go and vent.

Dawn Taylor 21:25

100% And I remember it going awful.

Melissa Miller 21:28

We need to vent. We need to just have a place to sweat it out and be honest and not put up our front of saying, oh, yeah, I'm happy, I'm fine, I got it all put together. We don't.

Dawn Taylor 21:38

Thank you.

Melissa Miller 21:41

And it's okay to call up the crap. I'm calling it out right now. That is not okay. This is really tough stuff that we deal with as spousal caregivers. And if, whoever's listening on this podcast right now, if you are going through that situation, you are safe. It's okay for you to say it. You know, so, I don't know, I don't know how Dawn interacts with her podcast, but leave a comment, email us, whatever.

Dawn Taylor 22:05

Oh, 100%.

Melissa Miller 22:06

Let us know, okay? It's okay. I'm calling it out. If people have been telling you to shut up about it, or they haven't been listening, that is bull, you're safe. We got you. We've been through it. That's why we're here. That's why my whole business exists is because I was not okay with seeing myself, or knowing too, that other younger moms who are also navigating being just new moms for the first time, and dealing with caring for a spouse unexpectedly for the rest of their marriage, without support without resources. Hello! And is not medically sound and has the blessing of a healthcare background, and is overwhelmed and frustrated with the lack of research and information or just even being overwhelmed and scared by the big medical terminology that's out there that's being thrown at them as they're in there sitting through their spouses illness, medical appointments, and they have no clue what that means. That's not okay. I'm calling it out. That is not okay. And Dawn exists because she's not okay with it either. So guys, listen, listen to us, if you are scared, if you are overwhelmed, if you are feeling like there's nobody else on God's green earth that is dealing with the situation, that is not the case. We are here. We want to support you. And it's okay to reach out for support. That is one of the principal things I teach about, is building your support network. It is critical to how you survive. Okay? Yeah, and I'm not talking about this medical support. I'm talking about emotional, mental, and spiritual support.

Dawn Taylor 23:45

So with that, let's give the listeners some tips on that. Okay. So number one, what are some signs of burnout that they can look for it? Because I know for myself, it was, you and I both know that that amount of stress that amount of burnout can cause disease in our bodies, can cause all kinds of health issues, can cause all kinds of problems, right? So you need to catch it farther in advance. Another thing that I often talk about is I've had burnout so many times in my life, I don't recover fast anymore. Like the first time you burn out, you're like, 'oh, yeah, no, that was okay. Like it was bad. But I got there and I got out of it. And I'm okay now'. But what are some signs of burnout that we could tell people to go like, 'Hey, this is when you need to start actually really paying attention to this'.

Melissa Miller 24:27

Okay. Get ready. Buckle up, everybody. All right. So, signs of burnout, I would definitely be paying attention to, both with your spouse but more importantly you as the caregiver, will be definitely some physical signs for a start and emotional signs. So if you don't have health problems, but you're starting to feel sick and you just kept getting chronically sick, that would be a red flag. If you're not being able to cope mentally, maybe it's time to go see a counselor or a therapist. There's nothing wrong with that. And you might have chemical unbalance, like I went through a bout of depression in my early 20s, and we found out my thyroid was out of whack. And when your thyroid is out of whack, it never permanently goes back. So I'm on medication for the rest of my life to keep myself there, because it is a part of your immune system as well, for those of you who aren't medically aware, so that is important. So if you feel off, if you feel exhausted, even though you've maybe slept for seven hours, you're eating, you're drinking, and you still feel tired, exhausted, sick, you could be burnout. So definitely make a wellness visit with your medical provider. And if you need professional help, like you're just not being able to cope, you're just super duper emotional uncontrollably, are angry or anxious, it probably might be a good idea to see a counselor or a therapist, because here's the thing, counselors and therapists are awesome, because they have other resources, they have other, they're trained to deal with other coping techniques. And also, I know it might sound cliche, and there's a lot of stigma around it which your girls not happy about, but medication, okay? Medication, if it helps you be able to cope so you can show up as the mom and the wife and the caregiver that you need to be, I'd much rather you'd be on a small dose of Lorazepam or Trazadone, or whatever the case may be that is appropriate for you so you're not so anxious, you're not so emotionally overwhelmed, so you can focus and show up and do the things that you need to do on a day to day basis to take care of your spouse, take care of your children. I want you to do it. Maybe it's, maybe if you're feeling just super duper angry spiritually, and you're just angry at the Lord, I would recommend talking with your pastor or your leader of faith and maybe even just plugging back into your congregation. One of the big things that I've been doing is really being intentional with my own with my own journey, is getting back and spending time with the Lord. And I've been going through an awesome, it's called "10 by 10", it's a daily devotional, you do five minutes where you listen to this little training by these amazing women. They're a duo - Erin and Andrea - they teach spiritual wholeness from a Christian standpoint. And then there's questions, reflection questions. And so with me, since I love prompt journaling, it's perfect. So I spend 5 to 10 minutes journaling. But that's me. So what works for you with managing your mind and your soul? And you don't have to be spiritually sound in the Lord. If you believe something different, maybe spend, set your timer for 10 minutes or 5 minutes, and just listen to some quiet music to kind of just calm your mind, calm your soul, or meditate. Or maybe it's reading an educational, inspirational book to help you with dealing with your mindset. "The 12 Week Year" is a good one. I've read that one more from my mindset, for my coaching, and my business. But also going through it, it is also good for for translating into your personal life too. So there's really, so tap into resources like that. Okay? And then the big one, if you're just feeling really super isolated and alone, the thing there would be to definitely tap into resources like this, whether it's podcasts, look on Spotify or Apple, there's tons of support resources on topics. So Google 'caregiving'. I have so many on my phone, I need to catch up. But there's lots of good resources for caregiver podcasts out there now, more than anything, or even support groups. Now, speaking for what I know what my situation, when I looked at Facebook, Facebook is a good resource for support groups. I know you have to be online, but think about it, as a caregiver we're home full time, we're busy, we may not be able to get out of the house. So I want you to leverage, I would rather you leverage online resources then not at all. So look at caregiving, maybe plug in your spouse's illness because that has been good. For me, Instagram has actually been a good segue because there's a lot of people talking about epilepsy. And so that's been really good for me to kind of learn some things about dealing with my husband's illness. But that might not be the case for you. So look at Facebook, look in your church or your community for a community support group, even if it's just moms, if you can't get something for both, be okay with maybe plugging yourself in one or the other. Maybe it's a moms group at your church or your community center, or a an actual caregiving epilepsy - I'm just plugging and speaking to what I know to translate here - maybe an epilepsy support group or something. Or like here in the state of Idaho, there is a few things that happen occasionally, like for epilepsy, so maybe plug yourself in there and your loved one too. So they can surround themselves, excuse me, with people who are dealing with that same situation. Because, you know, if your spouse is dealing with that same thing, other people are dealing with it. But just listen to your baseline. What is your baseline physically, mentally, emotionally, and spiritually, and if something feels out, off and out of whack, I want you to do something about it. Even if it's just a few minutes a day.

Dawn Taylor 25:13

Well I'm not, there's so much shame attached to it. And I think even in just like the self help world in general, and this is the conversation I had with a friend last week was, there's this idea of like you always need to like do more, do more, do more, do more, do more, do more, or else you're a failure. Right? You and I both see this. But even just that, I often will talk to people and go, hey, you know what? There's days - I'll never forget my grandma and I having a conversation when my grandpa had cancer, and she was dealing with taking care of him - and she was like, 'Dawn, how do you do this?' And I said, 'What do you mean?' And she's like, 'How do you get through your days?' And I said, 'Oh, Grandma', I said, 'some days, I set an alarm for an hour and when that alarm goes off, I'm like dancing, excited, because I survived an hour.' Because that's all I could do. And I said, 'But some days, Grandma', I said, 'I literally count to 60'. And I think, 'I made it through 60 seconds, I can make it through another 60 seconds.'

Melissa Miller 29:45

That's fine. Yeah.

Dawn Taylor 29:49

And that was, it was really sweet because that my grandpa's funeral, I went over and I gave her a hug. And she just started quietly counting in my ear. And I just started laughing, and I was like 'You just did 10 seconds, you can do another 10'.

Melissa Miller 30:58

Exactly.

Dawn Taylor 30:59

And I think that's part of even what I wanted to put out there today in talking to you was, there's no shame attached to it. There's no shame attached to the fact that your diet's not perfect, and your self care's not perfect, and all these things aren't perfect, and you're struggling in your marriage, and you're struggling in all these areas of your life. Because you know what, we weren't raised to think this is what was gonna happen. We weren't--

Melissa Miller 31:21

We weren't prepared for it!

Dawn Taylor 31:22

How to deal with it. We're also not taught how to grieve. And there's so much grieving that has to happen in these situations, because--

Melissa Miller 31:30

Absolutely.

Dawn Taylor 31:31

We're grieving the loss of the spouse we thought we were going to have, we're grieving the loss of the life we thought we were going to have, we're grieving the story, the story we had created as to what our future was going to look like. And in that, when you can actually find grieving resources on how does your grieving this, reach out, I'll help you! But when you can look at those pieces of it, the things that nobody else even realizes are going on behind the scenes. It's so important to find your safe people, find your people to go, 'Hey, you know what, I'm really struggling right now.' And then the other piece of it is, if your spouse has an illness where they get better, or they do go into remission, or they do have a long period of time where they're not, quote/unquote, sick, where you're having to triage every day, there's this interesting loss of identity of 'But I'm a caregiver'. How do I allow them, almost, in a way, to step into their own power, to be strong, to do all those things? Because it's like, no, no, this is my job. This is my identity. This is who I am. Can you speak to that at all in your own world of how you separate those different identities for yourself?

Melissa Miller 32:42

You know, this is a very interesting question, because on the business side I went through a big shift with this too. So it's kind of interesting how this all kind of percolates and goes around. Definitely, as a caregiver, you still have to, I would say - this is the part of the self care I think is really important - because listen, and not saying... you need to still be in touch with the girl you are prior to your spouse's illness. Okay. Yes, you're a mom. Yes, you're a wife. Yes, you're a caregiver. But you also are the one who - I'll speak to I know - I still love to knit. Okay, I'm just getting back into that, actually started getting back into it this month, I'm making an intent to get back into knitting, because that's a passion that lights me up. That's who I am. That's something I love. And I'm trying to reconnect that with my past life. But I really haven't knit in the last two years much, since my husband got sick. So I'm getting back into that. So I'm finding joy in that because it's something to do for others. Because when I knit, it's usually to make something for someone. And so taking that energy of being able to knit with just relaxing, but it's also joyful, because I'm doing something for someone else, I'm getting off myself, and serving and giving to someone else. So find, but that might, that's obviously going to look different for others. So for those of you who are listening, what is a way you can connect to the girl that you were prior to your spouses getting sick? Okay?

Dawn Taylor 34:07

Or the guy you were if you're the husband taking care of your wife.

Melissa Miller 34:11

Yes, absolutely. Either way, either way, whether you're the spouse we're talking to, you're the husband taking care of your sick wife or your the wife taking care of your sick husband, what are some passions that really set you on fire prior to when your spouse got sick? And maybe they've fallen by the wayside? Because that is a way to heal with coming back to your identity of who you are. Like I said, yes, you're a caregiver. Yes, you're a husband or a wife, or a mom or a father. And those are important roles, and yes, we'll have those for the rest of our lives. But you are also a beautiful human being that God has created that has talents and has gifts, okay? And maybe in the season of caregiving you are right now, you can't volunteer and you volunteered before but you can't do that all the time anymore because you are at home. But maybe for self care to get yourself out of the house, maybe make arrangements once a month, that you can have a day where you spend like two hours outside the home, being able to serve at a non-profit or charity. Maybe it's just getting back into weekly activities at church where you volunteer once a week on a Wednesday night program or a Sunday morning service or something. Maybe it's going back, to start picking up where the pieces left off and finishing that career, maybe it's finish getting back into maybe just doing, if you can't do it all at once, maybe it is just maybe for one quarter, three months out of the year, maybe it's just for one quarter. Starting to take, you do one class online to work towards that end goal of a career or certification or something that you wanted, those dreams still matter. Okay? Because they are who you are. Not everyone's meant to be a podcaster like Dawn, or a mentor and a coach and a business entrepreneur like I am. That's the outlet I've chosen to start over. And I'm okay with that. But that's obviously not for everybody. And so I want you to tap into like, what might, I want you to think about what lights you up? What can you do to reconnect with the person you were prior to your spouse's illness? And how can you keep chipping away at that on a daily basis, a weekly basis, a monthly basis, a yearly basis, for moving forward in the long term and maintaining that identity? Because that is part of who you are. And there is no shame around it. Yes, in seasons of caregiving, we do, the caregiving overtakes everything. I would say 2020 was all caregiving. I was just totally focused on caring for my husband and trying to educate myself and just know what the heck to do. Okay, and I'm still in a season right now. We're looking for surgery now. So I'm in a new season of learning and educating and being able to be available for my husband. Okay, and we are dealing with extra seizures right now as he is transitioning on to a new drug. So I am in a crazy caregiving season. But this time I'm going in where I'm practicing whole body self care, I'm drinking the water, I'm doing my 15 minutes of movement, I'm doing my devotionals in the morning and my morning and evening journaling. I'm reconnecting with those hobbies that I love. And here's the thing, self care, whole body self care does not have to take hours. And reconnecting with that identity and healing, it doesn't have to be hours a day. And the journey of healing and navigating this journey, it's not a sprint, it's a marathon.

Dawn Taylor 37:27

It's a long term thing.

Melissa Miller 37:28

It's a long term haul. And so if you don't have the support that you need on the back end, for lack of a better expression, from besides the medical team, but someone that's in your corner helping you spiritually, emotionally, and mentally and that you're also just being your advocate and prior in prioritizing your physical health, you are going to burn out harder than you can say spit. It's going to be so hard to try to cope - because I learned the hard way, this was me in all of 2020. I was sick. I was sick, I was trying to take care of my husband, I was trying to run my business. And I was raising a two year old. Hello. That's a heck of a lot to deal with. That's a heck of a lot to deal with. Linda. Linda. Okay, hang on.

Dawn Taylor 38:11

Okay, it's not cutting this out. Her daughter just came running and she went running to her husband. So we'll see what's going on.

Dawn Taylor 38:24

So Melissa has had to go deal with her husband and some health stuff going on there. So we are going to... oh, here she comes.

Melissa Miller 38:34

 Sorry, I had to get, my husband had a seizure, so...

Dawn Taylor 38:38

No, it's okay. Is everything going to be alright? Do you need to go?

Melissa Miller 38:41

Yeah, I think I need to go because he's, I've got him in bed but I need to start making some phone calls. So I better...

Dawn Taylor 38:47

No, not even a question. We are going to put some, I'm gonna send Melissa - just for the viewers, listeners sorry - I'm gonna send a list of questions to Melissa. Just a few other things that she can answer. They're gonna be in the show notes as well as a fun giveaway for you guys and some resources. Melissa, we are sending all of our love and prayers to your husband and for your journey. Listeners, welcome to the reality of being a home caregiver.

Melissa Miller 39:11

Yeah, my daughter came in here cause she said 'pain, pain' because she's verbally delayed a little bit because of the pandemic. We have her speech, but she's verbally sound enough she can tell me when something's going on. So she was out there in the living room with her dad. And she came in and said 'pain, pain'. I dropped everything and I ran, and he was in a seizure. So that's where I was. So, reality of caregiving. That's the reality right there in a nutshell.

Dawn Taylor 39:20

That's what I figured, go take care of your husband and we'll talk to you soon.

Dawn Taylor 39:26

Thank you so much for listening to this podcast today. Guys, it's a hard one, having been a caregiver myself over the years, it's definitely an emotional one. And you guys got to witness in real time what happened. So please, if you enjoy this podcast, first of all, thank you so much for listening. Seriously. It means the world to me. If you enjoy the podcast, please check out the show notes. Leave comments. If you have any questions or anything, I'd love to connect with you. But also, if you'd be willing, leave a review with Apple or Spotify podcasts. Thank you so much for hanging out with me and Melissa today and we'll also give you an update in the show notes as to how he's doing. Talk to you guys next week.

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