Truth, Strength, & Clarity w/ Sandy Moss Moder

Meet author Sandy Moss Moder!  This conversation delves into the deeply personal journey of caregiving for a loved one with frontotemporal degeneration (FTD).   Sandy wrote a stunning memoir,  If I Have One More Brain Thing..., chronicling her experiences, the emotional and physical challenges she faced, and the importance of self-advocacy and support systems. 

Our discussion highlights the complexities of  loss, financial struggles, and the necessity of self-care. 

Sandy reflects on her grief and healing process after the loss of her husband, emphasizing the lessons learned and the strength gained through her caregiving journey.

We loved our conversation with Sandy and know you will too! 

To order Sandy's memoir visit https://sandymossmoder.com/

Today's episode brought to you by Ruby Care Senior Advisors    https://rubycaresenior.com/

Thanks For Listening!
Joanna Anderson & Sue Nicolaidis

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Chapters

• 0:00 00:00 Navigating Grief and Memories
• 2:07 Embracing Favorite Things and New Discoveries
• 8:14 Introduction to Sandy Moder and Her Journey
• 9:17 Early Signs of Frontotemporal Degeneration
• 12:31 The Challenge of Diagnosis
• 14:15 The Importance of Advocacy
• 18:57 Intimacy and Relationship Dynamics
• 20:37 Resources and Support Systems
• 25:22 Truth, Strength, and Clarity
• 28:18 Deciding on Assisted Living
• 34:33 Self-Care and Maintaining Identity
• 40:27 Advice for New Caregivers
• 53:34 Introduction and Call to Action

Transcript

You Forgot (00:05)
Hi Joanna.

Jojo (00:06)
Hello, hello, happy Hades and Dallas. It's hot.

You Forgot (00:10)
It is kind

of, it is hot today. I thought I was going to have a ton of Save It For The Pods because Annie Lane was with us this past week. I can't say any of it on the podcast.

Jojo (00:19)
Yes.

⁓

shoot. Does she listen?

You Forgot (00:25)
No, but she spent a couple of days with Jimmy, cousin Jimmy. And when we made the drop off, like halfway point, he was just like, Sue. And he told me he took her to family dinner at someone's place. there was a ton of people, like 20 people there or something. And they were about to pray and she was up making her plate, know, stuff like that.

so that's the typical funny stuff. she's just in her own little world. And it's not like she's super inappropriate. It's just, she gets in people's business. So I can't tell you the story. I'll tell you offline, but so I don't know. So I don't have anything for that fun segment this week.

Jojo (00:58)
something but it's like you know we like to keep it real on the pod and sometimes not everything is like happy and rosy i think i texted you yesterday that i was like having the worst sunday scaries and then it started to like spiral even more and like all this stuff on the news is just awful and then fucking irs and all the things and i had like a meltdown where i just wanted my mom shit i can't cry on

You Forgot (01:23)
You go, Joe!

Jojo (01:25)
Because she was like such an encourager and she'd always be like you got it It's gonna be fine and I just I just wanted my mom and I knew it like I can't have it

You Forgot (01:36)
What do mean you don't know why you're crying? I know exactly why you're crying.

Jojo (01:39)
I told Matt, I was like, I know exactly what she would say. She would say, Joanna, you're strong. You're gonna get through this. I love you and I just think you're a genius. And I just needed her to say that to me today. I didn't get it. So here we are in grief time, even though I I already grieved her.

You Forgot (01:57)
Yeah, I think what we're learning from talking to more people and being in the middle of grief, it's just so fluid and you don't know when it's going to hit you.

Jojo (02:07)
giggling with you like two seconds ago.

You Forgot (02:09)
Yeah, and you'll go back to giggling because you have an interview to conduct.

Jojo (02:12)
I know I'm like, sorry Sandy, I've been crying. But it did make me thankful that I can still think of my mom as someone who was such an encourager. She was positive. She just like put strength and good words into me all the time. So I'm very thankful for that.

You Forgot (02:27)
Yes, that's the first thing I thought of is that you do have that to call back on. And I mean, it is what it is at this point. It sucks. But like you had that constant encouragement and you you'll have it even after she's gone. But I'm sorry.

Jojo (02:33)
Yeah.

I

know, sorry, but you know what? I do have favorite things.

You Forgot (02:48)
Yay. my God, you're killing me. didn't realize yesterday was a mommy day. I just thought you were just like, you know.

Jojo (02:54)
It didn't,

it was just like last night. just had it. I just, was just tired. needed to go to bed. Anyways, favorite things, I had to read this book and I wanted to read it, but I needed to read it all in one day because I was so busy with work last week and we're interviewing this author today and I really wanted to read it. And I think, listen, I'm so scatterbrained. I had told you earlier,

You Forgot (03:00)
Okay.

Jojo (03:18)
I know about this app that helps you read faster. can't remember the name of it. Then I Googled and Googled and Googled, but I'm the worst Googler. I can't find things on the internet. And so then you, I know you're really good at it. So yesterday you were like, did you get that app? And at first I was like, I don't even know what you're talking about. And then I was like, oh yeah, that app. was like, no, I never found it. I can't figure out the name. And you were like, it's Speechify. I was like, oh my God, why didn't I just ask you to begin with? So I downloaded the app. I got the three.

You Forgot (03:27)
I can.

Jojo (03:45)
day trial for free, but I'm probably just gonna buy it. And this is the cool thing about Speechify. It's really, I think it was designed for dyslexic people. And I normally credit myself as being a very quick reader, but I was able to put the book into the app and it connects to your Kindle and it's really, really cool. And then you can set the verbal audio speed as fast as you want, up to 4.5 times faster.

My brain couldn't keep up with that, but my brain could keep up with 2.5 times faster as it was reading it to me. And I blew through that book in like five hours. It's genius. I know.

You Forgot (04:21)
Wow.

Maybe I'll look into it. But I mean, it's I'm such a brat. It's pricey.

Jojo (04:27)
I think I'm gonna just stuff it down.

You Forgot (04:29)
Yeah, if you use it every day, like who cares? You know, if you use, see I don't think I would use it that much.

Jojo (04:31)
Yeah, and it will read out loud to you.

I I could not believe how fast my brain could process the way this lady was talking so quickly. I still had the book in front of me, so I was reading along, but I was just going so much faster. Gwyneth Paltrow, which I know.

You Forgot (04:47)
Whose voice did you pick? That's who I

picked. Like when I was looking at it to do it, I was gonna do it, but I was afraid I wouldn't cancel the three day free trial and then I'd be on the hook and I wouldn't use it. And I have audible and you know, I don't know. I just was one more thing for when Anthony's looking through, you know, PayPal auto.

withdrawals. He's like, what's this? What's this? What's this? What's this? What's this? And I'm like, it's all the shit you use every day. It's every TV app. I don't know. Well, that's good.

Jojo (05:20)
Yeah, do you have a favorite?

You Forgot (05:21)
Cool.

yeah, actually mine is the book that we both read. The author's name is Sandy Moss Motor and she wrote a memoir and it's called, If I Have One More Brain Thing, which I love the title. it kind of, when you read the book and it comes up, it's kind of a moment of levity.

when he's just like, my gosh, if I have one more thing go wrong, and it's like, kind of see this, you know, how they're trying to have a sense of humor when dealing with, FTD, her husband had FTD and she was his caretaker and the memoirs amazing. And I know that we've talked about this before, but sometimes when there's a book or a movie or a TV show that is dealing with dementias, it's

not entirely relaxing or an escape to dive in because it's a hard topic and you know we're in the middle of it. I was in the middle of it whatever but this was so good and I was hooked from the beginning. She's an excellent writer and she intertwines her poetry through it and it all fits. just it makes so much sense and it was very enjoyable. It was a great read.

And I'm really excited that you are going to be talking to her soon. and one more thing though. Friend of the pod, Joyce Logan, she introduced us to Sandy. Joyce has Ruby care senior advisors here in the DFW and I'm eternally thankful for making that introduction because it was a great book and I'm excited to have her on.

Jojo (06:48)
I am too, I feel like I'm talking to a celebrity. I thoroughly enjoyed the book and I'm like still going through it. So normally I avoid that shit, but this was different. It didn't like affect me like that because her writing is so good and she has some sarcasm to her and some sassiness. I just liked it.

You Forgot (07:05)
Yes, exactly. So what do you say we just get into that? Okay, I'll talk to you after.

Jojo (07:08)
Let's do it.

You Forgot (07:15)
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Jojo (08:19)
Okay, I'm so excited to welcome to the podcast today, Sandy Moss Motor. Sandy is the author of, If I Have One More Brain Thing, a memoir chronicling her journey as a caregiver to her husband, Norm, who was diagnosed with FTD, which stands for frontotemporal degeneration. We are so honored to talk with you today and about your experiences, your insights, and the deeply human realities of caring for a loved one with dementia. Welcome to the show, Sandy.

Sandy Moder (08:48)
Well, thank you, Joanna. This is a great opportunity. I'm so excited to be a part of it, to share our experience.

Jojo (08:56)
Well, thank you. I read the book yesterday. I started it and I finished it and I was moved. I'm a crier. So there were moments of tears, but there were moments of hilarity and moments of sweetness. And I can't wait to dive in with this book with you because I want our readers to read it as well. So let's start from the beginning. What were some of the early signs that something was wrong and how did Norm...

Sandy Moder (09:01)
you

Jojo (09:22)
eventually receive an FTD diagnosis.

Sandy Moder (09:25)
Yes, some early signs even 20 years before I knew anything was going on, he would make like unusual kind of negative statements that were kind of hurtful. So one time I went down to kiss him good night and he said, what are you trying to do? Show off? And I'm just going, what? You know, it didn't make any sense.

And then when I talked to him about it the next morning, he goes, I didn't say that. And if I did, I didn't mean it. And he blew it off. And there was no connection there to that kind of hurt me. So basically, I kind of equate that as the first time I noticed something. And then I began to notice indifference and his disconnect to our relationship. He didn't want to cuddle anymore.

difficulty with intimacy. He would sit down and fall asleep almost every evening. And when I tried to talk with him, basically, he acted as if I had not said anything. He didn't equate responding to me talking to him. It was just as if it wasn't computing. So he wasn't interested in activities. He had lost his empathy.

And so basically for six years from 2013 to 2019 was the core of the disease.

Jojo (10:41)
And I forgot to ask you this, how old was he when all of this started? Do you remember?

Sandy Moder (10:46)
Well,

he passed away at 73. So minus six. So he was in his what would it be 676667? Yeah.

Jojo (10:56)
Yeah, that's true. And so some of those symptoms, I think it would be hard to be like, is there something wrong with him? Or is he just being a jerk? You know?

Sandy Moder (11:05)
It was that way. It was kind of, I'm just going, you know, why are you acting like this? And I would be angry and hurt as a wife would be. And so basically then it started to get more unusual. And I started to just kind of put that in the back of my mind. Something's going on. So at first I thought maybe he was having, you know, just midlife crisis because at that time he wanted to buy a Corvette.

you know, some of those unusual things that men might do, women do some things too, but you know, the car, he was a car guy. So the car was, and so I said, well then if we, if we can work it out financially. And he did do that. And he did get to enjoy it for a while, but those were just some of the things that he had never, you know, would have probably done before.

Jojo (11:54)
Yeah, and I remember reading in the book you eventually started to go to different types of doctors and professionals. Was it difficult to get a correct diagnosis? And were there any missed diagnosis along the way? Because this was so foreign back then.

Sandy Moder (12:09)
⁓

Yes, it was foreign. most doctors, even after diagnosis, and we would go to say, you know, even a neurologist, they'd go, well, I read about it, like in a paragraph in our book. And I'd say, well, are you interested in getting to know about that? And it was an older doctor. Well, not really, you know, it's just, yeah, I felt like there wasn't a concern. So we started out, I had Norm,

go to our family care physician. And I had written down some recent really angry episodes he'd been having. And so I made him take it to the list of the doctor. And the doctor believed, you know, me and as Snora feels true, and Norm told him, yeah. So then we were sent to a neurologist and we had an MRI. And it showed some

shrinkage of brain but at that time we were just told this is just part of aging and it's you know like we were just having lover spats and I'm going excuse me you know it's more than that so we I kind of live with that for a little bit then we went back to our primary care and he sent him to kind of an alternative type of doctor who dealt with mental illness

Jojo (13:15)
Yeah.

Sandy Moder (13:28)
So he kind of diagnosed him with having mental illness, which I did not think that was true, because this was even different. And so eventually then that doctor had a medical episode and could not come back. So that's when I found a neurologist and that's when Norm was sent for neurological psychological testing. And that's when he got the diagnosis.

Jojo (13:52)
Okay, I did see an overwhelming theme of you have to be your own advocate in this book and you have to keep pursuing. You have to go with your gut.

Sandy Moder (14:01)
Yes, you have to be very persistent. You have to trust your instincts about knowing this guy in your life for 30 some years. You have to stand up for that. And I tried not to be a mean person, but I would be firm and say, you know, there's something more going on. We have to pursue this.

Jojo (14:20)
Yeah, I think that's so important for our listeners to hear because I know they're going through it as well. So as the disease progressed, what were the most challenging changes you witnessed emotionally, physically or behaviorally?

Sandy Moder (14:26)
Yep.

Well, under FTD, there are various variants of the disease and the top one is called behaviors. So when you think about that, you can think about, a child has behavior issues and then you recommend them or you guide them or whatever. But these manifest as anger, frustration.

Normal things, his actions would be way over responsive. You know, it just didn't make any sense. I talked about in the book about we were going to go on a date to a car show and he is a car guy and he didn't have his sleeves rolled up and he had them unbuttoned, which was so unusual. He always buttoned his sleeves or rolled them up. So

being the wife I said, know, not angrily. I just said, do you want to roll up your sleeves? It's hot today. And he just turned and went into an immediate red face shaking tirade. His whole body was shaking. I'd never seen him like that before ever. And I'm backing up and he's still going and he just stands there. And finally I just walked to my bedroom and locked the door.

And at that time he had his own bedroom, which is what he wanted. And so he went and then for three days that just went on and on. He would come out and yell, say you're going to hell. And, know, just all these things that he would never have said to me and treat me like I am something foreign that, you know, I just didn't understand the whole thing. Yeah. And

Jojo (16:04)
Yeah, this was

your loving husband. So I can't even imagine trying to process that.

Sandy Moder (16:07)
Yes.

I just sat there in total shock. I stood there in total shock and I went to the bedroom and I locked the door and I'm going, I have just locked the door against my husband and I'm crying.

Jojo (16:19)
And did you lock

the door because you felt physically afraid?

Sandy Moder (16:23)
I did, I think, and my instincts kicked in. And I didn't say too much about this in the book, but I had come from an abusive first marriage. So that just kicked in that instinct that you better back up, you better lay low, just get away and just let it cool down, yeah.

Jojo (16:45)
actually wondered about that when I was reading the book because I was like, huh, I don't know if I would have locked the door. I wonder what's behind that. And you also wrote something else in the book that I just totally connected with. You said that when you were younger, maybe one of your parents had some mental illness and you went off to college as soon as you could because it was like,

Sandy Moder (16:48)
us.

Jojo (17:09)
too much to manage their emotions and feelings and that started to trigger things when Norm started doing this, like your childhood trauma as well. I don't know why that just stuck with me.

Sandy Moder (17:18)
Yes, it did.

Yes, it did. And I'm sorry, I didn't mean to interrupt. Yes, it did. And I had gone through therapy as an adult to try to understand my mom's mental illness, who came from a very abusive father family, know, family father, and alcoholic and et cetera. And so, and then my mom just never seemed to be able to cope. And then she had an issue with some drugs, medications for pain.

Jojo (17:23)
No, not.

Sandy Moder (17:43)
and that turned into abuse. so basically it brought that back up. Yeah. After Norm's death, I went through therapy to try to pull that all together. Yeah.

Jojo (17:55)
can tell

you're very self-aware of your emotions. It's really, really impressive. Okay. Yeah. You know, you can always tell when people have been in therapy. Like, you just know. Like me. Okay. So we kind of talked to you about this a little bit offline, but I think it's so important to bring up because it's never talked about.

Sandy Moder (18:00)
Well, thank you.

Jojo (18:18)
One aspect of dementia that's rarely discussed is intimacy. And I really appreciated your honesty in the book about how FTD affected your physical and emotional connection with Norm. Would you be open to talking about how that part of your relationship changed?

Sandy Moder (18:34)
Yes. And as I mentioned just previously, he didn't, he started not wanting to be with me. And in the book I say he would physically, if I tried to cuddle, just push me over on the couch. And I would say, you know, what's my, I'm just tired. You he always had a reason, but that wasn't who he was. And so that started very early. And then impotency came into play about that time. And so I had him, you know, go to the doctor, but the medications did not help.

And so eventually we realized that was an early part of frontotemporal dementia. And so, yeah, and so then I had to deal with that loss of relationship. And there was a book called Ambiguous Loss, and I can't think of the author off the top of my head, but that was a helpful book for me to say, you do lose the person and that part of your marriage. And then you have to evaluate

Jojo (19:09)
Yeah.

Sandy Moder (19:28)
you know, your marriage vows and what, how is your relationship going to be now and what do you choose to do? But it was sad. It was difficult. And sometimes I think he missed it and he would say that in therapy that he went to for a short time, but then they would give them suggestions, you know, uh, hug your wife, you know, pecker on the cheek. He would do it one time literally. And then.

Jojo (19:40)
for sure.

Sandy Moder (19:57)
would never remember. So it's that loss of awareness and it is sort of a medical term, that loss of awareness of the day to day that was going on with him was just calling.

Jojo (20:08)
Okay, yeah, it's really, really interesting. So as you were in the caregiving role and the coping role, what were some of the most helpful resources or support systems you relied on during Norm's illness?

Sandy Moder (20:21)
Yes,

I'm going to turn to my notes here. I make sure that I read these. So I have to find that. So this might be a place to put those. Yes. Cause I've got my notes here. some of the resources that not finding it quickly. never find things quickly. So basically,

Jojo (20:28)
Yeah, no problem at all.

We're not in a hurry.

Sandy Moder (20:42)
once we were given the diagnosis in the doctor's office, they did suggest AFTD, the Association of Frontotemporal Degeneration, which I did connect with by phone. And then I still received the magazine that they put up about every three months. And so that was my first connection with where to start looking for information about this. so

There wasn't a whole lot. The doctor would tell me, say we'd go for every three months for a checkup and I would say what was going on and she'd say, that's just FTD and I'd be gone. But I want to understand that. I want to get the overall picture of what I'm going to be facing. Of course, it's different for everyone.

Jojo (21:22)
Yeah.

Sandy Moder (21:28)
But then I did, there was a book out recommended by the doctor called, So It's Not Alzheimer's. And it was written by medical doctors saying this is frontal temporal. And each chapter was written by a different doctor. Sometimes it was kind of high medical, you know.

Jargon that was kind of hard to understand but as the disease progressed it and I devoured and went back to it off and on it helped me to kind of see where he was progressing and which variants that he was exhibiting at that time but for emotional support I just read I'm a reader I just read whatever I found and one was called green vanilla tea and it was her husband

had FTD and then it went into ALS and he was in his 40s. So there were young children to deal with. just ambiguous loss. Then that was kind of knowledge, emotional support. And then it's like Brene Brown. Okay, I just started reading her and just, you know, trying to figure out where am I at here? What can I do in this difficult situation?

Jojo (22:26)
yeah.

Sandy Moder (22:34)
And then old standbys that I had read were Sue Monk Kidd. I followed her since she was an early author in magazines. Ann Morrow Lindbergh. I mean, she went through so much in her life and took care of her husband at the end. So I started to find people to identify with. And then Gladys Taber, I found her. And so I ordered her books and she lost her friend and she wrote a book about grief. I have reread that thing three times at least.

Just so then for physical support for him, daycare. I discovered daycare just up the street. And that gave me a place to take him so that I could get the basic appointments, grocery shopping and things like that that gave me a break for that. And then at RespiteCare, I had one RespiteCare time. I got a grant from AFTD.

That was very helpful and I planned a little stay-at-home for myself. And then eventually assisted living, yeah.

Jojo (23:32)
on the flip.

Okay, on the flip side, were there any resources or forms of support that you wished existed at the time?

Sandy Moder (23:44)
Well, I remember the last doctor that we had was just geriatric internist. He said, unfortunately, there's very little offered save for under insurance and so on for FTD. If he had ALS, which is a cousin disease, there's so much known about it. There's all these studies, which there's very little on FTD even yet. And then there were support.

you know, aspects in place, like maybe you could have help with in healthcare and things like that. But because Norm could do all of his ADLs, which that is dressing himself, you know, being able to eat by himself, doing the basics of life by himself, then he did not qualify for much help. So we basically paid out of pocket.

Jojo (24:33)
and it's so expensive, so expensive.

Sandy Moder (24:35)
It is

and that was my big panic. It was my biggest like wake up at night scared worried that we would run out of money and we were getting closer. Yeah, so.

Jojo (24:45)
I totally get it. We're

in a point right now with my mom where we're trying to calculate how much longer she can stay in her memory care unit based on how much money she has. It's like we should not be having to worry about that, but we are.

Sandy Moder (24:54)
Yes.

We

should not and it is a worry for everyone and that has a loved one or a spouse or a parent or whatever in yeah, a facility care and I know it's more expensive than it was six years ago. I wish that we had more understanding of what families are going through financially. A previous podcast I did that was based on the financial worries. That was quite interesting that someone wanted

Jojo (25:24)
Well, we'd love to

have you back for that because it's kind of our soapbox about, to medicaid and all of these things that caregivers are experiencing right now, but that's for another topic. Okay, so one of the things I loved in your book and you actually signed our book with three words.

Sandy Moder (25:27)
Have you?

Jojo (25:45)
I just love it. Truth, strength, and clarity.

Sandy Moder (25:47)
Yes, okay. I'm

just looking at my notes. Here it is. Truth. So I asked for, so I'm sitting here one day after the diagnosis and I'm thinking, what do I need? I'm going to need a lot. And I don't even know what I need to go through this. And so I thought of three things, truth. And I needed to face each moment with truth.

Offering me the ability to address the observations and needs accordingly. Then I could get him the right kind of care if I was being honest about it. Where's he at at that moment? Paraphrasing that. Then strength with energy and power for my mind, body and soul. I gathered knowledge, met the challenges presented and began each day caregiving all over again. So it gave me the ability to do it the next day.

Then clarity. So without clarity in mind, I felt I was to come to the overwhelming duties and decisions of caregiving. It was bigger than either of us, probably the hardest thing I'd ever done in my life. And then you have all the emotions going along with that. So I wanted clarity of mind at that point.

Jojo (26:57)
think that's just so strong and so powerful. And I can't believe that you were able to come up with that in the midst of everything you were going through.

Sandy Moder (27:05)
Well, I don't know why I'm wired that way, but I've been through different things in my life and I guess words and definitions mean something to me. And if I can have something concrete to lean on in the ambiguous moments that you don't know what to do, then I think I could always say you can do this. You know, it wasn't that I was great at everything, but I really tried very hard to.

Jojo (27:26)
Yeah. ⁓

Sandy Moder (27:31)
you know, do the best I could for him.

Jojo (27:33)
Yes, and it comes through in the book. It just shows, I could just feel how much you loved him and love him still.

Sandy Moder (27:40)
Yes, I do. It's

been six years and I still think of him. Yeah.

Jojo (27:45)
One of the hardest choices for many caregivers is whether or when to a loved one into assisted living. I know that was really hard for my family. How did you come to that decision and what made you feel confident or conflicted about it?

Sandy Moder (27:53)
Yes.

Well, first of all, I was a worry of money, so I avoided it for a while, okay, thinking I have to just keep doing this, even though I was getting to a point at about five, five and a half years, I was exhausted and so on. But there was an angry episode, and I tell about it in the book, that I realized that he could have hurt me severely or done me in.

Jojo (28:13)
Yeah.

Sandy Moder (28:24)
because of his inability to control himself and his emotions and his anger and frustration, which is what caused the anger, I think. And so at that point, I'd always said to myself, if I ever feel like I'm in danger, that will be that kind of danger. That will be the point that I make that decision. I knew it was coming. The doctor was telling me it's getting closer. He's, you know, less inhibited. Yeah.

or he is uninhibited. And so basically, I knew it was coming, but I was just trying to deal with, you know, the money issue. And then I went searching and then finally hired Ruby Care and a lady called Joyce Logan came into my life. And I think you know who she is. And she basically, yes, she referred me to you or yeah, you guys.

Jojo (29:08)
Yep.

Sandy Moder (29:12)
And so basically then we went seriously looking, we gave it a week to find something and it was difficult because a couple of places wouldn't take FTD. They were fine with me signing up until I put the diagnosis down and they go, we don't take FTD people. And I would say, why? Well, we just don't. And so basically I think it's because of the issue with behaviors sometimes being

you know, intense, I know they had to take care of considering other, you know, residents, if he would be out of hand. But I must say, in all the eight months he was in assisted living, he never once exhibited that, that kind of behavior. Yes, it is. And again, that aspect of him being able to control it around other people.

Jojo (29:51)
Isn't that fascinating?

Sandy Moder (29:59)
But around me, he had anger, great anger, and felt I controlled him all the time. And I tried not to, but you know, if he's climbing ladders and he has no balance, I have to make him get down. And so I had boundaries and I had to assist him when he fell frequently with the lack of balance. And so basically, but he saw me as the enemy, which was the hardest thing for me to accept, I think. Yeah.

Jojo (30:17)
Of course.

Totally, it had to be so difficult. And I want to point out to our listeners who may be going through this right now and you're wondering if it's time to move your loved one into assisted living, we see this recurring theme all the time that eventually it boils down to safety. You moved Norm for your safety and for his. We moved my mom because she was no longer safe to live in a house by herself. She was leaving the stove on.

She was taking too many of her medications. And it honestly made the excuse or the reasoning to her easier. Because we could say, this isn't our decision. This is based on your safety. And so I think people just need to put that in their back pocket that if they're struggling to decide or how do we explain this to mom that we need to move her, always think about their safety first and then approach it that way.

Sandy Moder (31:13)
Yes, and that's kind of how I did approach it. Also, I was getting very tired. And so I realized I was getting thin, wearing thin, and I didn't want, you know, not to be patient. But it was just getting harder because it used to be like, well, every week he did something. Now it's every moment of every day almost. And yes, he would leave the stove on. He would leave the sink running. He would go out and try to use the saw to cut down limbs, but the saw would be heading right toward his arm.

Jojo (31:19)
Yeah.

Sandy Moder (31:41)
And you know, just all the time, I couldn't leave him alone at all. The doctor said, don't, and I'm going to already understand that. So then that has to change. That changed my life again. Well, that's where the daycare came in, you know, and so on. And so you're just constantly having to change with their changes. And yes, so when I did take him to see a couple of places and I did explain to him that this was time.

Jojo (31:42)
Ugh.

Sandy Moder (32:08)
And he was pretty good about it. I think it made him feel bad to leave his home. But again, in the book, I talk about how he wanted his own apartment. He got his own apartment. And basically, that was my biggest leverage with him because he wanted to live alone.

Jojo (32:18)
That's right.

Yeah,

yeah, I found that fascinating too. It was not the situation with my mom, but she's got a different disease. So how did you protect your own identity during this time emotionally, spiritually, even creatively? What did your self care look like?

Sandy Moder (32:40)
Well, my self care at the beginning was more like, just get knowledge, just get knowledge, you know, so you can deal with this. And so I didn't practice that too much in the beginning, but as the years went by, probably the last two years, I really realized I had to take time for myself. Sometimes a lunch with a friend, phone calls, you know, things like that with friends and family. I also kept teaching my art classes because that rounded me.

Jojo (33:05)
I

Sandy Moder (33:06)
And I didn't think about the disease during that two hour session with my students. I could focus. And, you know, I sometimes would take a nap when I took them to daycare. Sometimes I talked about going and getting chocolate bars and ice cream and sitting in my car in Stonebridge at some of their little lakes and watch the ducks.

you know, was because he was worried about money. So it's like, you know, okay, what can you do? And so basically, I just did little things that gave me some peace of mind. And then reading, I just, you know, read more and more, sometimes just funny things. Yeah. Or sometimes just casual things didn't have to be getting knowledge. It could just be for enjoyment. And I would sometimes do a little shopping just to go out.

Jojo (33:29)
Yes.

Sandy Moder (33:56)
you know, and not necessarily buy anything. And I talk about going to the grocery store and touching fruit and vegetables and watching people interact and talk to each other because it was normal and I didn't have normalcy. It's kind of a strange thing, but I didn't do it every day. But every once in a while, I just thought I have to get out of here. Yeah. And go be normal.

Jojo (34:03)
Yes.

Totally.

Yeah. Yeah, I think that's

my Just feeling normal again, because you forget what it's like. Other people aren't dealing with this every single day.

Sandy Moder (34:28)
Yes, yes, it becomes your new normal. And I didn't want to really succumb to all of that. Yeah. That and I think for you, you have to have your own life as an adult beyond your mother's. Yeah. yeah.

Jojo (34:29)
Yeah.

Yeah. Yeah.

Yeah, and of course there's guilt that comes along with that, that I

can't have my mom living with me because I've got all these other things going on, but it is what it is.

Sandy Moder (34:47)
Yes, it is. And

I did mention too, in the book and I think in my notes, that they start to fit into the other world, they start to fit into the demented world, okay, much more than they do what we would call the normal world. And so when I realized that one day, and that was confirmed to me by someone in the business,

Jojo (35:00)
Mm-hmm.

Sandy Moder (35:11)
That just kind of took some of that guilt away, you know, not 100%, but I also realized guilt is not productive, you know, for caring for your mom or caring for yourself or anything. Did I have it? Yes, I wasn't perfect in this trip. But when I realized he was fitting more in a different world that I could not enter, because I'm not there mentally and physically, then that let me let him go to that world a little easier.

Jojo (35:38)
That is such a good point that I never thought about that. But once you said it, I'm like, yeah, that makes total sense. My mom does live in a different world.

Sandy Moder (35:44)
Yeah.

Yes. And they need kind of that protection for that world, know, smaller space, not seeing the frustrations of things she can no longer do at home or with family. They need that, I think. And that was like really something that just helped me be okay with it.

Jojo (35:46)
Yeah.

Mm-hmm.

Yes, I get that. So let's move on to the grief and the healing part of your story. After Norm passed away, how did you begin to process your grief? Clearly, I'm still processing my grief and my mom hasn't even died yet, but what's helped you most in your healing journey?

Sandy Moder (36:19)
you

Yes. And I'm still grieving sometimes. Like I think what last Saturday evening for some reason, I felt very alone. You know, I miss the relationship in the evenings, I think, or on the weekends when we would do things together. And so I just had a good sob, you know, but I thought have a good sob and then go on. And then you, it just is the outlet for your, you know, pent up concerns and tension and sadness and so on.

Jojo (36:41)
Yeah.

Sandy Moder (36:52)
So basically I did do the therapy for three months and it was based on a book and I can't tell you the name of it at the moment, but it was based on a book by the therapist and I just visited by zoom with her every week for three months. And we, I just set aside the money to do that. And we talked about the things I had experienced before, how it brought that back up.

and then how to get back to remembering the good times I had with Norm. I think that was really hard. And then what do you do with yourself? After he died that first week, I'm just sitting in the house going, so what am I gonna do? He's not here to take care me. And I didn't know what to do. Because it's been my life for so long. And so then I had to start to evaluate. So I bought two puppies. ⁓

Well, kind of. They were also training together like toddlers, know, potty training. So, and I still have them. They're laying at my feet right now. And so I bought two puppies. And I think that brought me to a realization that I had a new focus, you know, and that was important. But then I also decided I need to connect with friends and ⁓ family and

Jojo (37:42)
That's the best solution!

Sandy Moder (38:08)
start to figure out what to do with my life. Then unfortunately COVID came along and then we're quarantined and I'm gone. Are you kidding? And so my family had always been into my paternal side had been into genealogy. So I thought I'm just gonna get online and see what I could find. And my gosh, I just followed this journey for months, you know, and I got really obsessive about it and found, you know,

when we came from England to the colonies in 1642, who knew not that long after the Mayflower and so on. And so now I have all these books. then later on, my father passed away and I inherited all the photos. So I just put all of that together and started to build our family history from 1395 up. And so that, I think I needed projects. I'm kind of project oriented anyway.

And so I needed a project and that became a project. I also didn't want to live in this house anymore because it was our home. It wasn't mine, but I couldn't afford, you know, to make a drastic financial change. And I didn't want to make a change too quickly and then regret it. So I just had to.

a local painter that my friend knew and I had him paint the office and I had the bedroom painted and the bathroom. And then things, some of the things that were ours, I decided to donate and then maybe replace them or not with things that maybe I was more interested in now. So I started to think about how would I want my space to be for me, not for the two of us, but for me.

And so I have lots of things we purchased together and did together, but I also changed things out. And he was six foot four and I'm five foot two and no sofa fit me. So I don't need the sofa, which was getting kind of natty anyway. And I went looking for short, shallow sofas and I found one at a consignment store for a few hundred dollars.

Jojo (40:01)
that.

Sandy Moder (40:12)
and had it delivered to my house and I still enjoy it because my feet can touch the floor. So it was kind of really silly things like that, but it made it my space. I fit now in the space and you know, and there are things that remind me of Norm every day, but it's the things that were happy times. So yeah, but there are things that are just now my new history and I think that's healing. Yeah.

Jojo (40:26)
Yeah.

that's good.

And that's also amazing too.

I love that. So as we reflect on your story, what would you say to someone who's just beginning this journey of caregiving for a loved one with FTD?

Sandy Moder (40:42)
Thank you.

Yes, for the diagnosis of FTD, would say contact the Association of FTD right away. am just, you they have now much more information and they can, you know, they have things online that can share people writing about their experiences, you know, of their spouse with FTD, et cetera. In fact, if you check my website,

They asked me to write an essay and you can find the essay there based on the book. ⁓ But they just offer so much more as they have grown and received, you know, funding too. I would say address your initial personal shock of the diagnosis. Because in the book I say, I'm in the backyard and all of a sudden I can't breathe. And I'm having an anxiety attack, which I had never had one before.

So I didn't realize how overwhelming that diagnosis was. So I had to really stop and think about, you know, how it's affecting me. Yeah. And what can I do to protect myself from that? Also education. FTD is crazy. Dementia is crazy to deal with in quotes. Okay. ⁓ They're not crazy, but it feels crazy. And the...

Education is key and I'm one for education. I think if you read the books, if you go to support groups, if you talk to people, you're gonna learn just a little more each time, which then will be there in the back of your head when an episode comes and you're going, yeah, I can do that. Yeah, I get that. I now see what's happening. And then I can start to learn to deal with it. Because every time there was a plateau downward, there were more new things to deal with.

So learning to deal with his outbursts were really hard and there's a lot written about it, but until you're in it, it's kind of hard to remember what to do. But I did give myself boundaries and I said, if this is what he's doing, I will walk away and let him just chill out himself. Just go to another room.

And that bedroom with the door lock was sometimes my five minute safety. And then I could come back out and deal with it. Just kind of try to divert him. Sometimes that works, sometimes it didn't. Usually I suggest that he just go to his room and just take a break. And usually he fell asleep and then it was over. Yeah. So those are really difficult. So setting boundaries for his safety and my safety.

Jojo (43:17)
Okay.

Sandy Moder (43:22)
became really key as the progression, progressions came. I really worried I would become ill and then who would take care of him. And so I really felt like that I had to stay well and protect my emotions and my physical wellbeing. And that's when I started to take more care of myself. Time to relax, time to get away, time to rest.

Also being honest about how much you can take. I've read books where spouses put their demented spouse soon after the diagnosis. It's not a right or wrong. It wasn't a judgment. It was more like this is what I knew I could bear. And I took a lot of brunt with this, mainly because of money, but also because I just wanted him to have good care.

And I felt like I could do it, you know, as long as I could. But then when things started to take a toll, I had to be really honest. I don't know how much longer I can do this. And I think I had to be honest and say, I can't go much longer. And I think if that's a truth for you, then you have to accept that truth and act on that truth. And we're all in different places, you know, different health.

Jojo (44:18)
Yeah.

Sandy Moder (44:32)
aspects of our own personal selves, if we have children. say if you're younger, and you have a spouse and children, so you have to weigh all that. It's not a one answer. And that's where I think being kind to yourself and not being guilty all the time. Yeah, is important to consider. It's a battle though.

care options Daycare just became my option because it just worked for my schedule. Yeah, and What I wanted to do then when it came to the facility do your homework check out go interview online you can find questionnaires What to ask people? Which I found they didn't always like being asked But because mine was kind of long because I'm always very detailed and so on but I learned to also

Jojo (45:10)
Mm-hmm.

Ro?

Sandy Moder (45:18)
use my intuition, like look around, sense how are they interacting with the residents? know, are they all just sitting there starry-eyed at a TV or are they being asked and motivated to do an exercise class, to go to art class? And so I found this wonderful place for Norm in McKinney and it just was the perfect place

for where he was at. they, you know, he art classes, they did an art show and he got to show his carvings and his artwork and the carvings that he did when he was well. And even a daycare, Norm wanted to show his carvings and do a little show and tell, which wasn't how Norm really was. He just lost those inhibitions. And so I went to the lady, the couple who ran it and they go, yeah, great. So we set a time.

And some of the family members came of the other daycare people. And he did like he was presenting at work. I have photos of it, a little video. I mean, I just thought I'm goose bumping right now because that gave him a moment of being real and presenting himself in good light when he didn't always have the ability to do that. So I just look for opportunities to do that.

Jojo (46:14)
I love it.

Yeah.

Sandy Moder (46:33)
And if he said he wanted to do something, like when he was in daycare, they were gonna have a style show and all the ladies were gonna do the style show. And he says to me, I wanna do it. So I went to the program director and I said, he wants to do it. She goes, great. So she came and talked to him while I was there. And I have a video of him strutting, honestly strutting down the aisle and all, know.

It was a family time where a dinner was going to be offered for the family after the style show. And everybody was like, you know, whistling and clapping and yelling, yay, Norm. And he had his cane and he's just strutting down and he's looking left to right. I mean, I just, I have a video of it and I will always cherish that moment because it wasn't too much longer after that he was gone. So looking, if he said he wanted to do something, then I would jump on it.

Sometimes it didn't work out for him later. He would renege but if he wanted to do it so looking for those Possibilities, you know before they don't ask anymore That was I guess he so but not feeling guilty at least as little as possible because did I feel guilty? yeah I mean I couldn't fix it. I didn't cause that disease No one causes this disease of our loved ones. And so I tried

Jojo (47:40)
I love that.

Sandy Moder (47:57)
even though I might be overwhelmed to basically just say, I'm doing the best I can and try to accept that. Yeah. ⁓

Jojo (48:06)
That's so good. I think you made an

interesting point that we always say on this podcast is that once you've been in the caregiver dementia world, all judgment towards other people in the world goes right out the window because

Sandy Moder (48:20)
That is true.

Jojo (48:21)
Yep. If you have an experience, it's just so hard and however you're dealing with it is the right way to deal with it at that moment.

Sandy Moder (48:22)
It's just so cold. Yeah.

That's right. And so when I said like, you know, I read this book and this woman, you know, just put her husband right away into some facility. And it I'm going, I don't know what she was experiencing from him. You know, we don't know. And so for her to be strong enough to write that book, I got encouragement from that book. I didn't take it as a negative.

I, you know, and she meant it to say it is a personal choice. And I thought that was really brave of her to say, you know, what happened. And then she tried to put her life back together, you know, but there, she always visited him, but it was just, she was just trying to help herself and to be well, you know, and in all aspects. So it's a really hard decision, but I think,

I think you almost know if you trust the knowledge and your wisdom within, I think you just kind of know when it's time. you know, they go screaming and hollering sometimes, but in long run, yes. And that's really hard, but in the long run, they settle in and that routine for them is very helpful. Yeah, it's needed. Yes.

Jojo (49:21)
Yeah.

You

It's so true.

Well, listen, I have one more question and I'm going off script just a little bit, but I'm just curious. want to, what, after looking back on all of your experience with Norm and being a caregiver, what did you learn about yourself?

Sandy Moder (49:40)
Okay.

wow, you didn't ask that ahead. Okay. That's okay. I would love to answer that question. I learned I was stronger than I thought I could be. And this is gonna make me cry.

Jojo (49:53)
I'm sorry.

Uh-huh.

I'll cry right with you.

Sandy Moder (50:04)
I learned what love really was. Because sometimes a relationship, you know, it's give and take. But I learned when he couldn't give, I still wanted to lovingly give. That, you know, was hard to do. But that was, that's what I chose. And I'm really happy that I don't have regrets about that. And

I guess just knowing I have strength. And that even entered into being on my own now for six years. It's been six years in May since he passed away. And that is I've had things break, my house flooded with water. I had foundation issues. Okay, so all these things in life that happen normally.

I started feeling like wasted, like every little thing that happened, you know, the refrigerator died, the oven died, the stove, you know, the washer dryer died. It was 20 years and everything was dying after he died. And I was overwhelmed with it. And then I thought, but you can do this. You can look online and get information. You can make a decision. I went and bought my first car by myself and I did my research. I knew how much money.

and how much I was going to spend. And I chose something that would be in that ballpark. And I chose my first car. So I'm driving home and Norm has at a church in McKinney has a plaque in their memory garden. And I drove by and I said, did I do good, Norm? And he said, yeah, you did good. I mean, he didn't say it, but I could hear him saying that. And so basically I started to say, I can do good. I can do this. I'm smart. I'm capable.

And so does it sometimes overwhelm me? Yes. But then I sit down and I give myself about a day and then I go, okay, you've had this little pity party, which isn't even a bad thing. It's an okay thing to be overwhelmed by something. But then now how do I, where do I start? What knowledge do I need? Knowledge is always so important to me. And then I just work it out. Sometimes I'm really tired through the process.

because it might take weeks to say, the bathroom shower over because it's falling apart. But I'm really pleased with how it turned out. I'm an interior designer at heart. I just love it. I always have. And so it was really fun to design some of this stuff. So I thought there's fun to this too. you know, I get overwhelmed, a problem comes up, and then I try to solve it.

And it doesn't always go smoothly. Workers don't always, sometimes I make them come back. If they don't finish it up or something, right? But I am capable of handling these decisions and this process in life as I age. Yeah.

Jojo (52:48)
I that. I love that. Well, listen, Cindy, thank you so much for sharing your story with such honesty and heart and wisdom. And for those of you who want to read more, mean,

If you know me personally, I'm getting this book for you. Sandy's memoir, if I have one more brain thing, is available at www.sandymossmotor.com and we will link it in our show notes and on our Instagram as well. I just want to say thank you so much for coming on. I've really, really enjoyed talking to you and I know that this episode is going to mean a lot to a lot of people.

Sandy Moder (53:20)
I hope so, that's my goal. It's nice to have a face with your voice and name. And thank you, it was very comfortable to talk with you and share our, it's our story. I don't say it's my story, it's our story. And ⁓ I appreciate this opportunity so much, it meant a lot to me.

Jojo (53:32)
That's right.

Okay, thank you, Sandy. All right,

Sandy Moder (53:38)
Thank you.

You Forgot (53:41)
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