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Tea With George
Ep 10 - Life after Loss: Frontotemporal Dementia
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An interview with Renee Marsh on music, hardship, and hope.
#Political/Conservative/Judeo/Christian/Constitutional
0:00:08
G
Well, hello. I’m George Caylor, Tea With George and today’s segment of Get Real is with Renee Marsh. Renee is a fabulous composer, singer, pianist, and she happens to be the mother-in-law of my attorney, Caleb Mast. And so, I’m pretty close to Renee here in so many ways. Also, she’s a follower of my savior, Jesus Christ so we’ve got a whole lot in common here. This morning I would like to talk about your life, Renee and Id like to ask you some questions of how you got form there to here and in a little while we’re going to have some of your music and of course people can buy your cd and we’ll figure that out in a second and they’ll be hearing some of your music right now. But when I was listening to your album for the very first time I was fighting tears several times and I’m a pretty tough guy. But not tough enough for that. Let’s start off with how did you get started in music? I mean you’re a musician. Was, did it just come natural to you, or did you just think up one day, hey I want to be a musician? How did it start?
0:01:26
R
Well, my family is very musical. My mom played the piano and we actually all sang together as a family years ago when I was about 10 or 12 years old. I’m, the oldest of four and we actually sang as a family on the Panorama Show that was in Roanoke at the time. So I’ve been singing since I was knee high to a grasshopper and actually I had a trio with my sisters and so harmony just kind of came natural to me and so I’ve always just loved, loved music.
0:02:05
G
A little bit like me, I’m a musician. But I was never aloud to sing and I ended up playing bass. But my daughters, a little bit like your sisters, I taught one guitar, one base and they musically passed me like the speed of light. And when they were in college they never asked for money. If they wanted some money, they’d just go down to the local coffee shop or bar and do what they call tips and tapes. Were you commercial at the time or did you just do this for the fun?
0:02:40
R
Oh, no. I, I actually wrote my first song probably about 30 years ago. And, and really I just wrote music just, it was really therapeutic for me just to sit down at the piano and, and just, just sit down and just play or maybe pour my heart out to the Lord. So, I think it’s, it’s definitely been in the last two and half, three years that I started writing music again. There were a number of years that I, I felt like my music-writing ability was just all dried up just because of difficulties and sorrow and a very hard time when my husband just started acting really strangely and we’d probably been married for about 20 years and anyway he started to, to act very strange and repeat himself all the time and then he just started, just really mistreatment of me and even of the children. We’ve got four, well now four adult children. But anyway during those years, I didn’t really write much music at all.
0:04:05
G
You know, it must have been terrifying. You’ve heard of the term creative juices and when you said the music dried up, I know where creative juices come now cause they’re either there or they’re dried up. Your husband’s name was Doug right?
0:04:25
R
Right.
0:04:26
G
I think maybe the abuse came from the terror that he was feeling in his heart. By the way there’s a famous actor, Bruce Willis, who got the same disease that Doug had before he passed away. Talk to us about the disease and what happened, what was the manifestations and how di you get through this?
0:04:46
R
Well, hindsight’s twenty twenty and when you’re going through something like that and I was like what is going on. What has happened to my husband? And so, at the time we were living in Roanoke and Doug, I think at first he just, he just seemed really depressed. And I thought maybe it was just like a midlife crisis and he, at the time, he said to our assistant pastor, he said I feel like I’m losing my mind. And that’s what was happening. He was losing his mind. And I think he was scared. And, of course, I, it was confusing to because my husband was a believer, a very solid Christian and when he started mistreating and then he just, just furious anger and then he would, then it got to where he was screaming at me and even at the children, very volatile. And, it was very confusing for me. I, I went to bed so many nights crying myself to sleep. And then it got,
0:06:16
G
How old were you at the time?
0:06:17
R
We had been married for at that time probably about 20 years cause when Doug passed away we had been married for almost 30. So, when we got the diagnosis of frontotemporal dementia I, looking back, I had figured that he had started some of that strange behavior maybe, maybe eight years prior. Because once we had the diagnosis he lived pretty much exactly two and a half years. And that is the average for someone that’s diagnosed with frontotemporal, or FTD as they call it.
0:06:56
G
One of the, one of the manifestation, I mean there must be others in our listening and viewing audience here that are maybe, maybe their friend or mate has a manifestation of it. How exactly does frontotemporal dementia work? I mean, it comes on very slowly. Is that what you’re saying?
0:07:24
R
It came on very slowly with my husband and I mean for years I didn’t know what was going on. I thought, well maybe he’s just depressed. We went to the doctor and though maybe he’s just in a, just a depression and just needs some help. And anyway, we just, I just got desperate. I was like I’ve got to just get some help for him. So, we, we moved to Lynchburg after, what, two years. Doug was determined to move. I mean he, it was just like, I’m, we’re going to move to Lynchburg. And it, it made, it made no sense like why, why Lynchburg? We’re happy here. We were, I was comfortable, was in a great church, ministry at church. Anyway, and I knew if I didn’t just give into what he was saying it, he was not going to let it go. So, so it was almost like a lot of OCD. And even when we were getting ready to move he would keep repeating, so do we have enough people to help us are we… He just kept repeating the same thing and the same questions over and over and he would ask my son, do we have? The same questions and and, and my, my son he came he said, mom if dad asks me one more time who’s going to be helping. And of course we were, it was very confusing and he had just, he’d lost his joy and just behaviorally became really hard. And, and the thing is you can’t reason with the person that has dementia. There’s no reasoning with them. So once we, once I got him tested, finally, at UVA and, and thus the diagnosis, it explained everything.
0:09:32
G
Did he understand the diagnosis?
0:09:34
R
At the time, when, when he was told, all the way home he kept saying I can’t believe I’ve got dementia, I can’t believe I’ve got dementia. He would keep repeating that.
0:09:48
G
Well, he was so young I mean that generally if it comes on doesn’t come on until old age and,
0:09:54
R
Well, frontotemporal is one of those dementias that hits younger people. So Doug was 57 and a half when he was diagnosed and yes that is young. And you… it’s… it’s heart wrenching. I watched my husband who was a very strong man, just a man full of passion and zeal and he loved people and just a excellent musician. He was such a good drummer and a guitarist and just so talented. And anyway, he became very different from the man that I married. And, and so over that time, so we did move to Lynchburg. And it was very heart, it was a heart wrenching move.
0:10:49
G
You left your friends and neighbors and,
0:10:52
R
I, mmhmmm.
0:10:52
G
Well, I think, you’re saying he acted like a different man. He was a different man. Well, the lyrics to your songs are, its like they can’t have come from a real person, they’re that good. I mean, I’ve seen, I’ve seen a lot of songs because I was in the business. And we did records and all that kind of stuff but, I’ve never seen any better than your lyrics.
0:11:19
R
Aww, thank you.
0:11:20
G
How did you come by those lyrics? I mean were you a songwriter before and were, was thing a new thing for you?
0:11:28
R
Well, as I said earlier I, I wrote my first song probably about 30 years ago and actually after we first got married. And I really just did it, I thought, okay Lord if I just do these songs just to sing to you then, that’s okay. And let me adjust my headphone here. But after Doug passed away three years ago, in March of 2020. And that was, when he passed away was very kind of God because had he died one day later, we could not have had a funeral. When everything was shut down from COVID, and so, and even the weekend before he passed away, at the time he was staying at a memory care facility. I had to put him in about six months before he passed away because I couldn’t take care of him any more. It was just too hard for me. But anyway because at that time, he, he was having trouble swallowing. He couldn’t talk anymore and, and it just got too difficult for me. But anyway after he passed away, about six months after, I was, I was actually, I don’t want to say recovering but, God blessed me with my oldest daughter and son and family who ended up moving to Lynchburg and they lived with me temporarily for six months after Doug passed away and that was the kindness of God because he didn’t want me to be alone. Cause I had been alone six months prior. And so anyway, so obviously when you’ve got a house full of kids and you know just, it was very lively.
0:13:27
G
Now, let me ask you a question. I’m a wealth manager. That’s what I have done for the last 50 years after I retired from the touring rock and roll business. And as a financial planner I’ve seen a situation where I’ll run into a widow who’s destitute because her husband died. I guess you weren’t destitute. What, what did Doug do that made you okay financially?
0:13:53
R
Well, I, I was very bless because we had a life insurance policy on Doug and but it was so important because you just, you don’t know what’s going to happen and Doug was, I mean he had an NBA I mean finance was his forte and he was a very good money manager so I was very, very blessed that I didn’t have financial problems after that. So, my house was paid off. I had no debt and just very, very blessed and I know that’s not the norm, but.
0:14:37
G
It’s the norm for men who truly love their wives. I think the saddest words I’ve ever heard at a wake, you know, before the funeral and everybody’s talking and gathering around, talking about the deceased, the very saddest words I ever heard were, he didn’t believe in life insurance. And oh that just cuts me to the heart when I hear that, those words. Well, the first song that you wrote is it, afterwards, is it your favorite? Or is there another song we’re going to hear today?
0:15:11
R
Well, actually the, the first song that I wrote after Doug passed away was called what you’ve planned and, so I was sitting there in the living room after my daughter and family moved out and I, I was just kind of numb. And just, I was just sitting there, of course it was real quiet for the first time in months. And I was just sitting there in the quiet and these words came to me, where do I go from here? My life’s turned upside down and I don’t know which way to go. Father I know you’re near, you’re close to the broken and the weary, wounded soul. That was the first one. And in two days God gave me two of the three verses for the song. But that was the first song that he gave me. And then the second song is actually the title song for the album, Hope On. And actually, many of my songs are, they’re inspired by, maybe there’s a quote or something that someone said, or phrase that someone said that I had heard. And years ago, Charles Spurgeon, in one of his sermons he said hope on, hope ever. And those words just stuck with me, hope on, hope ever. And, and that is the first song that I released exactly two years after Doug passed away. It was the very first song. I just released three singles that ended up being on this album. But, you know, my story is a story of God’s incredible faithfulness and scripture says that you know He’s faithful when we’re faithless and I am a testimony of that because those years were so hard and so heart wrenching. And, and people have no idea how difficult it is to be a care giver, you have no idea how hard, how stressful, how exhausting it is.
0:17:29
G
Actually, I do because we have statistics. Often times the caregiver pre-deceases the person that they gave care to because it is so hard it literally wears them out to death. They die early. That happened with my mother-in-law. She was caring for her sister. She died about ten years before here sister. What you said about hope reminds me about one of the girls in Uganda. I’ve got missions in Uganda and Kenya and a girl named Phiona Mutesi. In fact Walt Disney Studios did a movie on her called The Queen of Katwe. And when I was interviewing Phiona I said how did you go on with your life? Every morning you woke up wondering if you were going to have something to eat that day. Every night you went to bed wondering if you might be killed in your sleep. And she said hope, hope. If you have it, you’re going to survive. Those who don’t are going to die fairly soon and she said I had hope. And I said well what was the hope? That was before you met Jesus Christ as your savior. She said I simply hope that something would happen that day that would change my life. And then you guys came along and everything changed. Hope can get you through. It’s a, it’s a gift from God I, I just wish everybody could have it. Well, what I want to do now is to hear one of your songs and what song would you like to hear, for the audience to hear?
0:19:10
R
Well, I think just the song Hope On.
0:19:12
G
Okay, let’s hear that now.
0:19:15
SONG HOPE ON BY RENEE MARSH
0:22:15
G
Well, Renee that was just beautiful and how can people, how can people go and, and buy your album and listen to your music? Tell us how they can do that.
0:22:28
R
Well, they can go to my website reneemarshmusic.com and,
0:22:33
G
reneemarshmusic.com well that’s pretty easy.
0:22:38
R
Right, right and they can actually,
0:22:40
G
And can they buy the album there?
0:22:41
R
They can buy a physical cd if they, there’s some people that just like to, they just like to have something in their hands so I do have that available.
0:22:49
G
Well, actually I do have the cd I’m not sure if it’s in focus here or not. But its, really nice. By the way I was told when I was making records, never have my picture on an album. But you on the other hand, you’re really a lovely woman. You know the album’s name is Hope On and it can be found at reneemarshmusic.com and we can buy the album there.
0:23:18
R
Right, and you can stream my music from, really from Spotify, Amazon Music, any of those. It’s on, it’s on any streaming service. It’s even on Youtube. You can get it on there.
0:23:32
G
Well, I would rather have them buy the actual album so you can make a little money off this. You know when I was in the business there was no streaming or anything like that if they wanted to hear us it was either on the radio or they actually had to buy our record. Nowadays it’s a little bit different. Are you going to be doing concerts in the future? What do you think you’re going to be doing with this?
0:23:54
R
I am just waiting on the Lord to see what he opens up for me in terms of just sharing my story. You know one thing, George, when you’ve been through suffering, your are, your eyes are opened to the suffering of others and there are so many hurting people out there and that’s really a big reason why I recorded this album. Cause many times I’ve asked myself why are you doing this, why are you doing this. But I just, I felt compelled and I felt like God has been so incredibly faithful to me. I felt like he’s given me such grace and, as I’ve walked through this, and I just want to share that with others because there’s so many people that are hurting especially now when you look at what’s going on in the world and in our nation. There’s just so much suffering. And Elisabeth Elliot had a great definition of suffering. Her definition is having what you don’t want and wanting what you don’t have and that pretty much covers the gamut from silly little things to serious, serious things.
0:25:17
G
Well, the end result of suffering is someone is going to be bitter, or better. I seems you turned out better.
0:25:25
R
And that, that’s by the grace of God. And I will tell you, how God met me. Because after we moved here to Lynchburg and, and I will just tell you the day that we moved I told you he was kept asking questions and until that day, the day that we moved, my husband fell apart mentally. He fell apart. And it was so bad the day that we moved I had to keep sending him to the dump with my brother just to take empty boxes because he fell apart emotionally and just started crying. And literally the first year, he cried every day.
0:26:09
G
He was terrified.
0:26:11
R
He was terrified, he’s like Renee, please forgive me for moving us. I made a mistake. And I was like, are you kidding me? You made a mistake, you uprooted me from everything I loved, and you’re telling me now that you made a mistake. And then, and then he wanted to move back to Roanoke and, and I will tell you God’s faithfulness and, got me through that. But even in the midst of that, and this is what we have to be so careful about. When you are in the midst of trials and difficulty and suffering a root of bitterness can grow up and you have no idea. And that’s what happened to me. A year and a half after we moved, by that point things were so bad, I went to bed, by that point I was just angry. I went to bed every night just angry. We, at that point we did not have a diagnosis. Things continued to totally go downhill and I was talking to my daughter, my eldest daughter on the phone. And by this point everything was Doug’s fault. It didn’t matter what it was, it’s his fault. He’s pushed everybody away. Nobody wants to be around us anymore. And, and so the last time that my oldest daughter and family had come things had not been, they did not turn out very well at that particular Christmas time that we had together. So when she called me she’s like mom we want to come down, and we want to come down and… and in my mind I’m thinking, you’re not going to stay here this time I know you’re not. And I said so are you going to, you going to stay with Caleb’s family? She said, yeah we’re going to stay with them. And I’m like, because of your dad? And she’s like, hmm mom no it’s not just dad. And I… what do you mean, what do you mean it’s not just your dad? She said mom I know this has been really hard for you but you’ve gotten really hard to be around.
0:28:24
G
I can imagine you were.
0:28:27
R
And I was, I was stunned. And, and she said mom don’t you think it’s possible for God to meet you and give you joy in the midst of this difficult situation. And, George, the holy spirit invaded that whole conversation. And when I thought of that scripture that says let a righteous man strike me. My head will not refuse it. And that man was my daughter and right then I realized that I had been in sin with my bitterness and unbelief. I, this all came crashing in on me. I got off the phone and I wept. And I said God forgive me for my unbelief. Forgive me for not trusting you. And, George, the amazing thing about that was this happened about two months before we had a diagnosis. And I woke up the next morning a new woman, a new person. God took away all bitterness.
0:29:52
G
You’re giving me chills.
0:29:54
R
There was no more bitterness at all. I was free and I, I had joy and not only did God do that for me, he started restoring a love back for my husband, a very, a deeper love than I’d ever had, because I’d got to experience God’s love where He, he loves us and we don’t reciprocate. And a person with dementia can’t reciprocate. They don’t know. Doug didn’t know. And so that’s just the faithfulness of God. And so I would need that love. I would need that love for the next two and a half years to get me through.
0:30:40
G
You know we pray that God will change our circumstances but oftentimes He gives us the opportunity to allow Him to change us. Well, our time is at an end, and I just want to remind people to go to reneemarshmusic.com and treat yourself to some of the most beautiful lyrics, music, singing… by the way you remind of Karen, the late Karen Carpenter.
0:31:10
R
Aww thank you.
0:31:13
G
You have an unbelievably great alto voice and I just love to hear you. Well, thanks everybody for viewing this and I hope you’ll share it.
0:31:21
R
Thanks for having me.
0:31:22
G
It was an honor and I hope, I would like this to get out. I wish every person in America could hear your story and if our listening audience and viewing audience would do it, that could happen. Just share this. Thank you again Renee. Thank you to our, our guy doing all the technical work that old people like me, I’m almost 80 and its hard to do that kind of stuff. Jonathan Blevins thank you for helping us today Jonathan and goodbye everybody and God bless you.
0:31:57