But Dad Remembers Everything: A Conversation of FTD with Jeff Ton

J Smiles: 0:00

The good Reverend doctor, the bishop of all bishops, that kind of guy. Yeah, so he wasn't in the church, he was in the side building, you know the community building where we go eat after the services are over, kissing the babies, shaking the men's hand, patting the ladies on the shoulder, everything's good. Then he sees sister Jones. He compliments her on her hair, no problem. Then nice shoes, sister Jones. Oh, looks like your nails. Did your nails? That's a new color. Now he's holding her hand and rubbing it. A little bit later people are like, well, damn, the Reverend doctor show was looking at sister Jones a lot. So then his family is like, hey, hey, pops, roll up. You know, hold up, roll up, swallow up. You can't be coming on. You're flirting a little bit too much with the ladies at the church. Ah, y'all back up. This is my Reverend doctor voice. Y'all back up. They fine, the lady's. Okay, y'all, what you supposed to do when you know your parent is acting A-A-C-K-I-N. Acting out of pocket, way out of line, but their memory is okay. That can be dementia too, what you talking about, a dementia, but your memory is all right. Oh, oh, oh, oh. Parenting Up Caregiving Adventures with Comedian J Smiles is the intense journey of unexpectedly being fully responsible for the well-being of my mom. For almost a decade I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat. It's born to uner. I started coming. This stuff is so heavy. Be ready for the jokes. Caregiver newbies, OGs, village members trying to just prop up a caregiver. You are in the right place. Hi, this is Zetty. I hope you enjoy my daughter's heart attack. You done okay Today's episode. But Dad Remembers Everything: A FTD conversation with Jeff Ton. *** Our global community is expanding. I want your feedback. Let's snuggle up. Send a purple heart, the little emoji to plus one 404-737-1449. Pareting Up family. You are in for a huge treat. Today we have Jeff Ton with us, a guy who knows a lot about giving care. It was his father. His father now has his wings, so he's looking down on us and making sure we get this thing right. His dad knew The Word. He was a man about the Cloth. I'm not going to say too much more because then I will give away the whole episode. But he actually even had one of the less common forms of dementia, so that's going to be exciting for us to hear about too. Welcome, Jeff.

Jeff Ton: 3:59

It is so great to be here. Thank you so much for the opportunity to share this story, but thank you, more importantly, for the work you are doing through this podcast to give hope and some smiles to those that are going through this journey. Glad to be here.

J Smiles: 4:18

I appreciate that and, in all transparency and candor to the full global community out there, Jeff was so flexible with me. First time we scheduled this I had a caregiver event emergency. It looked like Zetty was having her second stroke so I had to call my team and say please let Jeff know I won't be able to make it. Zetty was walking all slumped over to the ride and she wasn't talking. But Jeff, as a caregiver, understands once a caregiver, always a caregiver. We are a community that we're locked by the elbows, the ankles and the heart, and he was so gracious and understanding we tried to reschedule the same day. That didn't work. Everyone. Zetty is stable and doing just fine as of the recording of this podcast, but it was treacherous and tremendous. That's a part of a caregiver you don't know what's going to happen moment to moment and your emotions can be sucked out like the black hole, and yet you are expected to continue with your daily activities. Enough about me. Now on to Jeff.

Jeff Ton: 5:40

Jeff, but you describe it so well. I mean you're right, those moments that you don't know what's ahead. So you get that phone call, you get whatever from the caregiver, the caregiving team, and all of a sudden your day that you had planned is just up in the air. So glad we could reschedule.

J Smiles: 6:04

Absolutely. Tell us something about your dad.

Jeff Ton: 6:08

Oh man, where to start? Dad was an amazing guy. He was as you alluded to. He was a minister. We like to call him the Reverend Doctor because it sounds so formal. He did have a doctorate in theology. I'm not sure exactly what the doctorate was, but he was the minister's minister. He spent a lot of his career as the minister of a congregation. He was an American Baptist and had several congregations here around the state of Indiana where I live and then at some point in his career he became the executive minister for the state of Indiana for the American Baptist churches, so kind of like a bishop type role where literally he would take care of the other ministers and would be their pastor. Just a great, great guy. The journey with dad really started almost 10 years ago now when my mom died. My mom passed away and all of a sudden because I'm here in town and most of my other siblings are not in town my wife and I kind of took over that primary role, not even knowing at that time that there was anything wrong with dad. We knew he was aging, he was would have been 82, probably at that time and typical aging stuff he's not driving as well as he used to and things like that, but it was the start of the journey.

J Smiles: 8:08

***Today's sponsor is JSmiles Comedy. Fresh, curated content for corporations, clubs or keynotes, live and virtual performances JSmilesComedycom. ***Quick question. Okay, before I even ask the question, you already had me grinning ear to ear. I'm sure you could see the fact that you said I'm not sure the doctor was in. It's so often as kids we don't really know what the hell our parents do. They're larger than life in their career field or in the community, but at home he was just dad. He was some larger character to you, but he was just dad. So that's amazing.

Jeff Ton: 8:53

Absolutely.

J Smiles: 8:54

And I can see the love right there in your cheeks as you smile talking about him. When your mom passed, were they living independently before she passed?

Jeff Ton: 9:08

Yes, so they. Several years before she passed they moved into a place here in town called Hoosier Village. Hoosier Village is a progressive care facility, so they were in for a long time. They were in a standalone house, just living like everybody right, they were not just on this property. Before mom died they had moved from a house to a condo, still on the property, but then also on that property they have apartments, they have assisted living, they have memory care and healthcare and during those seven years my dad got to experience each and every one of those as he went through that disease. So they were in a very good space surrounded by some wonderful, wonderful people. My wife and I and really in all honesty my wife took a much more major role than I did because I was still working, I was traveling around the country, but we were dad's connection to family and you start to notice some things and you get concerned. I started going to doctor appointments with my dad and you start to hear these. He would relate stories that just didn't make sense. They just weren't connecting and it was a long process to even get a diagnosis, as you alluded to. He ended up with a diagnosis of a rare form of dementia, frototemporal dementia. And for those that know about FTD, it's not the florist, it's the disease. And I love that you joke and you smile about this, because that's been the way my family has dealt with tragedy and conflicts. We joke about it, you find the humor in the situation. So this version of FTD that dad had was behavioral variant, so BVFTD, and it manifests itself in you lose your social filters, you lose your cognitive ability. When he passed he had the cognitive ability of a four-year-old, so the decision-making ability of a four-year-old at the time of his death. But as you know, it's a progressive disease. And here's again this Reverend doctor who can. His job is to tell stories and enroll people in his vision. And so everybody's saying, oh, your dad's just fine, and it's like, no, he's not. But he could make everybody believe that he was just fine because that was who he was and the way he talked to people. And then the other thing that we dealt with quite a bit was you would tell people he had dementia and they'd be, oh, but he knows who I am, and it's like, no, it's not Alzheimer's, he's got a great memory. It's this other kind that you don't know about and it was a struggle even to get the doctors to understand and to come up with a diagnosis for him. It was quite that journey.

J Smiles: 13:08

Wow, you just did a major slice down this lane of caregiving and dementia, a problem that most of us when I say most, not necessarily in the caregiving community, but in the world at large wouldn't even think about. That you're having to fight to say, listen, there's a dementia that doesn't have memory loss as his main component, yeah. And then you have to rattle the cages of those around him, and maybe even his primary care physician, and saying listen, it's my daddy, I'm telling you there is something wrong. But he's charismatic, you know, he knows his job very well, he knows his current, he knows the other pastors, reverends, and he has them all eating out the palm of his hand. And so now you look like a person with dementia.

Jeff Ton: 14:15

Yeah, I think, as I recall, we were the ones that actually uncovered the BVFTD. We found this in a book or a journal. We were just trying to understand what was going on with him and I took it to his primary care and said what they're describing here, this is what we are seeing, this is what's happening, and that was finally what the breakthrough was. And you've probably been through this with your mom. The first time that they evaluate dementia, they run these tests and it's cognitive tests. You have to do circles and squares and things like that, and the diagnosis comes back as mild cognitive impairment. First of all, what the heck is that? And second of all, you tell this man that he's got mild cognitive impairment. He's like I'm okay, there's nothing wrong with me. Yes, and I understand that's clinical, but that's not helping the caregiver, right. We had to wrestle with dad for quite a long time because he doesn't know that. The person with the dementia doesn't know that something's not right. It's only those that are observing them and realizing that, hey, this behavior or this decision is not right. It's not the guy that I know. I can remember, so he lived on this property that I was describing earlier and we ended up taking his car away. That was a whole story in itself, because my brother flew in to help me and we took his car away and he told everybody that would listen that his son stole his car. You know, I thought for sure the police were going to knock on my door, but at any rate he had a golf cart so he could still go around the property on his golf cart. And one day we get this call from the administrator, who's your village, saying your dad was picked up on 96th Street. He was walking along 96th Street. Now picture this. 96th Street is this industrial street. There are no sidewalks, there are huge semi-trucks that zip up and down this street. But he had decided that he wanted Dairy Queen and he couldn't get his golf cart to Dairy Queen, so he was going to walk three miles to Dairy Queen. Now, that's not a decision that a person that's making good decision makes. And there were others, there were countless others, but I can remember oh, yeah, sure sure Was that before the diagnosis.

J Smiles: 17:26

Was this one of the examples that let you know there's a problem, or was that after the diagnosis?

Jeff Ton: 17:33

That was probably after the diagnosis, because we used the diagnosis, so to speak, to get his car away from him, you know. So he started so somewhat embarrassing stories. Here's this Reverend Doctor and he started to become very flirtatious Again. Part of this disease is you lose your social filters. So he would get overly touchy with waitresses, overly touchy with friends at church, and again he's not. That's so, not him. He was always prim and proper and very professional and all of a sudden he's doing these things and it's like I try to talk to him and it's well, I just I love the touch. It feels good, it was all about. It feels good to him and it's like, well, dad, the women don't want you doing that. Oh, they don't mind. They don't mind, they're friends. It's like no, no, no. So we get in these whole discussions and those were probably the first real indications. And the other thing that we learned is that my mom knew something was wrong. My mom had him go get a brain MRI five months before she died. She knew something was wrong and didn't tell the kids, didn't tell any of us. I found records of it as I'm helping dad go through his finances and it's like hey, what's this and he said oh, your mom made me go do that. And again, you know as well as most that MRIs don't always show the disease. It's one of those things that's for FTD. The only way to get a concrete diagnosis is after death. It's the only way to know is to do an autopsy, which we, for a lot of reasons, chose not to do. I can remember when the doctor finally wrote a statement that he was no longer of the ability to make his own medical financial decisions, and she was almost angry with us. She hands this document across the table during this meeting and says so are you happy? Now you got what you wanted? It's like no, no one wants this, but we needed that to be able to manage his affairs and manage his business. And it was just an odd situation, we switched doctors.

J Smiles: 20:51

So are you saying that she was disgusted or frustrated with you and your family for making that request?

Jeff Ton: 21:00

It sure felt that way to us. Yes, it sure did feel that way and you know, maybe not, maybe we were just misreading the situation, as you know that you get in these situations and, first of all, you're not used to being in those situations, you're not you're thrust into this role of caregiver. No one asked for it and you are there with this person that you love so much and you see what's going on with them and it just, on one hand, it's ripping your heart out and, on the other hand, you've got to be their advocate and you've got to help navigate through people with all good intentions that are taking care of them but don't really know the person the way. You know the person, and it's this, it's this role. I tell people all the time it was the role of a lifetime. It was not one that anybody asked for, it's not one that I asked for, but I was honored to walk those seven years side by side with my dad, and what we went through over that time was you know, you have these, you have these moments that are the pits of despair where I can remember, and I can't remember what we were arguing about, but we were arguing about something, probably something I needed him to either stop doing or to do. And so we were almost like nose to nose and he finally yells at me quit treating me like a child. And I yelled back at him quit acting like one. And at that moment we both burst out laughing because what a role reversal from when I was a kid and he probably said the exact same thing to me. That's a good one, you know. But then you go through other things. Where we would go to here in Indianapolis there's a AAA baseball team, indianapolis Indians, and for probably a year or two before mom died and then up until he was no longer physically able to, we would go to six or seven games a year and we would sit in the grandstands and we would tell the same jokes. We would tell the same stories season after season, game after game. But we absolutely loved that time that we spent together. And, you know, at some times he would be cognizant that things weren't right. He'd make jokes. One of his favorite shows was Everyone Loves Raymond and he would watch. He had these on VCR and he still had a VCR. He would watch the same episode over and over and over and I said, dad, don't you get tired of it. And he's like no, it's brand new to me. Every time I watch it it's funny. So even he would make light of the situation.

J Smiles: 24:20

I love that. I love that he had enough understanding and maybe memory, because you're saying that his memory wasn't affected like Alzheimer's, and you were teaching me something with that. I did not realize how long it may take for -- with the Frontotemporal dementia, for the memory to become a part of it, that it's mostly that you're losing those filters and those social cues -- what we have come to know as social etiquette or social graces. Did you believe that your mother's passing exacerbated or sped it up or at least made it be known more to your family? Perhaps your mom was managing it more for him?

Jeff Ton: 25:16

Absolutely. I don't know that it exacerbated his disease, but she was definitely covering for him. She was compensating for him. You know, I can remember looking back times where he she would kind of reach out and slap his hand if he was too engaged in conversation with a female. She was definitely compensating. Frontotemporal this dementia progressed, he became more and more living in -- I don't know hallucinations is the right word, there's probably some medical term for it but he would tell us these stories of things that happened to him in between our visits. It started, I think the first stories that he started to tell was that he saw mom. At first. I would say now, dad, you know mom passed away in 2013. She couldn't have been here, and he says, but she was. We started talking with our doctor at the time. She was wonderful, this doctor that was with him for most of these seven years. She told us you know, as long as he's happy, as long as he's not hurting himself or hurting others, go with it. Just go with the story, listen to the story and ask him questions. He'll come in and out of those and she was right over time he would spend more time. There was this one time where we were going to visit and I'm taking my grandson-- Jordan, who probably was Jordan is nine now, so he might have been two or three years old I was taking him to visit my dad and from down the hallway I could hear my dad and you know that voice. He had the preacher voice going. I could hear that voice. He was in preacher mode and it's like what is going on. We stood outside the door for a little bit and he was conducting a church meeting and he was talking to people in the room. They were getting ready for the 150th anniversary of the church and he would say now, julie, you need to take care of parking and Joe, you're responsible for this. He was going on and on and on and we stepped in the doorway and he says excuse me, people, my son is here. I need to pause for a minute. He turned to me and said "ey, I'm in the middle of this meeting. As soon as it's done, we'll have our visit. Of course, there's nobody in the room. He's having this meeting. And he got done and he turned to us and we had this wonderful visit and he was back as dad In that moment and again he spent more and more time in that world and again you've got to joke about some of these things. He got moved into a new room and we came to visit him and he says," ey, there's a mouse or a rat in my lamp, in my light up there. It's a domed ceiling light and it's like, dad, I don't see anything. He says, well, it's not there right now, but it runs around in there all the time. I said, okay, we'll have somebody come take a look. The maintenance man, who knew my dad and loved my dad, comes and he takes the globe down and he's like there's no way there's anything in there. He's telling us to that, but he puts it back and he turns to my dad and he says now, gene, I took care of that, it won't be back, you don't worry about it, but if you see it again, you let me know. Sure enough, a couple of weeks later, dad says hey, it's back. The maintenance guy comes and he takes the globe down and just leaves it down. Never puts it back up again, he just leaves it down. Well, dad, never, ever saw anything again it running around the light. So it made him happy, right.

J Smiles: 29:50

But that you know what, if we could have more allies like that maintenance man just say just take the globe down, the globe has nothing to do with the light working. So now dad does not see the mouse or the rat and we can move on to the next thing. And I love that your dad was conducting the meeting and he told them hold on, my son is here. He acknowledges you, he greets you and he says just wait, I'll wrap up in a moment and then we'll be able to visit. But I can imagine that some moments you may be even though you're going with it emotionally, some moments is tougher than others. Watch him go through what, at least, is an alternate reality. For you it's his full reality, but for you you don't see the people. During those times was he able to dress himself and feed himself and brush his teeth? When he started to have larger hallucinations?

Jeff Ton: 31:09

At some point he lost the ability to do most of that, and that's where my wife would. I can remember back when this first started to happen and we lost mom and all that. He told my wife. He said never let me go out in public looking like an old man, and so she would make sure that he was. Even when he got later on, when he couldn't do it himself, she was making sure that he was shaved, that his nose hairs were trimmed and his ear hair were trimmed, and she was doing all that for him. And towards the end we engaged with hospice and they would come in and do some of those daily activities when he could no longer really get to the point where he couldn't even hardly feed himself, and that was towards the end. But most of the time he was taking care of himself. You'd look at him and say, dad, isn't that the same shirt you had on yesterday? It's like oh no, I put a clean shirt on it. Well, where'd you get it from? Well, I got it from over there on the chair. I said dad, that's the shirt you took off last night. Let's get a clean one on. And you just kind of guide him through that. I tell you that where it got, I wouldn't say it was all difficult, but when he started, when he would have these alternate realities in front of, like his grandkids, my kids or my sister's kids, and they weren't ready for it. Right, you tell people, hey, he's going to talk about some things that don't make sense, but when he starts into these stories it just blows you away, right? Especially, these are young men of you know, in their early 30s for the most part, and they're seeing some of this stuff for the very first time. It was tough on them. It was tough on them, and even my older brother, you know, he got to the point where he had a hard time visiting because he just couldn't stand to see dad that way and it was like, dude, anytime you want to go, I'll go with you and we'll go together and do it. And then it got to be almost funny Again, bringing the humor back into it, dad would say, well, you know, Mitchell was here yesterday and it's like, you know, Mitchell hadn't been here in like two months. And I'd call Mitchell and say, hey, just go with it. Dude, you got credit and you weren't even there.

J Smiles: 34:23

I love it. I love it. Did you and your siblings agree mostly on the path of treatment or care?

Jeff Ton: 34:35

Most of the time, I'd say early on, we were seeing. We being my wife and I were seeing the changes, probably before they did my younger brother. He's a pilot and he would fly in and he would visit dad for a couple of days and then he would fly out and he'd be like I'm not seeing it. "I'm not seeing what you're seeing. And it's like going back to what we were talking about earlier, that for moments he can make you believe what he wants you to believe. And if you're not seeing the day to day, if you're not seeing the decisions, you're not seeing everything. And so it took a while. But once they bought into yes, this is real. And they went on their own journey of acceptance because you're grieving for your loved one, it's almost like a long, elongated death process. So you go through those stages of grief multiple times and they had to go through their own process. But once they did, they pretty much agreed with the direction that we were taking him. I was his healthcare representative by his will and his executor by his will. So ultimately those decisions rested with me. But I wanted to make sure that they came along on the journey and were able to come to their own closure as we went down this path. So I'd say for the most part, you know, hey, we're siblings.

J Smiles: 36:35

there were probably some disagreements here and there, but for the most part. [J Smiles] What were some things that your dad presented with the FTD that you did not see written in the description. You and your wife or your family member looked it up and you said, ok, so these are the things that kind of describe it. So this is what we can look for. Were there any things where you're like, hey, no one told us to look for this, but dad is now. He's doing this. You know he's eating drywall or something.

Jeff Ton: 37:22

Something. [laughing] Yeah Well, and I think it was. You know the, the altered reality, the hallucinations. We weren't really ready for those and so, like I say, the first couple of times it happened I would spend time debating with him that there's no way it happened, right, instead of going along with it. And that's when we sat down with the doctor and said, hey, we're, we're seeing this. And to them, they knew, and they knew that signaled kind of that next progression of what was going on. The, the other one that we struggled with was was weight loss. He, he started thinking that he was overweight and so he was always dieting and I know I just used air quotes on an audio podcast but he was dieting and losing weight, right, because, but he didn't need to. He was, I don't know, 5'10" hundred and eighty pounds. He did not need to lose an ounce. And he says, oh no, I got to get down to 160, 165. And it's like, dude, you'll be, you'll be a skeleton. And so we really had that one caught us off guard as well. And we really had to work with the, with the staff, to to make sure he was getting enough nutrients in, to make sure that, even though he was dieting, he was getting that chocolate milkshake to add some calories in, and things like that.

J Smiles: 39:01

Where did he get that from? Any idea? Was he reading something? He's something on television.

Jeff Ton: 39:08

You know, I just think it was part of that, that reality he was living in, that he really needed to lose that weight. He didn't whatever the vision was in his head that he saw Now. Now I don't know, it could have been, it could have been part of it, part of the disease, very, very early on. So I'm going to back up in in timeline a little bit. My mom died fairly young she was 77, I think and she died of COPD, probably caused by a fire that she was in back in 1980. She was almost killed in the fire and her lungs were just really severely burned in that fire. And the way she died was she basically just stopped eating and, as cold as it sounds, she's starved herself to death. And I can remember early on when we had the diagnosis and I was looking at his doctor and we were talking about this weight loss and I kept saying he's got to eat, he's got to eat, I'm not going to lose another parent like this. And she looked at me and said that's how this ends. It's only when you have BVF to eat. The way it ends is you end up starving yourself to death. You just stop eating. And that's exactly what happened to dad in those final months is he just wouldn't eat and you've got all the directives in place that you're not going to. We were never, we never considered hooking him up to intervenious food, because that was not his wish. And so you travel that journey whether you want to or not.

J Smiles: 41:12

Right. Thank you so much for sharing this very intense journey about both of your parents. It will help untold individuals, countless individuals, with these sincere stories. You spoke of behavioral variant FTD, which suggests that you can have FTD and it not be behavioral variant.

Jeff Ton: 41:44

Uh-huh, yes, yes.

J Smiles: 41:47

Can you please give us a little bit of indication of what the behavioral variant really does on top of the FTD?

Jeff Ton: 41:57

So what the behavioral variant does is it changes your social filters, those behaviors that you've had all your life, and you start to revert to childlike behaviors, consciously, subconsciously, you act more and more like a child. So you do things like sneak out and things that you might have done as a kid. Right, it's that cognitive ability, the ability to weigh consequences, the ability to make good, sound decisions. There was a snowstorm in Indianapolis one year, blizzard-like conditions, the roads were closed and this is before. We took his car away and he got up, got dressed and drove to church, and no way should you have been on the roads. The service was even canceled, but he was going to. It was Sunday morning and on Sunday morning you go to church. Who cares that there was a chapel down the hallway that he could go attend services? He didn't like that one. So you make these decisions. The other variants I'm not so clued in on. There's one that is related to speech and hearing that you start to, and it's not that you don't hear, it's that you can't process the words. You lose that ability to process what you're hearing and then you can't form sentences. So you lose that ability to speech. And he had some of that towards the end as well. And then the other one. The other major variant is motor skills. You lose the ability to control your motor skills and it all depends on where these lesions are attacking the brain, what variant you end up with. And, like I say, there ends up being bleed over into all the variants by the time you get towards the end.

J Smiles: 44:49

The brain MRI that your mom had five months before she gained her wings became a baseline that gave huge insight for all the other things to come. I'm sure I have been a major advocate for.

Jeff Ton: 45:10

Get a baseline.

J Smiles: 45:11

All adults Get a baseline at least some time in your 40s, I don't care how healthy you think you are. Get it so that any changes that start to happen neurologists will be able to tell. We were lucky that my mom had an MRI. She just got a full workup about five years before she was having problems with her bladder and the doctor just decided to do a full workup on her whole body and that's how we were able to fast track, determining that there was some dementia, alzheimer's related thing going on. But had we not been able to go back to what seemed at the time to be an unnecessary MRI, they would have been just toiling around in the weeds, so to speak. But my grandfather was there. I remember getting that MCI and I thought you mean the defunct telephone company MCI, mci, what the hell to do with my mama? Yeah, absolutely. What would you tell a person right now the things that you saw your dad doing? You talked about the flirtation that was just out of his character. What are some telltale signs Frontotemporal dementia might be, might be on the horizon for your loved one. If a caregiver well, just a family member is listening and they're like you know what that sounds like. That might be my spouse or my brother's sister.

Jeff Ton: 47:09

I would say something that is just a complete 180 to their personality, to the way that they carry themselves. Just, you know it in your gut, right? You know, if you're looking at a parent, if you're looking at a spouse, you know them better than anybody on the planet. And when they start to act in ways that are different than the way that they've acted and there's no, there's no compelling event to explain why, right, there's been no accident, there's been no disease, there's just all of it. And you have to look over time, right, because it's not something that you're going to notice right away. It's going to be this accumulation of things where you start to see them just behaving differently, talking differently, that you need to be, you need to have your awareness heightened and be ready to advocate. I think that's to me. Yes, you're a caregiver to the person, but you become their voice, because a lot of times, we are our own worst advocates. When we go to the doctor, right, we're not, especially if you're a dude. You're not going to tell the doctor hey, anything's wrong, so I don't know, I'm fine. So we need that voice, we need that advocate, because the medical system rightly so, is set up for the rights of the patient and for many, many years, until we had a diagnosis, the decisions about dad's health care were dad's, even if he was making wrong decisions. Until you know, we had that right to be able to make those decisions for him. But even during that time, we had to be able to advocate on his behalf and speak up to the doctor and say no, dad, you're not remembering when you told him that you haven't fallen in the last since you saw him three months ago. You're forgetting about that fall that you had last week? Oh, but that wasn't a fall, I just stumbled. Well, we need to tell him about that right, and so you, you have to have that voice.

J Smiles: 50:00

Right, that's a very good point. How many years did it take for the diagnosis?

Jeff Ton: 50:09

Probably two or three. So mom died in July of 2013. And I think it was August of 15 when we finally had the diagnosis.

J Smiles: 50:30

That's a slip, that's a slip.

Jeff Ton: 50:34

And then it was, and you know this the journey starts and it's a long journey. You know it was. It was five months, so it was. It was five more years before, before he passed.

J Smiles: 50:57

Along the way, what did you and your wife do to let some of the steam out, for fun or for self care? Well, the phrase now is self care. I don't know if anybody that's a caregiver actually stops to say, hey, I said it's harm itself, care time, but did you all have a date night? Or I'm going to play golf with the guys, or just what might? What did you do to keep yourself from jumping off a cliff?

Jeff Ton: 51:32

Well, we cried a lot, I'll tell you. I'll tell you that Good, good, release, what, what we would do, and we love going to concerts, rock concerts and so we spent a lot of time. We. We travel occasionally to concerts see my band, the Rolling Stones, you know, in various places, Eric Clapton, in New York. I can remember this would have been the night that we moved dad, I want to say, from memory care to the health care facility, and we knew it was -- his was the last move for him, right, this was it. We didn't know how long he was going to be with us, but we knew this was the last move and we had tickets to go see Art Garfunkel that night and we were like, oh, we're not going to go, it's just been a long day, we're not going to do it. We decided to go anyway. Ironically, our seats were in the very last row of the of this theater and Art Garfunkel he's a great storyteller and he starts telling these stories about his dad and he starts singing these songs and my wife looks over at me and, of course, I got tears just rolling down. And then I look at her and she's got tears rolling and we're singing along and I know the people around us just thought we were freaking nuts because we're bawling our eyes out, singing along with the sounds of silence. But that was our release. Right, that was our release, and it music. Music was our way of letting go of those emotions and taking care of ourselves.

J Smiles: 53:28

Active self care.

Jeff Ton: 53:34

Yeah, whether it was intentional or loud, you know it, it was something that we enjoyed and we still enjoy doing. And you know, music is this wonderful. It's a wonderful drug, it's a wonderful medicine that it can. It can bring back memories, it can evoke emotions and it can heal. It can absolutely heal. And I remember dad's memorial service. The music was just glorious, just glorious. We wanted one of the songs that he wanted sung was Amazing Grace, one of his favorite songs, and the organist that played it wrote an arrangement just for his funeral. And the woman that sang, it was just incredible. And it's that healing power of music.

J Smiles: 54:39

You wrap that up so well, I'm not going to ask anything else. That is a perfect ending to a delicious conversation on a hard topic. Yes, and I want to thank you for having these conversations.

Jeff Ton: 55:06

I have been looking forward to having this conversation with you since I discovered this podcast, because it's been a great time Since I discovered this podcast, because it's been a long time since I talked about those stories and, as I mentioned in our prep, I want to write a book and this helps me get those stories to top of mind, to be able to write that down, to talk about the journey.

J Smiles: 55:32

When you write the book, we will have you back.

Jeff Ton: 55:38

Awesome.

J Smiles: 55:46

The Snuggle up: Number ONE, the doctors are not your family. They don't have a vested interest in whether or not your loved one really gets better, survives. Fill in the blank, I don't want to be too ugly. This is a family show. You're the advocate, you're the lawyer, you're the police officer, you're the principal. You walk in with your cell phone recording, with your notepad, with your pencil and your paper and you push the point. You know mom, dad, sister, cousin better than anyone in a white coat or with a blood pressure cuff. Keep pushing it. Do your research, go in with your guns blazing and if they don't respond well, get a new doctor. Number Two, don't kid yourself, pun intended. Your parent did not start with this odd behavior or memory loss yesterday. It's been happening If they've been living with the other parent or other siblings or family members. They hid it from you, they covered for themselves. Other people did the ostrich thing, put this hand in the head in the sand and just ignored it. Who knows? But it likely has been unraveling, unfolding for some time, months, maybe years. That's what happened with me and Zetty People knew and didn't tell me stuff. Now that you know, dig in and get in it. Number Three, caregiver allies are our angels. That guy that just took the lamp thing down is Manna from Heaven. The universe sends us these little pockets of light. Your help and your greatest supporters may not come from the people who you love the most. It may not be your spouse or your children that help you with your LO. Church members, neighbors none of them. Your siblings, nobody may show up. But if your caregiver ally comes from the maintenance people at your LO's facility or from whoever is cleaning up and they just happen to know how to do the thing that calms your LO down, yo, that's a win, that's a caregiver ally. That's the sun winking at you and saying baby, I got you. Check that off your list. Look at you a winner. Stick your chest out, you are a caregiver. Boom. OUTRO: That's it for now. Thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends and truth. Pretty, pretty please, with sugar on top. Share and review it too. I'm a comedian. Alzheimer's is heavy, but we ain't got to be.