Supporting Your Loved One Through the Journey of Lewy Body Dementia

Debbie: 0:03

An ironic media production visit us at iro and ICK media.com. I was like, yeah, what can I do for myself, so then won't take away from him. So I started yoga, which I go twice a week. In the old days, I might be like, oh, what should I be doing next? What am I in there? Now I go, Okay, this is my time, and I totally focus. And I've never been such a good yoga person. I'm so grateful to have this quiet time to myself. Hello, and welcome to dementia discussions, the podcast for and about caregivers. If you'd like to share your caregiving story with me, I'd love to hear it. Please call me at 310-362-8232 or email me at dementia discussions.net. Today, I'm so thrilled to welcome Deborah. Deborah is a member of a support group that I lead through the Mary s Easton Alzheimer's Disease Research Center at UCLA. And Deborah comes to the group because her husband struggles with dementia with Lewy bodies, we are so fortunate actually to have a group so specific here at UCLA that we can be a part of. So Deborah, welcome to the show. It's great to have you here this morning. Oh, thank you. And I especially wanted to thank you for hosting our caregiver group, because it really is important that we're able to say what we feel and share our experiences. So I really appreciate you. They're having their support, I have to agree

Barbara Hament: 1:49

with you. We have a close knit group, there's a core of the of that have been coming for a while. And so we've gotten close over over time here, which is really nice. So when it's on Zoom, we can welcome anyone into the group, and especially you that lives out of town. Tell us a little bit about him.

Debbie: 2:08

We've been married 42 years and known each other 47 years. He's 82 years old. He's a tall, good looking confident man. He was president of his class and president of a fraternity, very successful, very athletic, and talented, quite talented. He's a singer and actor. He was shocked by this happened to him. How could this happen to him, and he's not accepting it, and doesn't really want to talk about it. And yet he wants to know what's going on? Why is this happening? So we go back and forth with he wants to hear it. And then he doesn't want to hear it. He asked me, we have to go to a doctor. And I'll say we've been to a doctor. So he's, he's handling it well, and he keeps himself very busy. He is a potter and we have a small little ranch and he works with the horses and plays music. So he keeps himself very busy, which we think is making his progress of LBD linear. Next production is linear, some people go right away, apparently, and fall off the cliff right away. And he's just going along. lately. There's been a few more mishaps, but I think because he keeps himself so busy. And that keeps his mind working, is why it's going any really.

Barbara Hament: 3:35

And when he says to you, so what's happening with my memory, what do you say? Do you go back to it went to the doctor and you were diagnosed with this and to go through the whole thing?

Debbie: 3:45

We do? I do. He's it's an interesting thing. He doesn't want to hear it from me. So he really needs to hear it from somebody else at this point. I mean, we have a great relationship and everything. But he's like, No, I don't think that's right. So he doesn't want to hear what I have to say about it.

Barbara Hament: 4:01

He doesn't believe you know,

Debbie: 4:05

he kind of doesn't believe in it. But he just wants more verification. And he's always asking, Do other people know Can they tell me his doesn't want people to know? Very proud, man, I guess. And I'd say even with his kids to my kids now. And so I'm like, yeah, they know now at first I was like, oh, no, nobody can tell you now I'm I'm going ahead and saying yeah, I mean, people know. And how is that for him? He was wanting people in town to know he's just like, oh, or even help when they call he'll say there's something going on with me. We'll repeat that. He just doesn't remember that. They know

Barbara Hament: 4:43

so he's okay with now the family knowing but not anyone in the neighborhood or in town. And you guys are in a small town is that right?

Debbie: 4:52

And a lot of our friends have are older and have passed on. A lot of them have been and nobody cares and people love him. It's very popular and I don't and a lot of people can't tell, by the way with this LBD it comes and goes. So sometimes he can be totally talking away and listening and making a comment. Usually a funny one. And then other times. You know, he's out of it.

Barbara Hament: 5:19

So his humor, which is long standing, he can pull up pretty easily. Oh, yeah. So he covers pretty well. Yes, he does. Yeah, that makes you smile. Yeah, yeah.

Debbie: 5:33

We went through a period where we weren't laughing at all. And because we were, I think just so confused by what's going on. And so now that's coming back, it really is coming back. And almost too much like, it's a lot of eye rolling on my part. Now. Some of its more silly humor, but still, it's fun. Right?

Barbara Hament: 5:51

You can laugh. So you feel like, Oh, we're having a fun moment together. He's here.

Debbie: 5:56

Yes. Because really what happened with this was it's really about grief, isn't it that the loss of the marriage that you had, and the loss of who that person is your husband was was gone. And so that was really hard in the beginning. still hard to make the cry again, but that's okay. You can anyway accepting it, then you're not fighting it all the time.

Barbara Hament: 6:22

I'm sure when you see glimmers of who he always was, that's the man you fell in love with. That's the man you always want to be with. You always want to be there.

Debbie: 6:33

Yeah, you know, I think my thank God or my lucky stars or whoever. Everybody believes him, that he's there. Like every night that I'm like, there he is right there in bed with me. I've been grateful that he's here physically. He's warm presence. And he's very loving. I mean, he can get, as I say, contrary, during the day and disagree with everything I say. But when we go to bed, he's very loving and grateful. And thanks to me for being there for him. That's funny, like said that. But that is true. Contrary, I think that's has been can be contrary, also, she was in a previous podcast. You and I have a lot in common

Barbara Hament: 7:13

with and contrary, like, give us examples.

Debbie: 7:17

I can look at his pillbox and say all you need to take and they're all in the days, and evening and the morning and I say oh, we haven't taken your pills. And he goes, Oh, yeah, I have. And I'm looking at them. I open I go see those. Yeah, because I took those. They're still there. I think you need to take them again or something, you have to be creative. And also sad. As I usually come out in the morning, he gets up first and has his breakfast, and I come at holding the box of pills. And I've got to figure out a way to not do it that way. Because the first thing I'm saying is here, you didn't take the pills. And it's kind of contrary already start the day. So that people have said, okay, that people are him. I'm not going to do that. I like my sleep. It's hard enough to sleep through the night anyway. Some sleep a little bit anyway,

Barbara Hament: 8:13

in the morning. Yeah, that's great. Are the pills really important? Are these just vitamins or whatever? Okay, so he does have to take his pills. Alright, so you do have to kind of come up with a creative way every morning together to take them.

Debbie: 8:27

So I was thinking I put them in a little bowl. So it's just you know, like, in, I'll organize, and only take them when I have them. And I actually give them to him. But he'll procrastinate it oh, look, I think I need to feed the dog. And it's like, come back and take your pills first. And then I'm moving around the day trying to get on with my day. So after that's all stop. Take the pills. You see he has trouble swallowing though. Every time I hate this fault, and so they're good for you. So you still have to take them.

Barbara Hament: 9:00

And do you take pills. Maybe you could take your pill like maybe it's pill taking time they both do it. Yeah, they're all take mine. You take yours. It's just

Debbie: 9:08

not the same. Yeah, I do take them in the morning. But I take them first thing. I mean, barely washed my face. And I take them because I have to wait an hour before I can eat. Like okay, if I were in there. Sure. Yeah. So I could go out there with my sleepy head and go, let's take pills.

Barbara Hament: 9:26

So that's a dance in the morning first thing. And then it just goes from there. See

Debbie: 9:32

really what it is part of the LBD is understanding like three tasks in a row or three pieces of information in a row. The other problem is that we have a large property to take care of and now it's all on my responsibility. And yet I need to tell him everything because if I have to spend money or hire people, so like a pipe burst and there was water shooting up in the air from the house, I'm saying I gotta deal with that because I didn't see it. Okay, we were far away. So we went out there and he agreed, okay, you need to hire somebody to come fix that pipe and haven't gotten the house. And so I'm still talking about and he goes, what pipe? So then it's like, oh, no, I have to take him back out there and show him. He goes where I don't see it. No. So I'm like, Oh, so now I learned, just go deal with it. And then tell him about it after it happened.

Barbara Hament: 10:22

So that's your way to cope with it. Yeah, to just move through, and problem solve as otherwise, we don't need to call anyone there is no issue with the pipe. So he has to remember from walking out there seeing it and walking back to the house. Is there a problem with his visual fields? Like, does he have trouble seeing things?

Debbie: 10:40

Here's the thing. I listen to that webinar. LDA is great on vision really great. But he won't admit it. And I think his vision is off, and he won't admit it. I got you saying okay. It's like, I see fine. I see by se whenever he doesn't want to be diminished. I mean, he wears glasses to read or something. But

Barbara Hament: 11:01

do you notice that he like neglects? I don't know, one side of the plate when he's eating? Or does he have money sits down on a chair. He's not quite perceiving where it is?

Debbie: 11:16

No, all that's fine. And that's important, because I know some folks are having that kind of trouble. Physically, he is in great shape. He's very, he's very thin, but he's strong. And he can walk forever and pick up anything. And he laughs though, because he's been lifting weights on his right arm and his other arm is skinny, like I hold on to his left arm and elbow. No, hold on my other arm. It's bigger. It's a joke. He doesn't have any of those troubles. And we have a huge dog that takes up the doorways a lot. And we have to step around him. And he's all good with that. Hands. Okay, so he actually can see the water shooting up in the air, he just forgets. Yeah, gets in the house and forgets where it was shooting, I guess you could only it was like behind a bush and you could barely see it, but whatever. But that's just kind of an example. Like, my grout. My house has a lot of deferred maintenance because I ignored it. While we've been dealing with different illnesses, like tile floors, the grout is cracking. Like it's gone in pieces. And I said, Oh, we really should regrowth that he goes out. Okay, so. Okay.

Barbara Hament: 12:25

So you've kind of lost like your reasonable partner of all these decades, right? Who would have said like, oh, yeah, call a guy. Yeah. Bring him a press call worker and bring them on over the grout? Fix them? Yeah. Oh, definitely. We got to fix the shooting water out back. Now you don't have that partner in your life to kind of take care of this big wrench.

Debbie: 12:46

And then what I do is I just shrug and say, okay, it'll be somebody else's problem someday. We don't want to leave here. And we don't plan to leave here. But the obvious thing in life is that we will leave here at some point. So I just shrug and go, Okay, somebody else will deal with it,

Barbara Hament: 13:02

defer it even longer. But I think you bring up a good point that now suddenly, you have a lot of responsibility. Yes. Yeah. Like you did talk in group about water, like, what was it a storm,

Debbie: 13:18

January 10, ninth and 10th there was big rain in California. And then it all road broke loose up the hill and ended up in our front yard. And that was the other thing that made me sad Yesterday is my yard doesn't look. It used to be really beautiful in the front of my house. And they scraped my driveway, which is nice. But they piled all the dirt up on where my lawn was. And meanwhile, we haven't really had a lawn because of the drought anyway, but we've had, like, at least it looked neat. It was neat dirt, and now it's piled with rocks and debris and stuff. And so we've been going back and forth, whether we should get rid of those piles. But the other thing is see if we get another rainstorm and they say it will, a lot of mud is in my pool and my tennis court. Really old. I don't want you to think I'm all shaky, because I haven't put on tennis court. They're very well.

Barbara Hament: 14:06

I remember you coming to group and they very stressed out about all this mud now that you in your pool that you had to deal with. And now other people and had second and your husband not being able to help you at all with this with

Debbie: 14:21

decision making them and that was really rough. And again, we should probably be putting up some kind of a barrier. If there's another rain, but we can't make a decision on what kind of barrier. We think water is powerful. We'll knock down the barrier. I'm just like, alright, we'll just have people scrape up the pool again.

Barbara Hament: 14:37

And is that something in the past your husband would have made decisions on? Would he? Yeah. So he would have taken care of all of this sort of stuff. Yeah, that kind of stuff. And now it's on you.

Debbie: 14:47

Yeah. I mean, we shared our life together. You talked about all of that stuff, but he would be the one that would be making all your decisions. It is kind of a patriarchy marriage. because we've been married for so long and so he's the he was the final say kind of thing. But now I'm the final say that I'm not. But you're

Barbara Hament: 15:08

not confident, right? Because you don't have experience with this. So you doubt yourself your question. Oh, am I making the right decision? Darn it. I wish he were okay. Then we could do this together. Yeah.

Debbie: 15:21

I work very hard not to break down in front of the workers, which is terrible, because I'm like, Okay, no, it's fine. It's just okay. I guess, I guess. Oh, I don't know. And then my tears cheering up and like, oh, my gosh, don't be doing that. Sure. You're overwhelmed and

Barbara Hament: 15:35

stressed out? Is there not decisions you usually make? Yeah, this is not a position where we're usually in?

Debbie: 15:42

No, but you know, then I think one of the ladies way back. She said, I can do it. And it's true. I don't like doing it. By the way. I don't want to do it. But I have to do. So I do.

Barbara Hament: 15:54

A level of acceptance, right? Yes, there is no one else now to do it. It's you. Yeah, that's that really coming to the acceptance was huge.

Debbie: 16:04

Interestingly, he can still go out on a tractor, right? That's one task, which is to get him started and then go move around. That's one thing that if I said to him, take the tractor, and move that to the other yard and then spread it out. He'd be like, his last is like, we want me to what do you want me to wet? So it's okay, take the tractor and take that, that we have like a bunch of wood chips. And scoop that up. Put it in the upper yard. Yep. Follow that. We have a woman that that boards your horse with us. And she works with them out there. She's a big laughing gal. She's really a lot of fun. And so she takes over that sidestep saying okay, , come on. scoop that up. Follow me. And so he's not really out there by himself.

Barbara Hament: 16:50

I say, yeah. It's just amazing to me that he can still run a tractor outside.

Debbie: 16:56

What is he doing with the tractor? We have an arena for the horses. So he will use a thing in the back of the tractor that breaks up clumps, I guess of dirt or mud kind of thing. And so it just smooths or loosens it up. So it's softer for the horses. And you have to move manure, that's part of things too, so that people clean their stalls, and then they pile it up. And then he'll scoop it up and then spread it out. So he can do all that. Yeah. But again, it's just scoop it up, take it there. Or it's gone the arena. And I forget what they call it. I don't know. I haven't can't remember what it's for. Right? Yeah. gravier. Yeah. But he's so it's like a one

Barbara Hament: 17:37

step command that you can give like, you can say, Okay, do this one thing. But if you say do this, and that they can't follow

Debbie: 17:45

it. Big example today is he had taken some trash cans from the property out to the trash and it gets picked up. But he left the cam there. So I said, Maybe while I'm doing this, you can take that cam back to the barn. So he's like, okay, what can where the trash? Where's the trash? Where the people pick it up right there, then pointing inside. Okay, which trash cans don't take the big ones take the little one. It really I gave him too many things. So God knows if he did it. But like there's nowhere for the people at the barn to put the trash. So apparently, he's out there working on that now trying to get that trash can back to the barn.

Barbara Hament: 18:22

Such a simple thing in his past that in no time at all he would have done without even thinking of it. Probably he would

Debbie: 18:30

have remembered to take it back because he emptied it two days ago. But he left it out on the curb. And so I was like, oh, we need to take that back. Like it's smaller cam that goes in the big cam. So yeah, that's fascinating to try to. And then I like Okay, forget it. I'll just do it. Many of us want to do that's insulting. And I have to be very careful. I'm very I've been very good at that. I'll slip once in a while. But if I he says I talked down to him or something. Maybe that example would be like, I'll do it. I'll do it. Then he'd be like, No, I can do it. Just say it. Right? Tell me how to do it. He's blaming me for my delivery of how to tell him. And of course

Barbara Hament: 19:06

you just have to take that in and say, Oh, right. I'm sure in the past year, like I told you how to do it. I told you exactly what to do. Now you're playing is like, okay, yeah, the trash. Take it. You're breaking it down very patiently and calmly as calm as you can.

Debbie: 19:25

Yeah, colleagues, you can. But I wanted to tell you that one of the things that what really helped me with this, my patience and such with the whole thing is in the morning, I'm making sure that I allow time for myself to meditate and focus and put my intention of being loving and kind and patient. And if I do that, it really works. I mean, I just start my day calmly, instead of being shocked, like, how can we don't know how to do the trash? I'm like, Okay, this is what's happening. So that's really helped me just say more Learning gratitude or whatever you want to say, how do you want to do it? But it really

Barbara Hament: 20:04

does help. That is such a great idea. Right? Is it just about your yes to be mindful and set your intentions for the day? And then to work really hard on my patience? And to recognize I lose my patience? Okay,

Debbie: 20:19

I've got to just how important is it? How important is it exactly like

Barbara Hament: 20:24

to just how important is it doesn't matter that the trash cans are out for two days, it really doesn't matter. I mean, you can get all in a bunch of out it. But yeah, in the scheme of life. So

Debbie: 20:36

yeah. How important is it reminds me that he's having a problem with his brain. I mean, I have, because I'll wake up and he'll look like a normal person. Normal, then you'll be like, what? Oh, like, he thinks he fed the dog this morning. And that dog is following me around like, hey, hey, somebody needs to feed me and cheese. And I asked him three times did you feed the dog because I have a dog. So I'm like, Okay, I'm not sure if he's asleep. Now. He's alright. So I gave him a little half cup, just in case.

Barbara Hament: 21:10

That's good. Or otherwise, he's starving and gave up trying? Yeah.

Debbie: 21:16

He's overweight. No, but that's the kind of thing.

Barbara Hament: 21:18

Oh, that's the sort of thing. You're saying that you feed the dog. And he's saying yes. And no sign of like, I can empty it. Or we have

Debbie: 21:29

a cup that we scoop up the dry food, it's a glass, it's a big glass. And that after you fed you leave it out. So what the other person knows it's out, otherwise, it's in the bag. So first thing when he said to me this morning, I can't find the glass. I'm like, oh, so then I found it. And he goes, Oh, you're so great. You found it, then. So did you feed him? He said yes. But I think if he didn't know where the glass was, how could he offend them? And so that's why I kept asking him. So anyway, let me give up.

Barbara Hament: 21:55

Exactly, ya know, and those are like simple systems you always had, right? Like, yeah, you probably think two seconds about it. You'd look the cup was there it wasn't there. You know, if the dog was fed or wasn't now missing cup, God knows where.

Debbie: 22:12

So yeah, to me was like, I don't even know how it got out there.

Barbara Hament: 22:16

Like, I'm sure many other things that are misplaced in your life now. Yeah. Really good example. Thankfully, you have this meditation practice in the morning, because Don't you think that can tip you over the edge? First thing in the morning? Yeah. Between the pills and the dog, you're already like, stress level already very high. And it's not even nine o'clock in

Debbie: 22:36

the morning. Here's what's an interesting thing. And I think I brought this up in group. So I do that meditation and reading in the morning, but he'll come in with that handheld vacuum cleaner that I was so happy to get because it's such a drag, take out the whole thing. And it's the loudest machine you've ever heard. So I'm in there, trying to be really quiet. And he comes in he wants to help because there was rain. goes all around my chair. Because Are you kidding me? And then I realized he must need some attention.

Barbara Hament: 23:07

Ah, so that's his way of saying, I need help or I need attention or figure out practice. Can

Debbie: 23:14

you help me with breakfast? Or? Yes, something? Yes. Interesting thing. His whole life is an attention getter. I mean, even before he was diagnosed, I used to say he was too much for me, he's too much has been for me what it takes taking part time. If he's not working or entertaining, then he's got a lot of energy. So he did very active sports, he played hockey, and he rode his horse, competitively not racing, but whatever. Now he's got all this built up energy. And then I realized, if he needs my attention, I need to close my book, and give him some attention because that's huge, because I know there's some ladies and I have dear friend who's has been non communicative, we'll see has Alzheimer's and he just sadly just passed away. But it's different than LBD I guess. But I don't know what's coming really with LBJ.

Barbara Hament: 24:03

And you can recognize the signs like he's not saying to you, Hey, can you come and help me with this? No, as he can't admit that he needs help with it. So instead, he's running a loud Balkin, which basically says Get up. Out here. He comes

Debbie: 24:21

in if I do sleep in because he'll get up like 45 minutes and he'll say, You okay, you're still sleeping. And I'm like, Yeah, I want to sleep. The dog wakes me every night. I can't I wake up anyway, three o'clock in the morning. I can't get back to sleep. And I like go, I like to sleep. Let me sleep. Nope. He wants me

Barbara Hament: 24:38

locks you up. He needs you. Interesting. Yeah, that's it. I can't communicate it. But he's certainly showing it in other ways. Yeah. We've talked about some of the frustrations that you have throughout the day. And so tell me a little bit about how you're coping with all of this. You said you have this meditation practice and That is wonderful. You start your day out all my breathing deeply mindful with gratitude. That's fabulous. Is there anything else that you want to

Debbie: 25:10

talk about? came up during a daily? care.com?

Barbara Hament: 25:14

Absolutely. Let's talk about that. Tell us about daily care.com.

Debbie: 25:18

That's a wonderful website. They send you something every day. And sometimes it applies. And sometimes it doesn't. When this particular day, he was talking about self care of the caregiver. And it's a website for caregivers. So I was like, yeah, what can I do for myself, so then won't take away from him? So I started yoga, which I go twice a week. In the old days, I might be like, oh, what should I be doing next? What am I in there? Now I go, Okay, this is my time. And I totally focus. And I've never been such a good yoga person. I'm so grateful to have this quiet time to myself.

Barbara Hament: 25:53

I know that a class that you go to out of the house it is.

Debbie: 25:57

And then I'll have coffee or lunch with a friend once or twice a week. But this was really interesting that I've started drawing, I drew on some hard boiled eggs, some cartoon characters, which I just did randomly, I don't even know I could do it. But they just they were calling out. Anyway. So my husband adores them. He thinks I'm brilliant and funny. And so it's really cute. So we were doing that for a while. And then I started drawing on our grease board where we lead notes and stuff. And then I did all these different characters, but I don't have a message that I want to give. I mean, it's like, I should be like a cartoonist. And I'm like, I don't know what I want to say. Then I was at a memorial, unfortunately. And I was talking to an artist and she said, that's all fine and dandy. I was telling her about this. And she said, but you need structure. And so I joined an art class. And that moves for you.

Barbara Hament: 26:48

That's so great to know, when you go to an art class.

Debbie: 26:51

I do. And so I really enjoy that. I hate to even say it I also go to maj on I mean, I'm finding a lot of time for myself.

Barbara Hament: 26:58

Great. And that's why I think you're coping so well.

Debbie: 27:01

I think so. I really do. So when I come home, my mom. I mean, sometimes I'm tired, but I'm happy. I'm like happy I've done something for myself. Because at one point, it was just doctor's meetings and appointments and everything was explaining and it was just all focused on him. And I was losing myself. I was losing who I was, what would I do to take care of me? And I really thought hard about this. So I'm feeling really good, actually.

Barbara Hament: 27:30

I'm so glad. That's great. I can see it. You look really good.

Debbie: 27:34

Oh, thanks. Thanks. That's shows.

Barbara Hament: 27:37

And you know what, and with this, I just had someone on a neuropsychologist on it, she was talking about how your lives directly impacts your ability to care. So your caregiving,

Debbie: 27:50

and that makes a difference. Oh, I'm much happier and more at ease helping and repeating and telling, explaining things are much, much better, because I know I've got something else to turn to. But when it was I when I was feeling overwhelmed by all of that, and then resentful of not having enough people around to help and all that now, I feel pretty good.

Barbara Hament: 28:12

So you have brought people in to help out and let them know I was talking about family and stuff. Uh huh.

Debbie: 28:18

I haven't had anybody.

Barbara Hament: 28:20

So it's that there's that one woman that helps them out. And oh, by the

Debbie: 28:25

hills versus you, right? Yeah. And there's another guy who played watches hockey, so I thought, Oh, he can come in people say don't really bring your friends in. I've read two different things, actually. It said, Have your friends help get them. They also say don't have your friends be the care caregiver. That's going to help hockey season starting. And so I'm hoping this guy can come watch hockey, which are

Barbara Hament: 28:49

exactly so that's the kind of help you can have him do. That would be great. So he comes over watches a hockey game gives you time to do whatever, for an hour or two. Yeah. All good. So at this point, really no hired help. You haven't needed it yet.

Debbie: 29:06

Because he can still dress himself feed himself, do his daily hygiene. He could do all of that. And he gets around really well. So it's really more about companionship and giving me a break. But then that makes me feel really kind of bad because I'm this companion, that it's just like, there's other things you want to do besides just sit together. And while he does, he stopped doing his pottery for about a month now because he said he wasn't improving any that he does beautiful stuff, or trying to encourage him to get back to pottery.

Barbara Hament: 29:39

He has a place a studio there where he does it

Debbie: 29:42

in town. And we have a studio here too. It's a small space and but it's better if he goes to town. He needs to socialize with other people.

Barbara Hament: 29:50

Yeah. Does he come back in a better mood to when he's out? Yeah,

Debbie: 29:54

I mean, he's proud of himself. Look what I mean. Yeah, that's really a big deal.

Barbara Hament: 30:00

So he's functioning pretty well. Still.

Debbie: 30:03

Now it's pretty amazing actual 10 years since he first noticed that something was off. And his was diagnosed maybe five years ago. But I will say, and my daughter remembers this, that he has lost his keys, checkbook glasses wallet over all these years since I've known him, because he's kind of always been a preoccupy kind of person. He's a creative person. So he's thinking about creative stuff now where he put his wallet on top of the car and drives off and comes back and finds it in the street that's happened more than once, or run over the glasses.

Barbara Hament: 30:37

It's an even before the diagnosis.

Debbie: 30:39

Yeah. And I kind of mentioned that to the neurologist and he didn't think it made me difference, but I think it might have, I don't know. And he had some football injuries when he was in high school. Actually, when I met him, he had an eye that was a little wonky, like it didn't focus. And that was from a football injury. That was a head injury. He had the surgery to straighten them out. But he used to have to work really hard to make his eyes be straight. Looking straight out. That's the kind of thing that I think that they should be writing notes about.

Barbara Hament: 31:12

If he had had trauma in his history, of course. Yeah. Interesting. You wonder if that's contributed to where he is today.

Debbie: 31:19

So they do all kinds of research. And it's funny, I asked him if he would like to donate his brain to science, and he does.

Barbara Hament: 31:31

Okay, so coping mechanisms. So you, you are taking classes, you're meditating, you're doing artwork, you're probably gardening, I would imagine on this side of

Debbie: 31:43

much the bugs really get me badly. Yeah, this year have been bad. But yeah, coffee or lunch with friends. And then somehow there's all these musical events in town. And we've been going to those which is nice. It's really close by and he really loves to hear people singing in the music.

Barbara Hament: 32:01

What did he use to play an instrument? You said he did? guitar? He

Debbie: 32:04

still plays guitar. You still can play guitar? Yeah. Oh, yeah. He does. But he had oral surgery 15 years ago, and and also some on his vocal cords. So he used to have beautiful voice. And now it's it's not what it used to be, which is really sad.

Barbara Hament: 32:20

We've had this whole conversation, where you've been a caregiver now for a while, is there any advice you would give to other caregivers out there?

Debbie: 32:30

taking time for yourself is so helpful. And try not to lose yourself in the caregiving. Just remember, what made you happy and brought you joy? And try to still be able to find time to do that?

Barbara Hament: 32:43

Every day? Really good suggestion. Yeah. And clearly, it's working for you. Hopefully, it is. Right, moment by moment. Yeah. This is a moment by moment disease. So if there's just one thing that you want to tell other listeners, what would that be?

Debbie: 33:05

Really urge everybody to start your day with some kind of prayer, meditation or intention of having a good day, a good Loving Day and acceptance of the disease so that it's not a big surprise to you. And your nerves, and remember to breathe?

Barbara Hament: 33:24

Absolutely. Remember to breathe. Yeah, really good advice is we can forget the most basic things. Oh, yeah. Yeah. So an intention for the day to make it a good day, a loving day to make you a loving person throughout the day. Thank you so much for being here today. I really have appreciated you coming on talking about your story. I know it's hard, but you will have helped other caregivers just know you've helped other caregivers. For them. Thank you. Thank you. Thank you.

Debbie: 33:55

Thank you. Thanks, everybody.

Barbara Hament: 33:59

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