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I'm trying to get him to differentiate between what's truly, there's true danger and concern versus something that there's no danger and and it's easy breezy to do. It's not difficult at all. If you can't do it, you can't do it and it's okay. And if you fail at it a big fail is that the failure of the consequences of no big deal.
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So, yeah, he treats everything with the same sense of credit, urgency, and critical boldness and immediacy and danger. And it's not you as a caregiver. I'm trying to be patient. I'm trying to be empathetic and compassionate while I'm also going through a lot of stuff.
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I'm also going to the loss and I'm going through things and I sometimes feel guilty that I'm focusing on my needs, because he's going through so much.
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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.
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Today on the show, I'd like to welcome Sherry Sherry is in my caregiver support group through the Mary s. Easton Center at UCLA. It's for caregivers, his loved one has a diagnosis of dementia with Lewy bodies. And so Sherry, welcome to the show.
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It's great to have you here.
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Thank you happy to be here.
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So I've never met your husband, Ray. I know you've talked about him and grew. So tell us a little bit about your husband and man he was who he used to be and when he was diagnosed.
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Sure the man who used to be versus the man he is today is quite different. I'd known Ray for about 25 years. Been with him for about that time. And when I first met him some characteristics about him really struck me. One was that he seemed very fearless. And the first one to two months of dating, he said to me, I think I'm gonna run the LA Marathon and the LA Marathon was coming up. I knew he did a little bit of running, but I thought most it'll take about a year or more to train for something like that. That's coming up pretty quickly in March. He said, Oh, yeah, yeah. And I was saying, how many miles do you run now?
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It varies maybe like 10 or so.
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But yeah, I think I think I might try it. And so sure enough, not only did he do the LA Marathon, but he came out with a really good time. Wow.
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And I noticed certain behaviors of an index just seemed so fearless to gain for anything very athletic. He was also very into surfing more into surfing than running and surfing the biggest waves in Malibu and he picked up surfing at I think he said it was about his 40s. He had never surfed before. He just had this fearlessness about him, which I really admire because I'm not fearless. So I just thought, Wow, that's pretty amazing. And then I noticed he just seemed resilient. He had tremendous energy. He is a retired physician at that time, was very busy physician, and could a work call and go two days without sleep and just be up all night, involved in surgeries and just roll into the next day and have several days of incredible work. Sure, he'd be a little tired, but he just was able to go. He's 10 years older than me and has always had way more energy than iPad, and much more resilient health wise than myself. I've had since I met him some serious health issues, including chronic fatigue syndrome. And so I'm a caregiver with someone that has had my own health challenges, particularly energy and pain since well before I met him. So I was the one that was kind of the bleaker one and the one that needed some health attention can't be saying can I do some shopping for you? What do you need that kind of thing. So we've had much of a role reversal. He's a very sharp guy.
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He was he's always been interested in just about anything our music, we would go dancing at times really enjoyed that he'd be singing come home from work a long day of surgery.
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He's an anesthesiologist long work during the day doing intense work. He'd walk in the door, singing show tunes, very common. I'd be making some dinner and he'd be singing show tunes. He's a he's always been a very happy guy. And I started noticing I would say five years before he was diagnosed some changes in this personality. He was getting more withdrawn more quiet didn't seem so happy all the time, didn't seem interested in doing as much anxiety seem to really creep up anxious about so much. And before COVID First I had him do a physical, which had started pushing him to do. A lot of doctors don't see doctor was one of them. And I started getting him to do things more regularly. And I asked him on his upcoming physical to have his doctor, also UCLA to just do a cognitive evaluation. And I noticed is that got off the calendar and was wondering what happened to that doctor MIDI kept pushing it. Do you remember if this was right, but we I think right before COVID, I finally got him to do a physical and see his doctor. And I reminded him to ask him about the cognitive. I was surprised that he did. And the doctor said, Oh, you're fine. It became almost said, Yeah, he did it and said, everything's fine. And I thought, Ah, okay, that's great.
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That's great news. And I'm sure there's nothing wrong. But I think I'd like to dive into that a little deeper. Why don't you ask your doctor for a recommendation for someone to do a cognitive evaluation at UCLA.
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And he did. And we got that on the calendar. And that also disappeared at some point. And I brought it up again, this now was during COVID. I tried to get him to make the appointments.
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And months went by and we didn't make the appointment. So then I just dove in and made the appointment, particularly because my mother had been in town. And she had known a number of people close people to her friend, dear friends, at least five that either had Parkinson's or some kind of movement disorder, and or dementia. And she saw some things in him. And I had not been thinking movement disorder. I had been thinking something's not right, cognitively. He's not carrying able to carry the conversations that we used to have and wasn't completing his sentences. I'd be asking him questions about how he was feeling. And he would just kind of stare into space for 15 to 30 minutes without answering questions. I'd remind him of the question. It was just, it was pulling teeth to get him to have conversations to answer my questions and that kind of thing.
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Is that a good question about his anxiety? Like you're talking at the beginning about the behavior changes that you were noticing in him? And part of it was anxiety? Oh, more withdrawn? Yeah. Do you think he knew? Was he aware of his forgetfulness? Like was he aware that there were these cognitive changes going on? Yes, he
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was talking to a therapist at the time. And he would say to me, I just need to change my paradigm, I just need to make some behavioral changes.
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And that was his thinking at the time. And I was often very focused on the anxiety as well as the therapist, not the therapist wasn't focused at all on the cognitive, he thought really, it was anxiety that was overwhelming him and causing these issues. But I had a feeling there was something more going on. And I don't know that I've mentioned this to you. But I volunteered at a hospital in the area as a patient representative. And I did that for a number of years. And my aspiration was actually to work with the elderly. But the hospital didn't have a program for the elderly. And I respected this hospital in their program so much. They said, I think what you want to do, could be somewhat fulfilled in being a patient representative. And I really enjoyed it. I did. So I, one of the floors I had was Heart and Stroke. So you do get much more elderly patient population in that. So that was wonderful. But I think both of us having a background somewhat in medical, my actual background is technology. But then I did a 180 switch when I was with my husband and trying to help him and so on so forth. With that, I think my instincts might have been a little bit different than someone who may not have been involved in medicine. And then also my husband is kind of a unique patient because he's a former doctor. And by the way, all the siblings are in his father was and when I visit his family, all the conversations usually are medical, and they talk in medical jargon and that kind of thing. My husband grew up going to his father's family practice in New York, as a kid looking under the microscope taking x rays doing things in the doctor office along with his siblings, and so medicine was just second nature for him.
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Well, the first diagnosis was, I don't think he has Alzheimer's or dementia. We're seeing a specialist in Alzheimer's and dementia. I think he has a movement disorder, I'm think Getting Parkinson's. And he needs to do we need you to do a deeper dive with the specialists in that group. And unfortunately, it was over a six month wait for us to get in with UCLA. So we went over to cedars and we got in right away. And we had a couple of diagnoses. And we eventually got into UCLA and we went back the diagnoses that we got at Cedars were ruled out the individual we're working with now. Fantastic Doctor really respect to like him, thinks it's Lewy bodies, dementia, but we don't have a comp, we don't have anything firm. Just Just the fact that I noticed so much cognitive in the beginning. And that he's, that is a big issue right now, along with what appears to definitely be a movement disorder. He says, I think it's a Lewy body dementia. They
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it's interesting that your mom noticed the movement disorder beginning.
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Yes. All right. So why she knows, I thought he's getting older, maybe some of this is normal. I did not even notice the shuffling of his feet. I did not notice that. I did say he looks like a zombie sometimes. And I wasn't exaggerating, I was saying seriously. I even told him when you're practicing, you can't look like you're looking here because you look like kind of The Walking Dead. Even though I didn't watch The Walking Dead.
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That's kind of what you and I'm saying, I'm not trying to be critical. I'm not trying to be nasty or mean. But you need to know how you appear to people.
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And you're practicing medicine.
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So he was still practicing medicine at this time in the beginning when he got the first diagnosis when he stopped. But before that I was saying before we got any diagnosis, I was concerned about a bunch of things, including I didn't think he should be practicing. But the therapist we were working with said, that's kind of not my call and my business. And I sit on watching these things. And they have me very concerned and I feel responsible because I'm seeing though, and I don't think he should be practicing. And anyway, it just kind of came to shove and then he stopped working. But
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was that hard for him? Was it hard for him to give up his practice? Oh,
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gosh, hard for him is a such an understatement. I think it was a complete emotional devastation. He was lost, completely lost for a while. And I think he's still lost. He was devastated. And he still misses much of it. He doesn't miss the stress of the job. He knew he was struggling.
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He would tell me he was struggling. And maybe that's why he was so anxious.
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He was saying that tearing and bear. His hearing was challenged to talk about the site wasn't the same. He had so much anxiety, which made it all that much more difficult. And so I didn't think he should be practicing. She doesn't miss the stress of it. But he misses the people he had and the most wonderful people he worked with, he was just all the interaction, he misses routine. Ever since he stopped working, he has just been lost. I've tried to engage him with all kinds of activities. And unless I'm right next to him doing the activity, he will not do it. So I have him doing SR yoga. We do that together. In the city. It's it's fantastic. I haven't done physical therapy, they wouldn't go if I didn't go, I go because I need it. We have different therapists and we're working on different things. But I go and he goes, if I go to the gym, he'll go to the gym, but he won't go to the gym, but by himself. He's capable of doing all these things on his own. But he feels vulnerable and
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kind of lacks the initiative. Probably
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he wasn't an extremely initiating person before. But certainly not now. I really was pushing that I was really pushing him to do all kinds of things, including things on his own. And someone told me a really good piece of advice, which was if you didn't do it before, don't expect him to be doing it now. And I thought allow makes sense. Why am I pushing this so hard. I was kind of making myself crazy, and getting frustrated trying to get him to do things because I wanted to have a good quality of life. Also, I think doing new things and doing things helps with dementia and helps prolong his good quality of life, his enjoyment, his experiences, this journey, everything. I was realizing, you know what, I think I'm doing this a lot for myself too. Because I'm losing my partner. And I'm sad because it's created quite a loss for me and I do do meditation in the morning, which is a godsend for me that things come up and I things like you know what, I think you're doing this some of this for yourself. You have to let go now and let him make the choices he wants. It's also best for you to let go and stop banging your head against the wall trying to get something to happen. That's not going to happen and that for some reason he doesn't want this much As I wish were very different personalities to I'm very a type go get I'm fearless in terms of talking to people doing things being outgoing. He's a more introverted person more quiet and things like pursuing anesthesia is more of a solitary thing. And the when I look at all the activities he did, he always did solitary activities like surfing and running, you know, whatever it was, was an individual, not a team kind of sport situation, I have to recognize that he's going to do things in a different way than I'm going to do things. And I have to just accept that. I don't know if other caregivers have this challenge. But I'm wanting him to be what I want him and need him to be for me.
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And I want him to last as long as possible. Of course, I want him to have quality of life. But I want him to be here very long to continue to be with me. And yet, it's not what we had dreamed retirement would be. We both worked really hard. And it was for this wonderful gold at the end of the rainbow, which was going to be we were going to travel a lot, we were going to a lot of wonderful things. Yeah.
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And I'm sure you hear this a lot. But it's now he's telling me he doesn't want to travel and he's so anxious. He doesn't want to do anything. Even with me. I knew what he can do. So I do push them on certain things, such as we went back in April to see his family, his siblings who are so kind and so wonderful. He had the best time but it was so hard for me to get him to do that. At one point, I just made the arrangements because he wouldn't agree. And it was time to just make the arrangements and see if we could do that. Yet three meltdowns beforehand.
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anxiety attacks, I would say.
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And I just calmed him down that all those things Oh, my God, don't don't worry about this.
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Okay. I would ask them periodically while we were there traveling, if he was enjoying themselves, and if he was having a good time? And he said yes.
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And I said, Okay, remember this, the next time I want to bring up so travel. And it had been we've been really lucky because we had no problems getting to TSA, I order a wheelchair. He's agreeable to that the first time. He gave me a little bit hard time. But he actually thinks it's all easier, got rid of the ego part of it and just said, Okay, this makes everything easier. Yeah, let's do that. So we sailed through everything. And there were no delays and not having to go from gate to gate, no, another terminal or an error or any of these things. So it was very easy, breezy, and a little bit on me because I had more responsibility. So we turn around, it's more responsibility. It's challenging, it's very challenging. So I'm like, I was so easy for you, because it's challenging for me. I'm gonna share that. Yeah, with everything went smoothly, and his anxiety, I'll be at high kind of came down and he enjoyed himself, my hope is that I'm going to be able to talk him into another trip, I don't know, he enjoys himself. And I know if I push him, he'll enjoy himself so much more so than if he's just stays here. He's a big reader. He reads a lot. And I've asked him several times, tell me about your quality of life. How are you doing? And he says, It's crappy. I say, Okay, there's a lot of things we can do to improve that. I just need you to work with me. I know what you think that's the hard
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part. And I, you've mentioned a couple of things that are so common, right, that we hear in group often, like you want him to keep active. They sit and wonder, wait a minute, am I doing this for me? Am I real? Is this really for him?
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Who is this really benefiting?
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And I agree, it must be so hard for you to see him just sit and not kind of actively take part in things where? Yes, it sounds like you're pushing him to go to physical therapy to go to the gym, to do whatever to take a trip all of these things that you really want him to do. And his you have to get enough to go there in order for him to do it.
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Yeah. And in fact, I went to we did SR yoga this last week. And then from there went up to my doctor, because I needed a fiscal, we had the cleaning people coming to the house, some cleaning people. And I said you can just stay in your office. We were doing a slightly more advanced senior class and I wanted to do it. But I said you don't have to do it. And what would you like to do? And he said, I'd like to come with you.
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I'd like to do the yoga with you. And I'd like to be with you. I think I'd prefer that. So we normally he I think he would have said no, but he didn't want to be here while people were cleaning. And I said okay, he doesn't participate in the full yoga. He just does what he can which is maybe a quarter and okay with that. Right? Yeah, yeah. And then in the beginning, I wanted to show him the moves and tell him Okay, so what this is, and I was actually afterwards not during But afterwards, I was showing him things and I realized he wasn't practicing it and then the next lunch I finally said, Okay, I'm gonna do my own practice and he's gonna do his and I'm not going to watch because I don't want to I help them and that's gonna give, I'm gonna worry. And I just got this is my practice.
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So I just blinders on, I don't see. And then how exciting is it for us to go up to Santa Monica to do my grocery shopping and then go to my doctor's appointment. And then we are on the drive back. And that was a great day. This was a great day.
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And he does say that when we've gone physical therapy, when we've gone to the gym, we've done stuff. He says, this was a good day, even if it's follow me around, rather than
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shopping with doctors going.
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Yes, he says this was a good day. And so that's another reason I push them. Those are the days he resists. And the days he enjoys the most. He doesn't normally say reading all day long, that this was a great day. But going and running errands with me. That was a great day.
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Yeah, go figure he wants to be with you or sear his touchdown.
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I do think he gets something out of watching people being interactive being around outside. Yeah.
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Absolutely. Just the fact
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that we're in the car driving, seeing life seeing things that he doesn't see in his man cave office. Reading.
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Yeah, absolutely. And the other thing you said, kind of lightly, but so true. And so many caregivers talk about this. He said, I'm taking on more responsibility over time. Right? And that you don't talk about it. But that's how you feel. And that's so true. Right? I'll make a trip to New York. Everything's your responsibility. Suddenly, he's in a wheelchair and you're responsible for everything else.
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Yes. The carry ons, all the interactive everything.
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In my case that may be different than other people's cases. But in my case, I don't mind more responsibility coming on me. It's just life. And that's for me to deal with.
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That's not his problem. That's, and no reason to have anger or frustration at him for that.
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What we had this long conversation yesterday, because I've kind of put my foot down on no driving. He was doing a little bit of driving just one block to the grocery store, occasionally getting some things for me, and he likes that independence, but I have been fighting him for quite some time and stopping driving. So I finally put the kibosh down. I said no more driving, we can't we can't be doing the driving.
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And I know that's really hard.
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But you know, and
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was that because he has the diagnosis? And half the doctor said, No, what was your thought
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one of the first diagnosis we got, they did say that, but then that diagnosis seem to be incorrect. His doctor, this doctor is missing for several years, he hasn't said anything. However, I've been just noticing things, I'll have him drive to the gym. And I'll be the passenger. And I'm watching everything he's doing and not doing. Just kind of give him some hints. I really, he's very sensitive. So particularly right now. So I'm really trying to be careful of not telling him what to do or pointing things out unless it's really important. I just been observing. And I just he's not as aware of things as he used to be, including around the house, which must be also if you're not aware that you're leaving the milk out, you're not aware of certain things when you're driving. And then the other day, he went to the gym by himself and have the window of most wonderful neighbors. And we're in a cul de sac. So we all can kind of see activity, and we watch out for each other. It's wonderful. He was coming back, I had to do something here at the house. I had a video Zoom meeting, he went on his own, which was monumental because he hasn't done that a long time. So I thought that was great. The next thing I know, I get a knock on the door. And my next door neighbor said I think something's wrong with Ray. He stopped in the middle of the parking lot. And I was behind him. And I don't know what he stopped for. I don't know if he's having car trouble. She knows about his health issues.
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So she said, I don't know if there's something with Ray. And so I ran out there and He then started driving and we came up parked in that garage and I said what's going on? And he said, I think the transition there's either the transition, but
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transmission
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problem was car. I was like, oh, okay, so tell me about this. Lisa, he needed to get his car to be serviced anyway. And so we made that a priority. And sure enough, there was nothing wrong with the transmission. And I've been seeing stuff and he didn't know this. But you know, I talked it over with a friend.
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I said, That's it. That's it. It is my next door neighbor was going What's she thinking letting you drive? And I've been fighting him with this and I just thought Okay, that's it. He doesn't know and I'm gonna have to gently tell him let the car get fixed. And I'm gonna take my moment to tell him and so each time we were going to the gym I said, Oh, you know what I want to drive I want to drive a car lips or I'd be living dry. And then I just after a couple times, I just kind of let him know. He's not been driving much at all. I've been doing 99% of the driving Anyway, but I just have the I need to tell you, what I'm, where I'm coming from.
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And so he's had a couple of days to digest it. And yesterday decided to say to me always, when I asked you about your quality of life, and so on and so forth, you say you're so vulnerable. Can you tell me a little bit more about feeling vulnerable? In what ways? Do you feel vulnerable? Because I watch you and you have so much light in you. And you have, you're capable of doing so much. I mean, I see you. And I'm curious where you feel vulnerable. And I'm also curious about trust issues that how you feel about trust of those around you, and caring for you, and so on, so forth. I just like to open up this conversation. That sounds all great. And quick, you know, what I get in return is someone staring at me for 15 to 30 minutes, and then kind of looking away and staring at me, and I kind of try and prod a little tell me what you're thinking what's going on? What?
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Suddenly, after prodding in I need to remain enormously rich, because he's got anxiety. So I can't really show frustration, or do I just, nor should I, and it's not healthy for me. I'm telling myself stuff as we're going through this, Sherry, just relax. Just it takes as long as it takes. Go to your meditation place. Just feel yourself breathing. It'll take as long as it takes this, we're not in no rush. But then also say some prodding things to try and get them to open up a little bit. So long story short, he brought up the driving easy before that. He said, you have all the power.
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And I said, Yeah, hearing you.
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That's gonna be hard. And I said, Tell me about all the power. What do you mean, driving? When I said to him, I don't think you should be driving anymore. I think that's it. He didn't say anything. He didn't fight me. He didn't say a word. I wasn't sure what he was gonna do. He's not a, he's not a violent person. He's not abusive person. He's not, doesn't express his rage or anything like that very much. And he does get upset sometimes. And usually, it's funny, when he does get upset. But he often says it's not you don't upset with it. So I'm upset with myself, when we really dive in and try and figure out what he's angry at me with. He always ends up saying, I'm angry at myself.
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It's not you. He's just projecting it on me. But so tell me about the driving thing, and then express a little bit about doing something or not being able to drive. And that was the last bit of his independence, he loved going to run errands for me, I'll be very rarely. And then one thing he did, which I just loved, he wouldn't tell me.
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But he, if I was running an errand, he kind of sneak and go get some pizza. So dessert, voted the ice cream store. And I don't care if he doesn't eat that I want them to have fun.
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But I'm very into health. So I cook very healthy vegan meals.
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And I'm very healthy, because of my own issues. Probably was what drew me into that. So he's always eaten very healthy, because he eats what I cook. And that's what I cook, but he loves food. So I always make sure that his stuff he likes and that he enjoys eating because it's at this point, it's just the highlight of his day is eating.
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Okay, maybe the little cheese and a little dairy
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profile that I saw, I see what he's doing. And also point to Ross doesn't take that long. He's gone to an hour and a half to pick up some milk. It's like, oh, and I'd be sitting somewhere else. Yeah, he's having fun. I hope he's out there having a good time. Like, secretly, he thinks that I'm not going to tell her. I wouldn't criticize him if he did, but he's kind of sneaking out and doing his own thing. And that's good. I'm like, Okay, I'm not going to ask him, I'm gonna bring it up. I'm just gonna let him have that. And I'm inside tickled because I think he's having a good time. So that's good. And he so he brings that up, he's like, I can't do this anymore, and so on, so forth.
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And I said, Wait a second. You are so fortunate. So I, first of all, I acknowledged the loss. I said, Okay, this is a huge loss.
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This is enormous. And you're grieving that and it's understandable and you need to grieve this and you need to this is a huge loss. So you do need to go through your you need to set up some time but just think about the loss of this thing that is huge. It's one that I think it's probably the hardest thing for anyone in these conditions. He is also attending a support group for patients with Lewy bodies, and he's finding it so helpful. And he's listened to these other patients talk about their while so being able to drive and it's I think it's the number one hardest thing for them. Yeah. That is like the final straw or independence. Not being up losing that hookeri
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Nice. So Arctic.
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lit about his feelings. wouldn't say it's real articulate
00:30:05.970 --> 00:30:26.759
words in there. And there's no one who is like, pulling at threads trying to get him to speak and talk. And at this point, he doesn't say complete sentences. That's words. And so then I kind of say, so is this what you're saying? And this is what you're saying you fill in, fill in a lot. And I also
00:30:28.170 --> 00:30:30.450
have a today's a really lost language.
00:30:30.660 --> 00:31:14.700
He's really lost language. And I don't know, you know, it's a combination of things that at this point, it doesn't really matter, because it's just lost. But is it the cognitive Is it the anxiety is hearing, there's some doesn't want to disappoint me or doesn't want to look less manly to me, all those things, there's so much wrapped up into him not wanting to tell me things and express itself to I've noticed with some friends and relatives, that he appears more articulate, conversant, and together than he is with me. And I've even asked him about that. And I said, How can you have an easier time talking to somebody else than me, because he's always told me, I'm the safest person for him.
00:31:15.569 --> 00:31:22.920
And then he's here that too, right? We hear about social graces, people's social graces remain intact for a really long time.
00:31:23.339 --> 00:33:05.460
Oh, I didn't even know that. But since the beginning of meeting him, he's always told me he's never told anyone that thinks he's told me. And it's nice that you can feel that about your spouse. That's a good combination. If you feel like you can confide in your spouse, maybe things you've never invited anyone else, you know, safest person I've ever had in my life. And this kind of thing was really nice. And I'm he was my guy that I told everything to poor guy would have listened to my last conversation with my sister. And I can't believe she said this. And she didn't say that, and so on and so forth. He was the one who would tell everything to and now I've discovered the guy that I the one person in my life that I would tell everything to, doesn't completely understand what I'm trying to say. And what the point is, he might say, oh, yeah, that's so your sister, she she did this. And I'd say, well, that's not really what I'm talking about. I'm, and I was spending so much time trying to get him to get what it was, I was trying to say, and spend an hour trying to get him to understand what I was trying to say. And after a while, a moment hit me when I was meditating, that I had to accept. This is a new stage, he's not gonna get it. And that's a huge loss for me. I'm sorry for him. But I'm also sorry for me that the one person that I could tell everything to and understood my experience and my feelings about these things, is lost that ability to listen. But he doesn't get it really. He thinks he gets it. Money's not on the point. What was annoying the or what was hurtful? Or what was upsetting?
00:33:05.759 --> 00:33:08.039
You're talking about such big losses for both of you?
00:33:08.279 --> 00:34:28.559
Yes, yeah. And then it's great. I'm always trying to get I know Courtney is from just express himself. And I want him to express himself. And I also don't want to assume that I think we know what's going on, or how he's feeling. So I'm bringing these things up. But it was him but it's really hard for him to express himself. I told him, I really feel like this is a huge loss. I'm glad we're talking about it, I think you need to talk about this. This also, I will say that what we actually initiated this conversation on my part, I kind of forgot what really initiated me bringing this up that Nike had had some nightmares. And I've talked a little bit about this in group. He's having kind of these terror nightmares, where someone is trying to kill him and he's running. They all kind of seem to have that element. They're not the exact same dream. This one was on motorcycles. And he was trying to ride. As far as I know, he's never been on a motorcycle. But in the dream, he was on a motorcycle, all these dark figures, couldn't recognize faces. were chasing him. And he was trying to chase them. And I'm kind of leaping to what these kinds of dreams are. This is a common one lately, what they might mean and he's got an illness. He's a medical professional, he understands the illness and what the illness means and that it's not curable.
00:34:23.670 --> 00:34:45.210
And he's losing this battle slowly. I'm grateful that it's slow, but he is it's not a battle, he's going to win. And so I was wanting to talk to him a little bit more about what I think is going on in the dream is that he is not dealing with his feelings during the day, even though he is a therapist.
00:34:42.690 --> 00:35:04.619
Let me help them a little bit to just give him an a venue to talk about this an opportunity to talk about this. And maybe it'll help with some nightmares. At some point, it would be ideal if you gave yourself a certain return. I don't know if that's a day, a week, a month but you need to do Go through the grieving in the middle. So keep happening, but you need to deal with this. He avoids dealing.
00:35:04.920 --> 00:35:13.800
He's just so distracted all the time, read, read, read watch TV wants to follow me everywhere, he doesn't want to be in solitude. So I said, you need to spend some time grieving this.
00:35:14.099 --> 00:35:21.239
But then there needs to be a pivot. And the pivot needs to be looking at everything you do have, I said, we are so lucky.
00:35:21.780 --> 00:35:34.949
You've got Uber Lyft, a cab, you can walk, we can walk to all of our stores We're in. We're a block away from all of our stores. But we have an old dial.
00:35:29.940 --> 00:35:43.440
Right. And as you certainly that was the first thing I mentioned, you have a wife, a lot of people do not have a spouse, they're living alone. And I said, a lot of people also the same age, and they're both fighting something.
00:35:43.590 --> 00:35:50.460
I said, you're very fortunate to have a wife that's willing to drive and can drive anywhere.
00:35:46.199 --> 00:36:08.159
But he was kind of saying, Well, no, you don't. You don't want to do that. And you don't want something to do with resentment, or I resent him for him to do that. Listen, where are you getting this from? Why do you think I don't want to drive you Why do you think I'm resentful?
00:36:08.190 --> 00:36:44.369
Where's this coming from talk to you about that, why you feel in that, you know, was able to really nail that, and it will ultimately he said, actually never done that. But Thursday, when we did the yoga and went up to my doctor, he said, You had me change my appointment, he had an appointment with a podiatrist and it was in conflict. And I actually didn't say you need to move it, you can take the shuttle, but we'll dial a ride over. But I'm not going to be able to because I have a doctor whose appointment and he moved the appointment. He used that as an example of me, not
00:36:45.119 --> 00:36:47.159
wanting to take him not nice to take him
00:36:47.159 --> 00:36:51.900
and being problematic.
00:36:47.159 --> 00:37:49.170
That was a problem. I just said, I'm not gonna be able to drive you. And in regards to all these other things, Uber the dialer, right is on. He said I can't do those. He's done. He did it once for and I said, Why can't you do that? The same reason I can't drive? And I said, What do you mean, and he said, I can't talk to them on the phone, he started having a meltdown. And a lot of anger was coming out. And I said I don't understand. And he says the reason I can't drive is the reason I can't do that I can't get on the phone, I have trouble, you know, talking to people, I said, you don't have trouble talking to people, if you can get on the phone, you've made phone calls, you've made appointments, you can still do that. And just a lot of reagent, it was a very irrational, I said it's not getting a ride on a little bus making that appointment and telling them you want to go to rouse and getting on that shuttle. And then having them come pick you up and then take you home is not the same thing as you driving. Those are two completely different things.
00:37:46.559 --> 00:38:04.260
We're talking apples and oranges. They're not the same difficulty. And because you can't drive is not why you cannot get on a little shuttle you are fully capable of doing that. And it took a while we had a complete meltdown of screaming yelling, he got up a couple times get frustrated. I wonder paste
00:38:04.260 --> 00:38:06.809
trying to tell you that he can't do it alone.
00:38:07.199 --> 00:38:09.869
Like he's afraid of doing it alone. So
00:38:09.869 --> 00:38:44.099
I said, Tell you what, why don't we do it together, we'll do that I'll sit by your side your call and tell them I said they know who you are when you call because they can see the phone number. Or they'll ask you your phone number your dress, you can give them that information. You can tell him you want to go to rouse and do a little shopping. And you can tell him how long Oh, you can tell him 15 minutes, 30 minutes, just picking up some milk, whatever it is, tell him what time you'll be done and see what time you can do that you sometimes if they're not available the time you want to go find a time that you can do it. And I will go with you.
00:38:44.519 --> 00:39:13.949
You're going to do everything, but I'm going to be by your side. And if you have any trouble, I'll help you. And then he blew up at bat. He's gonna do this or he got up and came back and he carried on a little bit more. You got Dan, they came back and I said, and he wasn't able to identify any actual situation where I was demonstrating I didn't want to drive him under the seat. You're right. You're really good about driving the places and you don't give me any attitude about it.
00:39:13.949 --> 00:40:08.610
And you're right, derive. I said so we're in agreement that you don't feel that I am demonstrating I don't want to drive you anywhere or that I'm resentful about doing things for you. And he said, right. I said okay, so we're in agreement that I said, where I will tell you, I do have a little bit of resentment or frustration with you is when you're fully capable of doing something, but you're resisting it because of my health issues. You won't even try to do something that would help me I'm doing all this for you and you're grateful that you won't do the littlest thing. And for you it may not feel it'll be feel really big, but you won't even try and I never asked you to do something But I don't think you can do right. And he said, right, I said, Have I ever asked you to do something that you weren't able to do now?
00:40:04.739 --> 00:40:22.530
Okay, so I know full well, you can do this. And I'm asking you to try and you won't even wrap your head around it and even agree to try. And to me, this is an attitude issue that you're just refusing to do your share.
00:40:22.860 --> 00:40:52.679
And he thought about it. And he said, No, you're right. And so I think we broke through that one, I think he's going to try, I wanted to give him some time to think about this loss, too, and not start getting so anxious, he was very anxious, he has these hand movements like this, that he does, when he's anxious. And he's doing this during the whole conversation. When he's not anxious. He's just sitting there. But when he starts getting anxious, he starts going like this,
00:40:53.039 --> 00:40:55.650
moving his hands in circles. Yeah,
00:40:55.679 --> 00:41:12.630
he does this kind of compulsive movements with us, right there in circles are kind of rigid, he's talking, and I think he's oblivious to it. But it's a sign to me, he's very anxious, which is good for me to know, to try and work with him.
00:41:12.659 --> 00:41:53.820
And knowing how anxious he is and being compassionate about that, being empathetic about that, and still trying to accomplish what I'm trying to accomplish and moving forward for the betterment of him. And for myself, he'll feel less vulnerable. And he'll feel more productive and feel better quality of life, if see if he's able to make a phone call and be able to go places and do things than if he just stays at home and becomes a core phobic never feeling safe going outside. He's talking about being dependent on me, that is frustrating that he's hassling them to be so dependent, and I'm trying to get him to be to hold on to the independence that he can have that he's refusing to take. I think we really worked through that. But it takes a lot of patience on my end.
00:41:54.239 --> 00:41:59.070
That's the loader cycle of Chase, right chasing his independence. And I think
00:42:00.000 --> 00:42:30.150
he's chasing the disease. He's chasing as an attendance. He's chasing himself. It's part of it's the self of this is my perception, I could be totally wrong. I'm not a doctor. He's chasing part of himself. That part, which is fear, sadness, anger, but particularly the fear, because cuz so much anxiety. And the, I think the worst is going to happen. He thinks he goes to worst case scenario and everything. He can do these things, but he thinks he can't.
00:42:30.510 --> 00:43:14.579
He thinks everything is a 911 potential failure. And I'm trying to get him to differentiate between what's truly, there's true danger and concern, versus something that there's no teacher and it's easy breezy to do, it's not difficult at all. If you can't do it, you can't do it, and it's okay. And if you fail at it, a big fail, it's that the failure of the consequences of no big deal. So he treats everything with the same sense of credit, urgency, and critical components and immediacy and danger. And it's not you as a caregiver. I'm trying to be patient, I'm trying to be empathetic and compassionate while I'm also going through a lot of stuff.
00:43:14.610 --> 00:43:25.650
I'm also going through the loss, and I'm going through things and I sometimes feel guilty that I'm focusing on my needs, because he's going through so much. So we've talked about a lot
00:43:25.650 --> 00:43:34.619
of other struggles that you guys have been having a lot of the losses that you guys have been going through, are there things that are helping you get through your day. Yes,
00:43:34.769 --> 00:44:07.920
one of the things I love is the support group. It was such a blessing. I just Googled Lewy bodies, dementia support groups trying to find out I didn't expect that there would be one down my street. But I thought, let me see if I can find one to go to. That would be helpful. And some friends kind of prodded me a little bit that it would be good for you. I think it'd be good for you. And for a while. I resisted it. I don't know why I resisted it. I was it. I thought, Oh, I'm not at that juncture yet. Yeah, I can. I'm fine. I can handle it.
00:44:08.309 --> 00:44:31.920
And sign like I said, you know, again, no one, having trouble sleeping. I think this might be helpful hole. So I found this group that meets virtually that you have to be moderator of and I just jumped right in not even knowing anyone or what it was about. And that we could even do it virtually. I just thought, oh my goodness, this is fantastic.
00:44:29.579 --> 00:44:44.820
I don't even need to drive anywhere. I didn't know what to expect. It was very lovely of you to have me be the last one to speak because that was less than to speak, because I didn't know what people were talking about and so on and so forth.
00:44:41.670 --> 00:47:30.179
But it's a pretty big group, which is nice because there's a big selection of people that have different experiences, but there's so much I can relate to and things that they're talking about. And I actually take notes. I don't know if everyone does but I take notes some of them will say some The thing I don't know what that is, or medicine or grants or this or that, and I take notes and to look into this and try and figure out what that is, and I have not yet gone through a whole session and not taking a note I've always taken, there's always been something that I found helpful that I wanted to remind myself or to look into or to do. And so it's been really helpful. I feel most of the women, that just happens to be a ladies group, there's no men in the group, I suspect that there will be at some point just happens to be that this is a women's group. My husband's group is kind of 5050 women and men, in most cases, that's husbands. And in most cases, they're further along, I think in the journey of Lewy bodies, mostly Lewy bodies, not all of them further along, and are having challenges that I'm not yet having, or I'm just beginning to have. So it's a little bit of a window into where I'm possibly heading. And in some ways, there's, you know, I will admit, kind of scared me a little bit, there was a little bit of, Oh, my goodness, this is a lot. But there's more positive that I get from the group than worry. I think when I get there, I'm going to be a lot more prepared than so far, I've been encountering things, and I was unprepared. And it took me a while to realize I was in something where I needed to let go, for example, I had mentioned trying to confide in my husband and stuff, I didn't realize I was in a place where he wasn't gonna understand that, that what was going on with me. It took me a bunch of times of hitting my head up against the wall before I realized, Oh, we're in a different place. Now it's Oh, I remember some people talking about this, oh, I remember when I had this experience, that kind of thing. Maybe getting more clued in a little faster. So that's really helpful. The other thing is that I found I have to do some things on my own, my husband wants to be at my side, 24/7, he does not want me going to have lunch with a girlfriend, he doesn't get angry, but I get the puppy dog newlook. And, like, I won't show the cheese, do something to help fund it randomly felt really bad. But I need to get out and do my own things. And so that's really helpful. talking to friends about it and talking to the group is really helpful. That's probably your meditation practice. Oh, huge meditation is huge. It's a moment of quiet for me to reflect on everything that's going on. And also to ground me of preparing me for the day to come. I have my husband was always up before me.
00:47:30.690 --> 00:47:34.230
He never needed a lot of sleep.
00:47:30.690 --> 00:48:32.519
And so he was up very early, sometime four o'clock in the morning. Now I'm the first one up, he's sleeping a lot. And it gives me a moment, a period of time to ground myself to what's coming my way and, and be prepared. I also do some kind of affirmations and things about adopting myself a little bit therapist has been helpful with this. But some things like you can handle anything that comes your way you're confident, I'm not going to emotionally react to things that my husband says or does that don't make sense, or certain things that I just need to get my head and beating emotional mental state in place for the day. And it does help me. For example, the conversation we had yesterday, just sitting there patiently at the kitchen table, and him getting up and having his little tantrum and then coming back and just picking up and I'm not reacting to it. I'm not saying you're acting like a child, but which I'm gonna say I'm sure I'm going to have those outbursts and then I do have my moments, but it's helping me not physically or emotionally get reactive. Yeah,
00:48:32.550 --> 00:48:51.690
too good. That's great. I'm sure it takes a lot of kind of between your ears, right chatter, like, just take a deep breath. Be patient, he's gonna come back and we're gonna chat about this, right? I mean, I'm sure there's if to calm yourself down instead of right, like I said, responding instead of reacting, yes.
00:48:51.960 --> 00:49:37.710
Yeah, no, do a lot of what I call walk myself back off the cliff. Instead of being at the edge of the cliff, it's like, you can just walk yourself back. And so I do that mentally, emotionally, like, talk to myself, like, let's bring ourselves back to a state of calm, which isn't always easy for me take a deep breath. That is the best thing for me. And for him, because I demonstrate the littlest bit of anxiety are things which I do at times that ricochets off to him, and then he gets into that place, and then it's not good for either of us. So it's better for both of us. If I can find peace and calm in this. It's by can be a better caregiver for him, and he can have a better quality of life and experience, then I can do so. I keep working on that. And I am not great at it. But it's a something I work on every day.
00:49:35.280 --> 00:49:37.710
You know, no one
00:49:37.710 --> 00:49:39.750
is great at it.
00:49:37.710 --> 00:49:39.750
All of this takes practice.
00:49:39.900 --> 00:49:51.480
Right doesn't come naturally to any of us. Yeah. Oh, great that you're trying to still find things that the two of you can do. Let's just yeah, that hard.
00:49:46.199 --> 00:49:58.619
A struggle. But yoga is one of the things you both can do. And he does it at his rate and pace and the best of his ability and you do it at your own practice.
00:49:58.619 --> 00:49:59.969
So yeah, yeah.
00:50:00.000 --> 00:50:04.769
And that one's a hard one to let go because I'm Bossy Pants and I want to tell them what to do and
00:50:05.579 --> 00:50:08.099
how to do it.
00:50:05.579 --> 00:50:08.099
He's like really flailing.
00:50:09.360 --> 00:50:12.480
It's like I'd my child.
00:50:09.360 --> 00:50:30.090
I feel like we have a little bit of a parent child relationship right now. It that's what it feels like. And so I'm always trying to help him and give him a friendly reminder. Helpful hint and trying to help them and having right next to me, Are you friendly? Watching him? Well, on like, Okay, I don't see that I don't see. Within my own body.
00:50:30.090 --> 00:50:50.159
It's a real. I didn't go let it go. Yeah, that's my biggest challenge in life. Just letting go. Yeah, super hard, right. I'm a fighter. This is one I have no control over. And that's the biggest lesson for me. And, and growth opportunity for me in letting go. It's the ultimate end for me.
00:50:51.000 --> 00:50:54.809
Absolutely. The ultimate acceptance and letting go, this
00:50:54.809 --> 00:51:09.929
has been the biggest challenge in that regard, then that can equal to tears coming up. Of course, I started this with my husband and being so fearless, so strong, resilient.
00:51:10.170 --> 00:51:28.260
And now I feel like I have a five year old was even having five year old tantrums, I didn't have kids. So I didn't go through that. I'm learning how to have a child, my spouse. I always did want kids, but I didn't want it to be messy. So a lot of this is kind of new to me. So it's doing
00:51:28.260 --> 00:51:52.019
an amazing job, as a caregiver with all of this coming at you, really. So you have shown your resilience, and your fearlessness. Right by coming into group and participating and being with us as it is hard. There's no question and coming here today and telling your story. It's all hard. So I admire you. I admire your courage, air resilience.
00:51:52.199 --> 00:51:54.449
And so I thank you for being here today.
00:51:54.929 --> 00:52:41.130
I'm also grateful for you, I can do an amazing job as a as the moderator, you get a lot of stuff thrown at you too, that I've watched you get things that someone will say and you're I see the surprise, I'm surprised and even potential, you know, maybe some concern and the way you handle it, I just think you are you were born to do this. And I'm just I just feel like I was so lucky to come across this group. And with you leading it's just what a gift and I am really grateful to all the people that show up at any time for their sharing because I am learning so much. It's such a gift for me. And you are as well. I hope more people take advantage of this and don't resist as long as I did to join because what a gift.
00:52:41.969 --> 00:52:44.130
Sherry We're fortunate to have you there.
00:52:44.219 --> 00:53:08.789
Thank you. Remember that you can follow dementia discussions on Apple podcasts, Spotify, Google podcasts, and many more. If you listen on Apple podcasts, it would mean a lot if you would leave me a review. For any other information about this podcast please visit me at dementia discussions.net and please share this podcast with someone you know if you think it may help.
00:53:09.269 --> 00:53:13.769
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