Nov. 5, 2025

When Words Fade: Christine's Story of Love, Loss, and Adaptation

Show Notes
Transcript

In this heartfelt episode of Dementia Discussions, I sit down with Christine Madsen, a member of my Alzheimer's Los Angeles caregiver support group and a wife navigating the difficult journey of her husband Steve's early-onset dementia. Christine and I talk about their 46-year marriage, how his brilliant legal career slowly unraveled, and the emotional toll that comes with losing the person you love in pieces.

Christine shares her personal reflections with honesty, humor, and wisdom. From the early warning signs she didn't recognize, to the agonizing process of telling their adult children and his law firm, to letting go of the life they once knew—Christine brings us into the deeply personal and complex world of caregiving. If you're a spouse, partner, or family caregiver, this episode is full of truths you’ll likely recognize and encouragement you didn’t know you needed.

Episode Highlights:

[0:40] - Meet Christine and hear how she and Steve met at debate camp as teenagers

[2:20] - A young love story and a 46-year marriage built on intellect and conversation

[5:13] - Early signs of cognitive decline during COVID and the initial diagnosis

[10:15] - The emotional toll of hiding the diagnosis from family and Steve's law firm

[13:55] - Steve's resignation and the loss of identity that came with it

[16:55] - Language loss, isolation, and grief within the marriage

[22:31] - Comparing dementia caregiving to a marathon and facing unpredictable hurdles

[25:14] - The driving dilemma and setting boundaries for safety

[29:47] - How caregiving affects patience, control, and old communication habits

[34:01] - Traveling with someone with dementia and adapting routines

[39:26] - Christine's coping tools: painting, music, exercise, and alone time

[42:02] - Recommended reads: Travelers to Unimaginable Lands and Loving Someone Who Has Dementia

[44:34] - Ambiguous loss and grieving someone who is still here

[45:52] - Financial challenges and the burden of full responsibility

[48:49] - Drawing lines for when to seek help or facility care

[52:15] - Silver linings: finding support in adult children and reclaiming time for herself

[56:18] - Learning to ask for help and connect with others in vulnerable moments

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

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And so I told Steve what I had done, and Steve put his head down on the kitchen table and sobbed. And then he stood up and he started composing an email to the 12 partners he felt he should reach out to and tell them what was going on. And he kind of spent the day working on that email, and we took our dogs for a walk, and he while we were taking a walk, he looked at me and he said, thank you. Oh, which was it was so it was such a burden for both of us.

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Hello and welcome to season three of dementia discussions. I would really like to take a moment to thank the guests who were on this past year and to thank you the listener. I really could not do this show without you. And over the past couple of years, some of you have called me, so I am encouraging more of you pick up the phone and call me. I'm accessible, and I'm so eager to hear your story. I'm at 310-362-8232, or you can email me at dementia discussions.net so again, thank you, and welcome to season three. I'm grateful for you and so looking forward to another year of us being together.

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Hello and welcome to dementia discussions, the podcast for and about caregivers today on my show, I'm thrilled to have Christine here. Christine is part of the support group that I lead for Alzheimer's Los Angeles. And you know what?

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Without further ado, Christine, welcome to the show. It's great to have

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you. Thank you. I appreciate being invited.

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Oh yeah,

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absolutely. I'm so glad you volunteered. So you know, you haven't been coming to group that long, so I don't know your story as well as I know some of the other participants.

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So, you know, tell us a little bit about I know you're here to talk, obviously, to talk about your husband. And so tell us a little bit about you and Steve, and who Steve was before his diagnosis.

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Well, Steve and I met at summer debate camp when we were I was 16, he was 17. So, you know, we think about that song and the sound of music. And, you know, so we were very young when we met, and we stayed in touch and saw each other some in college, and then he went to law school near my college, and that was when we could see each other more often.

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And of course, this was back in the era when there was no email, there was no text,

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cell phones, and

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I think about how wild it was that I would write him a letter on a Monday that said, Well, I'll be at the train station on Friday at this time, and then that's all he knew. You know, there was no that text saying the train is late or anything. So we then got married when I was finished with college, and he was between his first and second year of law school, and then I started law school. And so when we looking back on it, we were we were babies, we were 22 and 23 when we got married. And I know people still do that, but it feels young when I think about it. So we've been married now 46 years, and we have two children.

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And I didn't like being a lawyer, so I became a teacher and but he was a lawyer, and he was Steve was brilliant, and he was so articulate and loved to make to do plan words, and was so good at it, and a competitive person, and he loved practicing law. He the moment he woke up in the morning, he was thinking about the case that he was working on. At that point he was a litigator, and in fact, how much he loved it became even more clear to me after he got dementia, because suddenly this thing that gave him such joy and really shaped his whole life, he didn't have it anymore, and I always felt like This was such a cruel turn to his life, because it's as if you know your star athlete and the very thing you're good at, suddenly you've lost your leg and you can't do it at all. So it's this was going after his absolute strengths, what made him happy, what he was proud of. So. That was really hard, especially when, in the beginning, when he was we were understanding the diagnosis and getting involved.

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But it's still hard. It's still hard for him.

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So was he practicing when you first started noticing, yeah,

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he was practicing law. And now the one thing that did, I think complicate a lot of it, was covid, because we were here, from my perspective, trapped in our house during covid and the law the law firm shut down, but he was working on line remotely, but he also was getting a little bit closer to retirement age, so he was not as busy. And one of the first things that started to happen in terms of looking back and realizing, ooh, something was going on, was he started not accepting assignments. He didn't want to do certain assignments.

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And it was being framed as well now that I'm getting close to retirement, this is the type of an assignment I don't want, so I that is one of the things that was going on and and did

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you know that in retrospect, like looking back or

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I just thought he was being picky, you know, and not picky, but he was saying there are things I like to do and things I don't like to do.

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Like, one thing he knew he didn't want to do anymore was sign on and have a two month trial in another city that. And he did that kind of thing all the time when he was practicing law, and it was very draining.

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He would be working 16 hour days for, you know, the two or three months leading up to the trial, then during the trial, and so that made sense, that saying I, I don't want to, don't

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want that kind of case, yeah, so you didn't think it didn't. Nothing got triggered

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in your mind.

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No, no, they didn't. And, you know, I actually, I looked back at so there was a point when I started to realize maybe something was wrong, and this was in this ring of 2022, and I sent, and I found, I looked back and found an email I sent to his doctor, and I said, you know, I know you and I can't talk about Steve because of privacy issues, but I want you to know this. And so the list was, Steve had started slurring his speech. He was having a harder time finding words like he would say, mud, Monday, money and that he so we had to get to the word he was forgetting things that it just didn't make sense that he was forgetting. We were in the middle of switching over to Medicare and having meetings about the process, and he didn't understand. He just couldn't understand what was being talked about. So clearly he was having trouble with complex thinking, and he also became paranoid in ways that was pretty noticeable,

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like, what, what sorts of things, well, like we were

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in the middle of switching over to Medicare, and so he got a call from, I guess, Social Security or Medicare and and because there was a question about we had applied for Medicare, and there was a question, and Steve told me he'd gotten this call and said, it's a scam. I'm never going to call them back. And I, I said, Wait a minute. Wait a minute. We're in the process of doing this. Let's, let's figure out if this is or isn't a scam.

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And and it wasn't they had a question about something. So anyway,

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unlike, totally unlike his usual personality, like for

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him, right?

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And I'm, I mean, Steve was, I mean, as many lawyers are very cautious, and certainly did recognized a scam, but this seemed to be his reaction. Just seemed to be over the top, and then other people in his firm were going back to the office, and he wasn't going back to the office, so even to go back for a couple of days or half a day here or there. And he kept saying, I'm gonna go back. I'm gonna go back. And he didn't go back. Then there was the time we were eating dinner. Our son and his then fiance were home, and we looked over and Steve had just fallen asleep at the dinner table, and he, at the time was taking Gabapentin and so, and he also has sleep apnea, so there was a lot of things contributing this. And at that point too, he was still drinking wine. So just all of these things in combination made me say, and actually what I did is I wrote.

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Them all down. And then I read them to my therapist, and she said, Oh, you need to talk to his doctor. This is just too many things. And then he first, he was diagnosed with mild cognitive impairment in June of 2022

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and and was he still? Was this at 65 was he 65 years old? Yeah, wow,

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65 and so definitely we were in shock. And of course, we went through the phase of thinking, Oh, he'll get off the gabapentin, he'll start using a CPAP machine, he'll stop drinking, and all will be well.

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And I do think some of that helped, for sure, but he was still declining. But he also, we were in a phase of not telling anyone, and including our children. For a number of months, not telling people to the law firm. He kept refusing work, not wanting to, you know, I think he, in his mind, thought, I can go on being a partner at this law firm, even though I'm not doing any work.

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And this was difficult, and I finally did something, looking back on I'm amazed that I did, which is, I went to another partner at the law firm. I went to his home, and this was someone who had been Steve had worked with throughout his career, and he was a friend of ours, and I told him what was going on, and he was so sweet about it. He he cried when he heard what was happening to Steve, and he said he knew something was happening, but he thought maybe he was depressed.

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And then a couple days later, I realized I have to tell Steve what I've done. I have to and so I told Steve what I had done, and Steve put his head down on the kitchen table and sobbed, and then he stood up and he started composing an email to the 12 partners he felt he should reach out to and tell about, tell them what was going on. And he kind of spent the day working on that email. And he had his friend, this man, that I gone to look at the email, and I told him, we we took our dogs for a walk. And he, while we were taking the walk, he looked at me, and he said, thank you.

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Oh, which was it was so it was such a burden for both of us just trying to deny and hide. So now, by then, I had already told the kids. This was after I had told our two adult children, but then he told the people at the law firm, and then we started down a path of trying to make a claim under his disability insurance, and that was a long, horrible saga, but yeah, and then eventually he resigned from the law firm. But that was hard.

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He didn't want to. He really because of all the things he's done in his life, being a partner at that law firm was absolutely the thing he was the most proud of and the most loved, and he was so good at it.

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And it's just it was such a loss for him. It was so hard to not be able to, you know, work part time, go in and see people, just be a part of that whole end of, end of your partnership process where you're you leave feeling kind of good about things

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absolutely, yeah, like winding down your career and doing it part time for a while,

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right, right, right? And being able to talk about your cases, because he would love to talk about he had some really fascinating cases where fascinating things happened and it they were great stories, and he can't tell the stories anymore, because, well, now it's reached the point where, in a in a day, I'm gonna guess, three or four times he will say one short complete a short complete sentence, maybe three or four times a day, for the most part, if he wants to say something. Well, number one, he kind of avoids saying anything. But if there's something he wants to say, he'll say one word. It's probably garbled. And first I have to figure out what that word is, and maybe there'll be contacts, maybe he'll point to something on the calendar, and I'll figure out what the word is. Then I have to figure out what he wants to. Say about it, and so I'll, I'll guess, and I can. And the good thing is he now is willing to kind of go through this process, because we went through a period of time where it just made him so frustrated and angry that he couldn't explain himself, that he'd just give up and walk away and be mad. And I felt like it was mad at me and but now he will kind of persist if he wants to say something through this process of trying to figure it out what he's saying.

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Yeah, this has to be so frustrating for a guy who is a litigator, right so articulates such command of the language,

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yeah, I think it was really cruel. It was a, this is a cruel disease, and for him, yeah, I mean, it's a whole it's sort of, I think it's inevitable. You maybe think, well, you know, I said cancer would have been better, because at least he would have been able to go on working. He would have had his mental capacity, probably, and this is just really took from him, and he has, he often still from time to time, but in the beginning, I think it was paramount his mind is that people think I'm stupid, and he, he feels stupid. And, you know, of course, we all say to him, no, no. That's, you know, this is the disease that it's making hard for you to speak and but that's how he feels. And so actually, we don't, we don't go to parties or anything like that. You know, he's pretty much just around the people he knows and feels comfortable with, and

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it sounds like he's declined, like his language has declined really quickly over how like well,

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so in that spring, he was sort of stumbling a little bit, and then so now it's three years we tried speech therapy, but it just made him too frustrated, because he couldn't they she the therapist would show him a picture in an apple, and he was supposed to say apple. And that's another thing, is sort of retrieving words. I watched him do a part of his neurocognitive testing, and one of the questions was, name all the animals that you can. And this was into 2023, and I thought to myself, Oh, he's going to do so great at this, because we had always gone to zoos. We love animals. We talk about them. We talked about them so much with the kids. And so the person who asked the question said, like, for example, so tell name as many animals as you can, like dog and cat. And Steve said, dog, cat, rat, mouse, and then he couldn't come up with anything more. And I just couldn't believe it. I really couldn't believe it. But I feel like what happens is it seems like he can't access the fact that there are other categories, there are zoo animals, there are barn animals, there are it's just the doors are closed and and so certainly he knows there are more animals.

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And I think at that point, if we showing him a picture of a hippo, he would have said hippo.

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Now I don't know if he would say hippo. He recognized it was an animal he knew, but whether he could come up with the word, probably not. So yeah, that has been the most pronounced. And what, and what's been especially difficult about it for me is, as you can imagine, since we met, we were debaters. We both went to law school, then we were a lawyer and a teacher. Our relationship was built around talking, talking, arguing, debating, discussing the news, discussing our children. We talked all the time, and now we don't talk, and it's I talk to him, and I have to talk slowly, and I have to look him in, the look at him to sort of figure out, does he? Is he hearing this? Does he? You know what I'm saying? And so I kind of get those cues. And so I can still tell stories and talk to him, but I do get sad and lonely, and I remember we go for dog walks, and I remember getting all sad because we used to talk on those dog walks. Well, in fact, being in a support group, I was in a support group where someone was talking about how his wife was.

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Probably close to not being able to walk around a block. And then I thought to myself, well, at least we're taking dog walks.

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We're taking dog walks. And so look at the trees. You know,

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suddenly you're grateful for what you can still do. Yeah, yes, and a huge void in your relationship. Oh, my goodness, what a huge loss, right? It is,

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it's, it's a huge loss. And you know, I think our best moments today are when I, I kind of tease them out about something and go back to the kind of verb I'm doing it in a way that, you know, I'm sort of being playful with him, and he still enjoys it, and we were both laughing, and so, but it's harder and harder to make that happen. And so, yeah, now he is right now, I would say, in a overall, pretty good place emotionally. I think one thing that helped with that is he went on an antidepressant. And that he went on an antidepressant when he had reached the point where probably four or five times a day he was tearing up and just feeling, and then maybe that's depressed. Yeah, it was just, it was just overwhelming for him. So I'm very glad he agreed to do that, and

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because clearly he felt, he could feel the lot he knew what was happening. Oh yes,

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he still does what's happening. He does. But yeah, he, I mean, he does, and he's, yeah, he's had to accept a lot of loss, yeah, yeah. But, and I also feel like, you know, I'm just, we're just at the beginning of this journey. I really we are, because we don't know, we never know, the future.

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But I certainly have met people.

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I was in one support group, and now I'm in your support group, and I've met many people where the journey was 10 or 10 or more years, and you don't know, but it feels like, well, it's like running a marathon, where you better not use you can't go out too fast. You better not use all your strength in the beginning, and

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so you, yeah, that's what we say. It's a marathon, not a sprint, yeah, yeah.

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But, and you don't know what's coming. I mean, in that different bumps in the road, that battle with the insurance company, now he's got heart problems and high blood pressure, and so we're that's kind of another hurdle we're going over in this process. The driving was another,

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definitely.

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Yeah, so tell us about that.

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Well, part of the reason he he didn't want to go through further testing in the very beginning, when he was kind of in that denial phase, is he didn't want to have a diagnosis of dementia, because he thought that meant he would lose his driver's license. And so when we finally did go through the process, I was very I was just sort of surprised, sort of what was the one neurologist said, Well, this will have to be reported. And his doctor said, Well, I'm not going to report you, but you really ought to be driving less.

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And so then it was all on me and to be the bad guy. And it is true, he could drive, and it he still had and has, in many ways good executive function. He can make himself scrambled eggs. He can get dressed and he when I was in the car with him, he was a pretty good driver. What really worried me was that he would get in an accident, and as his speech declined, someone would be talking to him, and it could be an accident that he was not at all responsible for, but I just that situation. And what finally got things figured out was I met a woman in that other support group I was in, and she was telling me about her experience, and she said, when he was diagnosed, her husband, the doctor said, Well, you know, we won't report you. We'll but she should really drive a little less. And she said to the doctors, Oh no, he's not driving, and I want you to report him. Because she, of course, focused on the risk, the liability issues. And I got off that telephone call with that woman, I went downstairs and I said, Steve, you're not driving anymore. It's just and. And once I had decided and, and he, I explained to him, and of course, his background. I said, if you get an accident and somebody's hurt, even though it's not.

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Fault of your own, and the insurance company learns that you have dementia, we could lose our house, right? And huge liability, yeah? You we cannot take this risk. We cannot, and

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that's so hard, yeah? But it actually,

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it was great that I didn't, I didn't say, you can drive one more week. I was like, it's over. And he it was hard. He came back to me after a few hours, and he said, well, because our daughter lives out here and she needed a car. And he said, okay, but she can't have my car.

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Can't get rid of my car that quickly. Yeah.

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And so I waited 24 hours, and then I said to him, that's great, but we're giving her your car. She needs a car. And so he accepted that. So you know the driving thing. And now he used to go off and do errands. He would go to the grocery store, and he would, you know, do various things. And of course, that's a big change too, when my daughter and I are the ones driving him to do everything, everything. Yes, and it's very funny, because when I'm driving him, he wants to tell me which way to go and where to park, and I still have my sense of direction, yeah, yeah. And I won't do it because I had in my mind, I had 40 years of him telling me what to do when I was driving. There's just no way I'm gonna let him tell me how to drive. But my daughter, she when she drives him, she lets him choose which way to go.

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And it's so sweet. And I admire her. And I wish, I really do, wish I was the kind of person

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who could do that. But I am not. I am that's okay. He wants to exert control over something, one last thing, possibly, yeah, has

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Yes, oh, of course. And that's why I should be like, Oh, of course, honey, you don't want to go out of the way, yeah? Because if I know, there's some things where, if I do that, I'll, I'll explode in some other way. You know, in that it is, I like to think I've, I'm becoming more patient, but wow, that is certainly, for me, the hardest thing is staying patient. And I think

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that's what caregivers feel so guilty about, right? It's like losing patience. And then you come into support group and you hear how everyone's lost their patience, yeah. And it just like it's such, right? It just makes you feel like you're not alone in that awful sense of guilt.

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Like, no, it's very true, and I did think I remember one of the interesting moments, though, was having some kind of an argument with Steve about something. This was pretty early on, and kind of getting angry at him, and then having a discussion in support group about you don't go back four hours later and talk about it, and talk through it, and talk about how you can prevent this from happening, and talk about my feelings and his feelings.

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And Steve and I did five years of marital therapy, and of course, that's what we learned.

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You sit down, you share your feelings, you try to understand.

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And now I just kind of have to laugh, and it's almost a weight in that there's no point in doing that anymore.

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Four hours, he's forgotten. He's long forgotten, yes

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and argument, yeah. And so I can talk to my daughter about it, and we can maybe brainstorm about how to prevent that type of thing from happening again. And she's very supportive, because she gets frustrated with him too. She was in a farmer's Marc. We were in a farmer's market the other day, and she didn't have any cash, and she said to him, will you buy me some strawberries? And he kept saying no, and she didn't understand why he wouldn't buy her strawberries. And we kind of decided he must have thought she was saying, Do you want strawberries? But she felt like suddenly she was the little girl, and her father was saying, No, I won't buy you strawberries.

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So she looked at him like, Dad, yeah. What do you mean?

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Yeah, but, and so you do have to take these chances to just laugh about things,

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you know. Yeah, would it be easier if you were, like, if he's, you know, you were talking about kind of the silence, you know, I'm sure, do you guys still go out for dinner and that sort of stuff, like, you don't

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know? We don't go out for dinner. And other than with people, we go out. And Steve actually doesn't like going out. One thing we realized when he was diagnosed is and it became to became clear that he was hearing impaired. And so now you're here, where's hearing aids, and it is true that hearing aids, they're not, they're they're kind of rough.

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In a restaurant, maybe there's ambient noise behind you, and he's not very happy. And so I do go out to dinner myself with friends and lunch with friends, and sometimes we go out to restaurants, but not very much, much that sounds like you're doing

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what I was just about to suggest, which is going out with other people. So he's not on the spot right to talk, yeah, which, yeah, do? He knows he can't do it. Yeah, yes,

00:30:45.700 --> 00:32:04.859
but, but what happens too is, when we're out with other people, something will come up, and he'll maybe say a word to me, and he's prompting me to tell a story or talk about something that he would have but he wants me to tell that story. And yeah, so I and I'm, I'm a talker, so fine by me and I, and I do like to be around other people, so I'm happy to go out with him, but he would rather be at home. Sure he would, yeah. And we traveled over the summer. We went to Spain and Portugal because my son got married in Portugal over the summer, and congratulations, yeah, it was a very happy, wonderful event. And we traveled with my daughter and her husband, but it was disorienting for him. It was definitely disorienting for him. And the sleep issues, the, you know, the jet lag, the what are we doing next? Issues, I realized, looking back on it, I should have made a daily schedule for him. I should have said, here's where we are. And then once we figured out, okay, this is what we're doing tomorrow morning.

00:32:04.980 --> 00:32:14.099
Because he, of course, as a lawyer, his calendars, oh my God, His calendars were Yes.

00:32:09.420 --> 00:32:27.500
What he Well, yes. And he still has a calendar where he writes a lot of things down, and then I have a calendar, and he's looks at my calendar and but I should have helped him, but I think the reality is, travel is hard. To travel is

00:32:27.500 --> 00:32:33.440
hard, yeah, travel is hard, absolutely disorienting, so confusing.

00:32:29.480 --> 00:32:36.619
Yeah, I don't know if it would have helped even to have a calendar. So don't beat yourself up about that.

00:32:36.980 --> 00:33:16.799
No, but looking back on it, I did think, Oh, well, that that might have helped. And in fact, this past weekend, Steve went with our daughter over to Phoenix to see a Indigo Girls, Melissa Etheridge concert. Oh my gosh, how great. Yes. And Laura, did I recommend it? She made a little schedule of the days, here's what we're doing, and gave it to him. And yes, I got a text from her this morning. So the Indigo Girls went on first, and then Melissa Etheridge went on. And about, I think, halfway through Melissa Etheridge singing, Laura said, why don't we leave? So it will be easier to get a Uber.

00:33:16.799 --> 00:33:50.259
And Steve did not want to leave, and he said to her, he pointed to her t shirt. She had an Indigo Girls t shirt on. He said, I want to stay and see them. And she just wouldn't believe that. He didn't know he'd already seen Yeah, so that kind of thing, and it does feel like that's the kind of thing that happens. And I think it happens to everybody going through this where you Yes, you know they won't remember certain things, but this would be something where you'd think they'd Remember,

00:33:51.940 --> 00:33:56.559
no, didn't remember. That must have been hard for her.

00:33:57.640 --> 00:34:00.700
Yes, in the moment it was, it was hard for her.

00:34:01.059 --> 00:34:07.079
That's amazing that she took him away for the weekend. Like, how did they negotiate the whole hotel thing where they got

00:34:07.079 --> 00:34:18.239
an Airbnb, uh huh, so that they could all be together and and Laura's husband is there too. Oh, so he helped out with Steve too. It was, it was great. He assigned himself.

00:34:18.239 --> 00:34:24.380
He said, My responsibility, one of them is going to be dehydration. I'm going to make sure Steve drinks enough water.

00:34:26.360 --> 00:34:32.059
Okay? And it sounds like it went

00:34:32.059 --> 00:34:40.480
really well, so Steve doesn't need help, like dressing or bathroom in the bathroom, showering and none of that. Oh, good, okay, which is

00:34:40.480 --> 00:34:47.500
really good, but, you know, I I'm gonna be surprised if a year from now, that's true, but it's true

00:34:48.699 --> 00:34:51.278
now. So you've had the weekend to yourself.

00:34:51.398 --> 00:35:02.579
Well, except I have had four dogs, because I have two and my daughter has two. So I've luckily, nobody's a puppy, and they're good dogs.

00:34:58.539 --> 00:35:17.159
And they all get along but, but I have been able to really relax and take lots of dog walks and watch TV and, yeah, sleep as late as I could convince the dogs to sleep

00:35:18.659 --> 00:35:20.659
and see people.

00:35:18.659 --> 00:35:21.079
Have you been out seeing friends.

00:35:21.139 --> 00:35:28.820
I did have lunch with a friend, and then yesterday went to baby shower.

00:35:23.539 --> 00:36:38.599
And yes, but it was really it's been very good for me, because one of the things that has been very hard for me is, although I am outgoing and I love to go out with people, I also need alone time. And Steve, because he worked so much until covid, was out of the house, traveled. I got a lot of alone time. I got enough alone time to be sick of my alone time. And so first covid meant we were together 24/7, and then he didn't go back to work, and he's become more and more of a homebody. Doesn't want to go out, you know, doesn't in my mind. I was like, wow, if he could just go out and take 45 minute walk every day with the dogs. And I'd say, why don't you take the dogs for a walk? And he'd go once, and then he wouldn't go out until three or four weeks later, when I said it again. So he is really always and of course, once he couldn't drive, especially he is here, and I really had to adjust to that. So when, for example, this weekend, came up as a possibility, one possibility, wouldn't I would go with them.

00:36:38.599 --> 00:36:41.619
But I said, Oh no, staying at home. You're alone

00:36:41.619 --> 00:36:44.980
time. Yeah, yeah. So how do you do that now?

00:36:45.400 --> 00:36:50.980
Like, do you go on walks by yourself? Like, can you leave Steve home alone and get you alone time Steve?

00:36:51.039 --> 00:37:29.059
Leave Steve home alone and that too. I'm wondering how long I can do that, but for now, I do think he's safe. And yeah, I go out and get exercise, I go out and have lunch with friends, and I wouldn't leave him alone at night. I think the thing that I would most worry about with him would be if something happened, or someone came to the door that he didn't know, or something, that's where I think he might get confused or something that he wouldn't when I say something happened, like, if there was a fire in the house, right? He would know to call nine one rather,

00:37:29.239 --> 00:37:35.059
I don't know, you can ask him, well, yeah, what happened in an emergency?

00:37:35.539 --> 00:37:41.440
Yeah, I think he'd be more likely to go outside and go to a neighbor or something, right, which

00:37:42.519 --> 00:37:45.340
is fine, yeah, yeah, yeah,

00:37:45.699 --> 00:37:52.420
but you're right. I could ask him, do you know if there was a call here, what? What would you do? Yeah,

00:37:52.659 --> 00:38:04.019
yeah, that's good idea. Can he if, when he does take the dogs for a walk, could does he know his way back to the house? So far he has okay. He hasn't gotten lost in the neighborhood

00:38:04.139 --> 00:38:20.360
so far, although he tends to choose to take our dog, who's older and a little lamer, and is only gonna go a little bit so and, yeah, he certainly still knows the way to the grocery store, because he wants to tell me which way

00:38:20.360 --> 00:38:23.000
to go, right.

00:38:20.360 --> 00:38:23.539
That's correct. It's the right way to go,

00:38:23.599 --> 00:39:16.199
yes, but, oh, something did happen recently where someone was at the house delivering furniture, and I propped open the garage door in front of the laundry room door because they were bringing furniture in. And Steve took me downstairs to that floor and pulled me aside, and he said, Where is the laundry room? And so it made me realize he, if things are changed, he's confused. And I mean, I was, I was really surprised, because it's, you know, you come down the stairs, you turn right, right, it's right there. And but because something was changed, he just didn't see it. He didn't know where it was, yeah, yeah, yeah. So, yeah, that kind

00:39:17.280 --> 00:39:25.579
of thing. So you seem like, surprisingly, in such good spirits. How do you like?

00:39:22.099 --> 00:39:25.579
How do you keep

00:39:26.300 --> 00:40:55.300
well, believe me, I have very hard days when I am really feeling sorry for myself or grumpy or and it'll, it'll, you know, go on for a few days. And I know the things that are more likely to help. One is exercise. Another is talking to friends. I love listening to music. I paint and I my garage is is a studio for me, and I go out and I paint and listen to music, and that helps too. And seeing. My friends, helps, but it is, it is hard, and I think one of the things I really struggle with is thinking about what it'll be like if it does go on for 10 years and late stage dementia doesn't sounds just awful. And yeah, that whole looking into the future, you looking into the future, and then also, like, how long will this go on? How long will this go on? And then I had this thought the other day. I said I was in one of my feelings, sorry for myself, moods. And I said, Oh my god, Laura is going to go through 10 years of this with Steve, and then she'll probably go through 10 years of it with me. So then I said, Oh my god, Laura is the one I feel sorry for, and my son Jackson too, because he'll be in the middle of it too.

00:40:56.860 --> 00:41:36.139
So you know, who knows, who knows is right, right? And I know thinking about it's better to think about today and getting through the day. But that doesn't mean I can stop myself from not thinking about those things, especially when I hear stories from other like if I go to a one of the support group meetings. And as much as I want to hear about it, I think it's helpful to hear about it and think about it. There are stories I hear where I think, Oh, I can't I could never do it.

00:41:30.380 --> 00:42:00.480
I could never, ever do it. And yeah, that that I do, definitely have times where I feel like it's like a ball and chain. I just feel like I'm trapped. I have found I'm a reader, so I do find, along with support groups and friends, that I've read a number of books that I think have given me good things to think about

00:42:00.900 --> 00:42:02.099
like, which ones?

00:42:02.820 --> 00:44:31.820
Well, well, like, I one book I've read. I've read it twice now because I thought it was so interesting and good. It's called travelers to unimaginable lands, huh, by Dasha Kipper. And what this talks about is that for a caretaker, you keep treating it's inevitable that you're going to keep treating the person who you're taking care of the way you always have in that you're going to, you're going to reason with them, you're gonna and how disorienting it is for the caretaker to suddenly be in a world where things are changing in terms of what used to work and what no longer works. I mean, in a sense, I'd almost compare it to Steve's experience of the door, the laundry room door, not being there, it's this, I'm going through the same experience where I think something is going to happen, or I'm going to something is going to lead to a certain result. And so it's so disorienting, because when you think about it, when you grow up, you learn about the world, and you learn about people, and they behave a certain way. And now all of that is turned on its head, and I just think that was a really helpful for me to think about how disorienting this is, and will continue to be another one. I thought was really good was Pauline boss loving someone who has dementia, and what she talks about is something called ambiguous loss, the idea that and it's it's so interesting how Steve is gone. He's already gone, right? But he's here. And that, when I listen to caretakers, it's interesting how they often flip back and forth between past tense and present tense when they talk about the person they're caring for, and the term she uses as ambiguous loss. And I realized with myself how again, disorienting it is for me to have so much of Steve gone, but he's still here. And so I grieve his loss. I grieve what's gone, but it's not

00:44:32.539 --> 00:44:34.159
but he hasn't died. He

00:44:34.159 --> 00:44:37.340
hasn't died.

00:44:34.159 --> 00:45:11.219
Yeah, right, yeah. My daughter said to me the other day, she said, Well, I really liked the old Steve. I like the new Steve too, but I really miss the old Steve. Oh yeah. And you do too, yeah. Oh, I do. I do, yeah. It is, it's, it's a loss. But it's also that the concept, one of the things she talks about. Out in this book is that, I think she says for Western people, there's this sense of, we live kind of a binary world. You're either here or you're not here.

00:45:11.340 --> 00:45:29.719
And we don't want this transition stuff. If something's happening, it needs to be happening and then over. And this is not over for a long Yeah? This really blows up that concept of and I do. I definitely have a feeling sometimes I just want this to be over.

00:45:30.139 --> 00:45:36.500
But you know, you and everyone else in the support group and people feel so guilty about saying that, right?

00:45:36.500 --> 00:45:52.360
Yes, yes. That is true. Everyone thinks that. How long is this going to go on? Yeah, yeah, it is. And for everyone, it's different, right? You never know, you never know, you never know. I know, I but, but you know, I have to be well.

00:45:52.358 --> 00:46:31.818
I need to be prepared. I mean it. And one reason I need to be prepared. I need to be financially prepared for this to go on for a long time. And that was also a big struggle for me, was suddenly to be responsible for all of our finances, and at a time when suddenly Steve wasn't making any more money, and just the weight of that, and worrying about it and taking responsibility. We had kind of divided our responsibility in terms of paying for things and getting the taxes ready and all that.

00:46:27.739 --> 00:46:36.139
And it was overwhelming as he was going through this diagnosis to also suddenly be responsible.

00:46:36.139 --> 00:46:57.039
And that's actually one thing my son is helping with luck, is even though he's on the other side of the country, he's really stepped up. And I said to him at one point, okay, I'm willing to tell you everything about our finances, but I don't want to do it if it's going to make you worry. And he said, it will make me worry if you don't tell

00:46:57.159 --> 00:46:59.500
me about the finances. Wow,

00:46:59.920 --> 00:47:16.800
yeah. So he has, you know, he helps me out with it. And it's actually, I, it's fun to talk to him about it. It's because it's actually kind of interesting. Gives you something to Yeah, something to talk yeah, something in common.

00:47:16.800 --> 00:47:29.239
And he's probably wanting to preserve the finances as much as you Yeah. Well, I certainly don't want to ever burden them, but Right? Well, it would be even nicer is if I could give them something at the end.

00:47:29.539 --> 00:47:53.559
Sure, absolutely, yeah. These are all just such big, heavy things that go issues, topics that go along with all of this. It's true because you think about, like, getting help in the home, and how expensive that is, and when do you start that? And right, it's a big plunge in so many respects. And so you try to hold off like, Okay, we don't need that yet. We don't need that yet.

00:47:53.619 --> 00:48:12.719
Yes, and I mean, I said to myself yesterday, okay, if I come to a point where I'm no longer getting exercise, that will be the point where I'm getting help, because I must get exercise. And say, if I reach the point where I can't go out and have lunch with my friends,

00:48:13.679 --> 00:48:21.019
I that's good that you know that line in the sand, yeah, right, that's your limitation. Yes, on to that.

00:48:21.019 --> 00:48:38.000
Yeah, yes, yes. In fact, I listened to Steve, who's in our support group, his discussion with you, where he talked about realizing he needed an hour a day for exercise. And I thought, and even that seems like such a small little piece of sand, but he's holding on to it, and I admire him for that.

00:48:39.019 --> 00:48:42.579
Yeah, I know absolutely, absolutely, yeah.

00:48:42.639 --> 00:48:49.539
And maybe that's when you start to look into like a daycare program. I know that's what people say. You'd never do it,

00:48:49.599 --> 00:48:59.559
although. And in fact, I think, you know, I live in Pasadena, and there's not a lot over here. There's way more on the west side. I mean, do you know of anything?

00:48:59.559 --> 00:49:14.039
I don't know we could talk about, well, you know, like we could after this, we can talk about, yes, but yeah, there is, there is a daycare, isn't it's called, I think, caps. I'm not as familiar with programs out there, but there are other care managers, they are, so I could certainly ask them,

00:49:14.039 --> 00:49:35.599
yeah, because, and I guess, well, I have talked to people who've struggled to find things over here, and I think it's more likely that we would have someone in the home, and then I am also someone who knows that it may be that at some point he has to go into a facility. And I have not made a promise to myself or anyone else that that will never happen.

00:49:36.079 --> 00:49:45.099
We'll we'll just have to see what happens. You know, because we don't know what it's going to be like for him. We don't

00:49:45.099 --> 00:49:53.320
right, that's right. So good that you're open to that possibility, yeah, whether it happens or not,

00:49:53.320 --> 00:50:15.900
whether I think I have to be open to all those possibilities. And actually, you know, I think about. About, as I think about the possibility of him or me being in staying home with one person, or being in some kind of a memory care unit, there's other people around in a memory care unit, right?

00:50:16.079 --> 00:50:19.500
It's not socialization is so important, right?

00:50:19.619 --> 00:50:42.760
It's not one person taking care of you, which, if I were going to be a caretaker, I'd much rather be caretaking, where there's other caretakers around that I can rely on and talk to, and then being just an individual person in a home, but it obviously I'd have to do my research and see what's out there and

00:50:42.940 --> 00:50:45.460
which you will.

00:50:42.940 --> 00:51:07.320
And you can just see, like I can see on your face, the relief that that's a possibility, that when you talk about being trapped, right, there are options so you don't have to feel trapped with perhaps a 1012, year course of, you know, whatever is down the road, however long it is, like you might not be the person taking care of him for that long,

00:51:07.380 --> 00:51:11.639
it's true.

00:51:07.380 --> 00:51:51.280
It's true, and i That's why I feel like I have to stay open to that. And maybe one thing also that guides me is that my mother had dementia for the last maybe three or four years of her life, and ended up in a memory, and that's where she had to be. And was it the worst thing? It wasn't. It wasn't. It was it was sad. It was no but it was, it really was the best thing for her, and I think it would, it wouldn't have, I don't think it would have been good for her to have moved in with me or moved in with my sister. I think that would have not been good, right?

00:51:51.460 --> 00:51:54.400
Yeah, yeah.

00:51:51.460 --> 00:52:15.840
People come to this in their own process, right? Yes, yeah. So, you know, we've talked about, oh gosh. We've talked about a lot of things, but you know, is there, is there anything that's come out of this these past few years that has been, I don't know if it's possible something good. Has anything good come out of this?

00:52:16.320 --> 00:52:55.000
Well, I would say it's been so great to have my daughter and her husband move back and they live 10 minutes away from us, and my daughter is she makes me laugh. She laughs with me. We We have and having Laura around to help with my husband, helped with this journey, and her husband and Laura's husband too, he's He's great. He's a wonderful chef, and I find myself saying I don't want to cook dinner, and he comes and cooks us great dinners, and that is one thing.

00:52:55.300 --> 00:53:23.059
And I'm really grateful for the help that my son has given me, as I talked about with the with financial issues and just to know with both of my kids how supportive there are, Steve ended up in hospital about six weeks ago. It was his heart. It was a heart issue. And I sat there in the hospital where they hadn't quite figured out what's going on with Steve, thinking, do I tell them? Do I tell them?

00:53:18.480 --> 00:54:10.260
And I texted them. Finally, I said, Yes, you have to tell them. And half an hour later, Laura was actually in Wisconsin at this point, Jackson and his wife at that point, were across the country. Half an hour later, they they said, We're on the planes tomorrow. We're waking up and we're going to be on the plane. And I said, Oh no, no, it'll probably be fine. You know, don't I know how busy you are, and I especially because it was unclear exactly what was going on. They said, Nope, we're coming. So that I just felt so taken care of, and I feel very taken care of by my friends, so that appreciating all that is been really important for me.

00:54:10.980 --> 00:54:22.280
And I think another silver lining might be that I'm a little more ready to say to myself, I don't want to do that.

00:54:22.340 --> 00:54:41.619
Whatever that happens to be, I think I'm my time is more precious, and it's partly because I spend a lot of time taking care of Steve, but it's also partly, I think the reality is, yes, Steve was young when he was diagnosed, but I am in the phrase that comes to mind is the autumn of my life,

00:54:42.579 --> 00:54:45.460
right? You're young too. Yeah, to

00:54:45.460 --> 00:54:56.739
appreciate, you know what I need to appreciate, what time I do have and do the things I want to do, right?

00:54:56.920 --> 00:55:02.219
Absolutely, do the things you want to do and be. And you're clear about the things you don't want to do

00:55:02.760 --> 00:55:16.800
it more so more so, no, I don't. I don't want to go to this event, or I didn't want to belong to the gym anymore and stare at those television sets, so I take walks.

00:55:19.079 --> 00:55:29.300
But that's great and right, even if you feel guilty about whatever it is, doing it anyway, making the decision and going with it.

00:55:24.619 --> 00:55:40.039
Yeah, yeah. And it's okay to say, you know, I don't want to take care of Steve when this happens, right? Whatever it is, whatever the issue might be, and oftentimes it's what incontinence or

00:55:40.039 --> 00:55:54.639
Well, it is true. I went through a period of time where I said to myself, I will not ever change this diaper. I will not ever change this diaper. And for that moment, I think it helped me like say, Okay, you have you have a line, you have a line.

00:55:50.500 --> 00:56:12.900
But now I say to myself, Well, that may happen. The question is, it will be at that point, well, is there a better solution than the one I found. I mean, you only have a certain number of choices in any situation. And so, yeah, so you'll see, you'll see, yeah, yeah. I will see Yeah.

00:56:12.960 --> 00:56:18.960
And sometimes those lines creep up on you, and you don't even realize it, but you're doing what you said you never would do.

00:56:18.960 --> 00:56:56.980
I recognize that it's it's true, it's true, but yeah, and, and I think this is not a silver lining, but I would say a challenge I've realized for myself is when I'm feeling down, I've got to learn to call up a friend, my sister someone and say, I just have to talk to somebody, because I schedule my events with them. I see them, but reaching out and exposing my vulnerability is not easy for me, and that would be

00:56:58.599 --> 00:57:04.440
a good thing for me to do. Absolutely. I'm sure they would feel closer to you.

00:57:01.139 --> 00:57:04.440
Yeah, right, you

00:57:04.440 --> 00:57:21.500
would feel closer. I always say, call anytime. Call anytime. But you know when I guess that's always maybe that has to do with me feeling like I should take care of myself. And you know, I think back on the times my friends have called and said, I need you to talk to me exactly. I was

00:57:21.500 --> 00:57:31.519
just gonna say that if it's the other way around, you'd welcome a friend calling you or your sister calling you, right? Yes, yes, yes. I'm sure they would welcome the call from you. Yeah, no,

00:57:31.699 --> 00:57:33.079
they would.

00:57:31.699 --> 00:57:34.219
I'm almost getting teary thinking about it.

00:57:36.199 --> 00:57:47.800
Oh, Christine, this has been delightful. I so appreciate you coming and talking with me, sharing your story, and I hope that you'd feel comfortable coming back.

00:57:47.800 --> 00:57:54.460
You know, along the way, Steve is young, you're both young, and so I hope you feel comfortable kind of coming back and telling us

00:57:54.460 --> 00:58:04.320
sure if, over time, yes, I who knows the experiences I will have had when I'm three quarters of the way through the marathon, right?

00:58:04.559 --> 00:58:11.880
Yeah, yeah, I look forward to hearing them Yes. Well, thank you. Thank you.

00:58:07.320 --> 00:58:11.880
Yeah, no. Thank you honestly.

00:58:11.880 --> 00:58:12.480
Thank you.

00:58:16.619 --> 00:58:59.800
Thank you for joining us today on another episode of dementia discussions. If you're a caregiver or know someone who's a caregiver that would like to be a guest on the show, please call me at 310-362-8232, or go to dementia discussions.net, forward, slash contact, and let me know. I would love to have 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.

00:58:55.900 --> 00:59:07.139
And please share this podcast with someone you know, if you think it may help, thanks again for listening, and I'll See you here again next time on dementia discussions. You

When Words Fade: Christine's Story of Love, Loss, and Adaptation

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