Love, Guilt, and the Limits of Caregiving

Denise Stiel: 0:00

The other day after after dinner, I make sure I take take him out to dinner because he calls where he is prison. So you know we go out to dinner and then we sit at Bask and Robins, and he says, "Okay, will you get me a rocky road? And I said, "Well, you know you're supposed to try and do these things yourself. So he got out of the car. He walks with a cane, and then I was feeling like, "Oh my God! I sent him into Baskin Robbins. What did I do? And you could see the man that was watching him. I mean, he's he's he's old and he's fading. And so the man that was watching him try an order was like so grateful when I came in, you know. I thought that was not really a smart thing to let him go into Baskin Robinson self. So,

Barbara Hament: 0:55

hello and welcome to season four 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 to 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 dementiadiscussions.net. So again, thank you. I'm grateful for you, and so looking forward to another year of us being together. Hello and welcome to Dementia Discussions, the podcast for and about caregivers. Today on the show, I am so happy to have Denise Steele. I met Denise through work. Denise asked me to go see her husband, which I did, and since then, about a month ago or so, I suggested that she come to a support group, which she did, and so I've had the pleasure of seeing Denise now in support group, and Denise, you graciously agreed to come on the show, and I'm so thrilled. Thank you for being here. Oh, it's my pleasure.

Denise Stiel: 2:30

Thank you for inviting me.

Barbara Hament: 2:32

Of course. So, like I said, I I did meet Norman, and why don't you tell us? Since I don't know your husband that well, although I did get a good sense of him. Why don't you tell us a little bit about Norman before all this started?

Denise Stiel: 2:49

Before all this started, well, he's always been active. You know, he likes to run and go and have fun and interact with people. He's extremely bright, so took the bar, graduated top of his class, passed the first time. He's used to being accomplished. You know, he actually, I think he graduated high school at 16, and then he went to UCLA, and so he graduated UCLA at 19. So, you know, he's he's very bright. I can't say in his life he's organized, dealing with some ADD too, but he's been able to manage because he's such a high achiever. So dearly loves his children and his grandchildren. Met him when I was 16. We've been married 61 years, so it's it's a long haul. I I think about what one of my friends said. You know, once he retired, she says her her friend said, you know, we were married till death do us part, not for breakfast, lunch, and dinner. And I think that applies here. Like, you know, why are we doing this?

Barbara Hament: 4:00

Yeah, because now you've gone to a hard part,

Denise Stiel: 4:04

way hard,

Barbara Hament: 4:05

way hard,

Denise Stiel: 4:06

way hard.

Barbara Hament: 4:07

Yeah, and you've had hard parts. You talked about in group. You've had other hard parts in your relationship. Yeah, as we all do, right, in our marriage. But go ahead.

Denise Stiel: 4:16

One years is, you know, it's not always a straight road, but you know, we've gotten through things. I think both of us, the the love that we have for our children is really what has you know really been a huge bond for us. You know, just love our family and love being with them, and so that's just you know where we're focused on family things, so that's nice, really nice.

Barbara Hament: 4:44

Yeah, it's carried you through.

Denise Stiel: 4:46

Yeah.

Barbara Hament: 4:46

So when was Norman diagnosed?

Denise Stiel: 4:50

Ha! What a question. You know, I felt like he he retired before. Covid, and you know this in and of itself was an adjustment because you know he he we had kind of very independent lives. They were parallel, but they were and things just didn't seem right to me. And I remember saying he was confused, and I remember my daughter-in-law is a social worker, and I said, you know, I don't know what to do. And she says, well, why don't you go to a geriatric doctor because you know they have more services. So we went to a geriatric doctor at UCLA, and she said he has Lewy body disease. You know, she sent him for a PET scan. Subsequently, we saw a neurologist from Cedars who said you can't diagnose Lewy body through a PET scan. So, was he diagnosed? I don't know. The whole path has been very frustrating. I I actually had him tested for drill psychology, you know, to see if something would show up on that, and you know his ADD showed up a lot. So you know he just not following through. What my kids and I think is that he is like himself, but on steroids, you know, and so I don't even know if he was diagnosed. I know that when I asked his primary care doctor, I said I don't know what to do, and he said I've done this a lot of times. So he kind of dismissed me when the UCLA doctor, the geriatric doctor, I said I don't know what to do, and she says, "Oh, email me through the portal. So I did, and of course she never got back, and I got dismissed from, you know, his primary care doctor. And then the new neurologist said he had mild cognitive impairment, but you know she did the test like, you know, can you remember Church Velvet Red Banana? And you know I can't pass those. I have learning disabilities, but you know he he does great on those things. He's smart, but he's he has a hard time navigating life. So I still don't know when he when he finally when he had two surgeries a year ago. August he fell four times, and then after the fourth time, I couldn't wake him up. So we, of course, went to the hospital, and he wound up having blood on his brain, and they had to do brain surgery. And so, was he worse after that? Of course. And and then this last April, he had a gastrointestinal problem, and so when he went to the nursing home after that, they put down dementia, and they're the first ones to put him on dementia medicine. So, when was he diagnosed? I I can't tell you. I mean, I I I don't know, and I don't, and I think I got Lousy support, absolutely lousy support. Which is why I reached out to you because you know I'm I'm like running around in circles here trying to figure things out. You know, when I had my first son, who's almost 60, you know, I could read get up and read in the middle of the night, baby and child care by doctor. I think his name's Spot, but there's, I didn't even know what I was dealing with, so I couldn't even read a book because I. So I don't really know when he was

Barbara Hament: 8:30

diagnosed. I know that with these illnesses that he's had two major things, really major. I think he has healed physically, but I think that they it takes something out of you to go through such big events. And so he actually is starting to look better recently from the april 8 incident. But you know, I don't know. I think he's still very confused. Right. So it sounds like, and your you know your course of trying to get diagnosed is not you're not alone in that, right? Really? No, not at all. A lot of people struggle with getting a diagnosis. Yeah, no, it's sad exactly, and especially since he's so smart.

Denise Stiel: 9:15

Yeah,

Barbara Hament: 9:15

he's so smart. So he really tests well. I bet he

Denise Stiel: 9:19

does test well. He was just tested again from the assisted living. He's going into a lot. You know, he nails that stuff. But you know, where are his shoes? Where are his hearing aids? Can you put my belt through the loop? What about these shoes? Where are we going? Oh, this is where we're going. Where are we going again? Okay, we're and when are we? When are we going? And all of that stuff, you know, he's out exactly.

Barbara Hament: 9:43

So that's what you don't see in a doctor's office in a 20-minute exam, right? Yeah, the repeated questions, the short-term memory loss. So it's he's especially after meeting him. I know exactly what you're saying. He's so smart.

Denise Stiel: 10:00

He

Barbara Hament: 10:00

can, yeah. He can really formulate an argument.

Denise Stiel: 10:05

I'll say,

Barbara Hament: 10:06

yeah, and and he's very convincing. So

Denise Stiel: 10:10

yeah, that's that's really true.

Barbara Hament: 10:12

Yeah. Oh, yeah.

Denise Stiel: 10:14

Unless you don't know that, you know, he's just trying to get his way. Every time, every time we're together, I leave shaking, working me.

Barbara Hament: 10:25

I'm sorry.

Denise Stiel: 10:26

Yeah.

Barbara Hament: 10:27

So okay. So we don't know what his diagnosis, but we know he has some sort of memory loss. Clearly. Yeah. This is not just ADD

Denise Stiel: 10:36

and functional. You know, it's. I think as I go through this, and you know, we're applying for long-term healthcare and stuff, and how they, and I mean, they've clearly evaluated him now the second time. But you know, the activities of daily living is where he falls short, you know, and follow through, and you know,

Barbara Hament: 10:55

so you're trying to trigger a long-term care insurance policy. So you're saying, yeah,

Denise Stiel: 10:59

but but he definitely, you know, he as much as he can do other things, you know, he scores zero on those things. You know, the activities of daily living.

Barbara Hament: 11:10

Yeah, so that's where it's really important.

Just a side note: 11:11

that's where it's really important for you to tell them that because he'll test well on their paper pencil test, but it's up to you to to bring up those difficulties he's having with activities of daily living.

Denise Stiel: 11:25

They approved him when he was in the nursing home, and I was there with the. They send out a nurse, you know, a freelance nurse. I don't know if that's what you call her, but

Barbara Hament: 11:35

contracted.

Denise Stiel: 11:36

Yeah, and so she definitely. There was no doubt that you know he he did not pass those ADLs, and they last Sunday a week ago tomorrow they sent out another one because, you know, we're moving him, and so I guess they and

Barbara Hament: 11:51

so yeah. So hold that though, hold that thought for a sec. So let's go back just a little bit. Okay, so he was living at home, and clearly he was struggling, and then he had these medical issues,

Denise Stiel: 12:01

yes,

Barbara Hament: 12:02

and that after that second, because I believe this is right, after that second, the GI problem that landed him in April back in the hospital. That's when he transferred. He was discharged to a boarding care. Is that right?

Denise Stiel: 12:16

A nursing home. A

Barbara Hament: 12:17

nursing home, and then so rehab.

Denise Stiel: 12:19

And I did not

Barbara Hament: 12:20

a boarding care. I

Denise Stiel: 12:20

had three heart procedures last year. I did not. I do not feel capable of taking care of him, which is making me feel so guilty. But you know, we found a actually through Chat GPT a wonderful boarding care, and it's it's run by two nurses. And the reason I liked it, it was close enough to my home where I could be there in 10 minutes, and he's and I've they don't provide activities at all, but I was able to keep a lot of his life going and his outside activities because it was so close to our home, and I was able to see him, you know, almost every day of the week. Although I took off yesterday, which was shocking. I just was too tired.

Barbara Hament: 13:03

Good for you.

Denise Stiel: 13:04

So then he went there, and you know, I still don't. I mean, that's not the the right place for him. So he's going to. I think it's a really nice assisted living that will meet a lot of his needs. He's going to have physical therapy, occupational therapy, speech therapy to deal with the cognitions. He'll be in a program to build his memory skills. You know,

Barbara Hament: 13:28

he's moving from that small place to a bigger place. Yes,

Denise Stiel: 13:32

with a lot of guilt that I have.

Barbara Hament: 13:34

Yeah. So go back and let's talk about that. You said you had a lot of guilt not bringing him home, not being able to take him home after that rehab. So tell us about that.

Denise Stiel: 13:46

He's too much physically for me to take care. So this is the way it is. I'm hoping it's going to be a fabulous, fabulous experience. It looks like a five star hotel, and

Barbara Hament: 13:57

so I'm just I'm going to circle back to that guilt again because he, like you've said in group, and even me, when I went to see him, he really had a strong argument for coming home, because he does not recognize his limitations.

Denise Stiel: 14:15

No, he said, you know, I can take care of myself, and I said, well, history shows you can't. You know, you you you don't have any experience in doing that. You know, I've done everything for you. And actually, when you know, when he retired, he had secretaries. You know, he didn't literally. He I I don't think this man could boil water, and so you know, I just being called all day. I need this. I need this. And then he would, he he couldn't get on the internet. And then we have somebody that helps us. You know, our stock person, and he called me and he said, you know, he says, you know, he's calling me all day because he can't get on the internet. So then I started. Coming up with systems because he would get on, but then he'd mess up the password, and then they say you try too many times. And I mean, this was going on all day, no matter you know. Like I need to get back on the internet. I need to get back, you know. And so this was 10 times a day, and it's wearing.

Barbara Hament: 15:17

Absolutely, yeah, it is wearing. Are there other examples like that?

Denise Stiel: 15:23

Oh, a million all day. I need this. I need that. Where's this? Can you get that water? I mean, right next to the water. So, the other day after after dinner, I make sure I take take him out to dinner because he calls where he is prison. So you know, we go out to dinner and then we sit at Baskin Robbins, and he says, "Okay, will you get me a rocky road? And I said, "Well, you know, you're supposed to try and do these things yourself. So he got out of the car, he walks with a cane, and then I was feeling like, "Oh my God, I sent him into Baskin Robbins. What did I do? And you could see the man that was watching him. I mean, he's he's he's old and he's fading, and so the man that was watching him try and order was like so grateful when I came in. You know, I thought that was not really a smart thing to let him go into Baskin Robbins himself. So,

Barbara Hament: 16:21

right, and but you struggle with his with maintaining right, trying to give him the dignity of doing it himself, right, and trying to maintain his like independence, and so I think like there's a struggle right between how much to let him do himself and how much to do for him?

Denise Stiel: 16:41

He's he's used to being, you know. He ran. He had a couple businesses. He ran them. He had people, you know. He'd call them in and say,"Okay, could you get me this file? Could you do this? What about on this? So he's not used to doing these things himself. I mean, he has he has no experience of doing anything. And truthfully, his mother ironed his diapers, so you know he's he's he's used to being the king, the king of the roofs, and you know,

Barbara Hament: 17:11

see the person who took care of all the finances.

Denise Stiel: 17:14

Oh, he so screwed those up. You have no idea. I it started to become clear to me. He also has a degree was in counting from UCLA, but then he went on to get a higher degree. But so I mean I can pay bills. I know how to pay bills, and I and I had a company with 25 employees, so I was aware of what the bookkeeper did. I mean I hired the bookkeeper, so I was aware of it, but it's I don't like numbers and I don't like doing any of that, and but I became aware at home that we were getting all kinds of notices that everything we had was past due, so this was before I realized that he was really going downhill. So I got some things to organize him and said,"Okay, well, all we have to do is, you know, let's. I have good organization skills, but I didn't know that just buying this stuff wouldn't mean anything got in there. I didn't, I didn't realize that at that time. So, I hired a bookkeeper, very nice lady, and we just went through a couple years of things, and you know she did part of it, but then I knew how to organize all the filing systems, and we set up auto pays and stuff. So thank God I did that before, you know, while he still had some ability. And then I thought, oh, thank God! But then I realized he has businesses, and they have taxes, and so the CPA is. You know, the bookkeeper isn't that we had for the businesses. Isn't you know he retired? So then I had to hire a bookkeeper, which you know I know much about is going to the moon. But what I did is I called the chamber of commerce's because I know about them through my own business, and I said, "Who do you use? And they gave me the name of somebody great. So,

Barbara Hament: 19:09

so he wasn't paying the bills for his businesses or the taxes for his businesses.

Denise Stiel: 19:14

No, for how long? A couple years. So I'm digging through that now, and oh, I so resent it. I mean, it's so much. I mean, I think there's like three professional corporations, and I can't find the checkbooks. I got. I had to work with the banks to get all the bank statements, but then the bookkeeper wants to know. Well, with this American Express bill, blah blah dollars. Who who got paid for what? Wow!

Barbara Hament: 19:45

Isn't this so interesting? Like, if you do any reading about dementia, the the first, you know, some of the first signs are executive difficulties with executive functioning.

Denise Stiel: 19:57

Yeah, right.

Barbara Hament: 19:58

And when they list executive function. That paying bills using a checkbook, you know, writing checks and paying bills-that's right up there. So it's so interesting that you're talking about this because you never would have known he was struggling with that. There was no way for you to. Well,

Denise Stiel: 20:15

he didn't. He didn't even do it though. Mostly, what he did is we had a bookkeeper, and he had his secretary pay all our bills. But when he came home, he had to do it. You know, I mean, I guess I could have done it had I known it had to be done. But you know, I thought it was a big deal that I bought filing cabinets, so I was wrong. And he has ADD, so that's executive function. And and on the PET scan, you could see in the prefrontal part there were blockages in his prefrontal cortex. So it's all landed there.

Barbara Hament: 20:50

Right. Interesting. Looking back, yeah. Looking back, what you know, what you were experiencing in the past, but had no idea was going really going on? No, no. So I'm doing a lot of cleanup work. That's it's not my forte. I'm finding surprises. Probably like are things surprising you? What he wasn't able to do. In retrospect, no. But it was shocking because it was just shocking how much was left unattended, and you know it's not like I just have my

Denise Stiel: 21:30

household bills to pay taxes on. You know, it's these corporations,

Barbara Hament: 21:36

right? Yeah.

Denise Stiel: 21:37

So the bookkeeper is the CPA is trying his best to help me, you know. I mean, but I don't, you know. I mean, and I think

Barbara Hament: 21:49

the, I think kind of going just looking back really quick, like that. Those sort of aha moments are things that bring you to a point where you think, okay, something different is going on here. This is not just ADD. Like no,

Denise Stiel: 22:05

when we stop, when we stop getting, you know, we started getting all those notices that

Barbara Hament: 22:09

this

Denise Stiel: 22:09

weren't being paid. It was like, really,

Barbara Hament: 22:12

really, exactly. This is a smart guy, and he's not paying the bills.

Denise Stiel: 22:17

Yeah,

Barbara Hament: 22:17

something's something's wrong.

Denise Stiel: 22:18

No, there were signs, you know,

Barbara Hament: 22:21

that are hard to recognize in the moment.

Denise Stiel: 22:23

Well, and then you go for help, and they don't, and they and the primary care doctor says, "I got this. I've done this a lot of times. Well, that's nice. I haven't. So,

Barbara Hament: 22:34

right, I'm living with him. Something's wrong. Yeah. So, yeah. Note to self: like trust your gut and keep looking. Go to a second opinion. You know, you know your husband. You've been married to this guy for over 60 years, right? You just talked about, you know, celebrating an anniversary with him. That's a milestone. Yeah, these are that those are big numbers. You know this man better than anyone, so I'm glad you're going with a dementia diagnosis. Whether he has a true, you know, whether you've gotten the actual diagnosis, you're going in that direction, and I think you're right.

Denise Stiel: 23:11

Yeah, well, something's going on.

Barbara Hament: 23:14

Exactly, something is going

Denise Stiel: 23:16

on. These physical problems too. So, you know, I mean, these were two big events that he had, you know, big emergency hospitalizations.

Barbara Hament: 23:26

So he goes to the sporting care and complains bitterly, even though you've done everything you can to keep him happy there, right? So talk about some of the things you've implemented. Well, he used

Denise Stiel: 23:39

to go to the cigar lounge with his buddies. So his and they used to go eat and then go to the cigar lounge. So one of the guys is still picking him up, and they do that two days a week. And then he went to the senior center and went to the sports talk on Thursday afternoon. So I have a that fell out of heaven. This young 21-year-old that he's just-he's amazing to me. He's just by my side. He's like an honorary grandson. So he picks him up on Thursday. They go to Lovey's to eat, and then they go to the senior center. So that gives me a little breathing space. And then the other four days, I make sure, except for yesterday, that you know, I'm there and we do something, and we went to a movie and stuff. So, I don't feel like he's sitting there without you know mental stimulation. I you know I think if he was just in a board and care and I didn't implement things, but you know the kids can come see him. We pick him up and we go out to dinner for celebrations, you know, and so you know he's not out of the loop of anything we do as a family at all. I manage his 4 million doctor appointments, so those. Yeah,

Barbara Hament: 24:52

you're very involved. Yes,

Denise Stiel: 24:54

those are outing days,

Barbara Hament: 24:55

right? Although when I went to see him, you know, it was as if he were. With nothing to do, on an island,

Denise Stiel: 25:05

in prison on an island,

Barbara Hament: 25:06

in prison on an island, exactly. So he he made a very good case for getting out of there. Yeah,

Denise Stiel: 25:12

yeah. Well, he's only going to the new place because he doesn't want to fight with me. But he did tell the nice young kid that you know takes him to these places. He's just no. It's really nice. It's like a five star hotel. So you know he

Barbara Hament: 25:28

and he's right. Moving him to a very nice place. Yes. So I don't know. And his buddies are those like old work colleagues or no? He met them there at the cigar lounge.

Denise Stiel: 25:40

You know they just hang out and smoke cigars. I see. And the I had a manicurist once. She said, "Yeah, when they're together, these men they scratch and sniff. So yes, they're scratching and they're scratching and sniffing, and he'll be able to continue to scratch and sniff even at at the new place, right? Yeah, but the guy who picks him up, God bless him, is 93. So I don't know. Oh my gosh! I I don't know how long, but hopefully you'll be integrated into some new things, and that can just fall aside.

Barbara Hament: 26:09

So how about your family support? You want to talk about that a little bit?

Denise Stiel: 26:12

My children are amazing. I mean, I'm I'm the captain of the ship, but you know we have phone conferences all the time. What do you think is the best? What should I do? What about this? I didn't like this. How do you think we should handle this? This is what I think. So I brainstorm.

Barbara Hament: 26:29

Yeah, people don't realize how hard it is to care for someone with dementia.

Unknown: 26:34

Really,

Barbara Hament: 26:34

you can't. You usually can't take your eyes off of them. No, you can't.

Denise Stiel: 26:39

They they need

Barbara Hament: 26:39

monitoring. Yeah, yeah, and it sounds like your husband's pretty demanding.

Denise Stiel: 26:47

Oh, why? Because he can't get his own water or put on his own shoes, or he, or he needs the he needs the candy from the kitchen. Please,

Barbara Hament: 26:56

yeah. And you've talked about your house being multiple stories.

Denise Stiel: 27:00

Yeah,

Barbara Hament: 27:01

and he walks with a walker, so that would be a challenge in and of itself.

Denise Stiel: 27:05

I would have to redo the house, but I, you know, what I I can't really see bringing him home with a caretaker because, from what I hear, they're not that responsible all the time. The caretakers, you know, and and

Barbara Hament: 27:21

well, you'd be managing. You'd be managing a team of caregivers, right?

Denise Stiel: 27:25

Yeah, I yeah I you know I would I would be like the institution, and you know as it is now, I feel like I can manage his life, you know, and make sure everything he needs is taken care of, including someone giving him his medicine on time that isn't me, and that's more manageable for me. My older sister always says, "You know, this has to be manageable, and it's not, you know, to have them underfoot 24/7. I I think that I'd have to go to assisted living. They could have the house.

Barbara Hament: 28:00

Yeah, I am so glad you recognize that because many people wouldn't after such a long marriage. I think many people, many partners would say,"Come on home, you've worn me down, fine, and would take kind of the brunt of it, right?

Denise Stiel: 28:16

Well, I know, I know that that's his game, so I know that you know I I know I know the pattern, and I've done a lot of reading and stuff. So this is just what he knows. You know he knows that if he works me enough, he gets his way. But he can't. It's not good for either of us. I had three heart procedures last year. I mean, we both wind up dead. Yeah, and

Barbara Hament: 28:45

he's used to-he's a lawyer, right? He's a litigator. He's used to working it, and he's used to getting his way.

Denise Stiel: 28:52

Yeah, yeah. Oh, 100% But I-I can't. First of all, he's not clear-minded. Second of all, I, I was just listening. I do a a lot of meditation, and on YouTube there's some really good guided imagery things. And one of them today was on burnout, and that's where I was before this happened. I really didn't know that I could do it for another day before he got sick. I just there wasn't much left of me, and I'm very well aware. And I think you said this: is that many times the caretaker dies before the person they're taking care of, and that happened two times in our family on his side of the family. I mean, it absolutely happened, and I am doing everything I possibly can 1,000,000% to make his life work without my being the mechanic.

Barbara Hament: 29:49

Absolutely, yeah. Without going down with the ship. Yeah, I don't. I can't. You know, I can't. I still have things I want to accomplish in my life before. I mean, I'm 80. I need. Accomplish some things before I go. Yeah, so that's called taking care of yourself. It's hard to label, but there you are. You're doing it. And when we say those fluff words, like you got to take care, you know, everyone, you got to take care of yourself. Professional. So easy for us to say, right? You got to take care of yourself. It's like people look at us like, what, what, like, what does that mean? This is what it means. This is the definition. Recognizing your limitations, your physical limitations, right? Your you've had your own physical issues.

Denise Stiel: 30:32

I

Barbara Hament: 30:33

have the your the structure of your house, the nature of your husband, like being totally aware, clear-eyed about all of that, and saying,"I can't take care of him at home. It's going to kill me. And deciding, I actually

Denise Stiel: 30:51

feel that way. That you know, I

Barbara Hament: 30:52

think you're absolutely right. I think you're right.

Denise Stiel: 30:54

I did not think before this April 8 incident that I could do it for one more minute. I mean, I was on call 24/7, you know, and right on

Barbara Hament: 31:06

call 24/7. Have you heard of that book, the the 36 hour day?

Denise Stiel: 31:10

I haven't. That's

Barbara Hament: 31:11

that's it. That's caregiving. That's the life of a caregiver. You're on 36 hours.

Denise Stiel: 31:16

Yeah, yeah. So

Barbara Hament: 31:18

yeah. So being able to feel the guilt, you you said it. You feel terribly guilty. Terrible. I mean, I too think that wives are supposed to do this, but I also remember something my mother said. My mother said, "Daddy's retired, and I'm just tired. So you're feeling the guilt. You're taking it to your kids. You're taking it to your meditations. You're taking it to support group. You're talking about it, and you're dealing with it in your own way. It doesn't mean you're bringing him back home, right? You struggle with that. It doesn't doesn't mean you're doing it. You can feel it, talk about it, work through it, and he can be taken care of at another place, right? Yeah,

Denise Stiel: 32:03

10 minutes. You

Barbara Hament: 32:04

can. You're 10 minutes away. You can show up as the wife, not as the totally exhausted, stressed out, angry, resentful caregiver.

Denise Stiel: 32:14

Those are good words.

Barbara Hament: 32:16

Yeah, yeah. So I applaud you. I know this is so hard, and I, I've often said this. I've seen it, and you know, people ask us to move their spouses or to move their parent because that day, the moving day, is so hard, and and and people don't want to do it. But you're doing it. You're doing. You're going to be there. You're working it out. You're right in there managing it all. So I applaud you. I know the group really applauds you too because this is hard stuff.

Denise Stiel: 32:49

It's beyond hard.

Barbara Hament: 32:51

Yeah,

Denise Stiel: 32:52

it's beyond hard. I mean, I just never would have thought I was signing up for this, and you know, and never would have.

Barbara Hament: 33:00

Yeah, we don't know. We never know, right? What the future holds, and here we are,

Denise Stiel: 33:06

and here we are.

Barbara Hament: 33:07

Yeah.

Denise Stiel: 33:08

So,

Barbara Hament: 33:09

well, good for you, Denise. You had the courage to come here. I don't know you that well, and so I thank you for that. And I, I know the next week is a big week. It is move week, and so I'm here for you. I want to support you, however I can.

Denise Stiel: 33:24

Thank you. Well, I I worked it out. I have like I don't I don't like bookkeeping, but I have good organization skills, so I've I've definitely worked it out for that. And you know that that part I can, you know, I mean it's work, but I can manage it, you know. But you know, the thing is, is if I could, if I could, like move, I said to him, you know, if you give me six months, I will sell this house. I will find a house with a, you know, a guest house behind it, and you and a caretaker could be there, you know. You know, then I wouldn't have them underfoot 24/7, because I'm still going to manage it no matter what it is. I mean, I have to supervise. Do I have to? i.my eyes and cross my t's. So

Barbara Hament: 34:15

okay, so that's a really good thing. So you presented an option which says basically, you move there to this new place for six months. Whether you go on with that other plan or not, right? This is maybe bending the truth a little. What we call a fiddlet, a therapeutic, right? It's I call it creativity. You've been a little creative here, but you're buying yourself six months in the new place. Great, and it's something palatable. Like he could take that and think, like, okay, maybe I'll. No,

Unknown: 34:44

he

Denise Stiel: 34:44

said no.

Barbara Hament: 34:45

He said no.

Unknown: 34:46

No, he

Denise Stiel: 34:46

said no.

Barbara Hament: 34:48

He said no. I want to come home now.

Denise Stiel: 34:49

Yeah,

Barbara Hament: 34:51

yeah. That didn't

Denise Stiel: 34:51

work for him.

Barbara Hament: 34:53

So how are you getting him there?

Denise Stiel: 34:54

He finally agreed to. Why did he finally agree to Belmont? Maybe because I was so mad at him, I don't know whether I just walked out of the room we were in together. I said I've had enough of this, and you know. And so he finally agreed to go. Not that he wanted to, but at least it's not prison.

Barbara Hament: 35:18

Got it. Okay. All right. However you got him there. It's all good.

Denise Stiel: 35:23

Yeah,

Barbara Hament: 35:24

yeah,

Denise Stiel: 35:25

yeah.

Barbara Hament: 35:25

It's all good.

Denise Stiel: 35:26

Yeah, he was. Yeah, I think it's because I walked out of the room. I had had enough of it. I forgot what. So he realized he went too far.

Barbara Hament: 35:33

Okay. Well, you know what? That I'm sure you have a history of that in your in your marriage and your communication. Yeah. You you know how to get your way too, right? He knows how to get his way, and you do too.

Denise Stiel: 35:47

It wasn't even trying to get my way. It was just, you know, I can't bring

Barbara Hament: 35:51

him home, right?

Denise Stiel: 35:53

There's no way that you know.

Barbara Hament: 35:55

So you got him to agree to go.

Denise Stiel: 35:57

Well, by not playing, not not standing there and listening, by

Barbara Hament: 36:00

saying no, right? No is a complete sentence. Yeah, yeah. Okay. Yeah.

Denise Stiel: 36:05

So I just want to say something else.

Barbara Hament: 36:09

Yeah. The

Denise Stiel: 36:10

couple ways that I have besides reaching out for support is I have a I try and have a daily meditation practice, and there's some wonderful guided imagery journeys on YouTube, even just a 10-minute one, which is by Great Meditations, by letting go and stuff, and it really helps calm my body down and center me, and also journaling. You know, when you know, and there was a book called The Artist's Way, and she suggested writing morning pages, and they really help when you know when it's not spinning around in your head as much. So, those are a couple things I try and do to keep myself centered.

Barbara Hament: 36:54

That's great. That that is great. Yeah, and when your head is messy, right? The thoughts in your mind are messy. Yeah, meditation and journaling.

Denise Stiel: 37:06

Yeah,

Barbara Hament: 37:06

great suggestions. I'm glad you use them.

Denise Stiel: 37:09

Yeah. Oh, yeah. No, I have to. Yeah. Yes.

Barbara Hament: 37:12

Yeah. Because I'm sure you get stirred up after your visits with him, and you visit often.

Denise Stiel: 37:19

Yeah. No, I lose. I lose. I I lose hours after that. So, but I'm committed to see him through this. 100,000,000%

Barbara Hament: 37:29

I'm sure he feels that

Denise Stiel: 37:31

on some level.

Barbara Hament: 37:33

Yeah. Yeah. Oh yeah.

Denise Stiel: 37:34

He did say, you know, I need you. I said, yes, you do.

Barbara Hament: 37:37

Yes, you do. You confirm the truth. Ah.

Denise Stiel: 37:41

Well, that's that.

Barbara Hament: 37:42

That's that. That's a lot. That's a lot, Denise. Thank you for coming on the show today. I so appreciate it, and I appreciate you so with that.

Denise Stiel: 37:53

I hope you. I hope somebody. Well, I would like to say that my mother always said this too shall pass, but I don't know when. So, just you know, hold strong.

Barbara Hament: 38:06

Hold strong. Yes. Yes.

Denise Stiel: 38:09

Thank you.

Barbara Hament: 38:10

Thank you. 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 dementiadiscussions.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, 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.