In this episode, co-hosts Steve and Virginia interview Denny Barker about his caregiving journey with his wife, Kay. He recalls an incident at his wife's memory care facility and the consequences that followed. Steve and Virginia reflect on their own experiences of dealing with their loved ones' dementia induced personality changes. What would like to hear about next? Email us at [email protected]
Steve O'Leary 0:06
From the University of California, Irvine, this is UCI MIND’s, Spotlight on Care, the podcast where we share stories, experiences, tips, and advice on caring for loved ones affected by Alzheimer's and other dementias.
Hello, welcome to Spotlight on Care. And we have an exciting podcast today, our topic is going to be personality issues, as well as some of the related medications that people have had to use when one of their loved ones is acting out. So I'm going to throw it to my co-host Virginia here and have her tell a little bit about her experience in this area. And then I'll come back and then I'll introduce our special guest.
Vrginia Naeve 0:54
Okay, be happy to, Steve. Mom's assisted living facility had a policy, where if somebody passed out, 911 was called, didn't matter what the reason was, if they knew it, or they didn't know at 911 was called. So occasionally, whether it be dehydration or whatever issue, they would have to call 911, after mom passed out and before you know it, an ambulance would drive up in the front. And they would gurney her out to the ambulance. I'm off to the hospital. So I would meet her there. And, you know, then there's the wait in the waiting room. And then there's the exam.
These things turned my mom upside down. I got so that I would dread the call that mom had gone off to the emergency room in an ambulance, and it did happen. So she would come home and be absolutely upside down. Anxious, nervous, combative. There was one time, she even got written up for hitting a woman in her arm and she made a bruise on her arm, this was not my mother, my mother's personality at all. So the doctor would give her a low dose of Seroquel after a while, and I think at one time, he tried resveratrol. It calmed her. It just made all of this really hard symptoms that she would get. It just made them go away. And she slept well. And she's happy. And I thought I hate to see her on heavy medications. But you know what, for us in that circumstance, it worked. So we were happy about that.
Steve O'Leary 2:59
That's a good story, Virginia, thank you very much. Yeah, I think we all have this experiences, our loved ones start to change, and react to the disease and fight against it almost as if it's a you know, a person and, and I think that's what's happening sometimes with these personality issues is, is the loved one is just doing whatever they can to fight against the change that's occurring in their body. In my case with Patti, you know, we were lucky enough to do early diagnosis. So her acceptance of the disease was really very good. And she did not fight attending doctor visits or things like that. But that real change happened when we shifted into the community when it became apparent that you know, the homecare that I had wasn't enough for her and, and the stress of my business travel etc, wasn't working for me. So when Patti went into the community, that's when the change happened. She really fought against, and you may experience this yourself. any change where she's no longer in, you know, her home that she's known, or at least in my case Patti's home that she known for so long. She fought against wanting to leave. And so there were some issues about her wanting to leave the location. Even struggling with the person who was monitoring the front door. No hitting, fortunately or, or any other type of activity, just a struggle. And fortunately for me, I didn't have to put her on any medication and she was able to move ahead. So it is a challenge and of course, this is probably giving you some idea of what our topic is going to be today with is personality issues and, and our special guest today is Danny Barker. Denny has been a resident of Orange County for a number of years. He's been a pillar in the in the dental surgery industry for a number of years as well. And he and his wife, Kay, worked the journey together. And so I'd like to introduce Denny today and start off by having him tell a little background on his relationship with Kay and what a loving, you know, wife and mother she was.
Denny Barker 5:35
Okay, Steve. Actually, I met Kay in seventh grade. And we went to high school together I didn't date her. She was a year ahead of me, dating older women was of course very cool but that happened about my senior year. So anyway, after that we did get married, as I was entering dental school, after four years of undergraduate. And so when I finished the dental school, we came to California I was in the Navy. We came out here. So we were at the time, when she passed away, we'd been married 58 years. So we've been a long time together. Um but she was fine until about 2010, the kids started, my two daughters actually probably picked it up before I did. Um I was with her all of the time, didn’t think too much about missed chances or missed conversations where she couldn’t get her facts straight because I was having problems at times too. Anyway so the kids came to me and said, “Dad, I think there is something wrong with Mom.” And I kind of started watching for it. And so at that point, thanks to Steve, he and I had talked and Keith Swayne who was another friend put me in touch with a doctor, Betsy Parker I think that was her name at the time. She was a psychologist at UCI. So we went in on 2010 and had extensive tests done on Kay and of course found out she had mild cognitive impairment at which point, um and she knew it so we put her on coconut oil and a number of other things that would try and slow this down. So for about 5 years it was really pretty good. And she knew she had it. She was not really upset about it. She was upset. She just said, “I can’t believe I am losing my mind.” She, I mean, she was the director of Women’s Ministries in our church. She had written five ten link bible studies. I mean she wasn’t exactly a sit around person. And she never did any of until after the kids were out of school and out of out of the house. So she was an ideal mother as well. And when that started, then all of a sudden, I think if you've been there, you know that suddenly it becomes more involved in terms of watching her and taking care of her. She was amazing, though, she would say, “Honey, I'm going to go, I'm not going to go up to the mall anymore. That's too far to drive.” And then the next thing was, “I'm not going to leave Pico in San Clemente. I'm just going to drive around here.” And she took it right down to finally played around town and right around us which point she ended up having a knee replacement and that sort of stopped everything dead. So from that she ended up just really walking the dog around the neighborhood, which was fine. And she came on one day and said, “I'm not leaving this this neighborhood”, because we were in a kind of a private community. And she said, “I got out on the main street and I got lost.” And so I said, “well, that's good, honey don't.” And so the neighbors all by this time had picked up on it and she would tell people that she had a mild problem with her memory. So at that point, I thought, well, I'll take her over to this one particular care facility that had a pretty good reputation in our area. And I walked her through it. And she got a great tour through it. And she said, “you know, Jesus is wonderful. This is really nice.” While we're getting somewhere here, and she came on, she started to cry. And she said, “you're going to put me in here.” And I said, “No, honey, we're going to go down to Harvard have lunch.” Well, from that point on every time something came up. She said, “Yeah, you're gonna put me in there now, aren't you?” So we did, we really got along quite well. I had a business relationship with another friend of mine in a Toyota dealership. And he and his wife hired a limo for last Christmas party we went to and Kay sat with Nancy and talked and they carried on a great conversation and Nancy when it was over said, “I can't believe it. She doesn't act like anything's even wrong.” Came home this then was Christmas and after Christmas right around the middle of January. She came out one day and she said, “Honey, I don't know who I am, or am I, and that was, and I had already called this memory care facility and put in the order for the reservation. And fortunately, one opened up so I, because of the way she and I had had that experience I just couldn't bring myself to take her so my daughter bless her heart, and her son, took her. We got right to, they got right to the door, or right to the stoplight across the street from this facility and she was hoping she shoot the light and get through it. And she's going to use the excuse that she's a singer and caroling, Christmas time, and she wanted to interview as if she could get a job there. Anyway, so about that same time, the light turned red. And so she sat there and Kay looked at the light and says, “I know this place. I've been here before.” And so when Kristen pulled in, Kay says, “I think I will go in with you.” Well, I mean, it couldn't have worked out any better. We got in there. And Mandy said, “Oh, hi, Kay, come on in and took her back and turned around to Kristen and said, “do you want to stick around?” She said, “Nope.” So they left. And of course, the way this facility works, they keep you away for at least a week or two. And I did, but she's always up to the front and say, “Where's Denny?” But from that point on, it was really pretty, pretty smooth. I mean she went around, she walked around, I'd had lunch with her almost every day in there. And she say, “How's the house?” And I said, “Well, honey, you are home faster. While it's not a first. And then I started getting, “Are you my husband?” And then pretty soon it was, “Do you know where my husband is? I haven't seen him.” And so I would always say, “Hey, Honey, I've got to go to work now. So that's why I'm leaving.” And we got along real fine that way. And it really went fine until Memorial Day weekend. I don't remember how many years ago it was now but I got a call at about six o'clock at night, five or six at night. And the lady said, and this is where I think there is a lesson here for sure. The lady said, the caregiver said, “We've got a problem here.” I said, “What's the problem?” She said, “Well, Miss Kay just tried to strangle one of the patients that is in a wheelchair.” And you know, I kicked myself I didn't say, “Is this the first time?” Has she done this before? Is there anything else she's done?” Now she's all, “We’ve got to move her out of here. We've got to put her in a psychiatric ward.” And like an idiot, I said, I should of said, I should have immediately said, “Let me speak with a doctor. Don't put her in there. You can put her on some medication and sedate and keep her there. But I didn’t. So and there was no opening in this thing. Psychiatric ward. So they moved her into Hospital for two days with 24/7 care. And that didn't come out of the insurance. So from there, she did go into psychiatric unit. And the fine spelling, the bad thing about that is that when I first went in there, Dr. Cruz and said to me, I hope you don't ever have to put her in there because this is a hellhole. And well, then she went and I’ll tell you what, it was a hellhole. And it was, it was terrible. Sad part is that by the time she got out of there, and really got back to the memory care facility, she no longer walked, she was in a wheelchair, really slightly. No, no cognitive understanding at all anymore. So she really lost her ability to even hardly speak. So that was that was a real jolt. And when I took myself for in many ways that I didn't just keep her there.
Steve O’Leary 12:56
But let's go back and talk about what occurred. And you know what, when Kay was transferred to the facility, did they call you? What was the contact that you had with Hospital and then with the psychiatric service?
Denny Barker 13:12
Well with Hospital, it was pretty light. It really was I mean, they knew she was in there, but they had to hire a separate caregiver that would take care of they there was no real emergency in her health. So when we finally got it, then they hired an ambulance to take her into this other psychiatric unit up in Newport Beach. So I didn't have I didn't get a whole lot of conversation with anybody on that whole issue, except that I can recall. I mean, that was five or four years ago, and it's still a lot of waters gone underneath the dam. And she went from there to another memory care facility in San Juan Capistrano. And from there, she finally went back to the memory care of her own facility. So it was really kind of a whole long, arduous trip.
Steve O’Leary 13:58
You said that the psychiatric facility wasn't a great experience. I won't quote what you said. But in essence that's what you said. What was it like for you and what could you see that was going on with Kay at that time? Where did you even get a chance to see her?
Denny Barker 14:17
Well, I only went over about twice because they didn't want you to go in. They really didn't want you there. So I but I did get in and I went in and it was more like a motel. It wasn't really an any kind of a I'd call it a hospital. And if it was just actually like I majored in psychology and in undergrad, and would go over to the mental institutions in Kalamazoo, and most of them they were sitting around the hallway had a stupor. And that's kind of where Kay was and where everyone in there was. There was nobody really responding or they didn't appear to be doing anything other than just knock them out. Let them sit there. And that's I don't know if any of you relate to that at all. Yeah. Okay, well, it was it was not good. And I would just say for anyone that goes through this, remember you have, she is your wife or your husband, you have to say don't listen to somebody and just say, “Oh, yeah, okay, that's fine, then I'll just put up with it.” I want to talk to the doctor, I should have found out how many episodes she had like this. Is this the only one? Is there a way we can sedate her and keep her there and just calm her down? Because it might have been a one time thing that just struck her wrong right there. I don't know. And never did. So by the time she got back, long gone.
Steve O’Leary 15:35
Do you recall not necessarily the medications that the Kay was on, but maybe what the medication process did to her?
Denny Barker 15:43
Well, when she was at the memory care facility, it was it was mild, and she was great. She was really functioning quite well there, once she went through the psychiatric thing. And when she came back, now we're talking about a whole totally different type of person, and she's in a wheelchair, and move her to the wheelchair and move the bed and move her back to the wheelchair. And you saw her at that time, Steve, when you were there to that she just kind of became an object that they put in front of a TV set. And she didn't know what it was. But she just sat there.
Steve O’Leary 16:17
Was there any improvement whatsoever after she came back from the facility from the mental facility?
Denny Barker 16:22
I don't think so. Not that I saw anyway and I would go in I went in three times a week. And the kids would go in too and they were they were saying the same thing. What happened did happen. There was there were some real changes that took place in that facility in the management, and ownership systems, things that really caused me some concern. And the kids started telling me and said that they don't look like they're keeping our real clean now. And so I started kind of looking for that too. And so at that point, and this was probably two and a half years ago, I decided it was time to move her. And so I moved into a board and care place of had six ladies in it. And she got bathed every day. So it was I kind of followed that a lot closer. And I knew the owner there and spoke with her quite often about the whole situation. She was treated really quite well there. And of course, right then the year ago, pandemic hit, she was in a lockdown. And I didn't see her for probably, I could look through the window at her, but I couldn't get into the facility. So I didn't get in and share for probably 9 or 10 months.
Steve O’Leary 17:29
Let's go back to the that day that fateful day when this all occurred, you said that you felt like you should have done some things. And you talked about that a little bit. But what why do you feel that way now, Denny? I mean, it all happened, you know, you know, in a few minutes, and you're kind of blaming yourself for that decision. But, but really weren't you looking for advice and counsel? And do you think that you know, really, it was your mistake? Or do you feel like you just didn't get what you what you should have gotten?
Denny Barker 18:05
Uh, well, I can't. You have a good point, Steve. I think there were there should have been a lot more concern on the other end of making sure that I was aware of what was going on and how I was handling it. And how are you doing in this? Are you okay with what we're going to do? And I got none of that. And I don't know the doctor, I prefer not to use his name. But I don’t know the physician ever knew anything happened until she was gone. It was on Memorial, was on Memorial Day weekend, he could have been out of town.
Steve O’Leary 18:32
So you said a little bit about what you think the message is. Which, which is a question about, you know, you're still even though you're in a community, you're still the primary caregiver, I think that's what you're saying. So maybe you talk a little bit more now how you feel about that responsibility.
Denny Barker 18:52
You know, it's so easy to look back and blame yourself or blame anybody because when you're in the throes of that is and then the emotions that are involved. You don't think that clearly. And that's probably the biggest problem. I tried to keep the kids out of it, because they, we had some issues there in the beginning, one daughter not really buy in that she was that sick or agreed she needed to go in there. Of course, she wasn't around a lot. The other daughter had been around much more she lived in the city, whereas Jenny lived outside the city and didn't get in as much so but it wasn't nearly as bad as our core group wouldn't see those were better than I might do to that there were some ended that were really had some tough times with their in laws in their family, regarding placing her in a care memory care facility. So I did not get any of that and when she went in Jenny did accepted it and it wasn't long before Jenny saw it all and said, “Well, I'm glad you did it, Dad.” So it worked out.
Steve O’Leary 19:48
What thoughts do you have, you know, reflecting back on Kay and your time together? I remember you so vividly talking about the dinners and how she prepared everything and, you know, then she would say, “I'm going to go to bed.” And it just seemed like she was this wonderful, even if she knew she was something was happening, but she, she worked very hard to still keep everything as much as she could around your house.
Denny Barker 20:18
She did. And that was that was sort of how, as we got to our dinner time, all of a sudden, the salad didn't get made. So I would run in and make the salad. And, of course, if the food had to be cooked, I was the one. And we didn't have a problem, thank God with a you know, setting the house on fire or wandering out. She did not leave the house at night. When she went out, it was structured and she knew when she could go out and when she couldn't. One night, she started sleeping in the kid’s room, because she felt like I snored and kept her awake. But when she was in there, she come in and she'd say, “Honey, there's somebody at the door. They're coming in the front door right now.” So she was getting hallucinating, hallucinations. And so I just thought I'd get up and go and look around I say okay, I think they think they've left, It's okay now. But then slowly, as I said, it just became at night, especially, I became so overwhelming for me, that that was about the time when I was getting I was getting exhausted trying to keep, buy the, make the food, buy the food, you know, put it together, and then get into bed after that. And this is about 6:30 she was ready to go to bed. And I'd come back and have a glass of wine and sit down and just, you know, crash so and even to this day, I find that I enjoy being alone at night and just having a glass of wine and making my own dinner and just enjoying the peace and quiet.
Steve O’Leary 21:44
You know, it's a great, great story that you have there. Denny, what about your thoughts as a caregiver in general? What do you think about being a caregiver and what did what it's meant to you? It's a lot of work. I know I hear sayings that caregivers often die before the patient does. And I can see why. Tremendous, tremendous pressure and just isn't over because you're constantly on guard, looking around your corners and making sure that she's okay making sure she's not getting out the doing all sorts of crazy things that she doesn't know she's doing. One time we I bought her the Medical Arert or Life Alert system so that she felt she could push the button if she was cognizant enough to do so. And I came home one day, about two o'clock in the afternoon. She said, “Oh, there were some men here.” And I said, “Did you let them in?” And she said, “Oh yeah.” And I said “Oh brother!” I said, “What did they do? She said, “They just kind of looked around and then left.” And I said, “Honey, you don't let, you don't let strange men in the house.” “Oh, they seem very nice.” And wasn’t until the next day I happened to go outside. And the next door neighbor said, “Hey, did you know the fire truck was here yesterday? Was everything okay, over there?” Well, what had happened is she apparently had pushed the button and didn't know it. So they showed up. And they were just wanting to make sure she was okay. So they came in and looked around and left. I never heard any more about it. So that was probably, that was probably the funniest thing.
Steve O’Leary 23:15
Another one of the stories, right, another one of the stories. Yeah. I mean, I think we all go through this debate about caring for our loved ones. How do you feel today? You know, Kay's passed away. How do you feel about the process and what you went through and, and the job you did?
Denny Barker 23:34
And I have to say, I'm a Christian. And somehow, it was like surreal that the Lord took me through that I have to say no other way because it was just such a surreal experience of this kind of just taking a day at a time and not even being able to feel and almost numb through the whole thing. And then all of a sudden, at the end, it was just like, “Wow, what just happened? Where are we at?” It took, you know, she didn't pass away till February 2 of this year. So fortunately, that last day, we were all able to, the kids and I were able to each one individually go in. We know it was getting near the end. And so, by this time, of course a lockdown is over. So we had half an hour to spend time with him or with her alone. And it was it was a nice, nice thing to be able to conclude it that way. It's gone so long. Now we were talking over 10 years. That it wasn't. It was it was emotional. In some ways. It was very final. It was probably not as emotional as was the day I put her into memory care facility. But it's kind of felt the same way too.
Virginia Naeve 24:34
It sounds to me like you did an unbelievable job with her. Bless your heart. I always feel like it was quite a journey. And if I had to do over again, I think I would be so much better. listening to these stories. Reminds me of so many things. And I think I wish I'd known that then I could have been so much better And I don't have that opportunity. I miss my mom every day.
Denny Barker 25:05
I understand that want to get his final because the death is is so final. But as I said, I have the hope that I'm going to see her again someday. And so that that meant a lot to me. Personally, I hope it does for you too. But it's what it is. And I see. Now, these kids say., “Oh, I have someone I'd like you to meet!”
Steve O’Leary 25:29
Well, that's, that's another interview. Don't worry about that. That'll be a different pod.
Denny Barker 25:33
I was kidding.
Steve O’Leary 25:35
I will talk about life after again.
Denny Barker 25:40
The lady in the sleigh. Yeah!
Steve O'leary 25:42
well, I think I want to echo Denny, thank you so much. And I also want to echo, you know, Virginia's comment I, you know, of course, was with you via phone and in person. Well, you were going through this difficult time. And I could see the pain that you felt at that juncture. And I think it's important for our listeners to understand that, that you can think everything's moving along just fine. And that everything's under control, and then out of nowhere, something strange happens. And you're put in a position that you hadn't prepared for, that nobody gave you enough advice about and you have to make a decision. And it's a gut-wrenching decision. And so often, the reason we wanted to talk to Denny is because this kind of situation can occur for any of us is we're dealing with a loved one. And, you know, Denny did a wonderful job as good as he knew how to do at that point in time. And, you know, unfortunately, that was a turning point for Kay’s health. But..
Denny Barker 26:49
Can I, can I say something,
Steve O’Leary 26:50
Sure, go ahead, Danny,
Denny Barker 26:51
I think Steve was immeasurably helpful in the encouragement and then that small group that he set up, because I'll tell you, just having that they're having other men to see as they're going through the same thing. I can't thank you enough, see for what you've done, and how you're still doing it, too, with new men coming in, and some of the old guys like myself, are not as not as if we're just not there as much. And I sort of find myself, you know, kind of falling away, because I'm not in the position where a lot of these guys are. And yet, Steve has stayed right there in the course, and I can't thank you enough, Steve.
Steve O’Leary 27:25
Well, that's very kind of you. Well, we'll go ahead and wrap up here. Thank you all for your willingness to listen to a great friend and a great caregiver, Denny Barker, and we look forward to hopefully having you listen to future podcasts for Spotlight on Care. And we're hoping to continue this process and we will have a bunch of new topics. So please check back on the website on a regular basis, as we'll be adding new podcasts, you know, every month maybe even every week. Thanks so much.
Denny Barker 28:01
Thank you, Steve.
Steve O’Leary 28:04
Spotlight on Care is produced by the University of California Irvine, Institute for Memory Impairments and Neurological Disorders, UCI MIND. Interviews focus on personal caregiving journeys and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention, or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information, visit mind.uci.edu
Transcribed by https://otter.ai