An Interview with Vivianne Israel, RN, Sharing Her Compelling Alzheimer’s Story

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Hello, everybody. Welcome to the Truth, Lies and Alzheimer's Show. I'm Lisa Skinner, your host. I have a very special guest with me today. And you've heard me say in the past In the 30 years that I've been working with families and counseling families and training caregivers, it seems as though everybody truly does have an Alzheimer's story in some capacity or another. This disease touches so many people's lives, and the impact it has on everybody involved with the person living with this disease is very compelling because it just strikes everybody around them. So today, Viviane, who is a registered nurse, and she had an outstanding career of 47 years as a registered nurse, and she came on the show today to talk about her experience with her mother who suffered from dementia. She can probably go into a little bit more detail about the type of dementia that she lived with, but she has shared with me it was not Alzheimer's disease. As you know, there are over 200 different brain diseases that cause dementia. So this is kind of a unique story because her mom did not live with Alzheimer's disease, but a lot of her behaviors and a lot of her symptoms mirrored some of the same as Alzheimer's disease, but we put that in the bucket of dementia. And she's here to talk to us about what her experience was with her mom. So Viviane, welcome to the show. I'm so happy to have you here. And I'm really excited for you to share your story with my audience because As you know, probably from experience with your mom, that when you're going through this with a loved one, you probably feel at the time that you're the only person on the planet that's dealing with this. And I know a lot of the people who are listening to this show are feeling the same way. So I know it's really helpful for them to hear what other people have either gone through or are currently going through, or if it touches their lives at some point, um, can hear what other— how other people have handled it, which obviously would be very helpful to them. So I am going to turn the mic over to you and let you share your story of how this all came about in your life, and how you personally handled the challenges that came up on a day-to-day basis with your mom. But just to kind of give a little backstory for you, so people understand, you were not your mom's primary caregiver. She lived, as you shared with me, 550 miles away. But you, you were in constant contact with her. And you, so you still inevitably had many, many, many of the same types of challenges that others face, whether they're living next door or down the street or have their loved one living with them. So please go ahead and share your story with the audience. I'm sure they're anxious to hear more.

Oh, thank you. Yes, I really do want to be able to share with folks. It's one thing to, you know, know what the diagnosis is, and, you know, doctors talk to you about this stuff and plans of care. But it seems it's the things that you run across each day as you progress through whatever crisis or diagnosis you're dealing with yourself or with your family. That really seemed to help people the most is the real stuff. What, what did you see? What, what happened? Well, um, my mom, who had not had any mental or cognitive issues, you know, during her life up until a certain point— now she ended up having to have a pituitary gland removed. She had She ended up being written up in all these kinds of journal, medical journals, because there was, you know, if very few people had this and usually if they ever operated on them, they died. There were only about 4 people that had ever survived this stuff. And she ended up being—

Oh, so this is a really unique situation then.

Yeah, sure. Hers was, her origin, yes, was a unique situation. And she ended up being on you know, 27 different medications. Well, it's hard to find 7 or 8 medications that get along with each other. You had 27, something's fighting against itself. But also the process of having to do with her surgery, have this removed, she ended up with the water diabetes, not the sugar diabetes, the diabetes mellitus that most people are, you know, have heard about, but diabetes insipidus, the water diabetes. Well, that with having her mentatum, her mental capacity altered, and having these 27 meds to take, she could flash into becoming the human potato chip very quickly because, you know, she went, you know, water just kept going out. So that could take her into a problem that had seemed to advance other things that were going on, probably also her mental functioning. But she lived 550 miles from me and a point a couple years after my dad had passed, she would start calling me in the middle of the night. I mean, we talked to each other like at least weekly, but prior to that, but she would start calling me in the middle of the night, 2 in the morning, and chewing me out.

Vivian, why are you—

what are— where are you? What are you doing? Why are you out in the middle of the night when you have a baby at home to be with? Well, she was talking to me on the phone 550 miles away as though I had not gone home to her home and didn't have my daughter in her home, and which was not the true case. So, you know, I was concerned. I flew up there and just— we didn't really know exactly what was going on. Got a doctor's appointment, um, But this kept repeating, this, this behavior of hers calling me in the middle of the night would repeat and it would be different things.

And she lived alone, correct?

She lived alone and it would be hard for anybody to come and help her because you did not go and talk to my mom without her knowing ahead of time because she had to do a 4-hour face preparatory process before she would see anyone. Oh goodness. Lord help anybody that came to see her by surprise because she would, uh, chew him a new orifice on site. Um, so people became intimidated and they wouldn't go, but they would call me if they thought she was doing anything unique. And since we did talk frequently, if she was having like a fluid issue, I could usually hear it. I could hear it in her voice, you know, because, you know, I knew her really well. I could, I could hear it. I could feel it in her voice and know that when she's not being herself, Um, so I would end up flying up there frequently to try to see what's happening. And usually when I would fly up there, I, I need to take my daughter with me. So it was very expensive. It was like a mortgage payment to fly to Cowtown, California and, um, and take an 80-mile taxi trip to get to her house from the little, the little bitty airport. Um, and when she would usually end up being admitted and, you know, I would stay there with her and, you know, Tiffany, my daughter, would be with me. And then we think we would have some things settled, then she would sign out AMA and go back home, call herself— it was just, it was wait till the moment I'm not there and, and execute this. And this happened like 12 times. Um, I wanted her to come down and be with us, near us, I think with us, because I was afraid what that would do for my then young daughter. Um, I didn't want her resenting her grandma, and my mom had gotten to the point where she would be very cruel. Um, she could be exacting in her regular self, but never, never like this.

Now, before her dementia, was she more of a— had a sweet personality, or was she always kind of a difficult—

she was always controlling and I didn't get this. I didn't understand this piece I'm about to tell you until very late in the game, not very long before she had passed, because I would go up and spend a time with her, just sit with her. And I ended up not taking Tiffany with me because she was becoming very cruel and would say mean things to me and not knowing it's me, thinking I'm someone else. So when talking to me like I was a particular cousin, and I'd say, oh, Vivian, she'd go, oh no, you're too fat to Vivian. You can't, you're not Vivian. You're, you're, you're somebody else, you know. Meaning naming a cousin. And I did not want her saying that to Tiffany. I did not want my young daughter hearing that because she would not be able to understand that this really isn't her grandma saying this.

So, right, it became—

it was difficult to handle it by distance anyway. Of course, it's hard when you're in the home and you're with them every moment, but when you can't get them down here where you are, Trust me, it's tough too. Um, but I learned something. My mom grew up on a dirt farm in Arkansas, and then she ended up becoming a fashion model, a very famous fashion model, or I should say well-known. There are so many super famous fashion models. And we worked together. I started working when I was 3. We did fashion modeling together. And, um, but she did not want anybody to really know her. She had this onstage persona, but, you know, the only people that knew the not onstage persona were my dad and I. Um, so she could, you know, smokehouse, gaslight, whatever you want to call people, you know, she could speak with them in a way that would make them not pursue her with questions by intimidating them or this, that, and the other thing. That became very magnified in her dementia.

Now, were you an only child?

Yes, I was an only child.

So all the responsibility of kind of managing her new health condition fell upon you, correct? Yes. Okay. Yeah, that's actually pretty common. Whether you're an only child or you are the elder daughter, most primary caregivers end up falling to the eldest daughter in the family, even if you have a brother or several of them.

But the nurse in the family, which—

yeah, but there weren't any options for me.

I could have had 4 siblings. That'd have probably still been me. But there were different things that came on. She became very angry with her friend, her friend, her best friend, that she was adorable and they loved her. And but she came very paranoid. About things. Um, her friend— I won't say her name— was taking things from her. And we had worked in agreement that her friend was taking— doing— taking care of some of the payments of things that I couldn't set on automatic payment. And then my mom wouldn't let her do that because she thought she was doing things wrong. And she wasn't. She wasn't. Not— she was not doing things wrong. She was just— and then she was, of course, crushed by how my mom was Speaking to her and about her, but then my mom, trying to do her own thing, would say, I paid this bill, I paid that bill. She was addressing, writing checks. They didn't look very good when I actually saw them, but she was writing them and she would post them to the trash can. So she didn't actually mail them. She'd write them and she'd put them in the trash, and then she thought she was taking care of it. And she was—

how did you find out about that?

Well, I was flying up there many times whenever I heard her sounding off. I would, you know, to, to, to, you know, organize things and fly up, fly up there and see for myself is what's going on because I, so sometimes I just needed to see her eye to eye and know exactly.

Sure.

I say, stuff's off. I can tell by how she's speaking, but to actually see her eye to eye and, and, and then I would push through. Plus I had a key. Um, past what other folks would do. Oh, and she also had a gun in the kitchen, which is another reason I stopped taking the daughter up there. Because if I couldn't surprise her, I'd go up there, but then I would have to show up and say, "Mom!" And, you know, knock on the door and, you know, not like sneak in in the middle of the night or I might have a surprise. It came to be for her particular self, having been raised the way she was and then being in a different adult life, she had never respected her own knowledge. She did not want people to know her because she felt if they knew her, they wouldn't respect her.

She didn't—

she wasn't— she was smarter than she realized. She didn't understand her own intelligence. And I did not get that until about 3 months before she passed. And one of the times when I was up there and not taking my daughter, I would just sit with her. And much of the time she was talking about stuff that didn't make sense. But staying with her, staying and listening, and listening through and listening through insults and listening through different things, there would be little salient periods of time. And they might last for 15, 20 seconds, they might last for a minute and a half, they might last for 15 seconds. But there was a shift in her behavior when she did this. And when she would come to say something and I, oh my gosh. So I would try to, you know, get a piece of conversation, actual conversation when I knew we were talking, that she was talking to me in that moment and knew who I was and like that, as opposed to much of the any conversation, which was not that. But also with just sitting and listening to what she said and trying to process what she said, I came to understand that she was in a particular place in her mind, but that place was when I was like in junior high school and not living up in Northern California, living in Hermosa Beach, you know, the end of the Artesia Freeway, like goes right to the ocean. She was in that time. She was speaking to me in that time.

And when she did that, yeah, when she did that How did you approach that? How did you respond? Did you do what we call join her reality and just, uh, connect with her in her reality, in her moment? Or did you try to, um, correct her and steer her back into what I would call your reality, which was the present time? How did you personally deal with the fact that her short-term memory obviously was short-circuiting, and she was living in a different time period of her life than actually, um, was the here and now. So how did you personally deal with that?

How I dealt with that when I realized that, because I did not realize that early, early on.

Okay.

Um, this was at about the third year of stuff. It was about 2 and a half years of this process. Um, and when I was up there without Tiffany and would sit and listen to whatever she said, however ugly it may have been, because I wasn't going to have Tiffany there during that. Um, in the— when I first realized that I tried to help navigate her to now, or that What she's talking about isn't now. Oh, I remember that. You know, more like, I remember that. So what she was saying, some of it was actually true, but it was from way back. Yeah. Oh yeah, Mom, I remember that. But now, and so I would try to do it that way. And it didn't work.

Right.

And part of it—

So you had to learn through the school of hard knocks?

Oh, exactly. And so I say, did it work? And if it worked in a moment, would it work, you know, 3 and a half minutes from then, who knew? But it didn't work because her salient periods were, were very short. And I would realize that when she was talking this way, um, where, you know, back in time but not knowing it's back in time, and me too fat to be me, um, there it wouldn't matter. There was no— I could not negotiate that. This is where she was, and so I needed to speak to her where she was. Until we got to a place where she was where I was. There were her salient moments because there were some. But if you're not staying connected to her and what she's saying, you're not going to know that the salient moments are there. They might have occurred at an earlier time that I was up there that I didn't know because I wouldn't want— when she would start get mean, I didn't want Tiffany to be there and hearing that.

So we'd have to, you know, run out of time. This is a really, really interesting conversation. And it is so common to what a lot of loved ones experience with a parent or a loved one who is living with, with Alzheimer's disease or related dementia, where they do toggle back and forth between a different period of their life. And the current time period. This is very, very common. So my question to you is, based on what you have shared with us today, is if you had known to, uh, then what you know today, what advice would you give the audience to what you would have changed if you knew what you know today that would have made your relationship and your experience with your mother living with a dementia would have made a lot easier to cope and to manage this whole experience, because obviously it It had quite an impact on you. There's no question about that. So based on the fact that you shared that you didn't originally know the best way to approach her false beliefs at the time, but then you finally figured it out towards the end, what advice would you give the audience if they are experiencing similar situations to what you have shared with us today?

Well, and as far as in the speaking with and relating to her, is to not try to bring them, your person, to where they aren't, because they really don't have command over that, right? You can't negotiate it. They, they can't negotiate it. So to be with them, be with them.

Exactly.

You can hear where I, you know, ultimately figured out where my mom was with what she was saying. And how she was saying it. Um, she would say it was here, but what she was actually talking about were times back in Hermosa Beach, you know, like 30-odd years ago. Um, just be there with them and, and enjoy that time of, of what connection you can have with them. And look for the salient moments. And you can't always grab it, you know, it's there, it may be gone before you can say anything. But watch for them. And I had tried to get her down here, but but she had an honorary PhD in manipulating how people saw her. So I could not get conservatorship because they convinced— she convinced somebody at the court initially that, uh, she could take care of stuff. And then when I finally didn't, it got lost in court, and by the time I got it, I couldn't get her down here. She had passed.

I have to completely agree with the, um, the advice that Vivian has just shared with us. I had a very similar experience. Vivienne, I don't— you probably don't know this, a lot of my audience does. I've actually had 8 of my own family members live with one of the diseases that causes dementia. And so I personally experienced a lot of what you shared with my mother-in-law was one of the 8 family members and her short-term memory just like this would kind of short circuit and she'd be back in a different period of her life. And one of the things that I discovered early on, and, and obviously you did too, was you listen for the cues of what they're talking about. So you actually can identify where they are in their life's timeline. My mother-in-law talked about when she, when her short-term memory malfunctioned, she was an adolescent and you could tell what age she was that her mind has gone back to because of the people she was talking about in her life. And my husband, she didn't recognize my husband, who's her son. She called him Otto, who was her brother. Just like, you know, you were a cousin, I think. And so this is all very, very common occurrences living with dementia. And a lot of people experience this. So I think this is really helpful to those who maybe haven't come upon it yet. But your advice, I support it 1,000%. Don't try to bring them back into your reality. Join them in theirs. Because you— it doesn't work the other way. There's nothing any of us can do or say that can alter whatever they believe is to be true at that given moment. Do you agree with that?

I do agree with that. And there was one other piece I want to say is in a couple of salient moment periods that I got to experience with her, I had the true sense that she knew most of the time she was out there. Oh, and I was— it broke my heart because for her to have— for someone to have a p— even a piece of time, a knowledge that most of what's going on with them is wholly somewhere else, and that she has some moments in there that she is, you know, completely in the true moment with others, but to also realize that she has that, that has to be an un— an undescribable hell. So for whatever you are going through with your person that's— or people that are experiencing this that you love or care about, they have moments that transcend anything we can even conceive of.

Oh, I totally agree with what you're saying. This has been a very powerful conversation, discussion, and I hope it helps many people who are listening to this episode today understand it if it happens to them and will be very helpful because you're not alone out there. There are so, so many families that are going through this. And the thing that makes it so daunting is know, Viviane, is this is a long drawn-out illness. Yes. It's not something that is short-lived in a couple months. My grandmother lived with it for 20 years, and the average is 4 to 8 years, but a lot of people live with it for, you know, 12, 13, 14. How long did your mom live with it?

Um, 70, 90, I'm going to say over completely, probably 8 years.

Okay.

It was didn't— wasn't large, a large problem until like the last 2.5, 3.5 years.

Yeah. So unfortunately and inevitably, you live right alongside the person you're caring for or your loved one throughout the entire process of the disease. And it's really a bitter pill to swallow because it does have such a huge impact on our lives as well as their lives. So being able to share these, um, this helpful insights with the audience hopefully will make their journey a little bit easier to bear if they know to look for these things, or when they come up, then they say, oh yeah, I understand what's going on now with my mom or my dad. So thank you so much for coming on and sharing your wonderful story. I don't know if it's so wonderful, but it's wonderful in a way that you got through it. Yes. And sounds like that maybe you developed a completely different appreciation for your mom than you had before her illness. Yes, I did with a couple of my relatives.

Yes.

So anyway, Viviane, thank you so much for being here.

Thank you, Lisa Skinner.

It was a great pleasure to have you, and I wish you the very best of luck with the rest of your life and your endeavors.

Thank you, and I appreciate you for the interview and for what you're doing, because it is something that people can be afraid to talk about.

They definitely are. That has not changed in 50 years since my grandmother was diagnosed, but I think things might be changing a little bit since COVID Now, um, is there Do you have a, uh, a website or something that people can, um, look you up?

I do have a website. Actually, I'm, um, doing, uh, writing children's books to help kids, um, navigate their way through the increased social-emotional challenges they have surrounding the pandemic. So it's not a website that has particularly these, uh, types of things. But I do have a resource that I've been working on to put up. And I can make a special page of that on my website so that your listeners could go to it if I would like me to create that link and I can send that to you. So different self, self-care tools, keep your, keep you in your skin, keep your mind together when you're going through. I've had a few large crises.

That is totally relatable because I can tell you again from my personal experience and also from some of my clients' personal experience, when they've introduced their children to a relative who lives with dementia, that can have a lifelong impact on them. Absolutely. So I think some of the information that you share in your children's books would be very helpful in that regard.

Well, this is a resource for grown-ups. Yes. The children's books aren't out yet. I'm in the process of doing them.

Okay.

But that's what my website is directed towards. But I am making a resource with these kinds of tools, and I'll send you a link that your people could go to and, um, and find it with the self-care tools in there.

That would be great. And I'm sure people would be interested in finding out more about you. You're a very interesting person and, um, you know, very talented in terms of, uh, your writing abilities. So aside from Alzheimer's and dementia, I'm sure there's people out there that would, uh, like to find out more about you personally. This has been a great connection for all of us. And once again, I really appreciate you being here and sharing your Alzheimer's story with all of us.

Thank you, Lisa Skinner Skinner Skinner. It's been a pleasure.

Take good care. Bye-bye.

You as well.

Bye-bye. Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over to Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.