Lisa’s special guest this week is Vivianne Israel, RN. Lisa shares with her audience a compelling story told by Vivianne about the many challenges she faced after her mother’s dementia diagnosis in the hopes that it can help others who are in the same situation learn from her experience. Some of the highlights of their interview include:             

• How Vivianne handled many of the challenges she faced with her mother after the dementia diagnosis.
• The changes Vivianne witnessed with her mother’s changing brain as she progressed through her disease.
• Why “Joining Their Reality” really is the best approach to lost memories and false beliefs.
• Vivianne shares her advise to others based on the most valuable lessons she learned.

About the Guest:

Vivianne Israel is a Registered Nurse, who retired from nursing after spending 47 years dedicated to serving others. She is now in the process of writing children’s books and providing other helpful resources to those in need. Please listen to my dynamic interview with Vivianne. 

About the Host:

Author Lisa Skinner is a behavioral specialist with expertise in Alzheimer’s disease and related dementia. In her 30+year career working with family members and caregivers, Lisa has taught them how to successfully navigate the many challenges that accompany this heartbreaking disease. Lisa is both a Certified Dementia Practitioner and is also a certified dementia care trainer through the Alzheimer’s Association. She also holds a degree in Human Behavior.

Her latest book, “Truth, Lies & Alzheimer’s – Its Secret Faces” continues Lisa’s quest of working with dementia-related illnesses and teaching families and caregivers how to better understand the daunting challenges of brain disease. Her #1 Best-seller book “Not All Who Wander Need Be Lost,” was written at their urging. As someone who has had eight family members diagnosed with dementia, Lisa Skinner has found her calling in helping others through the struggle so they can have a better-quality relationship with their loved ones through education and through her workshops on counter-intuitive solutions and tools to help people effectively manage the symptoms of brain disease. Lisa Skinner has appeared on many national and regional media broadcasts. Lisa helps explain behaviors caused by dementia, encourages those who feel burdened, and gives practical advice for how to respond.

So many people today are heavily impacted by Alzheimer's disease and related dementia. The Alzheimer's Association and the World Health Organization have projected that the number of people who will develop Alzheimer's disease by the year 2050 worldwide will triple if a treatment or cure is not found. Society is not prepared to care for the projected increase of people who will develop this devastating disease. In her 30 years of working with family members and caregivers who suffer from dementia, Lisa has recognized how little people really understand the complexities of what living with this disease is really like. For Lisa, it starts with knowledge, education, and training.

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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 a 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 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, 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.

Thank you. Yes, I really do want to be able to share with folks because it's one thing to 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, 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, very few people have this and usually if they ever operated on them They died were like about four people that had never survived this stuff. And she and this is a really unique situation then. Yeah, sure hers was her origin Yes, was a unique situation. And he ended up being on, you know, 27 different medications? Well, it's hard to find seven or eight medications that get along with each other new and 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, the water, diabetes, not the sugar, diabetes, the diabetes mellitus that most people are, you know, have heard about, but diabetes insipidus lives with a water diabetes. Well, that with having Herman Tatum, her mental capacity altered, and having these 27 meds to take, she could flash into becoming the human potato chip very quickly was, you know, she wit, 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 talk to each other, like, at least weekly. But prior to that, but she would call me in the middle of the night to in the morning and chewing me on up and flat. 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 we didn't really know exactly what was going on. Got a doctor's appointment. But this kept repeating this, this behavior who was calling me them all night would repeat and it would be different things.

Left 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 form for our face preparatory process before she would see anyone, Okay, Lord help anybody that came to see her by surprise because she would chew him a new orifice. 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. Because, you know, I knew her really well. I could I could hear it, I feel it her voice and know that when she's not being herself. 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 need to take my daughter with me. So it was very expensive. It was like a mortgage payment to fly to cow town California, and, and take an 80 mile taxi trip to get her house from the little, the little bit of airport. And when she would usually end up being admitted. And you know, I would stay there with her and typically my daughter would be with me. And then we'd think we would have some things settled. And then she would sign out AMA and go back home. Colors of tech. It was just it was wait till a little bit moment I'm not there and execute this. And this happened like 12 times. I wanted her to come down and be with us near us with us because I was afraid what that would do for my then young daughter. I didn't want her resenting her grandma and my mom had gotten to a point where she would be very cruel. I 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 what she always kind of she was called 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 out and spend 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 you like I was a particular cousin, and I'd say oh Viviana Oh, you're too fat to BBN you can't You're not Viviane you're you're you're somebody else you know many 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 to. But I learned something. My mom grew up in a dirt farm in Arkansas. And then she end up becoming a fashion model and a very famous fashion model. Or as I say, well known there are so many super famous faster models. And we work together I started working when I was three, we did fashion modeling together. And 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. 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 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, several of them but the nurse in the family, but options for I could have had four siblings that are probably still been me.

But there were different things that came on. And 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 that 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 I 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 in about her butts in my mom trying to do her own thing would said, 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 trashcan. So she didn't actually mail them. She'd write them and she put them in the trash. And then she thought she was taking care of it. And she 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 organize things and fly up fly up there and see more for myself. It's what's going on because I sometimes I just needed to see her I did I know exactly, she steps off, I can tell by how she's speaking, but to actually see her eye to eye and and then I would push through plus I had a key past what other folks would do. Oh, but she also had a gun in the in the kitchen, which is another reason I stopped taking her up there. Because if I couldn't surprise her, like go up there but then I would have to show up as a mom and you know, knock on the door and you know, not like sneaking in the middle of the night or I might have a surprise it. It came to be for her her particular self having been raised that 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 did. She wasn't she was smarter than she realized she didn't understand her own intelligence. And I did not get that until about three months before she passed in one of the times when I was up there and not taking my daughter I would just sit with her. And a much of the time she was talking about stuff that didn't make sense. But staying with her Sade 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 1520 seconds they might last for a minute and a half they might last for To 10 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 in life, that is, pose too 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 or Mosa 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. And that time, and

when she even when she did that, how did you approach that? How did you respond? Did you do what we call join her reality? And just connect with her in her reality in her moment? Or did you try to 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 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. There's something about the third year of stuff, there was about two and a half years of this process. And when I was up there without Tiffany in which sit and listening to whatever she said, You however, ugly it may have been, because I wasn't gonna have Tiffany there during that. I'm in it, when I first realized that I tried to help navigate her to now or that what she's talking about isn't now as 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, no, Mom, I remember that. But now. And so I would try to do it that way. And it didn't work. Right. And how 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, three and a half minutes from then who knew? But it didn't work because her salient periods were very short. And they realize that when she was talking this way, of where, you know, back in time, but not knowing it's back in time, and me too fat to be me, um, that would 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, they 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 was dark, get mean, I didn't want Tiffany to be there and hearing that. So we'd have to be

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 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 had quite an impact on you. There's no There's, 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, in as far as in the speaking within law 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 can't negotiate it. So to be with them, be with them. Exactly. Here, where I, you know, ultimately figured out where my mom was with what she was saying, and how she was saying it. 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. Just be there with them and enjoy that time of of what connection you can have with them, and look for the salient moments. And you can always grab it, you know, it's they aren't may be gone before he can say anything but watch for them. And I had tried to get her down here. But she had an honorary PhD in manipulating how people suffer. So I could not get conservatorship because they convinced she convinced somebody at the court initially, that 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 together, I couldn't get her down here she had passed, I have

to completely agree with the the advice that Viviane has just shared with us. I had a very similar experience. Vivian, I don't, you probably don't know this, a lot of my audience does. I've actually had eight of my own family members live with one of the diseases that causes dementia. And so I personally experience a lot of what you shared with my mother in law was one of the eight 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 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 malfunction. She was an adolescent. And you could tell when he 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 experienced this. So I think this is really helpful to those who maybe haven't come upon it yet. But your advice? Would I support it 1,000%, don't try to bring them back into your reality, join them in theirs, because 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, I was it broke my heart. Because for her to, for someone to have a piece even a piece of time or knowledge that most of what's going on with him is wholly somewheres 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 on describable 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. Well, they have moments that are transcendent. 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, as you know, Viviane is this is a long drawn out illness. Yes. It's not something that is short lived in a couple of months. My grandmother lived with it for 20 years. And the average is four to eight years, but a lot of people live with it for you know, 12 1314 How long did your mom live with it?

Um, 7090, I'm gonna say over completely, probably eight years, okay, was it didn't wasn't large a large problem until like the last two and a half, three and a half 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, 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. And 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 how you got through it. Yes. 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. 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. Everything here since my grandmother was diagnosed. But I think things might be changing a little bit since COVID. Now, is there Do you have a website or something that people can look you up,

I do have a website, actually, I'm doing writing children's books. So helpful. Kids, navigate their way through the increased social emotional challenges they have surrounding the pandemic. So it's not a website that has typically these 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 you would like me to create that link. And I can send that to you as a different self, self care tools. We'll keep your keep you on your skin, keep your mind together, when you're going through as I've had she learned 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. And so I think some of the information that you share in your children's books would be very helpful in that regard. Well,

this resource for grownups Yeah, so 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 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 very interesting person. And, you know, very talented in terms of your writing abilities. So aside from Alzheimer's and dementia, I'm sure there's people out there I would 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. It's been a pleasure. Take good care. Bye bye. You as well. Bye bye