Dementia aggression and accusations.

these are the stories of care blazers the stories of husbands wives sons and daughters whose world is forever changed since caring for their loved one with dementia you'll hear stories of heartbreak you'll hear stories of love these stories are real raw and powerful i hope these stories show you you're not alone and i hope they give you some inspiration and help as you go through your caregiving journey all right thank you tom so much for being here with us today if you could just take a moment to introduce yourself to the care blazers and tell us a little bit about who you're caring for okay thank you dr natalie and uh like i said i really appreciate this opportunity and uh it's been a long journey and uh i've been married for it'll be 46 years come september and for 42 years we had the best of marriage it's i don't remember a time that we ever argued or had a big fight and she's been the best of moms and it was as if on one day it was july 15th at three o'clock in the afternoon july 15 2017 like flipping away the light switch everything changed and so i've been in this struggle for the last four years uh and it is my wife and it makes it very hard because from what she was for 42 years and what happened in one afternoon has been really hard to deal with so it is it is my wife that i care for uh yeah so tell us a little bit because i understand that your wife hasn't officially been diagnosed and you've had to do a lot of this kind of detective work and putting things together on your own can you just talk a little bit about what have been the challenges of getting the official diagnosis okay when this started four years ago i was in complete shock and i liken it to that i was on a battlefield and there's bombs going all around and for the first year and a half i did everything i could to try and understand what is going on and it took a year to year and a half of searching and searching and one day i don't know why it came to me but the words explosive anger came to my mind so i put it into youtube and the google and it was there that i started to understand from that term explosive anger went draw me to explosive personality disorders to all these different possibilities which then brought me to the whole world of dimensions and i started to understand how can this be that my wife it looks and it appears that she has this because as i started zoning in on dimensions and in particular ftd and behavioral variant i thought my god other people have this she has all the characteristics that experts say that she has and some of the signs that she exhibited first and foremost it was the abrupt personality change from someone who for 42 years was very calm soft soft-spoken supportive loving it turned to fierce anger i mean it was ferocious and i'll just be very brief on that july 15 day i was sitting out on the back step and we have two chairs and a sliding glass door and she's sitting inside and next door are four little little boys and they came over four years ago asking mr what are you doing i'm sitting here why are you sitting there and you know typical little kid stuff and then the mother came over looking for her son saying you know i got to get the kids home dad's going to come home we're going to have supper that type of thing and she says i don't even know what time it is so i says well here i'll show you that i had made this sundial out in our backyard so i was showing them that you could tell the time by the by the shadow and that whole encounter lasted maybe a minute and when i came back in the house my wife was like gone off with a rocket it was the accusations of adultery with this woman and and and over the course of four years the accusations of adultery turned into accusations of pornography uh [Music] it it it became she was so suspicious of who i talked to was i talking to people about her she became obsessive about everything in fact i have on another screen here over the course of time i made a list and on the left hand column is a list of all the things that she complained about but it's actually her list of obsessions of adultery pornography my long term bible study that i've that i've been in for 18 years uh it it then turned to delusional thinking of how the chinese have infiltrated my bible study and this bible study is nothing more than men controlling women and it just gets so bizarre and the screaming has never stopped for four years from sun up to sundown like just yelling out loud oh yeah and yes and yes in in the language and it was it was so frustrating because of all the things of of all the organizations and people we were told we've always been told to go to for help when there's violence in the home we call the police 11 police calls over the course of four years they never did anything numerous calls to the county crisis center they even came out to the house they never did anything i'm imagining these calls were made because you were frightened and there was things happening in the home that made you scared well yes and you know you know we have to understand and live in a world that it isn't fair to men when it becomes violence in the house if a man even defends himself he can be accused of being physical with his wife and i'm not getting into that and i'm not a violent person and but there was more than one physical fight and i was always the one to call the police uh so through all the and and and and through all my searching i came across your videos your name and your videos and i started watching them and i'm thinking you know this is this is everything that my wife is and then there was a time that you offered the online course on how to deal with people with various types of dimensions and you know those were so helpful to me where i learned that to get into their world to to to to learn what their triggers are to how to avoid when i see a trigger coming how to interact never stare her down if i'm angry always to watch my body language to keep it so calm right and you know that worked and it was it never was perfect uh and through this course of the four years things kept changing to the point she started isolating in the house she took a room but she she took a bedroom and that was now her home and it's been her home for three four well just about since this all started and i can come home from work and she she's been in there all day still in her pajamas just blankly looking at tv or she'll be looking at her computer and it's dark and i've gotten to the to the point where if she's in that room as disturbing as that can be as long as she's quiet and then over the four years it's also progressed to sleeping it's not unusual anymore that she'll be in bed sometimes at 4 30 in the afternoon but generally always it's by 6 pm and she's sleeping by 6 30 and she doesn't get up till 8 o'clock the next morning uh so all the signs were there that this this whole thing is progressing and evolving and in one of the well i'll i'll save that for just a minute uh you had asked also one of the questions was what has been my biggest caregiving challenge and by far away in the early years it was learning about this there's there's so much to this and and so few people understand dementias that it leaves a person just one is just overwhelmed first with how do i deal with this person who's so completely changed you don't even know where to go to get help and this struggle i had to try and understand and then once i started to understand and learn the next thing is how did i how do i cope with this because over the course of the four years as i've always said when i reply to people on the facebook care blazers closed site i often say this disease does not affect just the person but it also affects the whole family have lost i've lost a whole side of a family that this has become such an emotional struggle that i have a whole side of my family that i i haven't talked to well in four years uh it's now beginning to impact my son and and daughter and it is just heart-wrenching uh you know people react from their emotions rather than facts it's so hard to how do you make logic when people are illogical for instance my wife it's just you cannot make logic for instance her latest before or just recently about the chinese infiltrating the bible study group that i go to how do you ever make logic with that you you just can't so rather than argue i just have to get up and walk away i just have to walk away uh you know sometimes just walking away like we're told that can be a trigger in and of itself yeah uh but you know do you do you sit there and listen to this and there's always been one point i've never been able to grasp or whatever but how do i ever get into the world of someone who accuses one of adultery i i i just can't get into that world i can't get into that world of being accused of i'm into pornography i can i can let so much go and when those those two topics are brought up that is my line i just leave yeah and at this point she knows you bring that up and i'm good and it's just uh it's just the way it is uh what's been my most helpful yes i was wondering uh what's been the biggest obstacle in actually getting your wife the official diagnosis a couple things when she fears that i'm she's she's going to lose control and i'm going to have complete control of her and i don't know this but i strongly suspect i think she knows something's wrong and i don't think anybody wants to face that fact i think i think it's great fear on her part fear of losing control that i'm going to control her uh i don't yeah i that's what i think it is i think she fears she's going to lose being able to drive being able to come and go as she wants you know that's a fear anyone would have i certainly understand that but i've told her and well when i used to try and make logic before i understood i would say surely if you don't get help this is only going to get worse and i've said that to our two adult kids and they don't understand this they just one is one is apathetic he just doesn't want to get involved he doesn't care the other ones become so emotional even though all the evidence is there that mom is not normal and uh it's just heartbreaking and it sounds like really her hesitancy from anxiety or fear or whatever the case may be for her to go get an evaluation she's not open to that no and so where we are right now in the first part of march her anger or for a long time her anger was subsided to the point that all right this is my new normal i'm gonna come home to someone who's isolated who's quiet who'll go for days not talking to me she would walk from her bedroom to the kitchen make something to eat walk right on by me and not say a word you get used to that and and that's okay as long as they're not arguing but there was another trigger but this time her anger got scary where it so concerned me and for the second time in four years i contacted a family law attorney and two years ago i did this and i backed off for the sake of my wife for the sake of my kids but this time her violence had a real dark side and i says okay i'm ready to do this she cannot be in this house and with a little bit of evidence that i gave this attorney went to the county family court and i was taken by surprise as to how fast this whole thing went they came to the house one day and they and they told her she had to leave and it was it was heart-wrenching it was so she's been gone since about march 10th and it's devastated our finances where did she go you don't have to say specifically but did she go to live with another family member well here's here's the thing for all the people there's been a number of people who have got advice of what i've been doing wrong my daughter won't take her my son has a four bedroom house he only uses two bedrooms he won't take her so she's at her mother's not the ideal place in fact it is not the place anyone would want to be so as of friday through attorneys now it was said to her tom wants you home he's always wanted you home the whole order of protection will be dropped but you need to see your doctor and you need to let tom come and talk with your doctor if she will agree to that i'd take her home immediately immediately uh will it be easier when she's home or if if she decides to come home will it be easier no uh but i've learned that you have to pick no matter what we do no matter what decisions we make with this type of disease there is no easy path everything is hard so i've always said i'll take my heart with her being home because through the four years she'd always threatened to divorce always threatened to divorce in fact one time she even went to a large law firm and i thought i took it very serious in fact i was just absolutely devastated and i did what any lawyer would tell someone do not ever do well i wrote that attorney or that group of attorneys a letter and i said look this is what you're dealing with i sent them a couple recordings of her screaming and cursing in the house a couple of the police reports and she never heard from them ever again uh so that's you know it's uh and that's what i had to do the beginning of march i i had to give recordings of her screaming pictures of things she would throw and it breaks my heart to say she would bite she would spit i've had so many things thrown at me she has taken our wedding photos and held them up in front of me and took a scissors and cut them to pieces [Music] that is that is really hard to take so the last few weeks i've been in this house alone [Music] and i miss her a lot but i do not miss the violence i do not miss that at all uh the most the most helpful things i've had and i have to say it's been your courses on how do you deal with this type of stuff and i'll use my language how do you deal with someone where there is no more logic how do you deal with someone whose their world is mostly delusional someone whose world is filled with suspicion who that that is filled with obsessing over i mean four years i've listened to this list and i know it by heart i i have the left hand column of everything everything and then on the right hand column how she communicates that it's either yelling screaming hitting spitting throwing you know i chuckled but this isn't funny this is not normal right i don't know what the future is going to be uh i'm very concerned about it because this has aged me i'm not i don't look at myself as being old but the fact of the matter is i'm 67 i'm going to be 68 this year i've developed some physical problems that i'm going to the doctor for that i have some issues that i never thought that i would ever have not that it's life-threatening or anything like that but i've got some issues too and it's all this stuff is so draining it's just emotionally draining so many nights over the last four years i'll go to bed at night and i'm so emotionally drained that i will listen to my breathing just to breathe in and out and that's what puts me to sleep most nights uh and you had posed one of the questions to me about what's the number one piece of advice that i could give to others well actually i've got a number of things and first and foremost you know there's the ugly side of this whole dementia is that the person with whatever dimension they have they will isolate and because it's such a hideous disease the caregiver starts to isolate i've done that and i'm done doing that so one of one one one of the pieces of advice if at all possible do not isolate yourself but you get so tired of this you just don't want to see people first and foremost you have to learn everything about this disease and you know there's there's a lot of good places but you got to be careful for me it was at first it was dr google and dr youtube and it's just those are those are our resources that we have available and absolutely i searched and searched i didn't know what to i didn't know that she had a dementia so i didn't put in their ftd or alzheimer's i had no idea and it was just by chance one night explosive anger and it just lit up for all these different avenues i could go down in i say by the grace of god it led me down to the whole world of dementia which then led me to so many youtube videos which led me to you which led me to your courses and uh so absolutely learn everything about this disease and talk to people talk to people who are in the know how i have done that here i mentioned one of the psychologists i've talked to over the years a very well-known psychologist here here in the twin cities who know who deals with dementias in specific ftd the woman was a godsend to me that i could go meet her and you know she was so good to me when covid came i couldn't see her face to face and she's a very so many people go to her and when someone makes an appointment with her it's it's a month out at best she was so kind to me i would call her office and i would tell the admin people will you tell dr so and so that tom is calling and i can't wait i need to talk now and you know she would make time for me the next day it's and get self-help i would go to the local alzheimer's support group here and that was a godsend to talk to people face to face with other people who've been in this and that's where i met and had the wonderful opportunity here in the twin cities there's two particular neurologists who are very well known one of which his name is dr holmes i had the opportunity one evening to talk to him too and i had my list of all the things how my wife has changed he was so helpful so if there's a support group or wherever anyone is go to them and take advantage of that uh and and in time i came to my own thought is that we may be abused we are abused as caregivers but we don't have to take it accused of the most horrendous things but that doesn't mean that i agree with it uh what oh oh i wrote here if at all possible stay away from people who react emotionally rather than respond with the facts or the evidence at hand and when these things happen it's the family members who respond emotionally it's not someone outside the family they don't have the emotional ties and that is a real problem uh and the last thing i i've i've said it but i wrote it down here again always seek help and advice from people who know this disease do not go to people who do not know anything about this disease and so my four-year journey is not over with and i know that whatever happens over the next week or two whether she decides to come home or not if she decides to come home i'm going to be glad but i'll be i'll be like a knot in my stomach am i going to do this again i think i'll be able to handle it different because these weeks of separation have been good for me and as time goes on i'm regaining things that i've lost i've lost the contact with my friends because i tell my men friends don't call in the afternoon when i'm home because my wife it just it just isn't good you know i'm not living like that and in a sense i'm gaining my life back she can say and do all she wants and i have never ever blamed her because i don't believe or i believe this is a medical problem and for that that's why i've never left i i've i've had people tell me why don't you just leave her and i i i just can't do that i cannot and i used to tell my wife i will never ever divorce you because she would threaten all the time and i would say i will never divorce you it doesn't matter what you say what you do you will be the one who will do it and just remember it will be solely your decision and it will be all on you but i will not divorce you and uh that's just the way it is and p some people think i'm nuts and they can think what they want but you don't leave someone because they have a medical issue you just don't do that and what makes this disease different and harder than any other people get heart disease they get cancers they have car accidents serious serious problems but with all other diseases people still keep their logic about them but with this disease the logic goes away and it is so frustrating and so that's my story and it isn't done over these four years i've been so low and so broken but i'm coming back because i've learned and one of the things i've been thinking of for the last few months is that i am going to tell my story i started almost four years ago keeping a diary i have an electronic diary and it's on a little flash drive i'm up to 180 pages in addition to so many recordings of the rants in fact i made a spreadsheet it's like a storyboard i went through every recording at the beginning of march and i re-listen to all of them i have the dates and i have it marked down to the minute and the second of important things that she said on every one of these recordings it took me about 20 hours to go through [Music] i've got the police reports i've got pictures of all the things she has thrown all the pictures she's torn up all the gifts i've given her the one that was the hardest is i gave her such a nice valentine's day card a couple years ago with an expensive ring the next day that card was ripped to shreds and thrown on my office floor but she kept the ring she kept the ring she still has it and you know she's been gone here for a couple weeks it's on her dresser in her jewelry box there's that ring and that's okay that's okay um but that is something she would never ever have done over 42 years yeah this definitely sounds like a completely different person kind of overnight you know doesn't just like like a light switch like you said all of a sudden it's changed and i made a video which you know about of of of my wife and i think it's a very well done video it it i wanted to [Music] show my love for her and on it it shows pictures from [Music] going back to 2008 up until current and i tell people when they watch it keep the date of july 2017 in mind and all the pictures before that she happy and smelling she was she doesn't smile anymore there's a far away look in her eyes uh i think it's a very nice tribute to her and uh there's been i i don't know where people have found it on youtube but there's a lot of people who've watched it and uh it's up to you if you put it on the link on this on this zoom meeting or whatever people want to watch it uh they can um yeah i'll add the link in the description you you sent me the video but if you want to i didn't know it was on youtube if you want to send me the link i'll link it in my my description here and tommy i think we're breaking up a little bit here yeah i've seen that so dr nelly i've said everything i think i can i hope i've been helpful and informative to people uh yeah what i want to say to you tommy i hope i'm not breaking out i hope you can hear me i can hear you right now so um i just want to thank you for coming on and speaking so honestly it's not easy for people to share their story with others i think this is a disease where like you said there's not a lot of people who understand and even within the different dimensions everybody has different experiences and it's so easy for people on the outside or for people not in your shoes to easily judge or say they would never do those things or to say you know they would handle it totally differently but until you're actually in the position day in and day out it's really hard to truly know and so i i hate it just hurts my heart to see how this disease can break apart families like it did for years but i think there's a lot of people out there who are going through similar things as what you're going through and if you're thinking you should be doing it differently or you shouldn't be having these thoughts i just want i think you're just an excellent example as i listened to you and i do remember you you were like one of the very um first times i offered my course you were like an early member and uh i remember your stories as you were going through it and to where you are now you're like coming in you're gaining confidence and in a situation where so many people when it comes to dementia care giving doubt what they're doing and worry about what other people are saying i can see in you now you're developing confidence in what you're doing and supporting yourself through it even if the people around you including close family members aren't in agreement and i think that speaks a lot to your growth and i just honestly thank you for being so honest and raw and sharing what real life looks like when you are loving somebody with dementia in your case frontal temporal dementia you know i appreciate you saying that because as we who are experiencing these things firsthand i like the way you phrased it and yes there was a time that i had absolutely no confidence because i didn't know what to do i didn't know what was going on but in time now i do have the confidence and it's it's it's so much better when you have the confidence but you can't have the confidence if you don't understand the disease and so thank you for that uh and i'm reassured to hear someone say that you've seen progress in me because i have been a wreck to coming back to i don't know the words but i'm not living like i used to live yeah and i what i the sense i get to in hearing your story is that even when you're making the best decisions possible for yourself or for your loved one there's still really hard decisions that aren't really the greatest outcomes right so that's what really stands out to me and for a lot of people it's like whatever decision you make a lot of times just doesn't feel good i don't know if there ever is good decisions with these diseases because when you're dealing with someone who's delusional uh there's no more logic no matter what one does it's going to be viewed as wrong and what's so i still have a hard time grasping this even though i see it the illogic expressed at home she can still get in a car drive around town she can go grocery shopping she can go shopping uh there's only a few people she talks to anymore that's her mother and my daughter but if you see her walking down the street you think she was just absolutely perfectly normal yeah but in the house here it's not normal and it is confounding how this can be and i've over the course of four years i've heard so many people say my loved one don't be out shoplifting and you'd never know that they were a shoplifter and normally they wouldn't be but because of this disease they just do illogical things yeah absolutely it's hard to wrap your heads around and like head around and make sense of a lot of these symptoms i i do hope that she gets some help and gets checked out soon and hopefully you're a few steps closer to that with the situation going on i hope so and i'm hoping tomorrow or tuesday i hear something positive uh you know she decides not to come home that will be bittersweet in the fact that all right she doesn't want to come home but i will have peace in this house yeah uh so anyway you know you know i heard just said the be saying a long time ago with this disease it is what it is and that's what it is with me it is what it is this came upon her it's not her fault i've never blamed her i never will and now we have to deal with it and j and all you can say is it is what it is it is what it is i thank you so much for sharing your journey with all of us especially spending your sunday night here i think this like the sun has been going away as we've been talking and um i really do i think a lot of people are going to just maybe feel a sense of freedom that it's okay to talk about uh you know what's going on in their life and that they're not alone if they're in a situation that seems as confusing and frustrating and as if no matter what you do and what you decide it still doesn't feel good so truly tom thank you so much for being here and sharing that with all the care blazers well dr natalie thank you very much and you know i have to say that this is a real honor i never thought i'd be able to speak with a youtube sensation so we'll say bye here don't hang up we'll chat a little bit afterwards but care blazers i'll be back next week with another video thank you so much for being here please if you have you know words of comfort peace love you want to send to tom feel free to leave them below i'll be back next week with a new video bye

Channel: Dementia Careblazers

Views: 66,053

Keywords: careblazers, dementia careblazers, dementia care, alzheimers and mental health, dementia and mental health, dementia caregiver support, how to care for someone with dementia, dementia and aggression, dementia and violence, when to call the police in dementia, dementia caregiver training, dementia caregiver safety, how to care for a wife with paranoia, dementia and paranoia, how to set boundaries in dementia, natali edmonds

Id: K8_ev2A0ej8

Length: 44min 17sec (2657 seconds)

Published: Tue Sep 14 2021