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I remembered something I need to share here.... My Mom was in a "mental heath...behavioral health"... hospital was transported by ambulance from there to the NH. On the first full day the Social Worker calls me and says she had a very nice long talk with her, and then the SW asked me why is she there? I was not sure I understood the question. (My mom is physically fine) so I said "what do you mean?" SW says "well I know your her Representative/Responsible Party but who are you to her?" I said "her daughter!" She said "Oh????!!!!!... Well!!!! she said she dose not have any children??? I said.... "Now ("DUH") YOU know why she is there?" I was just glad Mom didn't tell her I was stealing her stuff or in jail (she always tells people I went to jail) or some other crazy story.
Between the delusions and confusion many dementia patients have its easy to feel they are just being mean or lying, but their minds just aren't working right. It can be so frustrating, but much of the time they just can't think straight so we have to find ways to reduce their stress and our stress... Not an easy task which makes supporting each other here so precious...
Many people with dementia have coping and masking skills in place that they've honed very well by the time it becomes obvious to anyone else that there is a problem. We knew that my dad was 'slipping' for a few years, but we didn't really know ALL that was 'slipping'. Now it it obvious not just to us but others in the community. Happily we live in a small town in a rural area and everyone has been more than kind and generous. The cashiers at the store, the tellers at the bank, everyone knows him by name and will chat with him, even when THEY know that he's not sure what he's talking about. However, for a few years it was not obvious to others that he had memory problems, so we've had those issues, too. My grandmother was the same way; the dr's at the ER saw nothing wrong with her cognitive abilities, so saw no reason to include my aunt when discussing her treatment. It can be very aggravating, and even dangerous, until the primary physician can start to see what is going on. It IS a survival skill that the person with dementia develops in order to cope with a world that is slipping sideways and out of their control.
Kiba, at my church many of the folks thought I was exaggerating my mom's dementia until she started referring to me as her friend since we were in first grade together! Lol So many people are really taken in by those coping skills!
PaleBlueDot I don't think the lying is deliberate, I just think it's what they think is true. I also don't think it's not really, crazy for the same reason. It took me a while to realize these things. Now, imagine you put a book down on a table and there are only two people in the room you and another person, then you get distracted by a phone call and while your on the phone you pick up the book and move it to another place, but because you were talking on the phone you forget you moved the book. Then you hang up the phone and go to get the book, you go to the table you were sure you left the book on and it's not there. Who are you going to blame? The only other person there because you don't remember moving it. Then that person say's I didn't touch the book. Then you see the book in the place you moved it and suddenly you recall while on the phone you moved it. The only difference is you can remember your actions after you find the book but a person who suffers dementia may still think someone else did it because they don't recall doing it themselves and they also get paranoid, so they may think you do these things just to make them feel crazy. You can not change how the dementia affects them so you have to change how it affects you. Another story.... One day Mom had a delusion that my boss was picking her up for a lunch date....she was already to go and waiting in one spot looking out the window. I asked what she was doing and that's what she told me, I just said Oh OK... then thought... wow, maybe I can get stuff done in the house. So sometime went by I asked again... she was still in that spot same reason. OK cool I got some stuff done, then I had to go to work that afternoon. I though OMG how an I going to get her in my car without an argument??? UMMM??? I got an idea... I called a friend without Mom knowing...I asked her to call back pretend she was my boss. She did...then I answered and pretended her date was stuck and needed help that's why he wasn't there yet. I said on the phone "oh yes we will come help you!" It worked she hurried to the car.... Then she forgot 5 minutes later all about the date and said "Where are we going?" This works sometimes but sometimes she knew I was pretending or didn't trust me.
Has anyone ever tried videotaping the person during the behavior nobody believes? My mom doesn't do the changing behavior for other people, but she would frequently do this Dr. Jekyll and Mr. Hyde thing with me. She would be sweet and loving and more like her normal self, leave the room for something, and come back a completely different person. She even walked differently, with her arms held stiffly at her side like when wrestlers face off, and she would give me the evil eye, like she just hated me, and make some accusation like, "Where is it?" (Where is what?" I would foolishly ask) "You know. Where did you put it?"....and so on, or she would just glare at me and if I asked her what's wrong, she'd say, "You know perfectly well what's wrong.", or, "You never do anything for anything for anybody." etc. and she would tell me to "shut up" if I disagreed with her. I often wished I had a hidden camera to document this behavior (because she denied it when I would tell her how she treated me) and play it back to her to prove to her it was true. Then I'd think, what the heck, she would just watch it and then say, "That's not me. I didn't do that. I would NEVER act that way. It must be someone who looks like me." I'm speaking in the past tense because, (knock on wood, I hope I'm not speaking too soon about this) she is not doing that very much any more. Her doctor recently put her on Risperidone (adding to Lexapro, Namenda, and Aricept, that she was already taking) and it seems to have relieved her severe mood swings and she is generally more sweet and relaxed and easy going now. (Whew!!!)
Anyway, back to the videotape idea. My mom wouldn't have believed it even if she saw it, but perhaps your relatives, the doctor, etc. will believe you when they actually see it.
What an embarrassing mortifying experience I had the other day. I gave up everything I own, my life I knew to come and take care of my mother, it was hell getting to Ireland from USA, selling my car, giving my furniture away, and the myriad of hoops I had to jump through. I also had to take my cat, talk about hoops. Anyhow, it is more than frustrating to see her act somewhat sane to others, believe me, she has problems, they think I am mean and she is fine. She tells people a lot of stories. Anyhow, she went to the neighbor's house and forgot to take her keys, I was laying down and didn't hear the door, she calls the police and then the show started. She was shrieking at me that I locked her out and didn't want me in the house, that I was mean and hit her. I can tell you that I think I am the crazy one and it is beyond frustrating, you tell people and they don't believe you. So, the police tell me I have to leave they take me to the station and tell me I can not go back to the house. I have nowhere to go, they took me out in pajamas and robe and put me in a holding cell till they can arrange a place for me to go, that was a homeless shelter, oh my God, what a horrible experience. I didn't sleep all night there, had to call her and she didn't remember anything, when I told her I was in jail and hostel, she laughed! This is dangerous for me. She spent the time going through my drawers, and go into the loced closet that I locked to keep my paperwork from being hidden by her. She took the money I had in there, plus the credit card, how can she be so mentally feeble, but yet so manipulive and sneaky. Anyhow, she called her doctor and the public health nurse came by, she felt my mother should go into the hospital to be evaluated, plus give me some space. So, how do you like this craziness, Thankfully I have this forum to help me know I am not cuckoo.
Madeea, what an awful experience! I just can't even imagine how embarrassing, frustrating and scarey it must have been... Sounds like a hospital eval might be a really good idea! I hope this week is much better. ((((((hugs))))))
All I can say is thank heavens I am not alone in this! This site has saved my sanity many times. My Mother will gladly throw me under the bus if it means she will get some attention. So strange. Her social skills are all but gone but she still loves to gossip and LOVES to gossip to other family members about family members. I have never been interested in gossip - who really cares - but I guess with her diminishing brain capabilities it is something to talk about. One of my favorite quotes is "Great minds discuss ideas, average minds discuss events, small minds discuss people." Makes sense as our brains do get smaller as we age. So most of the time I do not even pay it any attention. When she embarrasses me in front of sales people I just keep quiet. They don't know that she has dementia because for others she puts on a big act. Her favorite thing now is telling everyone that I was "supposed to be a boy" and that is why she did not get her tubes tied after she had my brother. So Mean!! It is hard not to tell her if I had been the "boy" she so wanted there would not be anyone taking care of her right now. Like a lot of women my Mothers age - she is 89- she thinks that men are going to take care of everything. OK??? That has sure not been my experience. Hug to all
So glad to know I am not the only one. I am the caregiver for a dear friend who is suffering PD and early onset dementia at the age of 64. I wish that some of our friends could read the posts here. For some time now, she has been able to pull herself together enough when in the company of others, though it appears that she is beginning to lose that ability. Friends think that I am terrible for saying that she is having cognitive problems when she appears to be "okay" during the few hours that they interact with her in the course of a year. No one offers to take her for a few days though.
My family hid my aunt's condition from me - my brother so he could sponge off her and feed his drug habit rent-free, my parents so they could drain her checking account. On the phone, my aunt was able to hold a more or less normal conversation, though I started to get suspicious when my brother kept taking over the phone and not letting her talk to me. After the state (of Calif) stepped in and took over her care, my parents stepped out of the picture altogether. My brother was removed from the house. Eventually, she couldn't hide her condition over the phone and that's when I made arrangements to come out to pick her up and bring her back to Indiana. (Still didn't really understand her mental state until the day we got back and she had no memory of a 5 day car trip). In the past 3 years I've become more and more aware of what my family stole from her, how they used her -- as well as the state social worker and the Catholic Charities person who was her representative payee. As soon as your elder's mind starts to go, they are prey to every crook and hustler in the area -- don't worry about whether or not people "believe" you or not, just get as much education and support as you can. You're going to need it, especially if you're going it alone. Caregiving is not for the weak!
I know that Mom had a troubled childhood but I don't know the full extinct of it but now that she cant "cover" anymore, I see more of her issues emerging. Once again, these are the same parents that took me to see a Therapist but never sought one for themselves even after the Therapist told them the problem was not with me but them! I think my Sister knew Mom had some personality issues but took it to her grave, now I'm here going "what in the world is this?!" Even in Mom's sleep, I can see that she is troubled. Dad has unresolved childhood issues also but he will not talk about them much, they come out when he is angry. Never the less it behoves us all to seek help and talk about whatever is holding our peace of mind hostage. Let it go!
I have a resent story... Mom makes me laugh and you all seem to like my Mom stories so I'll share another.... The other day at dinner time at the NH, Mom and I walked into the dinning room and the aid put a chair at the table with a few other ladies. Mom says to me "but I don't want to sit with them I don't like them" ..I knew why they are all the complainers. So I looked around to see if there was a place she'd be more comfy... then she pulls the chair away from the original place and sits about 4 feet away from the table and says to me it's OK here.... I said "you can't eat so far away" she said "I'm OK don't worry I like it here right now." I never argue so I shut up for peace (go with it attitude) but I was trying to figure out why all of a sudden she was in the OK mood. Then she says look the sun is in my eyes I can't see... so I closed the blinds. She says "now that's much better" and smiled big. Then I noticed a handsome guy who was a staff member that delivers the food carts, standing behind me. In Mom's plain view from where she put her chair, and when the sun was in her eyes she couldn't see him. So I whispered into her ear "you got a great view from here HUH?" Mom went "HEEHEE" like a school girl and says '"UHUH!!!" So I stood on the other side of the chair and said "I got a better view from here." As I looked at him....She knew exactly what I was talking about and chuckled. " I Told you this was A GOOD SPOT!!" I must say her taste in men is great, nothing demented about that. It's funny because I thought she was being uncooperative but she had a good reason for her actions.
In reference to the lying that many dementia people are doing, it's a problem, I believe, if you are the caregiver and are the victim of the lies. What I mean by this is that because my mother is such a master at pretending and pulling off that she's normal, her friends and the rest of the family believe everything she tells them. Often, my mother says horrible, completely untrue things about me. Then, my brother and sister attack me and won't allow me to defend myself. My siblings do nothing for my mother, see her, as I've mentioned, maybe once a month for a couple of hours. Then, they have the nerve to believe the convoluted lies my mother tells them about me--really sick, vicious stories. It amazes me how my mom never, ever tells them all the countless things I do for her, including keeping her large home organized and spotlessly clean. I do everything including ordering her everything she decides she needs online. I buy her clothes for her, make sure she has all the special foods she likes, going from store to store to buy her all the products she desires. I even have organized all the remodeling of her home and transformed her front and backyard--the grass was all burned out and now it's like a lush, green carpet. She never once tells my brother and sister the countless things I do for her. But, she makes up lies so they will think I'm terrible. Once, in tears, I asked why she liked to hurt me so much and why she never said anything nice about me to anyone and she said, "I don't know." I thought that was an interesting lack of an answer. So, her lying does affect my quality of life.
Whew! Glad I'm not the only one suffering from this dilemma! My 81 yo mother does the exact same thing! Except my son and I are the only ones that see the differences. My older sibling lives out of town and just "can't see that mom would say and do those things" She puts on an A+ performance when they come to visit! I have noticed though that she limits her time with everyone. She makes excuses to drive into town for something. (she still drives in daytime) or go into the other room and spends no more than an hour or 2 with any group or person. And I ahve figured out that is the length of time she can handle putting up a front. If she is pushed past that time limit she gets angry, defensive and usually there is a fight or some serious drama after that point. Poor thing! I've found no answers, but hope to be encouraging to others. This situation, I believe is completely normal part of the aging process in this day and age. Not a pleasant one, but the norm. God's blessings!
OH about the lying .... I almost got arrested once because a young office was listening to Mom say I beat her, thank goodness the sergeant knew better. My sister called me and asked if I was doing all these crazy things and I said to her "according to Mom.... well ....I hear that your shooting up needles everyday and steal from her to buy drugs and threatened to kill her with a gun" I said "do you think I believed her that you were doing these things?" HELLO she's got dementia!!!!! Then I figured out CSI was not the best program for her to watch!!!!
To all who have written about "lying": it's only lying to those of us who do not suffer from brain disease. Lying is a willful, deliberate act. Your loved ones' minds are not under the kind of control yours are. What you call lying, to them is reality. It is a symptom of the disease. They hallucinate (visual and auditory), they develop delusions, some frustrating, some amsing (my aunt remembers when Dr. Oz was a little boy and she taught him how to be a doctor). I would urge you to not frustrate yourself with thinking about all this as "lying," but instead develop strategies to deal with their very different reality. It will take a lot of education, grace, and compassion but you will be a better person, I promise.
I wasn't necessarily referring to you, momslife. People on this thread have been referring to the "lies" of those with dementia. I was just trying to bring some perspective to a frustrating symptom of that disease.
After reading all your posts, I'm beginning to understand that lying is a symptom of dementia. I suppose it's a sort of delusion that occurs in the minds of dementia sufferers. However, for me, it isn't just the lying that is difficult for me to deal with. It is that, in my case, my family and my mother's friends believe my mom's lies because they don't accept that my mother even has dementia. So, my mother's lying, in this case, is very damaging to me and my reputation. Admittedly, my relationship with my brother and sister has become severely fractured in last few years, so they are always more than willing to believe the worst of me, even though I'm the only sibling who is caring for my mother. I think that, in their minds, if they think the worst of me, it relieves them of their guilt in not contributing to the care of my mother and somehow empowers them in a bizarre way.
Marci....your last paragraph is such a true statement. I truly believe that my husbands siblings choose to ignore the fact their Mom has dementia...even though her doctors have all talked with them they do not live with it day in and day out like we do. So, when they do decide to call her which is only every 3 or 4 months they have no idea.....not to mention she showtimes with the best of them. Yes its very frustrating....... ..but it is the disease.
My interpretation of my mom's lies is this... I do believe that in my mom's current state she is capable of deliberate lieing. She admits to it later when it's brought to her attention. She will go into a docs office and tell him all is well, when it is not. She will tell her friends and family things that are not true. She has done this to a small extent her whole life and she is doing it more now as a tool to ... remain positive, to keep secrets about the huge challenges she is facing from friends and family, she sometimes uses false statements or what she calls lies to manipulate others or influence them to do things for her or to do things her way. It is not an awful thing at this point, but it takes a bit of reality out of the situation and at times it can be very seriously dangerous for her. She is doing it intentionally. She is doing it because it is something she can control when she has limited control over a lot of things.
Each of us may be dealing with different circumstances, but I would like to share with those of you who have people in your lives who are deliberately lieing that is is deliberate, sometimes. In my case, I do understand that it is not malicious on my mom's part. To her it is one of the few things she can do to control her environment and those around her to help her live a better life ... to get the things she needs to stay alive.
I hope that is helpful to some and I also realize that for others the brain has in fact deteriorated and it is a whole different story. In my mom's case she knows exactly what she is doing and she admits to it when we talk it through...
So, let's all keep sharing our very different scenarios because some will match and some will be different. It is all helpful to me to understand the giant spectrum of what we are experiencing.
Thank you all for being here and for continuing the dialogue.
MarciWriter I argee completely about that last paragraph that bigkatie90 said is so true in fact your whole post is like an eye opener once you get that their B.S. is just that it gets easier. And I am so glad I have made "my actions speak louder" than thoughts and words and my family, will never get that. Just last week I was told to stop being so Bitter, JUST AFTER I LET 2 YEARS of the uncooperative resistant behaving go over my head because I didn't have time or energy for the B.S. and OH BOY!!!!!! DID I VENT!!!! Oh and I think I vent for all of us here. I wish I had a video you all would have be so proud. I said If I wasn't criticized for doing the right thing and had cooperation, not rejection I would have no reason to be bitter. They act as if I been on a cruise and living it up and have a heaven like life and Mom miraculously got into a facility and is doing GREAT and has the best care situation without my supervision. OH LOL ....I just realized... they see it that way cause they are doing that. The truth hurts and deep down they jumped ship when"I' the captain stayed aboard and kept the ship afloat and now it's smooth sailing (until I hit the next iceberg ) and they want to climb aboard and I now am refusing to throw out the life preserver for them. Wow I don't know if that makes sense to anyone else here but for all this time I have been trying to get the words to describe my side of the story and I think that is it.
One of many things that I have learned since being my MIL'S caregiver 24/7/365......is that those that are NOT around 24/7/365 have NO idea what we as caregivers deal with on a daily basics......... from show timing to NO privacy to NO life. The last post could have been written by me.....this is NO cruise.....but I can tell you that my husbands siblings travel the world and go and come/as they please.....so of course they have NO clue what our lives have turned into....and most likely do not think about it because they are not willing to help so WHY give it another thought...out of sight out of mind?? K
I saw that mom was giving her dog, "Minnie", some of her own dinner. (I try to discourage her from giving Minnie people food because 1. she would give her so much of her own food that she would not eat enough of it for her own health, 2. she would feed her so much that Minnie would become obese and unhealthy, and 3. she would not remember which foods are REALLY TOXIC for dogs. Most of the time I have Minnie go lie down somewhere else when I give mom her meals, or I call Minnie in the kitchen and giver her her dog food, but sometimes I get sloppy about it.) When I saw what she was doing, I said, "Oh, mom, please don't give her your food". Just as the people food was leaving mom's fingers and was slurped up by the dog, mom said, "I didn't do it. Someone else must have done it." There was no one else in the whole house. It must have been her evil twin, or, just, her invisible twin! ;o)
I really needed to read these responses today...I though it was only me. My mom can fool almost anyone and if you just watch and listen to her presentation without much thought of the content, you will think she is just fine. With me, she complains, talks about going home all the time (in Assisted Living) and says that she has spoken to her brother who is coming to get her (he dies 20 years ago). She called me today and in her best acting voice she said "I want you to call the Nurse Practitioner. The only reason I'm here is to take my medicine and they only give it to me twice a day. I can stay at home and come back twice a day for medicine. The aides told me that a lot of people do that here". Sounds reasonable, except that "home" is 80 miles away. When I told her that her plan would involve someone driving her 6 hours total each day to get her medicine, she replied "that's no problem, I know lots of people who would do that for me". She finished by saying "and that will be a lot cheaper than what it costs to stay here". I laughed, but was also so frustrated because the "going home" thing is really starting to wear on my nerves.
Dear Abby33, just a note to say I know how you are feeling. I take what ever my mom says seriously, because I love her and sometimes, well all the time, I'm sure she doesn't consider the ramifications on me for the things she says. Sometimes it's harmless and other times, if I'm not careful I go on a wild goose chase with her or for her before I'm alert enough to realize we are spinning our wheels on something meaningless or wasteful... Just because mom was chatting with someone. It gets hard to manage and sometimes piles up to exhaust me.
If I'm careful and alert I can stop things before they start, but I'm far from perfect. Just saying .... It's good to hear your story and to see that others have similar experiences. Thank you for sharing! Have a nice weekend.
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Another story.... One day Mom had a delusion that my boss was picking her up for a lunch date....she was already to go and waiting in one spot looking out the window. I asked what she was doing and that's what she told me, I just said Oh OK... then thought... wow, maybe I can get stuff done in the house. So sometime went by I asked again... she was still in that spot same reason. OK cool I got some stuff done, then I had to go to work that afternoon. I though OMG how an I going to get her in my car without an argument??? UMMM??? I got an idea... I called a friend without Mom knowing...I asked her to call back pretend she was my boss. She did...then I answered and pretended her date was stuck and needed help that's why he wasn't there yet. I said on the phone "oh yes we will come help you!" It worked she hurried to the car.... Then she forgot 5 minutes later all about the date and said "Where are we going?" This works sometimes but sometimes she knew I was pretending or didn't trust me.
Anyway, back to the videotape idea. My mom wouldn't have believed it even if she saw it, but perhaps your relatives, the doctor, etc. will believe you when they actually see it.
My siblings do nothing for my mother, see her, as I've mentioned, maybe once a month for a couple of hours. Then, they have the nerve to believe the convoluted lies my mother tells them about me--really sick, vicious stories. It amazes me how my mom never, ever tells them all the countless things I do for her, including keeping her large home organized and spotlessly clean. I do everything including ordering her everything she decides she needs online. I buy her clothes for her, make sure she has all the special foods she likes, going from store to store to buy her all the products she desires. I even have organized all the remodeling of her home and transformed her front and backyard--the grass was all burned out and now it's like a lush, green carpet. She never once tells my brother and sister the countless things I do for her. But, she makes up lies so they will think I'm terrible. Once, in tears, I asked why she liked to hurt me so much and why she never said anything nice about me to anyone and she said, "I don't know." I thought that was an interesting lack of an answer. So, her lying does affect my quality of life.
if they think the worst of me, it relieves them of their guilt in not contributing to the care of my mother and somehow empowers them in a bizarre way.
Each of us may be dealing with different circumstances, but I would like to share with those of you who have people in your lives who are deliberately lieing that is is deliberate, sometimes. In my case, I do understand that it is not malicious on my mom's part. To her it is one of the few things she can do to control her environment and those around her to help her live a better life ... to get the things she needs to stay alive.
I hope that is helpful to some and I also realize that for others the brain has in fact deteriorated and it is a whole different story. In my mom's case she knows exactly what she is doing and she admits to it when we talk it through...
So, let's all keep sharing our very different scenarios because some will match and some will be different. It is all helpful to me to understand the giant spectrum of what we are experiencing.
Thank you all for being here and for continuing the dialogue.
If I'm careful and alert I can stop things before they start, but I'm far from perfect. Just saying .... It's good to hear your story and to see that others have similar experiences. Thank you for sharing! Have a nice weekend.