To Soozi - that was really a beautiful comment you wrote about denial. It is such a bitter-sweet time for my Mother and I. So many frustrations and then I will glance over at her and see the woman that raised me. The woman that I thought was bigger than life, prettier, smarter and kinder than any of my friends moms. Alas that was many moons ago but buried underneath those wrinkles and old bones she still lives.
It really is a very hard situation to be in.....in my case my MIL showtimes every chance she gets...otherwise, she says very little. I have really had to work very hard to find the patience and even humor in her behavior. There are so many times I want to bury my head in the sand! However, everyday people do not pick up on it like the professionals do and therefore it does make for some embarrassing moments!! I admit there have been many times that I have so wanted to say to her .... YOU are making a fool out of yourself not me. But that's when I quickly remember that she really cannot control herself!! I know if she had ANY idea how ridiculous she was behaving she would be embarrassed. I really feel for everyone going through this with their loved ones. But most importantly WE must remember.... its their condition. K
we are so lucky to have this site. I never dreamed taking care of my mom would be so tough! it really helps to talk to people who know what is really going on. During the day my mom is going thru showtimers then come nightfall its sundowners until bedtime! and I find myself defending myself all the time. to her and all her so called friends during the day. They just just have no iidea!
To Hadenough and and to all of us who are doing our best in life and care giving, we need to tell our inner critic that yes we get tired, fed up and had enough that we are MORE than enough. Best wishes to us all
I just remembered something I used to do when Mom's repeating got on my nerves. I'd repeat story's too. Just to see what she'd say.... Would you believe she'd tell me ..."Why do you keep telling me the same things over and over, I heard you the first 10 times, I am not deaf you know!!" I got creative instead of angry, I'd make a game out of aggravation or Love depends how you look at it. Oh and while on our way home there was a speed trap in a certain place, so I'd tell her every time we passed that this is where the cops sit to catch you speeding. After a few weeks she'd tell me slow down this is where the cops are remember you don't want a ticket. Sometimes I think she's faking. Sooozi I'm am so happy when my venting does a person good. Thanks for expressing your thoughts. Your not in denial your in mental mania, the patterns that worked yesterday may not work today...mania. I used to think OK I got to remember to do it that way next time, but the same issue was never solved the same way twice. Even though should couldn't remember she had a way to figure out what I was doing to get her to conform. I thought I was 2 steps ahead she'd be 1 lap ahead and pass me. LOL Oh and at the end of the day I would say to myself, I am OK, Mom's OK, the house is a mess but who cares, my family sucks at helping me but that's their problem Karma will fix that. AHHH I love my bed...get rest tomorrows another day! Today was a success!!!
Her research into the use of coconut oil and dementia will transform your life and most likely enhance your relatives' lives as well. If anyone tries it, please let her know your results (of any kind). I'd be interested too. Have been giving it to my 95 year old aunt and many of the difficulties that have been documented here with so many of us simply have gone away. Especially the bad moods, the incessant talking, the sundowning.
I can't tell you how helpful it is to hear from each and everyone on this site. My friends and family are dear to me, but they do NOT have a clue. Even my therapist, who I affectionately call my strategist, is well qualified, but much younger than me.... So she has insight, but has not yet traveled this path in life. So, you my dear AgingCare friends are very special to me and my mental and spiritual good health. Hadenough...it struck me when reading what you wrote that I have always looked up to my Mom. Always thought she was a lady with big light in this life.... So when you said we have to remember they are changing... My mom is not a toddler really, as I write that I know I want to hang on to her dignity and esteemed place in my heart and mind, and so the wild goose chases...and some times, when I am ready to acknowledge she is not the bright, vibrant, power she had been, we may be racing down the wrong path.
The bottom line is that there is nothing in my life right now that can replace this chatting, because you all really KNOW what is happening, and you sometimes show me what may come... See I'm still in denial.... I still think if I, along with my absent family, keep remembering my bright, shining light of my Mom, she will really be that and this is not happening.
I am still able to think things have not changed, and I hold on to the past, then every once in a while I become conscious from the dream, look around and realize I need to get a grip on the ebbs and flows of Moms health and on my own.
Today is a new day and I'm off to a fresh start with a good attitude. Going to make my to-do list and get moving. Just want to be sure you all know that every story you share resonates with me (peeking into moms closets, drawers, mail, paperwork) and I will keep looking for ways to keep moms dignity and to be kind without losing touch with the way things really are...
Mostly, I ... We have to also remember to be kind to ourselves, with a bit of butt kicking exercise, clean, healthy food, lots of water and loving friends so we can be bright lights and powerful advocates for our dear, sweet moms....
Hello All!!!!! Mom gave me another story to share. Yesterday while I was visiting Mom was in an OK mood. That means she didn't tell me to "get lost". Most of you would love that...Right! I really think she knows that I am the one she can't fool, I see through her B.S. , but she also knows I am the one and only that will kick butt for her, well that is if she can't do it herself. So she has to make sure I don't take over unless it's necessary, that would mean she's given up. So I am in her room at the NH, I made the mistake of opening her closet, I was check her clothes, I try to see if and when stuff disappears. I asked her if I could look, and before she answered, I opened the door, she say's "Do I go to your house and go through your closets?" I say "well, no you don't." She says "so why do you come here and do that to me?" Right at that moment I realized that she is trying to hold onto herself her identity and what ever she's got left in the world!!!! She was absolutely right... who was I to go into her things? Then I asked her if she wanted ice cream she said "no" I said "since when do you not want ice cream?" She said "OK" I came back , she says "OOOO that's for me, I said "all for you!" she sat on her bed Indian style, like a teenager." I watched her enjoy her favorite thing" but.. as I was thinking Wow she is really at home and comfy right now, she asked me "are you comfy, is that chair OK, do you have enough room?" "then she said I like my home, when I am here, I am so busy you know." Her reality now is not about the world around her, or who is in it, it is the need to be herself and to cherish moments she finds comfort in. They come few and far between but this is exactly why I keep on fighting for her.
to hadenough, role reversal is so hard! i TOO NEVER EVER IMAGINE this to happen, I wonder how people do this without taking your mothers dignity away. I still catch myself trying to talk to her as an adult. Its so hard for me to get it that its impossible to rationalize anything with her, its just too deep for her. she really does not get it, she just brushes everything off by saying its all me, I have dementia, not her!!
Here is a hug to Sooozi. That is so my life and experience with my Mother. I am just starting now to realize about the "wild goose chases" because she is my Mom and I am trying to please her. She will hear about something and get a wild hair that she has to have that thing or do that thing - whatever. She expresses such urgency that she fools me at times. I have to remember that I am dealing with a toddler and not the Mother that I have known all these years. So even though it is hard to set boundaries with her for my sanity I have to. So hard and heartbreaking at times.
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.
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.
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)
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
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.
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.
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.
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.
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.
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.
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!!!!
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!
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.
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.
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!
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!
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.
Best wishes to us all
Oh and while on our way home there was a speed trap in a certain place, so I'd tell her every time we passed that this is where the cops sit to catch you speeding. After a few weeks she'd tell me slow down this is where the cops are remember you don't want a ticket. Sometimes I think she's faking.
Sooozi I'm am so happy when my venting does a person good. Thanks for expressing your thoughts. Your not in denial your in mental mania, the patterns that worked yesterday may not work today...mania. I used to think OK I got to remember to do it that way next time, but the same issue was never solved the same way twice. Even though should couldn't remember she had a way to figure out what I was doing to get her to conform. I thought I was 2 steps ahead she'd be 1 lap ahead and pass me. LOL
Oh and at the end of the day I would say to myself, I am OK, Mom's OK, the house is a mess but who cares, my family sucks at helping me but that's their problem Karma will fix that. AHHH I love my bed...get rest tomorrows another day! Today was a success!!!
The bottom line is that there is nothing in my life right now that can replace this chatting, because you all really KNOW what is happening, and you sometimes show me what may come... See I'm still in denial.... I still think if I, along with my absent family, keep remembering my bright, shining light of my Mom, she will really be that and this is not happening.
I am still able to think things have not changed, and I hold on to the past, then every once in a while I become conscious from the dream, look around and realize I need to get a grip on the ebbs and flows of Moms health and on my own.
Today is a new day and I'm off to a fresh start with a good attitude. Going to make my to-do list and get moving. Just want to be sure you all know that every story you share resonates with me (peeking into moms closets, drawers, mail, paperwork) and I will keep looking for ways to keep moms dignity and to be kind without losing touch with the way things really are...
Mostly, I ... We have to also remember to be kind to ourselves, with a bit of butt kicking exercise, clean, healthy food, lots of water and loving friends so we can be bright lights and powerful advocates for our dear, sweet moms....
You have inspired me! :-)
So I am in her room at the NH, I made the mistake of opening her closet, I was check her clothes, I try to see if and when stuff disappears. I asked her if I could look, and before she answered, I opened the door, she say's "Do I go to your house and go through your closets?" I say "well, no you don't." She says "so why do you come here and do that to me?" Right at that moment I realized that she is trying to hold onto herself her identity and what ever she's got left in the world!!!! She was absolutely right... who was I to go into her things? Then I asked her if she wanted ice cream she said "no" I said "since when do you not want ice cream?" She said "OK" I came back , she says "OOOO that's for me, I said "all for you!" she sat on her bed Indian style, like a teenager." I watched her enjoy her favorite thing" but.. as I was thinking Wow she is really at home and comfy right now, she asked me "are you comfy, is that chair OK, do you have enough room?" "then she said I like my home, when I am here, I am so busy you know." Her reality now is not about the world around her, or who is in it, it is the need to be herself and to cherish moments she finds comfort in. They come few and far between but this is exactly why I keep on fighting for her.
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.
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 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.
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.