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.
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!!
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.
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....
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 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!!!
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
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!
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
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.
I posted on this thread when it first began.... about S walking right when the Nurse was there, yesterday, same thing, he will NOT pick up his feet,and it is so frustrating sometimes when I am in emergency mode to tend to M.... yesterday I asked his HH RN to get him to walk so she could observe ... and off across the room he went...... this time I didn't think it was funny...... so today when he started that and I needed to get down the hall to M, I put him in the wheelchair.... !!!! So who knows, he is in stage 7 of Alz.... go figure....
It's true that they are like this. I'm not even sure they understand what it is they are doing, but they are on the best possible behavior and in my mothers case she is very witty!! Anyone who meets her for the first time or family members that only spend a couple of hours with her are all so surprised to hear she has Alzheimer's. I let her have those moments, they are important to her at the moment and they are no skin off my back. Her doctors and family know what's up and if I get any problems from family members who are not sure she really has Alzheimer's I simply tell them to come for a 3 day visit and take care of mother and then we will discuss it. :-)
Same here..my mother is a "master of disguise"..to her friends/acquaintances my mother appears normal and has it all together..little do they know what I am enduring here..
EXACTLY! Even a person far gone into dementia, at some level, still knows some things. They will somehow try to communicate ideas/wants, if they ever knew how to in the first place. But mostly, a person will do everything they can, to keep others fooled into thinking they are OK. That is why those who have had a stroke will often try to pretend they are fine; why any animal tries to cover their injuries/illnesses/defects: IF a creature admits/shows illness/injury/defects, they become instantly vulnerable to attack, or perceived attack. Creatures do just about anything to cover up weaknesses, to protect themselves. It is driven by "Basic Survival Instinct" [lower brain function], which all creatures have, which can operate fairly removed from conscious control.
I have learned more AFTER Mom got moved out, than I ever knew before...
==NOT all health care practitioners are savvy that someone with a Dementia, can be a terrific Showtimer: making the leap from knowing that, to recognizing it, stumps too many. ==Not all health care practitioners [or anyone else!] can do good assessments, nor do they really seem to care: IF something is a bit outside their knowledge or experience base, people tend to ignore it; it does not register as significant, or, it registers as a frustration, not something that needs done anything about. ===Recognizing & labeling an elder with dementia, has personal ramifications for practitioners and family members: people want to believe it really isn't happening; they want to help the elder keep going as they always have--it helps others keep believing things are not so bad, & subconsciously, it won't happen to them, personally. ==Harder, is trying to discern where an elder's lifetime-dysfunctional behaviors, leave off, & dementia begins. ==FAMILY, who have known the elder all their lives, can be fooled, or do not want to admit it, as it might mean they are also at risk; OR, are angry at the caregiver &/or the elder: they call it "paybacks", & do whatever they can to make things even more difficult for the caregiver & the elder.
In our family, my siblings KNEW about Mom's behaviors, yet, did so many things that totally blocked getting her the proper help she needed. They needed to step up to the plate, & encourage Mom to go along with getting evaluated & helped, instead of blocking my efforts at every turn. Now they wonder that I no longer speak with them, unless it is in the briefest terms, only as necessary?
Beware relatives who say/do things to block the elder getting helped, such as: ---Sibling comments AFTER-the-fact: "Why did you move Mom to your place? She could have stayed with us!" [never mind Mom begged me to take her in, AND, the others refused or avoided to keep her at the time Mom needed moved..the suggestion was that I was railroading Mom, or denying them access...] ---"Why do you need to tell the Doc about Mom's drinking? " [& contacted her Docs, telling them she is totally fine, always has been, & telling Docs the caregiver is crazy...] ---"Why do you need to tell the Docs Mom used drugs in the past? " [never mind Mom has repeatedly demonstrated drug-seeking behaviors & used pills to try suicide in the past] ---"Why do you need to tell the Doc Mom has had suicidal behaviors or thoughts in the past, or now? " [as if that behavior does not repeat?!] ---"It's your fault Mom had to go to ER for bleeding polyps"; or, never got treated for other ailments she refused to be seen for... [& helps hype Mom up about that, via phone calls]" ---"Let Mom buy whatever she wants, she deserves it" [despite her history of mega-hoarding, they encouraged her to do so via phone, & told me I should allow/help her do it]" ---"You took Mom's money!" [Even though Mom had history of known, recorded behaviors of mishandling large amounts of cash all her life, hoarding/hiding/losing/giving away to strangers & other family...] ---"It's your fault Mom cannot get around." [despite her long-standing incapacity for getting licensed, driving, paying bills to upkeep a vehicle; on record of being kicked off a Senior transit bus...] ---"Just leave her at home; she'll be fine--we left Mom to herself lots of times.." [a short 3 month stay at another relative's][Mom was moved out of that there, & the bedroom was immediately stripped & converted to other use--yet that relative claimed "no problems, we got along fine"; ---"Just let her do things her way..." [Pool stove burners/top with oil? Leave stove burners on? Leave frying food untended on stove while she gets side-tracked watching TV for hours? Flush cloth rags down toilet? Keep open & rotting food in her room? Allow her to hoard-pile the house? Burn open candles in her 6' high-hoarded room? Set out rodent poison next to open food in her room? Allow her to bleach-soak her pottie bucket in her closed, unvented room, while she sits in there?.....her way. Yep, that'll do'er!] ---Encouraging Mom via phone calls to say/do things to "help her cope" with things they knew nothing about, regarding people they didn't know much if anything about, including setting up "interventions" like they watch on reality TV... ---Via Phone calls, revving Mom up with emotional, global generality statements, then goading her to act-out; ---Telling Mom, via phone, to keep to herself [she already drastically isolates], as a solution; & help her choose to avoid trying to mix with other people or go to Senior Centers, etc. ---Encouraging her to buy/collect stuff to build a rustic cabin out in the woods--though she has never managed very well in a civilized setting! ---etc.
I wish I'd found Aging Care long before Mom was moved out of our home. It could have really helped in finding help we needed.
I pray you learn much on these pages; people have shared so much of their knowledge and experience, as well as given good reference to helpful agencies and methods. It is too late for our family, but hopefully not too late for yours!
Wow! Chimonger, you're writing my history! It's so nice to find people who are experiencing the bizarro world that is living with a parent who has dementia. Thanks for your comments.
I cringe when I take my mother out. She will say things to people that are absolutely horrid, like my father died of COLON CANCER 15 years ago, I was living out of State and they visited me and he was sick, well, he happened to DIE while he was visiting me out of state. So, a few years ago, at a hair dressers appointment, she was making a bunch of jokes about me and had the whole salon laughing..I mean rolling at my expense, fat..stupid you name it kinda jokes, not nice comments, and then she pulled the biggest punch,,saying you know I really love my daughter, even after she KILLED her father...the whole room went silent..I had to step in and tell them, she blames me for the fact he died as she was visiting me from out of state when he died, somehow she believes if he wasnt visiting me he would still be alive..which she actually believes I guess.. When I take her any place I cringe about what little jewels will come out of her mouth. And she looks very sane and when she is out she too is like all together. When I get home, I used to confront her about all the ugly things she said and she says..I did not say those things, why are you such a terrible liar? uhhhhhh, now I just cringe, cause I know its coming. And the public not being to knowledgable about dementia, thinks I am a real creep...Ill just crawl under my rock now..bye...lol
ElderlyandADHD, I'm sorry you have to go through such pain and embarrassment. I experience similar humiliation from my mother. The worst is what you mention, everyone thinking that I'm the villain or the liar because my mother is such a master at covering her tracks and acting the part of a normal person. The lying can really get to you and when confronted the constant denial can make the caregiver feel as though she's going mad. I know.
Me, too! When I first started caregiving for my mom, I had a few meltdowns that resulted in my mother comforting me and acting like, gee you're realy upset about something, what's the matter? (really wanting me to talk) and when I would tell her what she did, she would absolutely deny she did those things. I tried telling her to at least say, "I don't remember doing that, but if I did, I'm sorry", and I think I actually got her to say it once or twice, but eventually telling her what she did or expecting an apology became futile (so did meltdowns). In her earlier stages, one of her favorite things to say, when I was trying to help her with something I could see her struggling with, or doing wrong, or doing dangerously, was (in a real put-down tone) "Karen, how many years have I been (cooking, cleaning, ...you fill in the blank)? And how many years have YOU been (...cooking, cleaning, ...you fill in the blank)? ....? As if, by the time I'm in my 50's, I still would not be as good at simple, basic chores as she was. One of the first times she did this, (back when she was able to look normal in public) we were grocery shopping, and there were heavy items in the bottom of the cart. We were at the checkout stand, and she was putting the items on the conveyer belt. I said, "Here, I'll help you with these", and reached into the cart to get the heavy items out (she had been complaining of a sore back, and I knew they would be too heavy for her). She said, in a loud voice so everyone would hear, "Karen, how many years have I been grocery shopping?.....etc., etc., etc., ....? You could hear a pin drop, the cashier and all the customers around were staring in awkward silence. I stepped back and let her do it, and when she tried to lift the heavy items, she said, in a whimpery tone, "Would you please lift these? They're too heavy, and my back hurts" (implying I had been neglectful, and should have offered to help!). I sighed and helped her and got us out of there as quickly as I could. Of course, afterwards I thought I should have said, "You're the expert, You don't need my help. Do it yourself!"
Kabeeena, Because of episodes like the one you describe (I've been through similar public embarrassments), I dread going out in public with my mother. Of course, no one in my family will acknowledge my nearly unbearable situation, because it would imply they would have to help me or that my mother actually was mentally ill and that might disrupt their cushy lives.
Kabeena, that is part of it--that is part of the elder's attempts to keep up appearances--at all costs--& they do not care, at who's cost it is. THE Prime Directive is to keep up "normal" appearances.
IF they remember they said rotten things, it somehow instantly morphs into more neutral words in their memories. OR, they call another relative, to off-load their guilt. Mom used to say/do rotten things to someone, then call me to confess "I think I really hurt so-and-so's feelings....etc." BUT--would NOT usually say who's feelings, nor exactly what she'd said or done. Knowing her, I had a pretty good idea what it was, if I knew who. I learned the hard way, though, she NEVER intended me to contact that target person, she only wanted to confess to someone....never to say she was sorry to that target person, just lighten her own burden a bit by "confessing" to someone else [she was not even raised Catholic!]. The times I made the mistake of contacting the target person to let them know how badly Mom felt, how contrite, ended up getting back to Mom, & turning me into the target. This is all part of "Basic Instinct drive" to cover up their weaknesses.
ALSO, when they are driving on you, they use whatever they know from your personal history, that can cause emotional harm--they know you too well, & use it as verbal/emotional weaponry. I had family sitting right here, who couldn't understand why/how Mom could tear me to bits so easily. Honestly, I cannot figure out how she did it--never could. No training in communication skills, no coping mechanisms, no experience or education, helped me reduce the verbal [& sometimes physical] hits she delivered. Over a year later, still trying to sort out & repair damages from her onslaughts, & from family shunning. Bottom line, I had to choose to take a different path than they seem happy staying on. Since I am making healthy changes, & refusing to allow getting "hooked" into their behaviors anymore, it's helping me feel better, &, funny thing, THEY are now accusing me of what they have been perpetrating. ....& their beat goes on. Grieving loss of family is overwhelming; I not only lost Mom [never had her, really], but have lost the tenuous family connections with siblings. Now though, after observing what has gone on: they all spent more time with Mom all their lives than I had, & they therefore took on more of her behaviors than I had. They choose to stay that way. I choose change. That always means something's gotta give--either they will "wake up" & choose differently too, or we stop relating as a family & part ways. It seems the latter is what has happened. I didn't close the door, they did, so it is on them. Not going back to bedlam.
I still keep praying for them, and for me, too, for healing. It's the best I can do, and most neutral thing possible. I can only change me; can only operate on what I know.
Do you remember that day at the doctor when you were told your loved one "has dementia and she's going to lose her memory." Memory is actually something that started as soon as you were born and it means literally, everything you can do. Walking is memory. Being able to dress yourself is memory. Driving a car, shopping, cooking is memory. Its everything we do, from chewing and swallowing food, to recognizing pain in my lower tummy mean I need to go to the bathroom. Memory is my ability to find the bathroom, unfasten my clothes, use the toilet, clean myself, put my clothes back on correctly and return to what I was doing. One of your oldest and strongest memories is the "social conversation." You use it all the time. A stranger says "Hi, how are you?" Without thinking you answer "I'm fine." It's your social skills at work. They are an almost automatic response. Your loved one comes from a generation who have great social skills and that's what skill she is using when she's out in public. She may even use humor as a part of her social conversation and this allows her to appear to be functioning at the doctor's office or grocery store. She learned it as a young child so it is a deeply rooted long term memory. In time, as the disease process continues, the social conversation will become shorter and shorter and will finally disappear as her language skills cease. In the meantime, she will fool doctors, neighbors, her children, etc., and in doing so may drive you to distraction.
THANKS, LuckyDog55! That has been my problem for many years now too. I am the 59yr old kid. I am the idiot. She will back out of things with salesmen or church people, etc., and I have to patch it all up.
Kabeena, You make some great points. I relate because I seem to going through what you are or what you went through. I know that the only way I can save myself is to move away from my mother and my family. They are truly toxic to me. Plans are afoot for me to make my escape.
My husband started a funny routine saying "She hits me" (meaning ME) and then performing as if he was dying of pain. We all laughed merrily and he thought he was so clever. Now he does it all the time, to whoever will listen!! A bit alarming. Fortunately he hams it up and you can see he's smiling so no-one takes it seriously but I am just waiting for the day when someone believes him. He's also very funny when I'm drying him off after his shower. He plays tug o' war with the towel. For some unknown reason I also find this funny. I must be losing it.
MarcWriter: Yes, they are toxic, but escaping is avoiding the responsibility of caregiving, which is what this whole site is set up for. This site is set up to help us cope with caregiving, especially when other members of the family "stay away."
LillyLu, I agree with you that the site is set up to help caregivers and, as of this moment, I am still a caregiver. I was responding to Kabeena who explained how she eventually had to get on with her life to save herself. A caregiver is no good to anyone is she/he is unable to stay healthy and functional. Cheers!
It is also a place to VENT..if I told you how many fantasies I have about escaping youd be shocked..! lol..my favorite song is hungry heart by Bruce Springsteen. like the part..about "I went out for a ride and I never went back, like a river that dont know where its goin, I took a wrong turn and I just kept goin.." It helps me to just belt this out when I get frustrated with caregiving..we all have our coping mechanisms I guess..
Colleen, I got such a tickle out of your husband's antics. Reminds me of my dad, who never lost his silly side. You're not losing it - feel free to enjoy every bit of silliness he gives you! Maybe you should even give him a mock "towel snap" when you win the tug-of-war! Gently, now.... :-)
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.
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! :-)
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!!!
Best wishes to us all
Welcome to the altered universe of caregivers for dementia afflicted parents.
Even a person far gone into dementia, at some level, still knows some things. They will somehow try to communicate ideas/wants, if they ever knew how to in the first place.
But mostly, a person will do everything they can, to keep others fooled into thinking they are OK.
That is why those who have had a stroke will often try to pretend they are fine;
why any animal tries to cover their injuries/illnesses/defects:
IF a creature admits/shows illness/injury/defects, they become instantly vulnerable to attack, or perceived attack.
Creatures do just about anything to cover up weaknesses, to protect themselves.
It is driven by "Basic Survival Instinct" [lower brain function], which all creatures have, which can operate fairly removed from conscious control.
I have learned more AFTER Mom got moved out, than I ever knew before...
==NOT all health care practitioners are savvy that someone with a Dementia, can be a terrific Showtimer: making the leap from knowing that, to recognizing it, stumps too many.
==Not all health care practitioners [or anyone else!] can do good assessments, nor do they really seem to care: IF something is a bit outside their knowledge or experience base, people tend to ignore it; it does not register as significant, or, it registers as a frustration, not something that needs done anything about.
===Recognizing & labeling an elder with dementia, has personal ramifications for practitioners and family members: people want to believe it really isn't happening; they want to help the elder keep going as they always have--it helps others keep believing things are not so bad, & subconsciously, it won't happen to them, personally.
==Harder, is trying to discern where an elder's lifetime-dysfunctional behaviors, leave off, & dementia begins.
==FAMILY, who have known the elder all their lives, can be fooled,
or do not want to admit it, as it might mean they are also at risk;
OR, are angry at the caregiver &/or the elder: they call it "paybacks", & do whatever they can to make things even more difficult for the caregiver & the elder.
In our family, my siblings KNEW about Mom's behaviors, yet, did so many things that totally blocked getting her the proper help she needed.
They needed to step up to the plate, & encourage Mom to go along with getting evaluated & helped, instead of blocking my efforts at every turn.
Now they wonder that I no longer speak with them, unless it is in the briefest terms, only as necessary?
Beware relatives who say/do things to block the elder getting helped,
such as:
---Sibling comments AFTER-the-fact: "Why did you move Mom to your place? She could have stayed with us!" [never mind Mom begged me to take her in, AND, the others refused or avoided to keep her at the time Mom needed moved..the suggestion was that I was railroading Mom, or denying them access...]
---"Why do you need to tell the Doc about Mom's drinking? " [& contacted her Docs, telling them she is totally fine, always has been, & telling Docs the caregiver is crazy...]
---"Why do you need to tell the Docs Mom used drugs in the past? " [never mind Mom has repeatedly demonstrated drug-seeking behaviors & used pills to try suicide in the past]
---"Why do you need to tell the Doc Mom has had suicidal behaviors or thoughts in the past, or now? " [as if that behavior does not repeat?!]
---"It's your fault Mom had to go to ER for bleeding polyps"; or, never got treated for other ailments she refused to be seen for... [& helps hype Mom up about that, via phone calls]"
---"Let Mom buy whatever she wants, she deserves it" [despite her history of mega-hoarding, they encouraged her to do so via phone, & told me I should allow/help her do it]"
---"You took Mom's money!" [Even though Mom had history of known, recorded behaviors of mishandling large amounts of cash all her life, hoarding/hiding/losing/giving away to strangers & other family...]
---"It's your fault Mom cannot get around." [despite her long-standing incapacity for getting licensed, driving, paying bills to upkeep a vehicle; on record of being kicked off a Senior transit bus...]
---"Just leave her at home; she'll be fine--we left Mom to herself lots of times.." [a short 3 month stay at another relative's][Mom was moved out of that there, & the bedroom was immediately stripped & converted to other use--yet that relative claimed "no problems, we got along fine";
---"Just let her do things her way..." [Pool stove burners/top with oil? Leave stove burners on? Leave frying food untended on stove while she gets side-tracked watching TV for hours? Flush cloth rags down toilet? Keep open & rotting food in her room? Allow her to hoard-pile the house? Burn open candles in her 6' high-hoarded room? Set out rodent poison next to open food in her room? Allow her to bleach-soak her pottie bucket in her closed, unvented room, while she sits in there?.....her way. Yep, that'll do'er!]
---Encouraging Mom via phone calls to say/do things to "help her cope" with things they knew nothing about, regarding people they didn't know much if anything about, including setting up "interventions" like they watch on reality TV...
---Via Phone calls, revving Mom up with emotional, global generality statements, then goading her to act-out;
---Telling Mom, via phone, to keep to herself [she already drastically isolates], as a solution; & help her choose to avoid trying to mix with other people or go to Senior Centers, etc.
---Encouraging her to buy/collect stuff to build a rustic cabin out in the woods--though she has never managed very well in a civilized setting!
---etc.
I wish I'd found Aging Care long before Mom was moved out of our home.
It could have really helped in finding help we needed.
I pray you learn much on these pages; people have shared so much of their knowledge and experience, as well as given good reference to helpful agencies and methods. It is too late for our family, but hopefully not too late for yours!
I experience similar humiliation from my mother. The worst is what you mention,
everyone thinking that I'm the villain or the liar because my mother is such a master at covering her tracks and acting the part of a normal person. The lying can really get to you and when confronted the constant denial can make the caregiver feel as though she's going mad. I know.
In her earlier stages, one of her favorite things to say, when I was trying to help her with something I could see her struggling with, or doing wrong, or doing dangerously, was (in a real put-down tone) "Karen, how many years have I been (cooking, cleaning, ...you fill in the blank)? And how many years have YOU been (...cooking, cleaning, ...you fill in the blank)? ....? As if, by the time I'm in my 50's, I still would not be as good at simple, basic chores as she was. One of the first times she did this, (back when she was able to look normal in public) we were grocery shopping, and there were heavy items in the bottom of the cart. We were at the checkout stand, and she was putting the items on the conveyer belt. I said, "Here, I'll help you with these", and reached into the cart to get the heavy items out (she had been complaining of a sore back, and I knew they would be too heavy for her). She said, in a loud voice so everyone would hear, "Karen, how many years have I been grocery shopping?.....etc., etc., etc., ....? You could hear a pin drop, the cashier and all the customers around were staring in awkward silence. I stepped back and let her do it, and when she tried to lift the heavy items, she said, in a whimpery tone, "Would you please lift these? They're too heavy, and my back hurts" (implying I had been neglectful, and should have offered to help!). I sighed and helped her and got us out of there as quickly as I could. Of course, afterwards I thought I should have said, "You're the expert, You don't need my help. Do it yourself!"
Because of episodes like the one you describe (I've been through similar public embarrassments), I dread going out in public with my mother. Of course, no one in my family will acknowledge my nearly unbearable situation, because it would imply they would have to help me or that my mother actually was mentally ill and that might disrupt their cushy lives.
THE Prime Directive is to keep up "normal" appearances.
IF they remember they said rotten things, it somehow instantly morphs into more neutral words in their memories.
OR, they call another relative, to off-load their guilt.
Mom used to say/do rotten things to someone, then call me to confess "I think I really hurt so-and-so's feelings....etc." BUT--would NOT usually say who's feelings, nor exactly what she'd said or done.
Knowing her, I had a pretty good idea what it was, if I knew who.
I learned the hard way, though, she NEVER intended me to contact that target person, she only wanted to confess to someone....never to say she was sorry to that target person, just lighten her own burden a bit by "confessing" to someone else [she was not even raised Catholic!]. The times I made the mistake of contacting the target person to let them know how badly Mom felt, how contrite, ended up getting back to Mom, & turning me into the target.
This is all part of "Basic Instinct drive" to cover up their weaknesses.
ALSO, when they are driving on you, they use whatever they know from your personal history, that can cause emotional harm--they know you too well, & use it as verbal/emotional weaponry.
I had family sitting right here, who couldn't understand why/how Mom could tear me to bits so easily.
Honestly, I cannot figure out how she did it--never could.
No training in communication skills, no coping mechanisms, no experience or education, helped me reduce the verbal [& sometimes physical] hits she delivered.
Over a year later, still trying to sort out & repair damages from her onslaughts, & from family shunning.
Bottom line, I had to choose to take a different path than they seem happy staying on. Since I am making healthy changes, & refusing to allow getting "hooked" into their behaviors anymore, it's helping me feel better, &, funny thing, THEY are now accusing me of what they have been perpetrating.
....& their beat goes on.
Grieving loss of family is overwhelming; I not only lost Mom [never had her, really], but have lost the tenuous family connections with siblings.
Now though, after observing what has gone on: they all spent more time with Mom all their lives than I had, & they therefore took on more of her behaviors than I had.
They choose to stay that way.
I choose change.
That always means something's gotta give--either they will "wake up" & choose differently too, or we stop relating as a family & part ways.
It seems the latter is what has happened.
I didn't close the door, they did, so it is on them.
Not going back to bedlam.
I still keep praying for them, and for me, too, for healing. It's the best I can do, and most neutral thing possible. I can only change me; can only operate on what I know.
Memory is actually something that started as soon as you were born and it means literally, everything you can do. Walking is memory. Being able to dress yourself is memory. Driving a car, shopping, cooking is memory. Its everything we do, from chewing and swallowing food, to recognizing pain in my lower tummy mean I need to go to the bathroom.
Memory is my ability to find the bathroom, unfasten my clothes, use the toilet, clean myself, put my clothes back on correctly and return to what I was doing.
One of your oldest and strongest memories is the "social conversation." You use it all the time. A stranger says "Hi, how are you?" Without thinking you answer "I'm fine." It's your social skills at work. They are an almost automatic response.
Your loved one comes from a generation who have great social skills and that's what skill she is using when she's out in public. She may even use humor as a part of her social conversation and this allows her to appear to be functioning at the doctor's office or grocery store. She learned it as a young child so it is a deeply rooted long term memory.
In time, as the disease process continues, the social conversation will become shorter and shorter and will finally disappear as her language skills cease. In the meantime, she will fool doctors, neighbors, her children, etc., and in doing so may drive you to distraction.
You make some great points. I relate because I seem to going through what you are or what you went through. I know that the only way I can save myself is to move away from my mother and my family. They are truly toxic to me. Plans are afoot for me to make my escape.
He's also very funny when I'm drying him off after his shower. He plays tug o' war with the towel. For some unknown reason I also find this funny. I must be losing it.
I agree with you that the site is set up to help caregivers and, as of this moment, I am still a caregiver. I was responding to Kabeena who explained how she eventually had to get on with her life to save herself. A caregiver is no good to anyone is she/he is unable to stay healthy and functional. Cheers!