When dementia begins to take over.

Continue to find strength in the Lord...He has enough for all of us. You have to forgive yourself before you can forgive others. You have done what you could. Your Mom made her own decision. God bless you.

God bless and keep you and your family. All who read this should keep a journal of the changes in the behavior of our loved ones for several reasons: (1) it gives the physicians evidence to work with; (2) it de-stresses the caregiver when you write down their actions and your feelings; and (3) it leaves information for family to assist you when needed; and, (4) it gives you a progression and pattern report. When I began our journal, it was just before my husband's brain tumor removal and the behaviors that led us to take him to the doctor because there was no falling, seizures, headaches or obvious physical changes. Afterwards (for the past 4 years) the journal entries have become less but the difficulty finding the right words to explain what he wants to say and the names he calls things is increasing while the hallucinations have decreased as we stopped certain meds with hallucinatory side effects. Keep a positive attitude and greet each day with the anticipation of the opportunity to put a smile on your loved ones'f face and those of others around her as well of anyone else you encounter. Blessings.

I agree wholeheartedly with mamare...keep a journal...evidence of what is going on day to day...especially the changing behaviors...note any stressors that might be the cause...change in meds, upset tummy, etc. Change is hard for all of us, but for older folks, even those without dementia or any form of cognitive impairment, make any changes much harder...Even new towels, put in a different place can trigger a negative reaction.

"Having an older brother who was bent on correcting my mother frustrated me to no end. He was convinced of so many untruths about her that I would just shake my head and walk away from him. It did no good to "discuss" the point with him. All that did to her was make her angry and I also saw the depression growing because she was reminded that she was not thinking clearly."
...@CARobinson: OMG! This paragraph of yours that I quoted above is as though you were taking a peek into my mother & brother's interaction; he keeps inserting his ego and need to be right into any conversation with our mom--without acknowledging that she's not capable any more of maintaining logical, linear thought. I suppress my impulse to whack him (we're Irish) when he gets her upset, and just suddenly and firmly move her away from his unhappy presence. Luckily he's moved on, and doesn't visit--I've had two people tell me how much more peaceful mom is now.
Thank you for your post;and your good, pragmatic and faith based attitude...although Faith drives many people nuts because by it's very nature it's unquantifiable (you can't measure it by conventional means), it gets us through some staggeringly hard and sad times---and if we're lucky, with some good, non-mean humour to help us, too.
Go with God--He's ALWAYS with you.

So what is your question for the community? Why wasn't someone watching her NOT take her meds?

Thank you for you insight as a caregiver. I understand the situation that you explain of your mother not taking her medication. My mother will not take her medication unless I am there giving it to her. She will look at it and read the note to take it but then turns away and goes on to something else. We as caregivers can only do so much, we can't stuff it down their throats.
As to the comment above unless you are the one in the situation you should not pass judgment, we can't tell the whole story in these blogs.
I am a caregiver to my mother with Alzheimer's and have been for 4 yrs.
The family does not help with care, they are busy with work or live far away. I am at her house everyday and I also work.
I know if I needed it my mother would be there for me as I am for her, that is what keeps me from crying and other times I just cry to release stress of the day.
Journaling is a great suggestion I will do that starting today.
Thank you for all you comments. God Bless

The need to be right, thing. Before my father passed, my brother used to admonish my father when he would sometimes ask the same question twice. It was my brothers lack of patience and ability to be easily irritated acting up, but it used to break my heart. He would also fuss at him when my father would try to "help" with things. My sister and I felt that my brother obviously had unresolved "issues" with my father, that he was still working out, but it wasn't fair. I have to admit, when I first became caregiver for my mother, our issues came out, as well. It was a matter of my having been the "baby" of the family, and never having been treated as anyone less than "the baby" When my mother reached that place where she required a caregiver 24/7 it wasn't easily accepted by her. Oh, she knew she needed the care, she just didn't realize the humility that would be required to allow someone to care for her. In other words, she couldn't be "the boss" anymore, as someone needed to be in control to assert the way some things had to be... like taking meds, doing the exercises, eating, etc. But, it was quickly and unexpectedly that she landed that way, due to an auto accident. Without a doubt, she went through the sad places of having to be dependent on someone else. And horror or horrors, it was me she was now dependent on! Lol! She loves me, oh yes she does, but her ideas of how this was gonna happen just weren't the best in the world. She, essentially, wanted me to be her "mini me" ... when she wants her feet to move, I must get walking, whatever she wants, my hands must getting moving... etc etc etc. In other words, she wanted me to be her puppet. Nah, don't think so! But I gave it my best shot :D I really did. Until I realized that wasn't healthy... for either of us (by way of, if it's not healthy for me, it surely isn't going to turn out to be healthy for you, in the long run, seeing as I am your caregiver ;) So, the first steps were really rough. It's been only a year since her accident. And so her slow decent into some areas of confusion have been, well... nothing less than confusing? So, I'd take offense at some mean and hateful things she'd say to me. Mother is old school. She believes that she, as the mother, can speak to you any way she pleases, and no, you don't talk back! I'm of the newer way of dealing with relationships, which is ... if you are my mother, you should be teaching me how to relate in a respectful way... you respect me, as a person, as a human being, and I respect you... you get back what you put out kinda thing. So, some of her comments caused some discord, needless to say. It was no easy marriage, as she and I had been, always, at the opposite ends of just about every way of seeing life... from religion to politics and everything in between. I didn't grow up with any healthy sort of self-esteem. By that same token, my mother had none, either (my dad, God rest his soul, we all miss him so much) treated my mother quite shabbily, emotionally speaking. But they loved one another.

Anyhoo, it took some time for she and I to work through the initial spot, and gosh knows we both did some crying. Bottom line is, there came a time when we worked through it enough, enough, already. I think part of reaching the end of that "working through it" stuff was when my siblings finally FINALLY saw that she was a a wee bit manipulative, worked us against one another, and didn't always tell the precise truth (part of her "workin' it" technique)... well, once they saw a side of mother that only I had ever seen, then I felt I'd somehow been not only vindicated, but now her actions had finally confirmed all the things which they'd not been witness to, previously. that I'd spoken of. Well, so there came a time when there was a thin line between what was old issues and her just being plain mean, and of what was a matter of her mind entering into that uncertain place of decline. It was at that point, that I was finally able to be in the place of "letting her be" so to speak, as a good friend had suggested... and of finally taking control of the situation. My sister had said once, "Well, you have the advantage, sis, you are in control, not her." She was right, of course, but I didn't feel it, as I was too beaten under, emotionally, to recognize anything, other than that she was still treating me, emotionally, in a way that was not fruitful for myself. But, now that we've turned the corner, I have taken the reigns.

I want to make sure that everyone is aware of the fact that UTI's, (any sort of infection, I supposed?) which often go undetected, can mimic dementia-like symptoms. Her neurologist first told me that, as we are, as we speak, still attempting medication changes to help control her Lance Adams Syndrome (which effects her speech, posture, and ability to walk)... and of course she is sensitive to medications, and med changes, and there's a fine line in balancing those meds against her many medical conditions... and then you throw a UTI in there? It's been a long haul, but we keep trying. The meds effect her thinking processes, as well, of course. Whereas one doc said that UTI's do NOT effect her mental state, I'm here to say that I've been it, witnessed it with my own eyes and ears. Not only did the neurologist say it, the ER nurse said it is the leading cause of confusion in the elderly... and then I also read it in an online article (may have been this site, not sure). Also, a friend of mine's mother was diagnosed with Lewy Body Dementia, and it turned out that she was being given meds for some other condition that she had, and those meds had caused her to display the symptoms which led to the Lewy Body diagnosis... when they got her off those meds, which had been wrongly given, she returned to her normal state of a clear headed individual who just happened to be elderly. I feel to tell yet one more account, of an fellow here, in town, who had also been diagnosed with altzheimers (never could spell that). Turns out he had a chemical imbalance, medications took care of that, and he returned to his old self.

The language issues can sometimes be reversed if the dementia like symptoms are being caused by something as simple as a UTI. Doc said that sometimes when you are chronic with UTI's that they sometimes don't show in a test, but nevertheless it's still there, lurking. Not sure how that can be, or how that plays out, but food for thought. But, I looked the language issues up. There are names for the different types of ways of mixing up language. I what I wanted to say here is, even though my mother was talking gibberish a couple of weeks ago, to where she couldn't think of the word she was trying to say, nor was she able to articulate a complete sentence, she WAS ABLE TO HEAR WHAT WAS COMING OUT OF HER MOUTH AND SHE KNEW THAT IT WASN'T WHAT SHE WAS TRYING TO SAY

... ooops... it sent... but not finished... so will continue...

... continued.. she knew what she wanted to say, but could not formulate the words. So, it was funny, actually, for her to hear what was coming out of her mouth and there was nothing she could do, at the time, to to change that situation. It was extremely frustrating for her but , in the end, she had to laugh at herself. That was one sort of language issue. The other one was that she could formulate words into articulate sentences that made perfect sense... the problem was, the sentences had nothing to do with what she was actually trying to say... and once again, she could hear what she was saying, knew the words were not what she had intended to say... yet she could do nothing about it.

Since getting her on the antibiotics, the gibberish has gone and she's now able to speak the right words and sentences necessary to get her point across. She does, however, still have "confusion". And I don't know if it's a natural progression of aging (she's not been diagnosed with dementia or alztheimers, ect) ... or whether he confusion was caused by the infection... and I'm still anxious to see if any more of her confusion is going to go away... and, in fact, curious to know whether the infection caused any permanent confusion, accelerating further decline in her mental faculties. She's having trouble with names right now. She's also having trouble remembering that my first name, my middle name, and my nickname are not separate people ... sigh... of course we make great fun of it... she's "trusting" me, at least.. and since our family has always acted with a sense of humor, I did for one brief moment tell her that she had triplets, and each of those names ... lol... well, I did laugh and set her straight...

When she gets in those states, I very patiently give her the details, and we often talk through those places, and try to find ways to identify where the confusion is...was she dreaming, was there another person in the house, whose voice she heard, was the television on (dogs barking on the tele, as well as the phone ringing on the tele often have her thinking they are real). .. when she was barely recovering from her accident, she had vivid dreams in which she'd swear to things which couldn't possibly have happened... and we taught her how to recognize, or rationalize out, whether something really happened... first thing was, would it make any sort of sense that this thing happened... if id didn't, she knew it wasn't real.

We are looking into a more forward thinking doc than the one who said that UTI's don't cause confusion. As well, I want to say that I am ADD/ADHD (adult diagnosis late in life) ... one of the symptoms of my condition is that my brain cannot separate the layers of noise... let's say like background music on the television show or the music on the commercial... to an add'er the background noise can sometimes sound as loud as the movie or whatever it is that's playing... then add, to that, any conversation going on in the room, between two people. It can be maddening. As well, I have an acute sense of hearing, so I can even hear sounds that others with normal hearing do not hear.. All this to say, the brain is a wondrous and mysterious thing!

First and foremost, make sure you have your loved one checked out for any sort of infections. Google it, read about it, don't just believe me. Secondly, find ways to help your loved one keep in touch with reality, by helping them identify whether something is real or not, don't just pass them off as being a goner... and since I've come to witness my mother's own confusion with speech, I'm here to say that if she can hear her words and know they are not right, then she's certainly not a 'goner' ... there's a block somewhere, preventing. her from speaking right... and thirdly, find a way to help them deal with the decline. We've chosen humor. In my opinion, it helps keep her terra firma if she's made aware of the confusion, rather than passing it off as "oh, well, we'll just play this little game with her and go with it"... in my opinion, if we leave them to go down that road, they may never come back. And what a painful place for them to be. There may come a time when I have to do just that, but we're not there yet. She was giving me a hard time the other day and said, "And who are you?" ... I said, "who am I?" ... she said, "Yes, who are you?" ... it was almost like a 'who do you think you are kinda question' ... and so I asked her, "Well, who are you?" ... and she boldly spat out her name... then asked again, "And who are you?" ... I looked her in the eye and said, "I'm Jackie Onassis!" ... she fell over laughing. She knew it wasn't so! I just try to find ways to smooth over the humiliation the confusion causes.

Thanks for listening.

P.S. I'm sorry, it's been 2 years since her accident.. only about 16 months since she came home and I became her caregiver.

CARobinson, God Bless you. Your story is so incredibly familar and spot on.

Yes, when does it all really begin? You have had many good responses.

Most family members (who ocassionally visited) are as clueless as most Doctors and many nurses that are not trained, and/or have "hands on" experience. Text books only go so are.

You made a decision for the type of facility to provide care for your Mother. You did the best you could, far more than most. Please don't be hard on yourself at this time. Not everyone can be a 24/7 caregiver, and incorporate a total "hands on" to the patient. And, you can't be watching when someone else is being paid to watch. Don't be upset with the meds situation, and I disagree with one respondent that asked "Why wasn't someone watching her NOT take her meds?" My goodness, back off with this kind of response. An assisted care facility doesn't watch 24/7. A nursing facility doesn't watch 24/7! You may be dealing with human beings that don't not like their jobs...and that is a fact. And, there is such a thing as "pocketing" pills/meds..with the person not swallowing..rather kepts them in their mouth...only to spit out after the person leaves. I know, I experienced. I also know that you can turn your back for five minutes...and in my case...my Mother bolted out the front door. Then it was door alarms..and baby monitors. And yes, UTIs will create an imbalance that few talk about or advise on, in advance. I had to also monitor a britle diabetic, so I was always on guard to understand behavior (drop in BS level) and eliminate, by process of elimination as to what was at stake. It was like being on a roller coaster ride, going down a fast one way track.

And you are right... "It was almost like watching a dual personality emerge and disappear." Experienced as well..like a Dr. Jeckel and Mr. Hyde. I know how difficult this was to experience.

You are doing the best you can. The family issues will not likely go away. It's a tough situation..just keep up with your diligence. You will not regret what you are doing. Marco40

Oh please forgive me, I didn't carefully read the last bits of your post and I didn't realize you were going through the last days. I sometimes run through reading very fast (part of my add/adhd). I surely did not mean to disrespect you, with my long posting, and ranting about some of the causes of dementia., as you are grieving. We went through that with my dad, he was on morphine to ease his pain. I know exactly what you are going through. My mother is not happy, either, and I understand that depression is common when our elderly parents suddenly become dependent on others, My mother was a very active little lady, involved in numerous lady's organizations, so it really was an adjustment. Her license wasn't taken from her, but it expired. I had also read that losing the license was sorta like the last straw, the ultimate let down, because that truly did mean they were dependent on someone else. For us, well at least for me, since my brother isn't involved in her care, beyond sitting for a couple of hours, on occasion, while I run errands, I've promised her that I would never put her in a nursing home. She promised my dad that and she kept her word. For that, I have dedicated myself to that, for her. But, I understand that not everyone can do that. I only pray that, when my time comes, I just pass away quickly, so that I don't put my kids through making those decision, especially since I don't have any daughters. I wish you the best of luck,. God Bless

@RidingTheWave, not only can "not every one do that" (keeping a loved one at home) but it is not always the best option even if it can be done. I promised my husband that I would never abandon him, but we talked several times (in his more lucid moments) about the possibility that he might need more care than I could provide. I am glad that he could stay in our home the entire 10 year dementia journey and die in our bedroom, but I would never have insisted on that just to keep an ill-advised promise if it had not been also best for him.

I don't think you know EXACTLY what anyone is going through. You know what you went through, and it may have been similar. But we each bring our own experiences, beliefs, hopes, fears, and strengths to each situation and no two situations are ever exactly alike.

(((((AHUG))))) for Riding the Waves and your wonderful sense of humor. You are an inspiration to me! And thanks for the word "manipulation". That will help me explain things when I get a chance to state my case, as it were. Blessings.

The use of the word "exactly" was an expression that I almost edited out of there, because folks frequently get "dinged" for using the word when identifying with another's feelings.... but decided to leave it in, just to express my point. Sometimes I just don't feel like being precise, and most of the time the other folks don't mind, either.. I have one friend who dings me whenever I say, in the middle of a conversation, "but seriously, now." He says that he assumes when people are conversing that they are being serious, so then does that mean they weren't being serious before they said that? Good grief, it's just an expression. And no need for him to waste energy pondering, in clouds of self-imposed confusion. In the end, I think it's more of an anal thing for him.

I certainly never intended to imply that anyone should follow my path, and I hope that no one got that impression. Everyone has to access their own situations and evaluate their options... I certainly agree, all of us do not have the same options. And it's a fact, staying at home is not always the best option, for the convalescent. I didn't say all that because I assumed everyone knows their own situations, whereas I was speaking of mine. Sorry for that. I can only hope and pray that things will fall in such a way that I can.

dementia patients lose their nouns first.
" dual personality " in my mothers case the dementia is beginning to cause paranoid schitzo symptoms. visuals, delusional thinking, calling family members imposters, people stealing from her and trying to kill her. she even feels things that arent real. if she falls she feels a hand on her shoulder shoving her off balance. hearing things that arent real ie; running water..

I sure don't look forward to my mother reaching those stages, if it's going to be anything like when she thought I'd taken her keys (to her lock box) and taken her gun (which was in the lock box). I had to call my brother over (lives next door) to remedy the situation. She was wrong on her accusations but the matter was settled once and for all (wasn't the first time we had issues about her gun). Key out of reach, weapon NOT in lock box, and she doesn't have access to it. In the mean time, she was ready to call the freaking cops!.