I wonder sometimes if the things my mom with ALZ says are feelings she has had for years but now she can't keep them to herself.

My mother told my sister she should have let her die when she was born. No, I don't think they mean what they sometimes say. I also think they would be horrified if they knew. Bless you for caring for her, many are unable to do it.

I have had this exact thought! MIL blurted out, when she was picking a fight, "Oh yes, you come from a broken home, you LOVE drama!" . . . . and all I could think was, this is the first I've heard this thought. Has she disliked me because my parents divorced when I was in grade school? Has she had that in the back of her mind all this time (32 years)? Wow.

It really is hard, when something like this or what your mom said comes out, it's so hard not to think there is a kernel of truth at the very core of it. It just doesn't seem like it came from nothing, you know?

[[[hugs}}} Kelly, it has to be so much worse when it's your own mom :(

When we are close to family members we know their vulnerabilities.
Think about it. When you fight with hubby or kids you use NOT what you really BELIEVE. You use what you KNOW will HURT them most.
I once heard the kindest woman I worked with, who loved her sons more than anything and thought each one was perfect, say to the son who hated how much taller his younger brother was, in a moment of exteme frustration "Listen HERE, Shortstop............!" She says she never got over the look on his face, and it wasn't even something she even thought or believed, but she knew it would hurt him. (He's the tallest in the family now!)
If you are pulling out the nasty guns, that's how it works. So it isn't that SHE thinks you are a big muckity muck--it is rather that she thinks saying that to you will hurt you. And hurting you is what it is about at that second. Why? Because she is losing EVERYTHING, including her own power to have ANY control or ANY choice. And there is no upside in all this. This is a long slow slide into oblivion. And she is ANGRY about that. She won't always want to "go gently into this good night". So when she fights, she will bring out the big guns, the ones she believes will land a blow. It isn't that SHE believes it; but she believes it will hurt you. It is "war" pure and simple.
They get angry. They get depressed. They get desperate and they are desperate to be HEARD.
And, hon, I guess you HEARD THAT, right? Oh, my... oh my. A Wilson from Tignall. It doesn't get worse!
Try to see the humor in it, when you are able. I am so sorry. Wish I could give you a hug, because if I know anything, it's that you are NOT one of those "Wilsons from Tignall"!
Hee hee.

I'm not sure, but I think they have not always believed what they say now. I hope not anyway. But they might land on a thought, memory, or imaginary happening, state it and then circle back to that exact statement again and again, so we start thinking that is what they really think of us. My mom used to call and ask me what we had been fighting about. She felt the fight still in her and wanted to continue it, but didn't remember even what side of the fight she was on after I explained the argument. This reminded me of when my mother, brother, and sister fought when we kids were still living with our parents. My dad and I stayed out of their silly fights and when we listened carefully we would find out they were all on the same side of the argument, but just wanted to yell. Some people like conflict.

I used to think that too. Let me me tell you coming from 9 years of experience, you have to let thoughts like that go! It is the disease! Think of her like a child who doesn't know any better and blurts out stupid words. Your mother because of her disease, has lost the ability to reason. She is not the mother you know and love, that mother is gone and she will not be coming back and she will not get better! I am so sorry that you are in the situation that you are in but, that type of thinking harbors resentment towards your mother. Who really cares, what your mother says? Don't correct her or argue with, just let it roll off your back. If she says inappropriate things around friends or family or stranger's, just simply say it's her disease, they will understand and if they don't F them! I know it's hard, I still find myself slightly horrified by some of the things that come out of my mother's mouth. I will get up go hug her and tell her I love you mom, it stops my mother in her tracks! This does get get easier if you can find the humor in what she says and laugh it off. Keep telling her you love her and you are on her side no matter what she says. leave little postit notes on her chair, her pillow on the bathroom mirror, reminding her every day how much you love her, I am telling you it works.

Thank you all for your answers. I have learned to find the humorous side of things when possible. My sister and I especially have to talk and laugh together about some of the off-the-wall things that come along. We both feel that it has been hard to distinguish the disease from our mom. Mama was never a mild-mannered, sweet, soft-spoken lady. She has been more of a tell-you-off-in-a-heartbeat sort of girl. It makes it difficult to determine when its Mama and when its the disease talking. Yes, her words can cut like a knife, but I struggle with not letting it hurt me. The advise you all give makes sense and I will think of these things as we go forward. I am thankful to have others to turn to who understand from experience.....although I certainly wish none of us would have been touched by this disease. Thank you all so much!

Blessings,
Kelly

I agree, I think their filter get's clogged or shut off but my guess is this isn't something your mom has always thought about you, it isn't even about you just aimed that way because your the one there (and "safe"), I think she is probably expressing her frustration with her own current circumstance and she's longing for the time when she was active and more youthful. Yes in a way jealous of all the people around her who are driving their own cars and keeping their own houses, she resents not having that "life" anymore and you just happened to be the one in her way and the focus of her attention. Not about you more about her I guess. Her instinct is to kick and scream, fight it rather than accept and adapt, I don't know what stage is worse honestly, kicking and screaming or giving up... Still not easy for you, her or anyone around you my heart goes out to everyone living through this disease.

My mother has acted that way her entire life, she always wants to keep up with the Jones, and is terribly jealous. She has gotten worse over the years, can no longer control her nasty mouth.

I read that the way they are underneath their social behaviours is the real them, and as they lose the control and ability to bring out the social behaviours so you see more and more of the real person. Not sure if its true but far more carers complain LO become less pleasant as dementia take hold than one ever hears say, my LO has become so nice to everyone since getting dementia. Guess most of us are less nice under our social face if we are honest.

kellyb, your original post entirely hit home, and your followup “Mama was never a mild-mannered, sweet, soft-spoken lady. She has been more of a tell-you-off-in-a-heartbeat sort of girl. It makes it difficult to determine when its Mama and when its the disease talking..”

A really good topic for me too right now, thanks. My mom has always struck out far harsher than she could take, it’s like she never could hear what she said. Now.. worse? Yay! I’m going to reread some of the replies above, I do agree about child-like self protection.

I like classical music and mom does not. A few years back, when the dementia wasn’t so bad yet, she’d asked how can you like it. I said I don’t like it all, my favorite type sounds like a royal procession is about to come through. She said, Oh yes, is that because you think you’re royalty? I just stared at her and let her hear what she’d said. I’m a pretty down to earth person (and who should know that better than her).

My mother always wanted to see me be safe and get ahead, but bottom line she had, and has, to be the better of the two of us (I’m an only child. What I’d pay to have a sister always, and now!). Her only sister dominated and hurt her a lot growing up. A few years ago (at like age 50) I only finally saw that I’ve been the sister in a new scenario and this time Mom wins, she’s the dominant and important one. Still working through it. :) Women can be very hard on each other even in better circumstances.

Now instead of just dealing with how she acts towards me I’m constantly trying to find caregivers because she acts toward them like she always has with me. I’m vindicated! Now others can see what I’ve been dealing with! But it makes finding the people very hard. Ucchh.

KellyB -- what and interesting question and observation! I've certainly thought this about my mother who now has advanced dementia. The things that she has said at earlier stages weren't exactly spot-on, but the connections and threads of truth that were also present, made me wonder if this was the "best she could do" to explain her thoughts. And because a lot of what she said was hurtful, it but made me wonder if she needed to "get things off her chest".

My mom skipped this part of dementia, she went from fully capable to end stage seemingly overnight. What I see in common though is the feeling that we no longer recognize this stranger in our care - I analyzed my whole life trying to fit this self centred, needy person into the picture and began to doubt everything I though I knew or remembered about her. I'm sorry you are going through that.

I think that people lash out when the are under stress in much the same way that a pet will bite it's owner when afraid or hurt. None of us live in a vacuum so we ALL have learned the words and actions that can wound others, we even think about them when we are angry or feeling under pressure - that just means we are human. When our brains are functioning our better self recognizes these impulses as being temporary, cruel and destructive and we don't act on them, with dementia all the filters erode and every nasty thought and action that comes into our head can come out.

It’s strange with my mother. She has accused me of stealing. I have never stolen so much as a grape from a grocery store lol. ( something she did all the time btw) In her case, it’s more like it’s things she has done all her life that she now accuses me and others of doing and on some level knows the truth. She told the neurologist I stole all her furniture ( the same furniture presently sitting in her apartment) and what I “should have done” was take her things like her silverware and store it in my daughters’s basements which is EXACTLY what I did do . So she knew exactly where her stuff is but insisted I stole it. But then again she has lied her entire life. IE , just one of many many examples , I recently found out an aunt who she claimed died playing with a toy stove while my father babysat her ( so warned me never to mention it because it would up set him) actually died of diphtheria years before my father was even born. So she lied just to lie then, like she does now.

Yes, I've been there myself. My mom, who had Alzheimer's, would insult people she never insulted before. I believe she  might had these feelings all along, but couldn't say them, so as to not insult these people. Alzheimer's took her "filter" away. She also insulted me at times, and before Alzheimer's hit, we got along great, so I learned not to take her insults seriously. She'd blame me for things that I had no control over, like the weather!  Sometimes, once the disease came a -calling, I think she was jealous of me, though but I'm not sure why. Once, I made potato pancakes for us. She had what was on her plate, and then reached over to take one of mine. I told her I had more in the pan, (and a lot on my plate, psychologically speaking), but she preferred to have one from my plate. Hubby thought that maybe she was jealous of the fact that I was  (obviously)younger than she was. I even wrote a book about taking care of her: " My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." Best of luck with your circumstances.

I love cecicando's strategy of hugging her mom and saying "I love you."

Hang on to laughing (with your sister, not at your mother!) at any bizarre, unfiltered statements you are able to laugh at, no matter what motivates your mother to say them.

Humor is a powerful tool in coping with caregiving. Thanks to everyone's reminder to laugh when we can.

Yes. My mother and I have had an antagonistic relationship for decades but of course never spoke the words or conveyed the dislike as much. She can be quite nasty, and does what she wants...i.e. she "trimmed" a beautiful plant I had in a pot; she destroyed $30 worth of plantings in a window box; she is a meddling witch and always has been. Her favorite expressions are "you can leave" or if you don't like it you can move out. Without me around the whole game would be over and she'd be in a nursing home.

Dementia patients get into "do loops" of behavior, thoughts, and feelings. It is like being "stuck" on 1 channel. She may have some "held onto" negative feelings - don't we all? Rather than try to prove that her thoughts/feelings are wrong, stick with diverting her to another thought or activity.

My Gram had negative thoughts about her brother-in-law, who shared a business with my Gramps. They argued and eventually Gramps sold his half of the business to his brother. Was it a nasty time in the family? Yes. I told Gram that it was unfortunate and painful but reminded her of happier, more recent times with that brother-in-law and that side of the family. I thanked her for trying to forgive and let go. Then, I hugged her, let her know I loved her, and most importantly... changed the subject.

I do feel like things they say are their underlying feelings without filter.  My mom said to me she thought I always looked down my nose at her and thought I was better than her.  My mom is a very jealous person and always said to me when I was growing up "why should you get to do that...I never got to do that" or "why should you have that...I never had that".  She also told met that she never wanted to have children and that I was her punishment from my dad so that she couldn't leave.  When she said that to me, it then made sense as to why she treated me the way she did.  I have to tell you that she knew she was not a good mother to me and out of the blue she apologized to me for it.  I will never forget it...I had taken her to lunch and she had just gotten her hot tea and she said "I know I wasn't a good mother to you and I am sorry".  I was so shocked that I just nodded and changed the subject.  I cried later that night because that was validation for my sadness over my childhood.  I think after I had my daughter and she saw that you can have unconditional love for someone and want the best for them and have a real relationship... I think it enlightened her and she was a good grandma to my daughter and treated her the way I wished she had treated me.  I was very grateful for her love of my daughter.  Sorry I didn't mean to go on and on about my own situation, but I agree with you that sometimes their actions in this demented state are nuances of their real feelings. I hope you are able to find some bit of humor in her comments. I wish you well on this crazy crazy journey we are all on ....

My grandmother lived to be 95 and was still living alone and driving.  She had been in very good health until the very end.  Unlike her daughter (my mother) who was diagnosed with dementia inher 60's.  My mom is now 79 and grandma died last November so I had to drive mom to TN for the funeral.  I don't think my mom really realized that grandma had died.  She basically had no emotion about it at all and just kept saying she wanted to go home.  I am sure all of you are familiar with that...they don't like being out of their everyday routine.  Well on the drive home from TN, we hit road construction and had to take a detour.  Mom kept looking around and said she didn't recognize anything and that I did not know where I was going.  I said mom it's a detour so I wouldn't expect it to look familiar.  I could see her staring at me out of the corner of my eye and then she said...."you're out here driving around like you've got all the time and money in the world".  I laughed so hard I almost wet my pants!  Many times dealing with moms dementia is sad and scary and exhausting and endless and every once in a while there is a funny and I have to take it and run with it! LOL

When my mom came out with 'your father is such a bastard ... he didn't even go to his own brother's funeral' out of the blue when we were driving, I answered 'yes he did & you went too ... the reason I know is that I was there also,  not only that you did a reading during the funeral mass.'

A light bulb when on over my head because I finally realized how she was getting these ideas & it is what I call the Chinese menu memory - something from column A, something from column B, etc - my mom had taken bits of several memories & woven them together in a new but false one that she believed to the nth degree - once I told that I was a witness she seemed to realize what the real memory was & forgot about it all

She had a few times like that but when nobody could disprove them then she would start embellishing them as bigger & bigger - one was my uncle gave her a friendly tap on the knee so in April it was the mark was there for an hour by August it was black & blue for 2 weeks & she was about to miscarry [8 months] because of it

So when your mom says mean things it is not a real memory she is building on - your car is fancy for 1980's eyes, your home is great for someone who struggled when first married, you may have done something she wished she had done & at the time thought 'I wish I was able to have done that' with a small amount of envy but now it is jealousy of parts of your life she never did due to lack of education, money, courage etc.

You have no way of knowing if it is a real emotion of jealousy or a fabricated one so when dealing with a LO with dementia err on the side of 'false memory' especially if it is out of the blue - she could also be mixing you up with someone else [do you look like her sister/aunt?] that she had a strained relationship with so then she transfers that to you -

When you give a child a treat for being good is it a 'bribe' or a 'reward'? .... depends on the person's attitude who sees it but the kid still got a treat whatever you call it & so it is with dementia it can all be in the person's perception of a small thing can colour how they react

Yes, they do lose their filter. Like some said before, they also get things mixed up. Some of the residents at the nursing home told her she had a pretty daughter (me) when I wheeled her to a Bible class. She shook her head no and tightened her lips up. Her minister told her the same thing and she said no, my other one and he said no, I am talking about this one here with us and she got mad. It hurt my feelings badly at first but I got past it. I always felt she was a little jealous of me but thought that was ridiculous to be jealous of your own child’s success or looks! I wanted her to be proud of me. That is not how it turned out. But, I put up with those things and will never understand it because she did the biggest display after she came down with dementia. Some things we will never figure out. She passed away this past December. I loved her but she was a confusing person.

So true, and I can relate entirely. My sister was adopted, middle child and with a mother who thought she made the supreme "sacrifice" by doing so. I honestly think she thought it was her ticket to heaven. After my brother was born (the miracle child because mom was told she couldn't conceive after me) things took a dramatic turn. She sent my sister to boarding school and she would stay with me on weekends and summers (9 yrs. difference). It was mom's poorly kept secret that my sister was the black sheep. I know she suspected. Recently at mom's dementia assessment she was asked how many children she had. Her reply: A son, daughter and an adopted girl. My heart broke.

I do believe that things semi-buried for years can erupt into semi-consciousness in the person with dementia, who as you say loses filters, etc. I think this seems very troubling but in some cases may be healing. Some people had traumas which, in their generation, were never addressed, not acknowledged or even hinted at. The person might have at times seemed a little 'off,' not herself, but not enough for anyone to give much thought to. I think and I've heard experts say that sometimes a person seems to have some resolution of traumas (or disappointments, etc.) while in a stage of dementia. I would try, gently, to ask your mother to say more about this or that, when she starts to seem more 'honest' in her words. Best of luck.

Absolutely. I am a only child and my mother was mean and nasty before she got sick. It took some time, but I finally learned not to take what she says personal. I know this may not work for you, but when she gets flip with her mouth, I don't say a word. I just look at her, I see where her sickness has distorted her face and physical appearance. I walk away, go to my recliner, kick my feet up and remember, she's the one who is sick. She needs MY help. I have to be honest, every now and then, I slip and argue with her, which is a waste of time. I think you have to find a space for yourself to regroup.

Sometimes it is that the natural inhibitions are no longer inhibiting. Sometimes it's just a 3 yr old lashing out to hurt someone. And, it can even be a case of trying to be humorous. Sadly, it can be any and all of the above.

While it's difficult, try to learn how to shrug it off. You either have to learn to ignore it or you can go crazy. I learned how to shrug and ignore; changing the subject works a lot.

My "stiff old" great-great-aunt started swearing like a truck driver (sorry about insulting truck drivers) - old age really isn't for sissies.

Hang in there, you're still a blessing to your Mom.

Hello Kelli, yes I experience this with both m parents and for years I thought I was crazy, but now its so evident and clear as both my parents display this behavior. The only time I don't get it is if something is wrong, like they like to see me as a wounded solider :-). But when things are going good and I am successful not a kind word of inspiration. My dad went as far as to tell me only fools buy houses ?? wow I'm the first in my family to do so and it made me feel horrible. Or if I buy anything my mom makes it a point to have me take her to get one better, even things she clearly doesn't need. I can buy something for my big toe and she will be like well since you didn't get me one I'll order one from Gucci :-), its like "mom, but its just a post op shoe I broke my toe :-)" sometimes you have to laugh to keep from crying. I wish there was an instructional manual for this, but stay strong and know that some things stem from behaviors and generational baggage from before your time.. good luck and HA! I'm a Wilson and my nickname is Kelli- too funny

If you think it's unfiltered w/ Alzheimers, you haven't had a patient with FTD, frontal temporal dementia... it's beyond a handful of spontaneous, unfiltered, expressions and actions and can give the illusion of "being normal" as there is no memory impairment. But in terms of judgment... it's been tossed out the window.
I think all of us have deep dark stuff we keep a lid on, but with FTD... no lid.

I don't know the medical answer but I have learned that often (like alcoholics), people will blurt out what they feel without compassion and empathy. I frankly don't care WHY they say what they do, to me it is just simply UNACCEPTABLE and I simply could not and would not tolerate it. It would hurt me so deeply as I am very sensitive and caring and cannot stand people being cruel to others, especially when there is nothing to justify the horrible behavior. Everyone has a different breaking point. My feeling is that you do all you can do to help and make things right but when that becomes impossible and you are slowly being destroyed, there is only one solution - you REMOVE them and place them so you can go on to live your life in peace knowing you tried (but failed). You deserve the chance to live and not be abused. Don't tolerate it no matter what.

I think it's easy, understandably so, for us to assume the things our family members say are thoughts and feelings they have kept dark and hidden because it's often so out of the blue and can be hurtful. Especially if the relationship has been contentious in the past. I don't believe you will find any scientific proof that is the case, though. My mother has only said a few hurtful things, and that was early on. She accused me of selling her car and taking her money. Needless to say, my reaction was not good. But she would never have said those things to me if she were in her right mind. Now she just remembers things wrong, has no memories of other things and has memories of things that didn't happen - and asks permission for nearly everything. I consider myself lucky. My mom and I had a good relationship as I grew up although we had different values, but I left home when I was 18 and naturally am not the same person I was as a teen. I believe the best way to think about the odd, strange and sometimes hurtful things that they say during the stages of dementia and ALZ is that they are no longer the same person they used to be. Dementia and ALZ destroys the brain. Robs the person of their personality. Try not to let the nasty comments get to you (talking to myself here, too). You have enough to deal with without wondering if your loved one felt that way about you all their life.....

Maybe theres hidden things that normally wouldn’t be said. But essentially that’s also the key point. If they’ve never said before the disease - then they would be mortified to think they had+ since the disease - if they understood.
Sure it can be hurtful - if you let it - but you have to accept first that normally wild horses wouldn’t have got them to say those things. Think of a kid doing or saying something without comprehending it may be a negative reaction they get.
It may seem like they “must know” but they actually don’t and would be disgusted at themselves if they did.
My aunt wouldn’t kiss her own sisters and saw them as a threat to her attentions from the man visiting - who was her own brother.
I remember her as a very “proper” headmistress. Yet this is the same person who would spit food on the floor, or hitch up her skirt in public for a good scratch “down below” when Alzheimers’s took away the person she was before, and would want to be remembered as.
I accepted both versions - the very strict lady who was always so smartly dressed and the one who had a twinkle in her eye for the men and a lack of comprehension re social niceties.
My father would make comments at times - I learnt that that’s how he saw things now. His logical mind before dementia would have dismissed the things as irrelevant before. So I just answered in a manner of fact way like you would a kid. If he said he didn’t like something I had/ used / wore - I’d just say well I do, so it’s a good job it’s my choice not yours!
Appreciate we are all different and have to find our own way of dealing with such issues. I hope you find your own way of coping with your mums negative type comments.