I just want to scream!! Not AT my mom, well, maybe I do. Love my mother, so much, always have, she was always a very controlling mother, knew how to throw guilt around to get what she wanted from me, but, at the same time, a very big heart.

I'm going to just let all that stuff go for now. It's not the important part.

The important part is NOW, NOW, NOW. I'm running out of answers, steam, patience, time, energy. My mom has Parkinsons? Maybe..first diagnosis, then LBD has been thrown around also. What I once praised as "spirit", I now recognize as defiance, perhaps dementia also.
She cannot see well at all, she cannot hear, she uses a walker to walk and depends on her husband (who is 80, she is 86) to do just about everything for her in her home. She is one bullheaded stubborn woman who in thelast six months has become more and more demanding and mad, and childish and accusatory, she is killing her husband and wiping out my sister and me. Then she does a complete about face and is sweet. BUT!!! she remains defensive and bullheaded. I fix a month's worth of pills for her and husband, put them in weekly boxes, no matter when I come over (at least 2x a week) (she lives 30 miles away), the pills are mixed up, some are still there in the day slot, some are gone from other slots, find pills on the floor, she always says someone else messed up, NOT HER. Today my sister went over to make sure she took her pills rights, said she would come over every single day at 10 am to give her and her husb pills, ....mothe went absolutely ballistic!!!!! Yelling "what's wrong with you and your sister?? I know what I'm doing, what, don't you and her make mistakes???? You talk to each other too much, you make out like I'm crazy!!!!" For a half hour sister tried to explain the seriousness of the situation, mother yelled and insulted and accused, sister left and said, fine, then you do it yourself, I give up. She came home, called me,and felt totally spent and exhausted and sad, and hopeless. My mom wants me in there at least two times a week and has no problem asking us to do everything for her, but when we say she cant do something because of her sight, her hearing, her confusion, she goes crazy and gets very very mean, you just want to walk out and not go back.
I dont know what she has, LBD, PD, I dont know, but I dont like this new meanness in her, we don't deserve it. I'm not sure it's all because of any disease totally, or if she is just taking advantage of her two daughters and lashing out at them when they dont behave as she wants them too, again, the emotions I feel are enormous, and actually making me physically sick. I cannot talk her into any home help, no assisted living, no help other than sister and me, and now she's getting paranoid with my sister and me , thinking we "talk" about her and plot, and then her kitchen is anothe thing, ants, (we have exterminated, her husband leaves sweets everywhere), mice, he does the dishes by hand and every one of them is dirty when youj take them out of the cupboard, yet she cant understand why we always re-wash everything and throw stuff out in the frig(moldy stuff), she accuses us of thinking she cant cook anymore, "I've never poisoned you yet, do you think I'd poison you now????"...if we go to throw anything out, she says there is nothing wrong with it, we have to put it right in front of her eyes and show he the green and she says "oh, Carl just bought that!! I have to call the store!!!!"...BALONEY!!!! She cannot see, she cannot hear, I cant stand to see her going like this, she is turning into a mean, old lady. And I dont know what to do next except scream!!!!!! NOTHING WORKS WITH HER, NOTHING FIXES ANYTHING FOR HER AND SHE AGREES TO NOTHING!!!!!!!

Well, thanks again for your great ideas.
It's an up and down thing with her. I've taken this to the proper board, thanks again all of you.

Yep. Been disowned a few times as well.

There really is wisdom in what your husband is telling you. We ended up having to back off and wait for a crisis to step in. Actually, more than once. She'd ask for help, then get to feeling her oats and "fire" us again.

Then we'd be getting phone calls from her acquaintances to chew us out for not taking charge. They truly don't understand, even while acknowledging how hardheaded she is.

I'm afraid that you are going to have to develop a thick skin, and armour your heart. The dementia doesn't just "own" their brains; it owns those who love them unless we strengthen ourselves and remind ourselves what she would have wanted, not only for herself but for her children, when she was still in her right mind.

Maggie welcome to ECO, you definitely are in the right place to find support & guidance.

I was in your shoes about a yr ago & have faced many of the challenges in front of you now.

First as everyone has suggested is a proper diagnosis. Keep in mind since there is no "test" to confirm exactly what our LO's suffer from, treatment/meds can be trial & error. What works for one doesn't necessarily work for the next so have patience & don't be afraid to call the DR & say this med is not working or making things worse.

Some Dr's may call the disease PD w/lewy body, LBD or parkinsonism. Different names but treatment is basically the same. Many are dx w/ PD & as the disease progresses develope LBD.

If your Mom is suffering from any form of lewy body keep in mind that her PD meds can amplify hallucinations & other LBD symptoms.

"guilt" isn't it wonderful even as adults are parents of capable of "controlling" us w/this? One of the other posters mentioned appealing to the "softer side" of your Mom. I know for me this worked on some things & would be my 1st attempt. For example if you're looking at having a 3rd party in your Mom's home appeal to her sympathetic side. "Mom I know you may be able to do these things on your own BUT I & family worry so much about you" We love you so much, it's about our peace of mind that you are safe. Since we can't be here all the time we would feel much better if you would allow us to have someone in the home to "help YOU". Focusing on you, your fears or making it easier for you, instead of what they can't do anymore. For of LO's I feel the biggest fear, losing that independance & this makes them "fight" us every step of the way.

Thru the progression of Mom's disease I was "disowned" 100's of times, accused of trying to get rid of her & she questioned if I still loved her. Yes the 1st few times it broke my heart, no one wants to see their Lo like this but thanks to the good folks at ECO I was able to make a transition from being Mom's dtr to her caregiver & detatch myself most days from the emotional roller coaster.

I wish you God's strength on this journey and remember we the folks at ECO are here to help, just think of us as your safety net.

Blue, I am chuckling here, so often the other team members in my Mom's care have told me they got instant cooperation from her if they asked her if they should call my bro or me to see what we think. I would never in my life have thought the notion of a phone call to me or my bro would get her in the shower, just the notion. That is the biggie for us, just 3x a week, a real shower, a trip to the tub.

So strange what they respond to. the idea of Dear Abby said, or Erica said, etc. is a hoot. That is so good. You use what works, but it takes practice to find out which strings to pull. Mom's biggest fear is that I will declare her Not able to go to see her hair dresser this week if she can't find the strength to take a shower.. or ask her to see the doc if she is feeling weak.

Still since I am there as much as I am, I can see for myself. I think what would work for me is"Andy Griffith " said....

Maggie, I am living your life! I totally understand your frustrations, and anger.

I can't do anything with my mil, I have tried until I felt like I was beating my head against a brick wall. I cannot! get her into a car, if she does not want to.

It is such a maddening and helpless feeling!

Try not to take her behavior personally, does she have a favorite newspaper, radio or TV personality? If so, maybe you could suggest you heard them say that it is good to take your meds on time every day, with your favorite pudding, ice cream, or yogurt?? I have to trick my mil into eating, and drinking. Sometimes it works, and sometimes it does not. I also find that if I talk to her with a honey laden voice, as if sugar were pouring off of my tongue, I can more cooperation. Always playing up the poor pitiful me saga, is a huge help also.

It might work for you, it might not. My mil on a good day, in her younger years always, always had a mean streak a mile wide....these days it is amplified!!

Keep coming back honey, we will all try to help!

Maggie, your Husband's choices are possibly a Little harsh, but he has a point. Once you have a better assessment of her condition, you will be standing on firmer ground. I think I would try to make do until then, still if she stands competent to the docs and the court, wpn't sign POA and DPOA, the only thing you can do is make your own choices. Same for your sister.

You may just have to bide your time, the people of our folks generation are a very independent bunch. To let anything go is like sitting down to die. That is how they see it sometimes.

You are going to have to be sneaky to help them right now. And she will have to make some choices in the near future. Granted, "I'll help you my way, this way, or not at all" does sound rough. Don't know I could do that.

At 92, my Mom is very cooperative, but she was never as indepndent as some of her sisters. I have some cousins going through hoops, chasing their folks around. But I do use the A or B technique often, and it does work.

We'll talk more somewhere besides the yellow pages. The Anger Wall is about to blind me. Hang in there .

What a dilemma, Maggie! I know you can hardly wait for her appointment in September! Perhaps it is wise to bide your time until the results are in from that appointment. Since she is showing some signs of paranoia already, it might not be a good time to have a clandestine discussion with her husband as spouses have special radar and she might pick up on some vestiges of your conversation with him.

We have several members who have battled through the diagnosis phase of LBD - their insights might be valuable to you!

I think your husband's idea has merit, except that it would be confrontational in nature and that might backfire on you. Perhaps it is best until September to keep on doing what you have been doing, except request that she be given her meds by someone else. Do they have a neighbor who could be pressed into service? Can your sister simply go by and administer the meds? It's HARD to tread lightly around people whose mental abilities are volatile - is there a child - say around 10 or 12 whose aid could be enlisted? Sometimes kids can go places with elders that we can't go...

Her sudden symptoms would not surprise folks caring for loved ones with LBD. The disease progresses in spurts and sometimes a sudden change simply means that the brain damage has progressed to an obvious level in a portion of her brain. In other words, she is becoming unable to control her behavior or to hide it from others.

Wish I could offer some solution to you, but I think the only help you can hope for will come after the neurology appointment.

Hang in there - hopefully one of our members who has more experience in dealing with this stage of LBD will have some solid suggestions for you that may help you get through this trying time.
{{{HUGS}}}

Thanks all for the wisdom, helps alot.

The reason I don't know what mom has for sure is that one doctor says PD, the other says "possibly" LBD...have to wait until the beginning of Sept to get her into the cleveland clinic neuro, she was seeing one who left for a maternity leave and they are trying to get another to replace her in our area, it will take as long to get her an appt with any other one, might as well wait for the cleve clinic one.

I have read and read and read about PD and LBD. Yes, I realize her behavior is typical of LBD, but it has come on so fast, it's stunning.
It isn't simply a matter of contacting someone and claiming her incompetent, she can be very lucid and sharp at most times. Her husband has Alzheimers and is in a bit better shape physically. My sister and I are there 2-3 times a week, cooking, cleaning, her hygiene.
She expects us to do just about everything, and I don't mind at all, it doesn't kill me.
However, my sister is 68 and not in good health.

Whenever ANYTHING AT ALL is mentioned about home health care, nursing care, bringing in any 3rd party, she goes nuts. I mean, she is MAD at us, so how do I do this ?? It's HER home. he says nothing, he goes either way, but he will not say anything to her, whatever she says goes. Period. She's the boss. My mother will absolutely dis-own me if I go against her. I don't know when the proper time is to step in..don't want to wait too long, don't want to jump the gun. My sister is the oldest, then a brother, then me....they look to me for answers, I don't have any , not any that would please my mom anyway.

My husband says I should approach my mom like this...
You have one of two choice, you can let us come in and give you your pills and tend to your meals...or you can do all this yourself and get sick and end up int he hospital and then a nursing home because you will be too sick to live at home.

I'm not trying to be stupid about this, or "childish"... I'm 58 with grandchildren and two grown sons and have managed to live through a few crisis' in my lifetime, my fathers long, slow death, I know how to be mature, I'm called on all the time to come up with answers, this time, my mother has me frozen. I suppose I will get through it, I will eventually do what I know is best for her, regardless of her defiance, but it's difficult. And I thought this was a good place to rant. I will get through this. So will she, I just want to give her the respect she deserves as I give her the best care she deserves. If I get someone to come to the home, she will send them away. She already sent a nurse packing, while I was there.
Sister and I arranged for a private nurse to come and my mom told her to forget it.
As soon as the neurologist examines her, we'll go from there. By the way, her primary care doctor is a quack who she loves and has had for 30 years. He has NO OPINION. He's a waste of space. His attitude is, "just let them grow old peacefully and die, don't rock the boat, leave 'em alone."
It's easy to say do this, do that, I risk having my mom never speak to me again if I do the wrong thing, and yes, I know, I risk having my mother die from not getting good care if I do the wrong thing. Tough choice to make. Thank you all for your loving and caring words. Helps alot, hope I can be of help to you someday.

I feel for you, Maggie. We went through a quite similar situation with my grandma a few years back.

--
John George
Elderly Care Information

Having my husband with Parkinsons with LBD I can undertsnad what you are going through.For one it is very important they get their meds the same time each day and nop extra doeses.
Many times the wrong meds will cause a personality change.Talk to her neurologist about this.
Also they are very determined in their beliefs.If they say white, they accept nothing but white.If you find food that is bad, just chuck it and say nothing.
The important thing to remeber as the disease progresses the meds may have to be changed, the same for her persoanilty changes.Try to humor her as much as possible.They love to be combative, just part of the dementia.I would not leave her meds where she is able to get to them.

quote:

What I once praised as "spirit", I now recognize as defiance, perhaps dementia also.

Maggie, this reminded me so much of my own mom. She was always a little of an oddball, and as she aged, most of her "oddballness" became harmless, delightful eccentricity. But as she aged, the dementia began creeping in and her eccentricity suddenly became less harmless and her lapses in judgment became hazardous to herself and sometimes those around her. At first, I thought (maybe "hoped" was more like it) her eccentricities were simply misunderstood by others who found them less endearing than I did. But after she moved in here, I began to realize that these eccentricities were not cute any more and that her common sense, ability to reason, etc. had left the building with Elvis. I got her to a shrink who diagnosed her condition as bi-polar (but that wasn't it...) and medicated her for that. It worked somewhat for a while, but the advance of the disease caused her to lose her sense of balance rather quickly over a period of about a year. Finally she fell, broke her leg and was not able to rehab again.

I was heartbroken when I realized what was happening to her, how long it had been going on, how many times I had gotten aggravated with her for stuff she just couldn't help, how oblivious I had been to her needs. It is VERY difficult to get one's mind around the fact that the person looks like our loved one, talks like our loved one, but behaves like someone we don't know anymore! Sometimes it is very subtle and we talk ourselves out of it. Other times, they pull stuff that is so utterly CUNNING, we cannot believe that someone with dementia could do the stuff they engineer! But when I realized that the mean or manipulative stuff she was pulling was part of the dementia (her normal inhibitions and common sense would never have allowed her to behave that way before...), I realized that I could not take any of the unpleasant stuff to heart. Any issues I had with her were buried at that point because there was no resolving them with someone who isn't on a level playing field any longer.

quote:

I'm going to just let all that stuff go for now. It's not the important part.

Yep. You're on the right track here... While it's tough to handle the behaviors that come with these brain destroying diseases, you must detach yourself from those hurtful things. That's the disease talking and using your mom's mouth.

I hope that you and your sis can join forces and understand what's happening - it's sooooo relieving to have someone else who understands and "sees" what is happening... sometimes other family members and friends declare us "the enemy" because we are trying to get folks to realize there is something terribly wrong!

Hang in there and know for a fact you are NOT alone in all this!

Maggie, Momsbuddy is right all the way. My Mom has Lewy Body Dementia but was first diagnosed with Parkinsons. My Mom is only 66 but is now in a NH in the severe stages of the disease. I can tell you that the behaviors you describe are totally "normal" for someone with LBD. "Normal" in that they are unpredictable and make no sense to us without the disease. There can and will be good and bad days or even good and bad hours! She will get stuck on certain issues, she will refuse to change a behavior that is destructive and makes no sense to anyone else, she will get anger flashes, panic attacks, crying jags...alternating with more compliant behavior. It is no fun, not easy, and emotionally draining. Get the medical backup of a correct diagnosis and meds as MB suggests - you need all the help you can get. Hang in there.

Hi Maggie, You are going through a rough time and many of us here are in your shoes. My mom has dementia and I have seen wild behavior from her. She would lock herself in the bedroom when the caregiver showed up. She now yells out for us when she is getting washed up and dressed. It's very hard not to run in and help her...
You can talk till you are blue in the face and you wont change your mom a inch... it's the dementia speaking and thinking in her...
She no longer has the controls. You have to protect her from herself. Caregiver would be very good.
This road is only going to get worse... it breaks my heart wathcing my Mom. Glad you have your sister. My sisters are wonderful too. My Dad is 89 and he is my hero. ALso a brother who pitches in... but we still need a cg. None of us kids live close enough to be there every day. So please look at home care... that person can teach you a lot about dementia no matter what kind she has... lots of info on this site, really educate yourself so you can see the changes coming... best to you and your family. We all are here for you.

quote:

I dont know what she has, LBD, PD, I dont know, but I dont like this new meanness in her

Maggie, until you WANT to know what her diseases are and how they affect her brain and behavior, you will never get a handle on this. Your mother is showing some classic signs of dementia-type behavior. You need to educate yourself about this condition and how it manifests itself in her behavior. That she has not already succumbed at age 86 is a miracle to her tenacity, but that is not going to last. She needs her adult daughters to step in and take over her care whether she realizes it or not. Time for you daughters to stop getting your feelings hurt like little girls and get to her doctor and learn about her condition like concerned women. You can fuss and take offense and continue getting your feelings hurt until the cows come home but you are missing the boat. She's a very sick lady in need of help and UNDERSTANDING of her condition(s). Her behavior is typical of people with brain damage - what I don't understand is how you women are allowing someone with advancing brain damage to call the shots! Time for y'all to take control of her welfare. She can no more keep up with a container of sorted pills than she can fly! Fussing her will not help one iota! She cannot help it! She cannot help the paranoia, the lack of judgment, the angry outbursts, the clever manipulations. Her brain doesn't work right anymore.

Do either of you have her DPOA? I take it her husband is not your father - y'all need to sit down with him and get the legalities of this situation worked out. Your mom needs treatment and may not be able to remain in her home much longer without professional-level care.

While it is terribly disturbing to see someone you have always known and loved turning into someone you don't know, that's the nature of these kind of brain-destroying diseases! They are heartbreaking for all concerned. Time for you and sis to take the bull by the horns. Your mom cannot be allowed to continue running the show. She cannot be responsible to take her meds properly.

Nothing is going to "fix" her - her conditions are progressive and will only become worse over time. She is in denial because she is ill - you and your sister need to stop denying what is happening with her, get to her doctor and discuss her symptoms (is he/she aware of her halucinations, delusions and paranoia?). Where is her husband in all this? Since he IS her husband, it is up to him to decide what course to take. If he refuses, the only thing y'all can do is stop assisting her and call APS and complain that she is incompetent to care for herself and her husband cannot do it either and see what they have to say about what can be done...

While my heart breaks for both you and your sister, my concern is for your mom who is seriously ill. Intervention is needed!! Please make that appointment with her doctor and inform yourselves about what IS going on with her and what you can do to ensure that she receives the protective care that she needs. Talking with her husband is an important step - I'm sure he is as wiped out and devastated by her illness as the two of you are. Perhaps together, y'all can get her some real help and stop allowing a sick woman to run the show! Hurry! Time's a-wastin'!

You can read about others' experiences with Lewy Body dementia right here - you will see a lot of similarity in the stories others have shared. There are also links to other sites which specialize in this double-trouble disease... Please take steps to learn about her affliction and make a plan for her care. Doing so is the only thing that will help anyone to feel better and get a hold on hwat has happened to your mom.

{{{{hugs for you}}}}}

Been there, done that. My husband and I could have written your post, right down to the little details about the fight over the pills and the paranoia. Sadly, often dementia serves to magnify their worst personality traits.

maggie. hi welcome to the anger wall. hope it helped to vent. i can honestly say that i don't know what to say but i sure do feel for you. where did they come up with LBD/ how long has she had parkinson's and what are her meds supposed to be controlling? do you think these mi ups have anything to do with her more recent behaviors? anyway, wish i could help more. is she scared? could that be any part of it? is she afraid you are right and can't admit it?