Re: Do you ever get use to it?

November 6, 2006

Hello Vallerie

I totally relate to your post about the nasty mom syndrome as do many of us I

am sure. Everyone says don't take it personally and I try to heed that

advice. It is very hard. I go between blowing it off, feeling like I am going to

blow it, or my new response much like Jacqui suggested in her post, set

boundries. It also helps me if I don't engage in arguments or reasoning with her

because it always makes it worse. She forgets what happened but I wind up a

nervous

wreck

Today I spent over an hour grocery shopping for my mom then I drove 15 miles

to her house to deliver them and helped her put them away. I asked if she had

gotten any medical bills as she had a hospital stay and I have had to monitor

all the bills which are incorrect because they never billed her supplimental

insurance. She started screaming at me to stop coming in her house and

controlling her. It is just jaw dropping when she behaves like this. I said

" Okay, I

guess I'll leave now " and she said " Thanks for getting mad at me! " . Very calmly

I said " I am not mad but I have to leave because there is only so much nasty

stuff I am willing to listen to before I get upset by it. I just don't want to

hear you being nasty " . She was stunned. But she had to have the last " word "

by slammed the door on my butt as hard as she could. I am sure she won't even

remember what happened or that I even delivered her groceries. I am thankful to

myself for not engaging with her. I didn't walk away shaking to my core as I

have in the past.

She has done some terrible things which have given me sleepless nights. If I

ever remind her of how she has behaved she responds by saying in a huff " Well

I must have had a good reason for doing that! " . NOT ! I am just beginning to

figure out how to deal with it and preserve myself in the process. Each

caregiver has to find what works for them and their LO. In the case of my mom,

she

has always been difficult. It has got to be really heartbreaking when you have

had a sweet mom who turns into a demon. I am very sorry.

It is just a terrible situation and I feel sorry for all of us trying to deal

with it. I hope you are able to find a strategy that works to keep yourself

calm and healthy. Take care of yourself.

Hugs

Mom Ginny 83 dx July 2006

November 6, 2006

Hi, ,

My mom has her " evil twin, " too, and for a long time I did my best to

smooth things over and not agitate her when she was nasty.

Finally, however, I decided that I didn't have to put up with being

treated badly, and if it were one of my kids being moody, I'd make sure

they knew where the line was drawn in terms of the kind of treatment I'd

accept, so that's what I did when Mom got into one of her nasty moods.

When she became nasty and argumentative, I asked her what was bothering

her and what I had done or was doing that she found so objectionable.

She went into a list of things that were bothering her, and finally

admitted that she was taking out her bad temper on me. (She doesn't

always end up being so reasonable.) I have told her that I won't accept

being treated disrespectfully, and that I won't be spending much time

with her when she treats me badly. Mom is in a nursing home, so I don't

have to provide her care during the day, but if I were her caregiver at

home I would do what was necessary to do in a civil and pleasant manner

but not spend any more time than was required in her company. Drawing

the line for her in terms of how she can treat me has been pretty

successful in keeping the nastiness to a minimum, in part because I

don't personalize it and in part because I don't feel guilty about

giving her a " time out " when it happens.

Since Mom started Seroquel, her paranoia and hallucinations have

improved and so has the nastiness. What I found saddest were the times

when she asked me if she was a nasty, rude old woman, because she

realized she was being angry and mean and nasty to the staff at the

nursing home. She told me that words came out of her mouth before she

could stop them, and that they were angry and mean words. She was very

upset with herself for how she was treating people. She is happy to

take her Seroquel because it seems to have helped with impulse control

(she is currently taking 37.5 mg per day). She is more outspoken than

she used to be but not so rude about it.

jacqui (in Puget Sound)

November 6, 2006

vallerie,

I no i don't think you ever get used to it, i have written in one of my posts

that I know that there is my real dad and then the one who is not so nice, i

have experienced that over the last couple of days - not against me but my mum -

yesterday when i went to see them he was like my real dad again. My dad has not

always been a kind and sweet man but he has never been aggressive or really mean

to my mum, he is now on occasions an that is really hard. Thinking of you and

understand what you are going through.

xxxx

Do you ever get use to it?

The last few days have been rough. Usually my mom is sweet and gentle and very

grateful for everything my dad and do for her. The last few days is like the

evil twin has changed places with her.Yesterday she was fine and she and my

younger son and I want Christmas shopping. She let him pick out what clothes he

wanted for Christmas. She was her usual sweet self and even told me she didn't

know what happened to Sat. She said she didn't even remember Sat which was a bad

day. Today I fixed her hair and make up and took her out on errands like usual

and she was fine this morning. I had some shopping to do so I took her as she

always enjoys getting out and wheeling through any store. About half way through

the shopping trip the evil twin just appeared out of no where. I could just feel

her changing so I quickly got her back out to the car and started back to her

house. As I was driving she said I don't know what you are doing but I don't

like it. This was said very

huffy and just not like her at all. I told her calmly that I am driving you home

and I am doing nothing to make you angry. She did manage to keep her temper as I

was afraid she was going to start hitting me like she did one time last spring

when I had to have her admitted to the hospital. I got her home and she was just

very nasty to me all afternoon. Everything I said she would twist around and say

I was trying to trick or confuse her. Really spooked me out as she is never this

way. I know in my mind this is the dementia and she is not mad at me personally

and I know she can not help it. But in my heart is hurts my feelings and I cried

all the way home. My real mother left a few years ago and I have been caring a

sweet old lady but now its like I am caring for a mean spiteful lady and it just

really hurts. I find myself getting very jealous of friends who have mothers who

can be good grandmothers and good friends. I guess I feel like I have been short

changed. I

feel so sad for my dad too as he is such a wonderul caring person and its got to

be tough on him. I know the last few days she has been mean to him too. I know

that many of you on this list go through this all the time and have over a very

long peroid of time. How do you keep your temper and encouragement up when your

LO is having a bad few days or weeks. I am a big prayer person and I always pray

that God will continue to help me be gentle and loving but I don't feel that way

right now. I think I would go crazy if I had to live with her 24 hours a day. As

it is I only have to spend 3 or 4 hours a day with her and even when she is

sweet and gentle it can be very tiring since she isn't very mobile. I try to

keep her entertained and focused when I am with her because I know boredom is a

real problem for our LOs. I also know this is a big help for my dad since I am

totally in charge of her care when I am there. It gives him the needed break he

deserves.

I try and find little blessings everyday but I get so down when we have several

bad days. Makes me think of last spring when she went totally crazy over a drug

reaction and it took awhile to get her settled down. Now I wonder if we are in

for round 2.

I am in total awe of everyone of the caregivers on the mail list. You all care

so much for each other and I hope I can someday I will be able to offer some

needed advice and encouagement as you have given to me the last few weeks

Gentle Hugs

Vallerie

November 6, 2006

Jacqui,

Thank you so much for your quick response. I think I might try setting

boundaries like you suggested. You are right that we would not let our

children get away with being huffy and talking mean. I guess its just hard

since they are the parent but now we have taken over the roll of being the

parent. I am not one for confrontation and will do everything to keep the

peace. I was even that way as a child so this will probably be hard for me. My

kids are good guys but my husband is the real heavy when I need back up and of

course they are in the right mind. I am also wondering like someone else

suggested (might have been you even) to have her checked for a UTI since that

sometimes causes changes in behavior. She is on 25 mg of Seroquel but I think

my dad only gives her half the dose since the whole dose makes her a zombie. Of

coruse, if she is going to be nasty that might not be a bad idea. As you can

see I am not feeling to loving this evening. I am hoping for a

better day tomorrow. If she is back to her sweet self she will not remember

being ugly. Last spring she had complete melt down and beat and bit me while I

was trying to drive. I had my two young teen sons in the back set and it

totally flipped them out. I got her home, call 911 and had her taken to the

hospital. My dad was having a heart cath the day that happened. He had to have

heart by pass and she ended up spending two weeks in the mental unit while the

hospital got her off the wrong antidepressant. She was very horrible to me the

first few days telling anyone who would listen that I made her mad and she was

just defending herself. After a few days she told me she was sorry she had hurt

me but I shouldn't have provoked her and then by the time the two weeks were up

and she was being discharged she was so upset that she had hurt me and she just

didn't know why. Its funny too because she only weighs about 100 pounds and

can't walk but she was like a fighting

tiger at that time. I couldn't believe how strong she was. The hospital

discharged her on Seroguel. Things got a lot better for awhile but now it seems

like we might be in for some more drama. Maybe a time for medication adjustment.

You are a very special daughter and you mother is very blessed to have you

looking out for her.

Maybe one day we can have an evil twin reunion. I am sure the list is full of

them

Gentle Hugs

Vallerie

November 6, 2006

Hi ,

You are right, I am sure you mom won't remember she was nasty to you today and

probably won't remember you brought her groceries. In a way its probably a good

thing. Its too bad that its not as easy for us.

Does you mom still live alone? How long has she had dementia? My mom has not

been dx with LBD but her nuro group just refers to it as Parkinson's Disease

Dementia. I am so grateful to this list for such good information.

Thanks for you comments and experience, it helps so much.

Vallerie

November 6, 2006

Vallerie

Do you ever get used to it....NO. I was a 24/7 caregiver to my Mom. She had

the evil twin syndrome also. One minute she could be all sweet and nice and

the next she was mad and nasty. Feeling hurt is justified even if you know it

is the disease doing it and not them. After all you are human.

One of the things you should check is to see if she has an UTI. Sometimes

that is the cause. They don't always tell you they are in pain when they

urinate. Another thing, did her meds change resently? Did they go up or did she

start on a new med? Sometimes that is the cause. Of course the disease can also

be the cause and you have to ride it out.

You and your Dad are going to be the ones who get the brunt of her anger

because she trusts you both and knows somewhere in her heart of hearts that you

will be there for her no matter what. Its funny that our LO's know that and

they depend on it. So my advise to you is to keep you chin up. Take care of

yourself and your Dad because you both will need all the strenght you can

muster. You are doing a good thing giving your Dad a break so he can rest and

do

something for himself.

I'll say an extra prayer for you all. I too am a prayer. I beleive God does

hear even the smallest prayer. He doesn't always give us the answer we expect

or want but he does hear.

Gentle hugs from Florida

Jacqui

November 6, 2006

-Dear ,

I just got home from one of the same kind of days with my Mom (79

LBD) so i felt like you were telling the story of my day today. I

started to laugh because it was identical. Personally, I try to use

a lot of humor, even with my Mom. We joke back and forth about how

the two of us are losing our minds. She starts it and I chime in

about different things that happen to me..so she doesn't feel

alone....some true, some not for me...lol...but, it makes her feel

less scared...She can turn very mean in a split second...and then

snap out of it just as quickly. They are like little children. They

are scared, they feel abandoned, they know there is something wrong

and they can't even figure out what it is, and it is very difficult

for them and that is what I constantly have to remind myself. It's

not always easy. In fact tonight my Mom said to me before I was

leaving, " do I really drive you crazy " ? I asked her why she said

that and she said that she gets that feeling sometimes...I said, " no

Mom, it's not you per say, it's just the situations, like trying to

find glasses that work, getting you to stop worrying, getting you to

sleep, etc...I told her it doesn't drive me crazy but that it can be

frustrating..and believe me it is...I got there at 10 this morning

and I just got home and it's almost 1 AM...a long day...

When I got home I called her and she was back to her sweet, sweet

self and said, " good night sweetheart, I love you so much, thank you

for all you do for me...have a good sleep and get some rest " ...

It is very hard and no one can say it is easy; especially if your Mom

was always your best friend and you have no lost them to this new LBD

person, who is nothing like the Mom I had before...

I will say a special prayer for you...and from this site, here's the

other lesson I have learned...this is as good as it's going to get,

so I am trying to enjoy every second as bad as it may be, because

from what I can, it will only get worse....I know that's no

consolation, but it is the reality of LBD...so, if I had to give you

some advice, maybe don't do so much with Mom...they have

limitations...changes are very difficult for them...them like

routines...why my Mother is thrown out of routine, she gets mean and

nasty...we can not treat them like they aren't sick...it's too much

for them and for their brain...I find it overloads Mom and she goes

into a dizzy....and gets very aggravated and aggressive because she

is frustrated....because she is not NORMAL and she knows it...it's

sort of the unspoken...

Anyway, I hope I helped you a little...please feel free to write...

Hugs and prayers for you tonight,

Carol Incog

November 7, 2006

Vallerie,

I got up to let the dog and cat out and read your message and all the

replies so far. We can relate to what you are going through. My mom

has said for a few years that she feels like she is always looking for

her self but can't find her -- the real Lena is gone and what is left

is this confused, hollow shell. That is so sad. She wants to have

her brain examined after she's dead so we can finally know for sure

what was wrong and so maybe something can be contributed to the

overall understanding of LBD.

Usually there are reasons when they are mean or unreasonable, such as

constipation or impacted bowels (in her case) or UTIs. Sometimes it's

irrational fears. But if I can't handle it, I do set limits. I have

to, for my own sanity.

She's never really been mean to me, but she can be bossy, and that

alone is enough to drive me crazy. (She did give a couple nurses a

fat lip last winter.) Sometimes she will shush me because she doesn't

want anyone to overhear us, and when I tell her there is no one to

overhear us, she gets mad. If I get angry, then she lays a guilt trip

on me for losing my temper, and then I really get mad. I've told her

I won't put up with that, but she can't remember, so she does it again

every so often.

Fortunately we have an adult day care center near the university, and

I can drop her off and let them deal with her so I can get tests

graded or sleep on my days off (I teach MWF only). A few times she

got unreasonable there and threatened to call the police on them, but

she has long been unable to dial a phone, and they are pretty good at

managing her. They have my cell phone number if they need me. I keep

my cell phone in my pocket on vibrate mode even when I am teaching,

and my students know I may have to answer it.

Sometimes I am so used to it I take it all in stride. Other times,

the illogicalness of it all drives me nuts. Sometimes she tells me

she feels sorry that I have to put up with so much and that I should

put her in a NH. She really means it. We have wonderful talks when

she is going to bed. Sometimes she has me re-read to her the symptoms

of Parkinson's and LBD. She is amazed at how well they fit her and is

comforted that at least she knows what is wrong with her. Sometimes

we quote scripture together. I'll start it and she'll finish it --

all scriptures I heard her quote over and over when I was growing up.

With her macular degeneration, she can't read anymore, and reading was

her life. She had such a library and read for hours daily. She loved

birdwatching and wildflower identification, and she can barely see or

hear birds now. She did see the ibis flock that comes through the

neighborhood on a regular basis during fall and winter. I led her out

to within 20 feet of one, and she enjoyed that, but the ibis didn't

look white to her. She wondered why it was dirty -- macular

degeneration.

At night she thinks our hall is a dirt path outside that she has to

navigate to get to the bathroom, and she is afraid to walk that long

distance (15 feet). She probably thinks she has to watch out for her

lecherous grandpa like she did when she was young. We keep the hall

and bathroom lights on, but at night she thinks it's a dark path

outside. When she is on the toilet, she keeps her pants pulled up so

high that she sometimes wets on them, and this drives me crazy. I

know she's trying to keep herself covered in case her grandpa is

looking through any of the cracks in the outhouse of years ago, and

that is so sad, because he's been dead since around 1940.

It's late and I'm rambling. Got to get back to bed. Just know we

care and we are all going through our own weird little twilight zone

sometimes. And we don't always handle it the best.

Gurganus

November 7, 2006

Vallerie, you are a sweetheart. You just need a hug from me and others on

the List, and you will be able to face the stress again for a few hours. We do

care. I know how hard it is.

MY baby has acted exactly like your Mom. No matter what I say of do it is

turned around into an argument, so I walk on egg shells. I don't want to see

him get upset, so I avoid arguments. Most of the time he is sweet, but I have

also learned that he does not have the stamina some days, and can't do things

or even be entertained. He just needs rest. The days he is off kilter is

because of fatigue, and then old ugly LBD shows up.

Hang in there baby, you got the goods, so let it shine, and relax. Don't try

too hard to do too much, just go with the flow.

Love a bunch,

Imogene

In a message dated 11/6/2006 4:12:03 PM Central Standard Time,

vjedmonds@... writes:

cut----

As I was driving she said I don't know what you are doing but I don't like

it. This was said very

huffy and just not like her at all. I told her calmly that I am driving you

home and I am doing nothing to make you angry. She did manage to keep her

temper as I was afraid she was going to start hitting me like she did one time

last spring when I had to have her admitted to the hospital. I got her home

and she was just very nasty to me all afternoon. Everything I said she would

twist around and say I was trying to trick or confuse her. Really spooked me

out as she is never this way.

cut----

November 7, 2006

, I brag about my wonderful man, and he is, but there was a time, and

it still flares from time to time, that he would do everything in his power to

upset me, and start an argument. He wasn't happy until I was crying. I too

had to learn how to deal with it. That was all before I knew he had LBD. Our

doctor has made my LO back to his old self. He will have little set backs, but

like you said, we have to learn how to deal with our on unique situation.

Read them like a book, and don't let it escalate.

I make sure his meals are on time, and that he takes a good nap every

afternoon.

That helps keep the nasties at bay too.

Imogene

In a message dated 11/6/2006 7:36:04 PM Central Standard Time,

wtheri1022@... writes:

Hello Vallerie

I totally relate to your post about the nasty mom syndrome as do many of us

I

am sure. Everyone says don't take it personally and I try to heed that

advice. It is very hard. I go between blowing it off, feeling like I am

going to

blow it, or my new response much like Jacqui suggested in her post, set

boundries. It also helps me if I don't engage in arguments or reasoning with

her

because it always makes it worse. She forgets what happened but I wind up a

nervous

wreck

Today I spent over an hour grocery shopping for my mom then I drove 15 miles

to her house to deliver them and helped her put them away. I asked if she

had

gotten any medical bills as she had a hospital stay and I have had to

monitor

all the bills which are incorrect because they never billed her supplimental

insurance. She started screaming at me to stop coming in her house and

controlling her. It is just jaw dropping when she behaves like this. I said

" Okay, I

guess I'll leave now " and she said " Thanks for getting mad at me! " . Very

calmly

I said " I am not mad but I have to leave because there is only so much nasty

stuff I am willing to listen to before I get upset by it. I just don't want

to

hear you being nasty " . She was stunned. But she had to have the last " word "

by slammed the door on my butt as hard as she could. I am sure she won't

even

remember what happened or that I even delivered her groceries. I am thankful

to

myself for not engaging with her. I didn't walk away shaking to my core as I

have in the past.

She has done some terrible things which have given me sleepless nights. If I

ever remind her of how she has behaved she responds by saying in a huff

" Well

I must have had a good reason for doing that! " . NOT ! I am just beginning to

figure out how to deal with it and preserve myself in the process. Each

caregiver has to find what works for them and their LO. In the case of my

mom, she

has always been difficult. It has got to be really heartbreaking when you

have

had a sweet mom who turns into a demon. I am very sorry.

It is just a terrible situation and I feel sorry for all of us trying to

deal

with it. I hope you are able to find a strategy that works to keep yourself

calm and healthy. Take care of yourself.

Hugs

Mom Ginny 83 dx July 2006

[Non-text portions of this message have been removed]

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November 7, 2006

Imogene,

You are just a sweetheart and I wish I lived next door to you. I read the other

emails and you be sure to see your doctor. No good you getting sick. Be sure

to get the rest you need although I know its not always easy to work it in when

you need it.

Today was a better day. My mom was back to sweetness today and even her voice

was a bit louder than usual. I made her lunch and we baked cookies. We talked

about my boys when they were babies. SHe has a great memory for things that

happened years ago so I always try and talk about stuff that happen a long time

ago. The cookies didn't turn out to pretty but tasted really good. We had

bought a real big bag of chocolate chips at Sams a couple of weeks ago and we

could not find them. Sometimes things disappear and I will find them in odd

places. She couldn't remember where she put them and my dad said he hadn't seen

them since we brought them home. Since we couldn't find the chips we cut up

snack size Snickers. The cookies spread a lot but still tasted fine.

This list is truly a lifesaver. I always feel better after I talk to my new

friends.

Gentle Hugs

Vallerie

November 7, 2006

I like cookies. I'll be right over. (grin)

Imogene

In a message dated 11/7/2006 3:11:56 PM Central Standard Time,

vjedmonds@... writes:

Imogene,

You are just a sweetheart and I wish I lived next door to you. I read the

other emails and you be sure to see your doctor. No good you getting sick. Be

sure to get the rest you need although I know its not always easy to work it

in when you need it.

Today was a better day. My mom was back to sweetness today and even her

voice was a bit louder than usual. I made her lunch and we baked cookies. We

talked about my boys when they were babies. SHe has a great memory for things

that happened years ago so I always try and talk about stuff that happen a long

time ago. The cookies didn't turn out to pretty but tasted really good. We

had bought a real big bag of chocolate chips at Sams a couple of weeks ago and

we could not find them. Sometimes things disappear and I will find them in

odd places. She couldn't remember where she put them and my dad said he hadn't

seen them since we brought them home. Since we couldn't find the chips we cut

up snack size Snickers. The cookies spread a lot but still tasted fine.

This list is truly a lifesaver. I always feel better after I talk to my new

friends.

Gentle Hugs

Vallerie

November 7, 2006

\,

I had a Mom who wasn't so nice to me before LBD. I had an even harder time when

she got nasty while I was trying hard to take care of her.

I finally did set limits. It was the day she raised her cane to hit me. That

was the final straw. I took the cane away and made her use the walker.

I did learn she was scared when she got so upset. And that made it some what

easier. and it never worked when I got got unreasonable with her anyway. My

daughter got farther just joking and being patient with her. (My daughter

didn't have to be with her 24/7.) I did eventually learn patient got me much

more success than inpatients.

Hugs.