Re: Lucille to LIN

[Guest guest]

Dear Lucille - Am back to the site after some days away. I hope you have found

the articles written by Dr. Boeve at the LBDAssociation web site. They have

really been helpful to me.

The geriatric pharmacologist who works in the hospital where I do also

referred me to www.emedicine.com/neuro/topic91.htm. Excellent clinical article

fairly aunderstandable even to me: Dementia With Lewy Bodies by Crystal,

MD and well-respected editors. It's another good overview of the disease. He

writes about features that distinguish LBD from other dementias, which I recall

you wrote about before. Also about meds. He discusses Aricept, Exelon and

Reminyl as " memory meds " for those with LBD. Neither author writes about using

two such drugs (such as Aricept and Amenda) together, although the

pharmacologist says that is sometimes done with Alzheimer's. Again, it seems to

have to do with how very sensitive to meds those with LBD are. Please keep us

posted - we care! Peace, Lin

adoptn wrote:

Thank you for another warm welcome. I'm wondering, is Aricept and Namenda on

the list of meds that don't work or that work negatively with people who have

LBD? My husband had an agressie episode while on those, and since he has now

been taken off both, he has not had any agitation or aggression. He is just

super quiet, not initiating conversation, etc. The weird part, even to the

psychiatrist, is his good short term memory, but loss of long term memory (of

his childhood, most of our marriage, etc.). I think I am hearing from most

people, is that LBD in particular, can be so different in different

people...but, is that so with all dementia's? I do want a probable diagnosis,

for the same reasons you give, but I guess I might have to just be satisfied not

knowing for sure.

Lucille

l pratt wrote:

Dear Lucille, Welcome to our " family. " I am sure you're receiving the warm

welcome I got when i first came to this site, and that you'll get the

suggestions, comfort and strength you need here too. My mom is 78 and has LBD

with Parkinson's, depression and underlying mental illness. She was stable on

her meds for 3+ years, following a psychotic break due to too many Parkinson

meds. During those years, she couldn't do much for herself physically, but her

mood was good and we saw only mild dementia. She has the LBD diagnosis from a

very good psychiatrist, based on her symptoms. (Donna and others is right, of

course - only at autopsy can anyone be certain what kind of dementia it is.) For

the last 5 months, she has become weaker physically with many mood swings, some

aggression that comes and goes, lots of crying from time to time, and she has

developed the typical LBD " fluctuating cognition; " that is, she makes sense one

minute and is totally elsewhere within the

course of a

sentence.

I say all that to describe just one more person with LBD. For me knowing the

diagnosis is extremely important so I can know how best to deal with my mom.

Many people with LBD cannot tolerate many of the memory and behavior meds used

with those who have Alzheimer's. Those drugs can make their problems much worse.

Also, there are many standard meds not good for those with LBD. Also, the

behaviors in LBD can be different from Alzheimer's or other dementias (there are

a number of kinds of dementia), and the course of the disease is frequently

different. So, to find the right doctors, choose the right meds, and pick the

best kind of care - it is necessary for me to know the diagnosis. Do be aware

that not all doctors understand LBD, even though it is the second most common

dementia in this country.

All of us here are with you in thought and prayer. Please let us know how you

and your family are doing. It is a difficult journey, as you already know, but

you do have friends here who understand.

Peace,

Lin

Donna Mido wrote:

Lucille,

I am Donna and Mom wasn't diagnosed. I just knew she didn't have Alzheimers like

they said. She did it different than the AD people she was around.

Do find out what kind of meds you have him on. There are good ones and not so

good ones.

Bottom line is they can only give a definite Dx by doing a autopsy. They can say

it seem to be LBD by the symptoms. There are lots of kinds of dementia. None are

wonderful.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Sharon M

Hi,

Thank you for the welcome, and for sharing so much with me. It is so reassuring

to know others have gone down this road, and can help me along the way. Maybe in

the future, I will be able to help others. For now, I am just wondering around,

trying to figure things out, trying to find a way to understand.

How important is it to KNOW what is the exact diagnosis? My husband is pretty

stable, emotionally, right now. But, I wonder what exactly he is feeling, on the

outside he seems to have stayed the same for quite awhile now. He is quiet, no

agitation, etc. He is on meds to help control the agitation, and I wonder what

would happen if her were off the meds, but I sure don't want to try that. I

think if I had a definite diagnosis, then I would be able to relax, but I bet it

really wouldn't change anything. I am mad at this disease, dementia, no matter

what the name of it. So often, when I read of other's experiences, it is like I

am reading our own experiences, and that helps me not feel so alone.

Thanks again for the support,

Lucille

LadySmilingAtU2@... wrote:

lucille,

first of all welcome to our family although it saddens me that you had to look

us up. Feel free to vent, cry, scream, laugh, share stories, ask questions,

whatever it takes we are here for you.

lbd is a very ugly disease. our lo's (loved ones) change at the blink of an eye.

They can go from smiling and lauhing to hateful nd accusatory.

The best thing to do when they get violent and angry is to either walk a way for

a few minutes. or if possibe just chang the subject instaead. It is tough and it

can be ugly. their ugly moods or doctor jekyll mr hyde routintes as i called

them are very hard on us, their lo's. My dad would accuse me and my husband of

stealing from him and not be feeding him. one time we were in a lock in at teh

hospital becuase of hurricane outisde. dad was hosp due to hip surgery and one

family member could stay with him so i did. dadwould yell and scream at me, we

all were in thehallway as they had to move everyone away from the windows. so

all the patients and family were in the hallways. bed and luonge chairs, very

hectic. Dad would call me a slut and whore and would try to pimp me out and

scream at how i was stealing from him . i was so upset, i tried to find a place

to escape but there wasnt anywhere, i finally ran into the nurses break room and

this very nice nurse came into the room

and said, the things your dad said was awful and hurtful. she said that i needed

to take a break go walk on another floor , take a break from dad that he had

nurses there to take care of him, just walk a way for a little while. she also

reminded me of the sayig that we always hurt the most, teh ones we love the

most. she said in his own demented mind that he knew that he could trust me and

that i loved him so should look at it from another perspective, that instead of

listening to the angry words, realzie that even his demented state he can still

trust me and knows that i am there to lvoe him no matter what. it gave me a

whole new way t look at things. that helped me to realize that he did love me,

and tha his words didnt matter. now dont get e wrong, there were times hs words

still hurtbut then instead i tried to remember the fact that he trusted me to be

there even in his anger.

we kept my dad here at his house , we moved in with him, until he broke his hip

and had surgery. then things went down hill fast. we had arranged to bring him

back home on oct 1, i had hospice reinstated and caregivers roundedu up, lot so

help. for caregiving but my dad passed away 9/25/05.

good luck and hugs, sharon m

---- adoptn wrote:

Hi ,

I am a new member here, and your post drew my attention. A little summary on our

family: my husband is 62 years old, (I am 60). About 2 years ago, we thought he

had severe depression, and I mean severe enough that the even did ECT (shock

treatment), for several months. That seemed to help, but there were still some

areas that just didn't make sense. They finally did a neuropsych test and an

MRI, and he was given Early Onset Dementia. He has some damage in the frontal

lobe of the white matter of his brain. There were so many points of your letter,

and those of others on this list, that I wonder if he does have Lewy Body

Dementia. Like your dad, my husband has always been the stable, peaceful person,

never swears, etc. After diagnosis, he began to show minor signs of aggression

(mild violence). He was at times like a zombee, other times overly hyper, he saw

things like spiders in his room, etc. We placed him in a Residential Care

Facility, as it was

impossible for me to continue to keep him safe, and me and our two young

children. At the first place, he had a violent episode, against my

grand-daughter, and me (no bruises, or anything, more of a floppy, weak hitting

episode. He went to the psych. unit and they took him off Namenda and Aricept.

He then went into a facility too far away, and now is in a place 5 minutes from

us. He is now, at least this month, very subdued, his past is fuzzy to

non-existant, but his short term memory is fine. He rarely talks, unless spoken

to, and doesn't expand on anything. He will sit and stear at the TV for hours.

At the new place, he does participate in activities, and he likes the place...it

is more like a home then the large, modern places. He is on Medicaid, and that

made finding a place near to impossible. I realize that if I ever took him out

of the facility for an extended time, we would never get him back into a good

one.

I don't understand. His behaviors, his knowledge, etc. is so changing. Often a

new personality will appear, and we just have learned to love this new " daddy. "

We feel blessed that he is now not aggressive, but we miss him at home. I know

he can not live with us, and that is hard. There are few people we know that

still have young children at home (actually, none in our area). I grieve for the

loss of our planned future, but I also am thankful that I have so much joy in

being mom. Sometimes, though, I think I should feel guilty for feeling happy,

then I decide that I will not feel guilty for something that is not my fault,

and I will continue to love my husband in any way I can.

You are so right, " it is a terrible journey. "

Lucille

Vallerie Edmonds wrote:

Hi Donna,

Hmm, I have been doing more research today and it does look like Parkinson's

Dementia does have the Lewy Body involvement. It is so complicated. I personally

wonder if the high doses of Siniment my mom takes is causing much of the

paranoia? We have tried to cut back but then the Parkinson symptons are

unbearable. My dad is pretty informed on Parkinson's Disease but the dementia

symptons recently have become very challenging.

We are going to try and get by with home care instead of a NH. After reading so

much online it just seems like you either spend a pile of money in a NH or you

spend a pile of money keeping them home. I do realize its very hard to get

really good in care help at home and I assume its private pay. However, if mom

ends up in a nursing home it will be private pay anyway as she does not have any

NH insurance. I know Medicare pays for a little while but I assume after that

its either private pay or Medicaid.

Its all very complicated and its taken me time to research. We just got her into

seeing a Psychiatrist that is supposedly experience in dealing with the mental

needs of the elderly. Guess only time will tell if he has any good advise on

coping with the more challenging behavior problems.

I know a NH may be in the not to distance future and it grieves me to even think

about that. However, I am not going to bring mom into my home because I know I

can not emotionally cope with the aggressive behaviors. I do not have any more

brothers or sisters having my only brother die from cancer 13 years ago. Its

just dad and me. I do have a very good husband but he travels a lot and is very

busy with his job so I try not to burden him too much. I also have two sons, one

in high school and the other in Jr high. They love grandma and its very hard for

them to watch her fad. I make sure they see her weekly but when she is angry and

aggressive I keep them away. I think if she were in her real mind she would want

that.

Its a terrible journey we are on but I do count my blessings for the group. You

all have been a weath of infomation to me.

Gentle Hugs

Vallerie

[Guest guest]

Hi,

Yes, thank you so much for the links. I am printing out/saving some so I

can quickly recheck them. My husband was home today for a few hours. He ate

lunch, and then just sat there. My son finally asked him to play some

basketball, which he did. It seems that he will do what we want, but doesn't

know what he wants to do until someone asks him to do something. Then, he

slowly walked back into the house, after about 15 minutes, sat on the couch and

fell asleep. He has been doing more, like yoga/exercise, with others at the

place he is now living. He says he likes it a LOT better then the other place.

He doesn't have any expressions on his face, but has a good memory for current

things. Real strange...little long term memory is left.

Lucille

l pratt wrote:

Dear Lucille - Am back to the site after some days away. I hope you

have found the articles written by Dr. Boeve at the LBDAssociation web site.

They have really been helpful to me.

The geriatric pharmacologist who works in the hospital where I do also referred

me to www.emedicine.com/neuro/topic91.htm. Excellent clinical article fairly

aunderstandable even to me: Dementia With Lewy Bodies by Crystal, MD and

well-respected editors. It's another good overview of the disease. He writes

about features that distinguish LBD from other dementias, which I recall you

wrote about before. Also about meds. He discusses Aricept, Exelon and Reminyl as

" memory meds " for those with LBD. Neither author writes about using two such

drugs (such as Aricept and Amenda) together, although the pharmacologist says

that is sometimes done with Alzheimer's. Again, it seems to have to do with how

very sensitive to meds those with LBD are. Please keep us posted - we care!

Peace, Lin

All of us here are with you in thought and prayer. Please let us know how you

and your family are doing. It is a difficult journey, as you already know, but

you do have friends here who understand.

Peace,

Lin

.