Re: New Member

Report post · September 1, 2008

Dear Kat,

We have gone through so many ups and downs with Joyce's meds, too.

It is a roller coaster ride. We have meds in place now that seem to

work - most of the time -- but even then, sometimes they don't. The

hallucinations pop up suddenly out of nowhere, the depression comes

and goes, the confusion is sometimes so total that we don't think

she'll ever come out of it and then suddenly, boom, she's totally

lucid. I am actually in awe over all of it -- not a good awe, but a

mystified, overwhelemed, sort of uncomprehending awe. I just go with

the flow, day by day. Right now, we've stuck with her combination of

meds just because overall, in general, they seem to work, and we have

learned to make changes very carefully, very slowly, and with great

caution. You are a blessing to your mother, Kat - the fact that you

are paying attention, and are tuned into your Mom's situation, is

wonderful, and I think it is much much more than she would generally

get either in a hospital or nh situation. That's based on my

personal experience, and I'm sure there are some wonderful care

facilities out there; it is just that in our experience, they've been

traumatic to Joyce, and have paid but minimal attention to her and to

her needs. Take care, Kat, and best wishes!

Kate,

Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004

(but looking back, she was symptomatic much earlier than that).

>

> Thanks for the welcome Donna.

> Any way I can cut a patch in half? Mom's really delusional on

Abilify and Exelon. I have cut the Abilify in half already.

> Kat

> Caregiver for Jane, Mom, 86, brain stem stroke survivor

2/06, diagnosed 3/08 LBD

>

> New Member

>

> Hi All,

> I have kinda been observing how things work. Here is my intro:

> My Mom has been seeing a Neurologist since her hemmoraghic brain

stem

> stroke in Feb '06. Zolpidem was given during her stay in rehab for

a

> week after the stroke. She was misdiagnosed with side effects from

> medicines and low vision (which causes hallucinations) . She is

also

> dealing with double vision and balance issues from the stroke. 20

> months after the stroke, she had learned to walk and do the stairs

> both with assistance. At 86 years young, she told her

> Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam was

> considered the wonder drug that helped control her anxiety and

> uncontrollable movements of her left leg allowing her to walk with

> little assistance. She has had care 24/7 since her stroke and

thinks

> I hold her back by not allowing her to walk by herself, " And when

are

> you going to let these girls (caregivers) go and leave me alone? "

> In 10/07 her complaint was a man singing in her head. He didn't

have

> a bad voice. He just sang the same songs over and over. Neurologist

> started with Seroquel then switched to Zyprexa. Mom had problems

> walking on these meds and was trying to perform in rehab for her

> stroke in order to qualify for more rehab. I chose rehab over the

> singing in the head. At this time we could explain away the

> hallucinations. She had several bouts with pneumonia all cured at

> home with antibiotics. Levaquin was ruled a contributor to her drug

> induced hallucinations. A neuropsych eval in 2/08 showed lewy body

> disorder without dementia. Neurologist put her on Namenda in 4/08.

> She suggested a Geriatric Psychiatrist, who took her off Namenda

and

> put her on Abilify and Exelon. No mention of the Clonazepam by the

> Psychiatrist. I worked to get the dosage up on the Clonazepam to

> help with the tremors in her left shoulder and uncontrollable

kicking

> of her left leg which seemed to be getting stiffer and she

complained

> that her foot was stuck on the floor (both stroke or so I thought).

> I then started the Abilify. I received a call at work that an

> ambulance had been called by daycare because my Mother was

> unresponsive. The Psychiatrist told me no way the Abilify would

> affect her walking. ER said she was over medicated. Hmmmm

> Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on

the

> back. Now he says Clonazepam is not good for someone hallucinating.

> Thanks. Neurologist confirms I should follow the Psychiatrist now

> that she is diagnosed. Note to self: time to accept clinical

> diagnosis of LBD any more proof will come in symptoms...until death.

> Today she is on her second week without Clonazepam. I always hated

> that drug. It's not covered by any insurance. Look forward.

> Prozac, Abilify, Exelon are the mix of the moment.

> Kat

> Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD

>

Report post · September 1, 2008

Hi again, Kat,

I just wanted to say I understand completely how overwhelming all the

conversations and situations seem. I always feel guilty that I can't

keep up with everything, and every one. But these are wonderful

people, and it is a great place to find support -- which is what we

all need. I don't think any one minds or expects us to keep up with

everything - and I know they are very forgiving

I will be praying for your migraines, Kat.

In His Peace,

Kate

Caregiver for MOL, Joyce: 83, diagnosed with LBD circa 2003/2004

(but looking back, she was symptomatic much earlier than that).

> >

> > Hi All,

> > I have kinda been observing how things work. Here is my intro:

> > My Mom has been seeing a Neurologist since her hemmoraghic brain

> stem

> > stroke in Feb '06. Zolpidem was given during her stay in rehab

for

> a

> > week after the stroke. She was misdiagnosed with side effects

from

> > medicines and low vision (which causes hallucinations) . She is

> also

> > dealing with double vision and balance issues from the stroke. 20

> > months after the stroke, she had learned to walk and do the

stairs

> > both with assistance. At 86 years young, she told her

> > Neurologist, " I'm an old lady now. I'm 86 you know. " Clonazepam

> was

> > considered the wonder drug that helped control her anxiety and

> > uncontrollable movements of her left leg allowing her to walk

with

> > little assistance. She has had care 24/7 since her stroke and

> thinks

> > I hold her back by not allowing her to walk by herself, " And when

> are

> > you going to let these girls (caregivers) go and leave me alone? "

> > In 10/07 her complaint was a man singing in her head. He didn't

> have

> > a bad voice. He just sang the same songs over and over.

> Neurologist

> > started with Seroquel then switched to Zyprexa. Mom had problems

> > walking on these meds and was trying to perform in rehab for her

> > stroke in order to qualify for more rehab. I chose rehab over the

> > singing in the head. At this time we could explain away the

> > hallucinations. She had several bouts with pneumonia all cured at

> > home with antibiotics. Levaquin was ruled a contributor to her

> drug

> > induced hallucinations. A neuropsych eval in 2/08 showed lewy

body

> > disorder without dementia. Neurologist put her on Namenda in

> 4/08.

> > She suggested a Geriatric Psychiatrist, who took her off Namenda

> and

> > put her on Abilify and Exelon. No mention of the Clonazepam by

the

> > Psychiatrist. I worked to get the dosage up on the Clonazepam to

> > help with the tremors in her left shoulder and uncontrollable

> kicking

> > of her left leg which seemed to be getting stiffer and she

> complained

> > that her foot was stuck on the floor (both stroke or so I

> thought).

> > I then started the Abilify. I received a call at work that an

> > ambulance had been called by daycare because my Mother was

> > unresponsive. The Psychiatrist told me no way the Abilify would

> > affect her walking. ER said she was over medicated. Hmmmm

> > Stop Abilify; lower Clonazepam; call Psychiatrist. He pats me on

> the

> > back. Now he says Clonazepam is not good for someone

> hallucinating.

> > Thanks. Neurologist confirms I should follow the Psychiatrist now

> > that she is diagnosed. Note to self: time to accept clinical

> > diagnosis of LBD any more proof will come in symptoms...until

death.

> > Today she is on her second week without Clonazepam. I always

hated

> > that drug. It's not covered by any insurance. Look forward.

> > Prozac, Abilify, Exelon are the mix of the moment.

> > Kat

> > Caregiver for Jane, Mother, 86, diagnosed 3/08 LBD

> >

>

Report post · September 1, 2008

Kat,

Kate and Kat I need to find a way to identify you both. And when Kate sends Kat

a message I really get going. I tried to attach you to your LO and Jane and

Joyce both start with J and that wasn't a whole lot of help.

Can you both maybe use your state abbreviation or some other identifer? That

might help. Thanks!

Anyway, Kat, I don't know if you can cut the patch in half. My Mom just couldn't

take that kind of med. I didn't even try Exlon because she had gone so wild on

Aricept and I was afraid to try a different one. And they didn't have patches

out before. Maybe the Pharmacy could help you with that if you call. One of the

things I did with one of Mom's anti-anxiety pills, was to cut it in quarters and

give it to her 4 x's a day. It worked real good and was the only med for

dementia that I gave Mom.

I know there are some pills you can't cut, but they say that is because you

might not cut them to get equal amounts. That is a different story. Maybe with

the patch, you would get the full amount but not as long. I don't know.

Anyone else here do half patches?

Maybe someone will let us know.

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.