my mom

January 16, 2006

Hi Marcie

So sorry you had to find us this way. My Mom also was dx with LBD

in 2005 and has drastically declined. Have they tried Aricept for

your Mom? It is one of the drugs of choice for LBD. My Mom is on

that and Namenda and it is helping some. We have not had to try the

seroquel yet. I do know some drugs are definitely not for LBders.

I have some friends in St Louis. I will ask around for a good Dr

who deals with dementia, etc. and get back to you. I am from the

Quad Cities - Davenport, IA.

Kathy S

>

> Hi,

> This is my first post. My mom was treated for depression from Jan-

> 04 through Aug-04, then given shock treatments due intially to

> anxiety.

> I continually begged doctors to give her a pet scan to determine

> what they were treating, depression or dementia. After all the

anti-

> depresants, increasing dosages, changing meds, then 9 shock

> treatments, a doctor O. K.'d a pet scan in September 2005.

Diagnosed

> as LB.

> What really bothers me is my moms current state, she is taking

> Memantine and Seraquil (I don't know if I am spelling correctly)

but

> daily her condition gets worse, she can not finish one sentence,

she

> cries, she wants to end her suffering.

> Is this typical of LB, the misery? Are there any other

medications

> that might help? This has happened so fast; Christmas 2004 she was

> laughing and talking, walking well until put on anti-depressants.

> She is losing her mind, literally, and it is devastating. If

anybody

> has any suggestions, knows of any good doctors around St. Louis,

> MO., or provide any information I would so much appreciate hearing

> from you.

> Thank you,

> Marcie

>

January 16, 2006

Marcie:

I'd love to be able to tell you that your Mom will get better but the

incomplete sentances and the sadness are pretty typical. My Mum as

well was realtively " normal " at Christmas 2004. Some parkinsons and

some ahlziemers symptoms. She had a breakdown (not sure what caused

it) almost exactly a year ago and landed in the hospital. Since then

she has been unable to finish a sentance, is frequently moved to tears

etc. My Mum is on Aricept and Seroquel. I find Mum has about 1 or 2

" good " days a month.

I can't help with any MD's (I am in Canada) but feel free to ask

questions, share coping strategies, scream and rant. We are hear to

give each other support and as much help as we can.

from Manilla, ON

(CG to mother Margaret, aged 75 in Toronto, ON)

--- marcie9870 wrote:

---------------------------------

Hi,

This is my first post. My mom was treated for depression from Jan-

04 through Aug-04, then given shock treatments due intially to

anxiety.

I continually begged doctors to give her a pet scan to determine

what they were treating, depression or dementia. After all the anti-

depresants, increasing dosages, changing meds, then 9 shock

treatments, a doctor O. K.'d a pet scan in September 2005. Diagnosed

as LB.

What really bothers me is my moms current state, she is taking

Memantine and Seraquil (I don't know if I am spelling correctly) but

daily her condition gets worse, she can not finish one sentence, she

cries, she wants to end her suffering.

Is this typical of LB, the misery? Are there any other medications

that might help? This has happened so fast; Christmas 2004 she was

laughing and talking, walking well until put on anti-depressants.

She is losing her mind, literally, and it is devastating. If anybody

has any suggestions, knows of any good doctors around St. Louis,

MO., or provide any information I would so much appreciate hearing

from you.

Thank you,

Marcie

Welcome to LBDcaregivers.

January 16, 2006

:

Thank you for your reply. Does your Mum know she is sick? My Dad

did not tell my Mom and she thought she would get better. For a

short time I did too. My Mom's personality is gone, she rarely

laughs and struggles to remember, it is so painful. How do you

cope? And the decline is so steep her doctors wanted to give her

more shock treatments for the depression. I don't understand, but

thank you so much for writing me back.

Do you have siblings or is your Dad able to help?

Marcie

In LBDcaregivers , Skrabek <skrabek@y...> wrote:

>

> Marcie:

>

> I'd love to be able to tell you that your Mom will get better but

the

> incomplete sentances and the sadness are pretty typical. My Mum as

> well was realtively " normal " at Christmas 2004. Some parkinsons

and

> some ahlziemers symptoms. She had a breakdown (not sure what

caused

> it) almost exactly a year ago and landed in the hospital. Since

then

> she has been unable to finish a sentance, is frequently moved to

tears

> etc. My Mum is on Aricept and Seroquel. I find Mum has about 1

or 2

> " good " days a month.

>

> I can't help with any MD's (I am in Canada) but feel free to ask

> questions, share coping strategies, scream and rant. We are hear

to

> give each other support and as much help as we can.

>

> from Manilla, ON

> (CG to mother Margaret, aged 75 in Toronto, ON)

>

> --- marcie9870 <willenbrinbrink@s...> wrote:

>

> ---------------------------------

> Hi,

> This is my first post. My mom was treated for depression from Jan-

> 04 through Aug-04, then given shock treatments due intially to

> anxiety.

> I continually begged doctors to give her a pet scan to determine

> what they were treating, depression or dementia. After all the

anti-

> depresants, increasing dosages, changing meds, then 9 shock

> treatments, a doctor O. K.'d a pet scan in September 2005.

Diagnosed

> as LB.

> What really bothers me is my moms current state, she is taking

> Memantine and Seraquil (I don't know if I am spelling correctly)

but

> daily her condition gets worse, she can not finish one sentence,

she

> cries, she wants to end her suffering.

> Is this typical of LB, the misery? Are there any other

medications

> that might help? This has happened so fast; Christmas 2004 she was

> laughing and talking, walking well until put on anti-depressants.

> She is losing her mind, literally, and it is devastating. If

anybody

> has any suggestions, knows of any good doctors around St. Louis,

> MO., or provide any information I would so much appreciate hearing

> from you.

> Thank you,

> Marcie

>

> Welcome to LBDcaregivers.

>

January 24, 2006

my mom has had lbd for at least 5 or more years. she is no longer on any

medications because her mind is pretty well in it's own place. we can

occasionally get coherent answers from her, but not often. as the disease

progresses, she has gotten stiffer and it's getting harder for the nh staff to

feed her. I'm wondering how much longer she'll be with us--anyone have any

ideas on last stages of this? and when the end comes, do we keep her in the nh

or move her to a hospice? At this point, as awful as it sounds, I feel like my

mom is already gone and just her body is here.

---------------------------------

What are the most popular cars? Find out at Yahoo! Autos

January 30, 2006

Donna,

I live with your pain as well. It is so very difficult to live with this end of

life decline, wish

for the death of our loved ones, but know that is in their best interest.

Caring for the shell

of who they were is so difficult. It is good to know we are not alone in this,

but at the

same time, I am so sorry for what you are going through.

> >

> > my mom has had lbd for at least 5 or more years. she is no longer

> on any medications because her mind is pretty well in it's own

> place. we can occasionally get coherent answers from her, but not

> often. as the disease progresses, she has gotten stiffer and it's

> getting harder for the nh staff to feed her. I'm wondering how

> much longer she'll be with us--anyone have any ideas on last stages

> of this? and when the end comes, do we keep her in the nh or move

> her to a hospice? At this point, as awful as it sounds, I feel like

> my mom is already gone and just her body is here.

> >

> > ---------------------------------

> >

> > What are the most popular cars? Find out at Yahoo! Autos

> >

January 30, 2006

deb, .

the course of the disease is hard, it goes at its own pace not a

predeteremined pace, my dad was diagnosed in 5/2004 and was walking prior

to the hospitalizaiton but came out using a walker, it wasnt long before we

needed to have someone here with him if we went anywhere, dad fell in july

2005, broke his hip ball and had surgery, dad died less than 3 months later.

the end for him was very very quick. dad had 2 bouts of aspiration

pneumonia and a pulmonary embolyis (lung blood clot) and also one bout with

a uti, once dad had the surgery for his hip that was the start of the end

for him. enjoy even the simple things, dad had a very babyish giggle when

he was happy and i love remembering it, dads blood pressure kept dropping

and raising (orthostatic blood pressure) and ultimately his blood pressure

started dropping and one time didnt come back up. keep you mom comfortable

if she needs pain meds (dad was on 2 lortab 7.5 every 6 hours) dad died in

the nh, but whatever you feel comfortable with is where she should be. if

you want her in hospice and home keep her there, but it is ok to put her in

a nh if you have things uyou cannot deal with, we had a hard time changing

dad as he was over 6ft tall and even tho he lost a lot of weight 183 lbs was

alot for us to try to manipulate to change him so dad remained in the nh

after his surgery. whichever you decide know that it is the best decision

for you and dont try to second guess or use hind sight. good luck and hugs

sharon ,

-- my mom

my mom has had lbd for at least 5 or more years. she is no longer on any

medications because her mind is pretty well in it's own place. we can

occasionally get coherent answers from her, but not often. as the disease

progresses, she has gotten stiffer and it's getting harder for the nh staff

to feed her. I'm wondering how much longer she'll be with us--anyone have

any ideas on last stages of this? and when the end comes, do we keep her in

the nh or move her to a hospice? At this point, as awful as it sounds, I

feel like my mom is already gone and just her body is here.

---------------------------------

What are the most popular cars? Find out at Yahoo! Autos

January 30, 2006

Hi Deb,

Sounds like both our mothers are in the same place. I, too, often

wonder how long mom will be with us. Is your mom still able to swallow

OK? My mom is having problems, refuses to eat the pureed food so we

give her an ensure like product when she doesn't eat well.

Its so hard to tell when the end is near as I have seen LO's here pass

away in far better physical and mental state then my mother is in.

Our hearts just break knowing that our moms will be going soon yet in

many ways they have already left us. Since I don't know what more to do

to help mom I just usually hold her hand or fuss over her and talk to

her about our family. When I've run out of things to say I just sit

there with her quietly. I try to keep the tears for when I get home.

Sending you strength.

Courage

February 1, 2006

Hello Everyone,

It seems my Uncle has joined this " walking dead club. " He has been this way

ever since he came back from 5 days respite at a nursing facility. He walked

to the ambulance that transferred him to the facility when he left on a

Tuesday and was brought home on a gurney on Sunday. Hasn't been the same since

and

it has been quite a transition. From " here-MOST-of-the-time " to " GONE WITH

THEEE WIND. " We are now, as put it, " Caring for the shell " of who he

was.

He seems to have had a stroke of some sort and lost 11 pounds in those five

days plus he was severely dehydrated! They gave him Seroquel without my

permission (I didn't sign the permission paper for anti-psychotic drugs because

he

is so sensitive to meds), and I just wonder what else they gave him.

I am trying to find home care to help me out because he sleeps most of the

time now with his eyes open, can't use his left hand/arm...he's left

handed...can't function well enough to go to the bathroom (doesn't know how to

do it),

can't stand or get in or out of bed, and has somehow managed to befriend and

FEED an imaginary cat named Bouncy! I have been taping sections of this

activity

because I am stunned that he changed so much in just 5 days!

Can't believe this has happened! My Uncle has been with me 24/7 for the past

three years and this " respite " was the first time we have been apart. I

spent a lot of time during those five days at the nursing facility trying to get

him taken care of (that's another two hours of writing that I have documented!)

because.....listen carefully world....NOT ONE EMPLOYEE in that nursing

facility....knew what Lewy Body Dementia was! Unbelievable!

..........Walking dead club indeed! Hold tight to your Loved One's. Thanks

for listening, Stevie in CA

* * * * * * *

Donna,

I live with your pain as well. It is so very difficult to live with this end

of life decline, wish

for the death of our loved ones, but know that is in their best interest.

Caring for the shell

of who they were is so difficult. It is good to know we are not alone in

this, but at the

same time, I am so sorry for what you are going through.

>

> Deb,

>

> You are not alone. My dad (81) has had LBD for apx 5-7 yrs. He just

> sleeps and will eat (if fed) but nothing coherent and rarely are his

> eyes open. He has been a memeber of the " walking dead club " as I

> call it for a long time. My sister and I pray all the time that God

> takes him soon because he is not alive in any sense of the word. We

> have conservatorship and health care agent and no medical

> intervention is allowed when his time comes all we want is for him

> not to feel pain.. He rarely tries to get up and must be helped

> everywhere..... As much as WE NEED to see him we also want him to be

> at peace. I too wish I knew how much longer but even the doctor is

> vague on that as it can vary greatly... Stay strong.and ifwe can

> keep them without pain even if nothing else and if each of us can

> educate people on this disease we have honored them as best we can.

>

February 1, 2006

Thank you Sharon for the suggestion! I live close to a big Hospital and

maybe they can spare some starving students. I'll need one for me too. LOL

Thanks again and hope you are feeling better, Stevie

* * * * * * * * *

may i suggest possibly a nursing school where you may have eager students

who want to earn some extra money as well as hands on exp. hugs sharon m

February 1, 2006

may i suggest possibly a nursing school where you may have eager students

who want to earn some extra money as well as hands on exp. hugs sharon m

-- Re: Re: my mom

Hello Everyone,

It seems my Uncle has joined this " walking dead club. " He has been this way

ever since he came back from 5 days respite at a nursing facility. He

walked

to the ambulance that transferred him to the facility when he left on a

Tuesday and was brought home on a gurney on Sunday. Hasn't been the same

since and

it has been quite a transition. From " here-MOST-of-the-time " to " GONE WITH

THEEE WIND. " We are now, as put it, " Caring for the shell " of who he

was.

He seems to have had a stroke of some sort and lost 11 pounds in those five

days plus he was severely dehydrated! They gave him Seroquel without my

permission (I didn't sign the permission paper for anti-psychotic drugs

because he

is so sensitive to meds), and I just wonder what else they gave him.

I am trying to find home care to help me out because he sleeps most of the

time now with his eyes open, can't use his left hand/arm...he's left

handed...can't function well enough to go to the bathroom (doesn't know how

to do it),

can't stand or get in or out of bed, and has somehow managed to befriend and

FEED an imaginary cat named Bouncy! I have been taping sections of this

activity

because I am stunned that he changed so much in just 5 days!

Can't believe this has happened! My Uncle has been with me 24/7 for the

past

three years and this " respite " was the first time we have been apart. I

spent a lot of time during those five days at the nursing facility trying to

get

him taken care of (that's another two hours of writing that I have

documented!)

because.....listen carefully world....NOT ONE EMPLOYEE in that nursing

facility....knew what Lewy Body Dementia was! Unbelievable!

...........Walking dead club indeed! Hold tight to your Loved One's. Thanks

for listening, Stevie in CA

* * * * * * *

Donna,

I live with your pain as well. It is so very difficult to live with this

end

of life decline, wish

for the death of our loved ones, but know that is in their best interest.

Caring for the shell

of who they were is so difficult. It is good to know we are not alone in

this, but at the

same time, I am so sorry for what you are going through.

>

> Deb,

>

> You are not alone. My dad (81) has had LBD for apx 5-7 yrs. He just

> sleeps and will eat (if fed) but nothing coherent and rarely are his

> eyes open. He has been a memeber of the " walking dead club " as I

> call it for a long time. My sister and I pray all the time that God

> takes him soon because he is not alive in any sense of the word. We

> have conservatorship and health care agent and no medical

> intervention is allowed when his time comes all we want is for him

> not to feel pain.. He rarely tries to get up and must be helped

> everywhere..... As much as WE NEED to see him we also want him to be

> at peace. I too wish I knew how much longer but even the doctor is

> vague on that as it can vary greatly... Stay strong.and ifwe can

> keep them without pain even if nothing else and if each of us can

> educate people on this disease we have honored them as best we can.

>

February 1, 2006

Hi Stevie,

I am very sorry to hear about your Uncle. Every year I leave Jim in

Assisted Living to go on respite for a week and have never

experienced your problem. I am going to DC and he will again go

to an AL facility. Was it a Nursing Home or Assisted Living that

your Uncle stayed in? In Assisted Living they can not administer

Haldol or Ativan or any medications not on the list of medications

to give. A Nursing Home/Convalescent Home can administer

injections and medications such a Haldol or Ativan if they see fit.

I hope they did not give him any of those medications to keep

him quiet. I know you said they gave him Seroquel. So many of

our LOs are on that including mine that are not effected by it in an

adverse way. It sounds more like Haldol to me. The hospital

gave my husband Haldol against my request not to give it to him.

When the shift changed over the doctor apparently didn't read the

chart. My husband acted like your Uncle, but came out of it after a

few weeks and was back to his normal self, except that he

started having seizures, which he never had before the Haldol.

I hope this is something that your Uncle will pull through and be

his normal self again. I HATE THIS DREADED DISEASE AND

WHAT WE ALL HAVE TO EXPERIENCE!

It makes me sick to hear things like you are describing. Today,

Jim's primary doctor, not his neurologist that diagnosed Jim with

LBD, but his primary doctor called today to ask questions about

Jim's health, because she is filling out the physician's report for

the facility where Jim will be staying and she asked if he has

" Sundowning " I explained to her LBD is not like Alzheimers in

that way, his confusion fluctuates hour to hour day to day and

she just skipped to the next question and continued, not even

acknowledging what I had said. In my opinion she didn't even

care what I had said to make note of the difference.

You are in my thoughts, Jan

> >

> > Deb,

> >

> > You are not alone. My dad (81) has had LBD for apx 5-7 yrs.

He just

> > sleeps and will eat (if fed) but nothing coherent and rarely are

his

> > eyes open. He has been a memeber of the " walking dead

club " as I

> > call it for a long time. My sister and I pray all the time that

God

> > takes him soon because he is not alive in any sense of the

word. We

> > have conservatorship and health care agent and no medical

> > intervention is allowed when his time comes all we want is

for him

> > not to feel pain.. He rarely tries to get up and must be helped

> > everywhere..... As much as WE NEED to see him we also

want him to be

> > at peace. I too wish I knew how much longer but even the

doctor is

> > vague on that as it can vary greatly... Stay strong.and ifwe can

> > keep them without pain even if nothing else and if each of

us can

> > educate people on this disease we have honored them as

best we can.

> >

>

February 2, 2006

Hello Jan,

It was a nursing home that he was in for 5 days. The head nurse thought he

was " incoherant " because she DIDN'T LISTEN to what I was saying about his LBD

condition. I am reporting the facility because they asked me to sign a paper

to give him anti-psychotics and I refused. They gave him something anyway.

They DID give him Seroquel, of which he has had only one of them here at home,

and I don't think that would make him this disabled. He doesn't even know how

to go to the bathroom anymore.....has no idea what to do when he gets in

there....so now he is in diapers! Come to think of it...the nurse did say

something about Ativan too. I should get the report soon and hopefully get to

the

bottom of this. He is so disabled now that he wants to shoot himself again. We

have gone backwards.

I am glad you have found a NH for respite. I don't think I will do that ever

again because of what happened.

Thank you so much for your response and have a great time in DC! Peace to

you, Stevie in Southern CA.

* * * * * * * *