Re: New member: trying to figure out where we are at.

[Guest guest]

Welcome to this group, . wrote you such a good description,

that I

have nothing to add. I agree that it's not a good idea to leave your Mom alone.

Not

news you wanted to hear, I'm sure. I recently retired to care for my 63 yr. old

husband

still in the early stages. He cannot make good decisions and when he falls he

has

trouble getting back up. Now that I am home with him, his anxiety has lessened

and

he is much improved......for a while.

Mai-Liis

New member: trying to figure out where we are at.

My mother was diagnosed with LBD about a year ago. Mother is a

retired RN who worked at a psychiatric hospital for 20 years. She

does not acknowledge that there is anything wrong with her at all.

We became aware that she was having memory problems, delusions and

personality changes in 1996. In 1997 and 1998 she was hospitalized

twice due psychotic delusions and has been on Zyprexa since then.

Mother's memory has continued to deteriorate steadily. She developed

a Parkinsonian tremor sometime in 2000 that has also worsened in the

last year. At the time she was diagnosed with LBD the doctor added

Ariacept. Also at that time we moved her out her house where she had

been living alone and in with us. Mom is still alone for a good part

of every day. I am 41, working fulltime 30 miles from home. I have a

husband and two teenagers.

Presently her physical condition is fairly stable so far. She has not

had problems walking or with falls. She can dress and feed herself

and use the bathroom. It is a struggle to get her to bathe or shower.

She tires with walking and has some weakness in her hands. She is

losing the ability to make conversation she can not find the words.

She avoids reading. She sleeps a lot and spends most of her waking

hours watching TV. I attempted to enrolled her in an Adult day

program and she refused to go. She was never involved in social

clubs. Her life was home, family, work and church on Sunday. She

never participated in any of her 9 children's clubs, teams, or

activities. So her refusal to go to that program was not a surprise.

I want to figure out where she is in the progression of this disease.

I've read that it progresses more rapidly that Alzheimers. If her

earliest symptoms were the beginning of LBD then she has had this 6-7

years? Will her medication slow the progression of LBD? It has not

improved it. Do patients with LBD wander? become aggressive or

agitated? Most of the time Mother is almost like a zombie. I am

watching for changes but need to make plans for her future care and

would like to have some idea of a timeline if possible.

Any advice would be appreciated.

[Guest guest]

Hi . I think your mom sounds a bit like my mom. She was diagnosed at

84, just over a year ago, after being tested for psychotic episodes - I

think the forgetting or substitution of words may have started 10 or 12

years ago - just the odd one. We didn't think too much about it. 2 years

ago this past March, she came to me saying that one of the kids had gone

aw3ay for the weekend and left his radio on and that it played Lady in Red

all night long. Of course he hadn't. That was the beginning. By the end

of the summer, she was receiving broadcasts in her head 24/7. By November,

she was having threatening delusions, and command hallucinations. We had to

take her to emerg. Zyprexa, Seroquel and a number of other drugs were tried

with no success and some terrible side effects. Her liver shut down. She

developed cysts on her pancreas, and her spleen enlarger to 13 cm which I

understand is not a good thing. They diagnosed her with lbd because all

other tests were -ve. She had cat scans, pet scans, mri's , spect scans,

eegs and a lot of blood work. Basically nothing. Because she had a fall

almost every year, it was a provisional diagnosis of LBD. They thought she

had cancer but when they changed her to Risperdal and aricept, the liver

problems improved. She did have side effects though. Although the

delusions and hallucinations improved, her voice changed - I've compared it

to Bob Thornton in Sling Blade. It was probably dystonia, or muscle

spasms in her diaphragm. She went into a nursing home a year ago February,

broke her hip in April, broke her femur in May, contracted pneumonia in

December and passed away last week. I believe this was an unusually rapid

progression due to the falls, her being prone to pneumonia (she'd had is 5

years ago and it lasted a very long time as well) and the fact that her

diaphragm was affected by the meds. It's a trade -off, I think. Quality of

life or duration of life, sometimes. I wish you all the best.

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[Guest guest]

Hello. I am so glad you found this group. I just joined in January and

have found the support and knowledge to be so very helpful.

My dad is 64 and has been diagnosed with LBD for 4 1/2 yrs. I know you

asked about a timeline and unfortunately there doesn't seem to be one

that this disease follows. My dads neurologist initially told us a

progression rate of about 5-7 yrs. with him ending up unable to walk, in

a wheelchair, head hung forward and incoherent. I think that may be

somewhat of an average, yet as you will find in this group there seems

to be no real average. As for meds. slowing down the progression.....I

have found that nothing really slows it down, we are actually just

treating the symptoms so dad can cope and have the most normal life

possible. He has been in a nursing home for a total of 3 yrs mainly for

safety reasons and not being able to really take care of himself. You

may find that caring for an LBD patient can be very consuming both with

time and emotions. I wish you the very best, and before you decide on

where your mom should live for the future, ask many questions, research

respite care and nursing homes. Find out medications best suitable for

LBD patients and always know that the decisions you make are going to be

the best you can make with the knowledge you have gathered. Also, I

have found that much prayer has gotten me through some otherwise dark

days.

Sandie

Des Moines, IA

[Guest guest]

May I suggest that you need an objective assessment by a trained

stranger. When my mother first moved in with me, I often left her in

the house alone for a few hours while I went for groceries or to a

Saturday morning class. Social workers told me that I was wrong to do

so but I thought they were alarmists. Today I realize that they

probably saw things I couldn't see. I still saw " mother " and they saw

any old patient and that perspective makes a big difference. I was

lucky and nothing went wrong. But she already had very poor judgement

as well as hallucinations and delusions. Something could have gone

wrong.

She's in a nursing home now and hates it. She wants to come home and

cook me supper at night. The thought of her playing with fire is

enough to convince me that she needs to stay in the nursing home.

> My mother was diagnosed with LBD about a year ago. Mother is a

> retired RN who worked at a psychiatric hospital for 20 years. She

> does not acknowledge that there is anything wrong with her at all.

> We became aware that she was having memory problems, delusions and

> personality changes in 1996. In 1997 and 1998 she was hospitalized

> twice due psychotic delusions and has been on Zyprexa since then.

> Mother's memory has continued to deteriorate steadily. She

developed

> a Parkinsonian tremor sometime in 2000 that has also worsened in

the

> last year. At the time she was diagnosed with LBD the doctor added

> Ariacept. Also at that time we moved her out her house where she

had

> been living alone and in with us. Mom is still alone for a good

part

> of every day. I am 41, working fulltime 30 miles from home. I have

a

> husband and two teenagers.

> Presently her physical condition is fairly stable so far. She has

not

> had problems walking or with falls. She can dress and feed herself

> and use the bathroom. It is a struggle to get her to bathe or

shower.

> She tires with walking and has some weakness in her hands. She is

> losing the ability to make conversation she can not find the words.

> She avoids reading. She sleeps a lot and spends most of her waking

> hours watching TV. I attempted to enrolled her in an Adult day

> program and she refused to go. She was never involved in social

> clubs. Her life was home, family, work and church on Sunday. She

> never participated in any of her 9 children's clubs, teams, or

> activities. So her refusal to go to that program was not a surprise.

>

> I want to figure out where she is in the progression of this

disease.

> I've read that it progresses more rapidly that Alzheimers. If her

> earliest symptoms were the beginning of LBD then she has had this 6-

7

> years? Will her medication slow the progression of LBD? It has not

> improved it. Do patients with LBD wander? become aggressive or

> agitated? Most of the time Mother is almost like a zombie. I am

> watching for changes but need to make plans for her future care and

> would like to have some idea of a timeline if possible.

> Any advice would be appreciated.

[Guest guest]

Where do find a trained professional that does in-home assessments?

In rural Wisconsin?

At this point she isn't falling or wandering. She isn't getting up

until 10:30-11 am; her lunch is delivered by Meals on Wheels right

around noon. And the kids are getting home from school at 3pm. I know

it isn't the best solution but it is manageable for now. We talked

about bringing in a home health aide several times week to help her

bathe and keep her company. She doesn't want a stranger around. She

won't answer the phone or the door. She doesn't attempt to cook. She

doesn't even let the dog out. I keep a watchful eye for changes:

stumbling, difficulty eating or swallowing, behavior or mood changes.

For now it is all that we can do. Her one unchanged characteristic is

her stuborness.

Cute story--, our dog [sammy is a sheltie/irish setter mix--

not very big] has been extremely protective of Mom.

The kids are on spring break this week and we are having our main

bathroom remodeled. Sammy has spent most of every day while the

contractor has been there practically sitting on Mom's lap. To

protect her from that strange man and all of the scary noises. It is

very sweet. I wish I could train the dog to use the phone in an

emergency.

> > My mother was diagnosed with LBD about a year ago. Mother is a

> > retired RN who worked at a psychiatric hospital for 20 years. She

> > does not acknowledge that there is anything wrong with her at all.

> > We became aware that she was having memory problems, delusions

and

> > personality changes in 1996. In 1997 and 1998 she was

hospitalized

> > twice due psychotic delusions and has been on Zyprexa since then.

> > Mother's memory has continued to deteriorate steadily. She

> developed

> > a Parkinsonian tremor sometime in 2000 that has also worsened in

> the

> > last year. At the time she was diagnosed with LBD the doctor

added

> > Ariacept. Also at that time we moved her out her house where she

> had

> > been living alone and in with us. Mom is still alone for a good

> part

> > of every day. I am 41, working fulltime 30 miles from home. I

have

> a

> > husband and two teenagers.

> > Presently her physical condition is fairly stable so far. She has

> not

> > had problems walking or with falls. She can dress and feed

herself

> > and use the bathroom. It is a struggle to get her to bathe or

> shower.

> > She tires with walking and has some weakness in her hands. She is

> > losing the ability to make conversation she can not find the

words.

> > She avoids reading. She sleeps a lot and spends most of her

waking

> > hours watching TV. I attempted to enrolled her in an Adult day

> > program and she refused to go. She was never involved in social

> > clubs. Her life was home, family, work and church on Sunday. She

> > never participated in any of her 9 children's clubs, teams, or

> > activities. So her refusal to go to that program was not a

surprise.

> >

> > I want to figure out where she is in the progression of this

> disease.

> > I've read that it progresses more rapidly that Alzheimers. If her

> > earliest symptoms were the beginning of LBD then she has had this

6-

> 7

> > years? Will her medication slow the progression of LBD? It has

not

> > improved it. Do patients with LBD wander? become aggressive or

> > agitated? Most of the time Mother is almost like a zombie. I am

> > watching for changes but need to make plans for her future care

and

> > would like to have some idea of a timeline if possible.

> > Any advice would be appreciated.

[Guest guest]

Sammy may prove to be your mom's best friend through all of this. God bless

Sammy.

>Cute story--, our dog [sammy is a sheltie/irish setter mix--

>not very big] has been extremely protective of Mom.

>The kids are on spring break this week and we are having our main

>bathroom remodeled. Sammy has spent most of every day while the

>contractor has been there practically sitting on Mom's lap. To

>protect her from that strange man and all of the scary noises. It is

>very sweet. I wish I could train the dog to use the phone in an

>emergency.

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[Guest guest]

I would like to suggest some places to possibly give you help with

in-home assessments. First, if your mom has a neurologist, call the

office and tell them what you are looking for. They have geriatric

referrals to give.....especially for patients with dementia. I called

our Mercy Nurse, which can give many different referrals for a nurse to

come in if there is a need, to a home health aid, to adult day cares.

For a home health aid to come, I had to call dads neurologists office

and have the dr write a letter stating that dad " needed a home health

aid to come into his home " and this kind of referred through the dr the

actual " need " instead of just my need. We also have an organization

called Generations that did in-home assessments, dealing with in-home

health care. You can also call the Department of Human Services to find

out what help they may have, also, any referrals they may give. I found

there is a Peer Advocate Program which was volunteers that would go to

dads apartment and sit with him, possibly doing light cleaning. And

lastly, we have a department called Aging Resources, which have

advocates and mediators to help assist with some of the paper work and

leg work needed to get help in the home. I hope some of this is helpful

and please ask again if I can be of more help. You may also email be

personally if I can help or if you have further questions. Good Luck!!

Sandie

Des Moines, Iowa

[Guest guest]

We got an assesment because my mother's doctor sent a visiting nurse

to my home when mother moved in with me. When my mother begged for

help for my sister, the nurse sent a social worker. That social

worker tried to start an investigation of my sister for elder abuse

and that got another set of social workers involved (although nothing

came of the investigation because my mother wouldn't cooperate.)

Somewhere in all that chaos, people started telling me what they

thought mother's level of functioning was.

Over all, I don't think the social workers made a positive

contribution to the situation at all--the primary social worker was

totally insensative to our ethnic background and when I objected to

that, she also threatened to move mother to the apartment of the

sister who was supposed to be being investigated. In the end, my

other sister and her husband had to step in and ensure that I

remained the one who took care of mother. The court costs were enough

to cover a month and half of nursing home care--not small potatoes.

However, I did get exposure to other people's perceptions of my

mother.

Also, the visiting nurse sent a physical therapist into the house for

a few weeks and he told me what kind of bed rail to buy, where to

move the coffeetable, to go out and get a commode etc. He was very

helpful and not emotionally draining like the social workers.

> > > My mother was diagnosed with LBD about a year ago. Mother is a

> > > retired RN who worked at a psychiatric hospital for 20 years.

She

> > > does not acknowledge that there is anything wrong with her at

all.

> > > We became aware that she was having memory problems, delusions

> and

> > > personality changes in 1996. In 1997 and 1998 she was

> hospitalized

> > > twice due psychotic delusions and has been on Zyprexa since

then.

> > > Mother's memory has continued to deteriorate steadily. She

> > developed

> > > a Parkinsonian tremor sometime in 2000 that has also worsened

in

> > the

> > > last year. At the time she was diagnosed with LBD the doctor

> added

> > > Ariacept. Also at that time we moved her out her house where

she

> > had

> > > been living alone and in with us. Mom is still alone for a good

> > part

> > > of every day. I am 41, working fulltime 30 miles from home. I

> have

> > a

> > > husband and two teenagers.

> > > Presently her physical condition is fairly stable so far. She

has

> > not

> > > had problems walking or with falls. She can dress and feed

> herself

> > > and use the bathroom. It is a struggle to get her to bathe or

> > shower.

> > > She tires with walking and has some weakness in her hands. She

is

> > > losing the ability to make conversation she can not find the

> words.

> > > She avoids reading. She sleeps a lot and spends most of her

> waking

> > > hours watching TV. I attempted to enrolled her in an Adult day

> > > program and she refused to go. She was never involved in social

> > > clubs. Her life was home, family, work and church on Sunday.

She

> > > never participated in any of her 9 children's clubs, teams, or

> > > activities. So her refusal to go to that program was not a

> surprise.

> > >

> > > I want to figure out where she is in the progression of this

> > disease.

> > > I've read that it progresses more rapidly that Alzheimers. If

her

> > > earliest symptoms were the beginning of LBD then she has had

this

> 6-

> > 7

> > > years? Will her medication slow the progression of LBD? It has

> not

> > > improved it. Do patients with LBD wander? become aggressive or

> > > agitated? Most of the time Mother is almost like a zombie. I am

> > > watching for changes but need to make plans for her future care

> and

> > > would like to have some idea of a timeline if possible.

> > > Any advice would be appreciated.

[Guest guest]

Sorry to hear about your mother. Please go the the website listed below and

click on links. You will find a lot of info there.

Other thoughts. Is Zyprexa safe with LBD? Certain neuroleptics can be

dangerous. Is your doctor familiar with LBD? I'm not s

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

[Guest guest]

Imelda

It is so nice to see your name on an email. I hope all is well with

you. Concerning the Zyprexa. My dad takes Zyprexa (10 mg in a.m., and

7.5 mg in afternoon) and it seems to be doing fine with him. Of course,

as we have all noticed, this may not be the case with anyone else. So

far, so good with my dad though. Good luck to you Imelda, and again, it

is wonderful seeing your name in here again.

Sandie

Des Moines, IA