RE: My Mom's Story

[Guest guest]

Mariea,

You could be telling my story, except I did only have one hospital

visit. I also got a nh that wouldn't work with me and she is still

there. Every time they put her on meds, I take her off. They would like

to get rid of me and tried to get me to put her in the hospital. I

refused. And it has been steadily down hill. My Mom is 88. I had her

for 3 years with me, going to day care, staying at my daughter's house

while I worked and didn't sleep AT ALL every other night and never slept

days anyway.

I have never been able to get a LBD dx. I am still pretty sure she

doesn't have the Alzheimers dx that she has been given. I just keep

talking about LBD. And taking articles for them to read. The Psych at

the hospital, " you treat all dementias alike. " And we had a 20 day stay

and almost a 20 thousand dollar bill. And I took her off all the meds

they put her on when I got her to the nh. They weren't happy with me

but she woke up and came around some.

I continue to battle with MDs and nh. So I know how frustrating it must

be for you. It has been for me.

Donna

My next house will have no kitchen, just vending machines. Courtesy of

The-Mouth.com

[Guest guest]

Sorry Group,

I answered Mariea out of my other account where I also receive messages.

There is really no change in address.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

[Guest guest]

Geez, Mariea, but you have been through the mill!! What a relief that you

have found a good place for your mom and a doctor that listens. Critical!

You described a lot of LBD symptoms and behaviors. Parkinsonism doesn't show

up at the same time in all patients, and tremors are unusual. But there is a

lot going on in the research world right now trying to refine the definition

of the disease. I suspect we have a continuum with offshoots here and there

for the discrepancies. What we do know for sure right now is that there

isn't any treatment for the disease, only management of symptoms, which is

what your mom's doctor told you.

I hope you can get some rest now and some alone time with you husband.

You'll need to regather your strength for who-knows-what next.

Cheryl

[Guest guest]

Geez, Mariea, but you have been through the mill!! What a relief that you

have found a good place for your mom and a doctor that listens. Critical!

You described a lot of LBD symptoms and behaviors. Parkinsonism doesn't show

up at the same time in all patients, and tremors are unusual. But there is a

lot going on in the research world right now trying to refine the definition

of the disease. I suspect we have a continuum with offshoots here and there

for the discrepancies. What we do know for sure right now is that there

isn't any treatment for the disease, only management of symptoms, which is

what your mom's doctor told you.

I hope you can get some rest now and some alone time with you husband.

You'll need to regather your strength for who-knows-what next.

Cheryl

[Guest guest]

In a message dated 7/12/02 11:11:14 AM Central Daylight Time,

rae900@... writes:

> The Psych at the hospital, " you treat all dementias alike. "

That's a red flag, Donna!! Any chance you can get someone or somewhere else?

Cheryl

[Guest guest]

In a message dated 7/12/02 11:11:14 AM Central Daylight Time,

rae900@... writes:

> The Psych at the hospital, " you treat all dementias alike. "

That's a red flag, Donna!! Any chance you can get someone or somewhere else?

Cheryl

[Guest guest]

,

Last Fall Mom had a Geriatric Assessment done and they tacked on the

Alzheimers. It was with the second GeroPsych hospitalization the treating

Psychiatrist and Neurologist gave the LBD diagnosis. After I started reading

about the LBD, it put the pieces in to place for me.

Thanks,

Mariea

[Guest guest]

Hi Mariea. I am so sorry to hear about your mother. You have been through

so much. What a lucky mom to have you! Sounds like your mother has had a

lot of stoke related symptoms along with the dementia. Have they mentioned

anything about Alzheimer's yet? It is so hard to define these two causes of

dementia as they can be very similar. I know here, where I work, (a

hospital in Minneapolis), the combative and confused symptoms are very

evident in our Alzheimer's patients. This along with your mom's vascular

issues, could certainly prove a difficult combination. Has she been

monitored by a vascular doctor? Perhaps if the vascular doctor could get in

touch with the neurologist and psychiatrist, perhaps then they could come up

with the proper dx if the psychiatrist is truly not happy with the LBD dx.

I will keep you, your mom and family in my prayers. Please keep us posted.

The best of luck to you.

> My Mom's Story

>

> I just joined the group a few weeks ago. Mom was just given the Dx

> of LBD a little over a month ago.

> I know this will be long, but hopefully it will help myself and

> others.

> Mom was dx with vascular dementia around 7 years ago. Apparently she

> had be having " Mini Strokes " that had an accumulative affect. The

> dementia wasn't really a problem at that time, just basically memory

> problems.

> In October of 1999 Mom developed pneumonia. This caused her to

> become confused. It wasn't until she was in the hospital for two

> days that the pneumonia was dx. They just knew by blood work that

> there was an infection present. Thus began the experience of

> medications and the effects. Within 4 hours Mom had become

> disoriented being in the hospital. They gave her Haldol and Ativan.

> Within 24 hours her hands had curled at the wrist, she wasn't walking

> and couldn't feed herself. Now Mom has always been sensitive to

> medications that could make you drowsy and I thought this was causing

> the effects she was having. They gave her Zyprexia and although it

> was as devastating an effect, once they discontinued it Mom started

> to regain her ability to walk, etc.

> In the fall of 2001 Mom had a Geriatric assessment done. They tact

> on Alzheimers to her dx. Changed her from Aricept to Reminyl. The

> Reminyl caused her problems, confusion ... stopped that and went back

> on the Aricept and it took a good 12 weeks for Mom to return to

> almost her previous level of functioning.

> Every time something sent things out of kilter for Mom, she never

> came back to the level she was previously functioning at.

> February 2002 Mom got a virus. I took her to the ER because I was

> concerned with her becoming dehydrated. She was admitted to the

> hospital for 3 days and then went to a NH for some PT for a week and

> everything went really well. She handled the changes good. Had some

> confusion, but basically things really went well.

> April 2002, decided to try respite. My husband and I hadn't really

> had any time to ourselves in over 2 years. Within 24 hours of going

> to the respite facility Mom became confused, agitated and combative.

> So off to the ER we went and Mom was admitted to the GeroPsych unit.

> From here everything went plummeting downhill. Kept telling everyone

> that Mom was very sensitive to medications. They wanted to know what

> I gave her at home when she was like this. She had never been like

> this at home and the only thing I was giving her was .125 ml of

> Risperdal at night to help her sleep. Our biggest problem at home

> was Mom getting up during the night. The amount of the Risperdal was

> so minute because of the effects it would have on her at regular

> dosing. They started Mom on Risperdal at the hospital 1 mg twice a

> day. Within 3 days Mom had stopped walking became rigid, had cog

> wheeling in her arms. The nurses had thought she had, had a stroke

> and called the family doctor group. I asked to have the psychiatrist

> call me. He stopped the Risperdal. Gave Mom a drug holiday for one

> day and then started her on Zyprexia. Within 3 days of that Mom was

> having the same effects as with the Risperdal. Her head was tilted

> to the left and so rigid you couldn't even straighten it out for

> her. I asked that they not give her the medicine the next day,

> Sunday, because she was supposed to be discharged that Monday and the

> way she was I wouldn't have been able to get her home. So they

> stopped the Zyprexia and changed the med to Depakote. At this point

> I just wanted to get her home and this was the last med I was going

> to let them try.

> Mom came home and was a total assist. Had a PT from visiting

> nurses. I had requested that the social worker at the hospital

> arrange for a visiting nurse, but for want ever reason she didn't.

> The PT arrange for a Psych nurse and home health aid. I had Mom home

> with me for 6 weeks. The family doctor and I discontinued the

> Depakote. It caused Mom to become very anxious and clingy. It was

> very hard having Mom with me those 6 weeks. Her short term memory

> was pretty much shot at that time. If I left the room even though I

> had told her what I was doing, I would no sooner get out of the room

> and she would be looking for me. And she would be up 3 to 4 times

> during the night. I was getting exhausted. Mom had gotten back to

> the point where she was walking, using the bathroom and feeding

> herself. I had thought I would be able to send her back to daycare

> twice a week. We had been doing that prior to her being hospitalized

> in April. That thought occurred on a Monday and come Thursday that

> week she had a change. Then on Sunday she became agitated and

> combative with me. I took her back to the hospital. I just felt

> that at that point it was beyond my skill and we needed professional

> help again. So Mom went back to Geropsych unit and we got things

> stabilized, but I realized I could no longer take care of Mom at home

> anymore.

> Mom was discharged to a NH on a Monday. On Wednesday they sent her

> back to the hospital because the could not handle her. I don't

> understand what the problem was there. Never contacted me that they

> were having trouble, never contacted the Psychiatrist. He was very

> upset that they sent Mom back. He was concerned about the changing

> of environments and the effects it would have on Mom. The nursing

> staff and aids at the hospital couldn't understand what the problem

> was at the NH either. The NH gave me a round around about Mom coming

> back. So began the search for another NH. The hospital basically

> made me feel that I should just take any NH that had an opening and

> would take Mom. I wouldn't do that. I told them I would take Mom

> home first and hire full time care until I could find a facility that

> was acceptable. So I started going to NHs and then checking them out

> on the Medicare site and PA Department of Health site to see what

> their deficiencies are/were.

> Finally placed Mom in a facility the 3rd week of June. I feel good

> about the place. I just feel really bad that I needed to place Mom

> in a facility. She seems to be adjusting nicely. They had listen to

> my suggestions and work with me.

> Had to change the family doctor for Mom. He seems like a very nice

> person and easily contacted. He had Mom seen by the facility

> psychiatrist. The Psychiatrist isn't convinced that Mom has LBD. He

> said she didn't have enough of the Parkinson symptoms. I'm not

> convinced that Mom doesn't have LBD. Base on the tremor she has, the

> severe adverse reactions to the neuroleptics and the other LBD

> symptoms on the lists. But he said we are treating the symptoms and

> not the disease.

> Right now Mom is on Seroquel, Neurontin, Aricept, Plavix and Dysteral

> (PRN) in additon to the Vit E, Calcium.

> Mom can't have Haldol, Ativan, Zyprexia, Risperdal, Depakote or

> Ceftin.

> So that is pretty much our story here.

> Thanks for listening!

> Mariea

>

>

>

>

[Guest guest]

and others, I think it incumbent upon us as caregivers and family

members to find facilities that specialize in the care of dementia patients.

Some homes feel that taking care of the elderly is the same-ol'-same-ol' no

matter what the problem, but I am firmly convinced that it is essential to

the well-being of our LOs who suffer from dementia to place them somewhere

where dementia is understood. Not just a locked ward, although that does

become necessary . . . Cheryl

[Guest guest]

Oh Mariea,

You have been on quite a trip. Sounds much like my own story. My mom has been

taking medications all her life, mostly for high blood pressure: pressure that

was so high the doctors often wondered how she was still alive.

With taking so many medications, heart, thyroid, water pills, it just

complicates the situation. Mom has always been her own physician, diagnosing

which medication is causing her problems and then didn't take them.

A heart bypass done 10 years ago is beginning to fail, and the doctors say the

diseased arteries are causing her angina pains. We began seeing a geriatric

doctor, who tested her memory, gait etc. and did interview my sister and I to

great length. He diagnosed lewy body disease quite a while back. Previous to

this we had seen word retrieval difficulties on a daily

basis.........substituting " thing " for verbs, nouns, whatever couldn't be

remembered.

This doctor tried many different medications that we would weekly set up for

her, but once again, she diagnosed which ones were causing her to

shake......feel nausous etc.

Eventually mom began hearing music that she believed was being piped into her

home by her neighbour. A multitude of calls to 911 and the by-law officer

caused us many meetings with the police. Finally the music disappeared and she

claimed she was getting messages through a " speaker " claiming her neighbour

loved her and wanted to marry her. We thought it was kinda cute until he became

the enemy again, threatening rape, fire, bullets.

I took her to my home. She didn't want to stay and kept leaving to walk

home........Yeh, a lady who got lost 2 doors away. At that point i had to take

her to the emergency. They kept her for 1 and a half months............AND she

had consistent medication. Finally all the vicious rapes, fires and gun

shooting disappeared, yet she still claims she is marrying imaginary " Larry " .

We placed her in a retirement home as she is still able to care for her hygiene,

eat etc herself.

She is still adamant that she is NOT STAYING. That when Larry marries her he

will take care of her.Meanwhile, we have some good visits and

bad..........though she says the food is good and the place is spotless. I

don't know what will happen if she should develop the bad hallucinations again.

Am so sorry that you are having difficulty with placement. What else is person

to do? We depend so much on those who are supposed to be the " professionals " .

I guess the search is up to us to find a place where they can be kept safely and

in good spirits if that is possible. I pray that you will find such a place.

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

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[Guest guest]

In a message dated 7/12/02 9:47:06 PM Central Daylight Time,

ayla21818@... writes:

> I'm not sure if mom realizes the amount of time that we have spent finding a

> clean comfortable home for her, but she still wants to return to her

> house..........they say that the settling time is about 6 weeks, so we

> still have 4 to go!!

Oh dear, but I hope the next 4 weeks go quickly! And that your mom is more

accomodating than my MIL, who is basically a really good and easy soul. I

also doubt that she realizes what goes into finding a good home. When we

placed her last year (with little to no dementia at then 91) I don't think

she realized just how much work my BIL had put in. She went to an ALF,

refused to participate in anything but meals, and within 4 months broke her

hip and refused to participate in PT. Nevermind that she had spent two VERY

successful weeks in PT down here after an unexpected hospitalization while

she visited us. She is now relegated to NH for refusing PT when it was

critical after the hip break, and refuses to socialize with other residents.

She has finally decided to go out on the van for outings, for which we are

very grateful. But WE know she is in an excellent facility and BIL and/or

wife and/or granddaughter is there at least once weekly. It is very

frustrating to do the best we can for those whose mentality is basically

intact. How much more frustrating for those of you who must see to the

well-being of LOs who don't understand what you are doing. WE are lucky!

Cheryl

[Guest guest]

Thanks Cheryl,

What you say is sooooooooo true. My mother spent a month and a half in a locked

psychiatric ward. And believe me, at that time it was thoroughly necessary.

Mom was not taking her meds regularly at home and the hallucinations had

augmented to the extreme that she say people in the hallway with

guns..........shooting at her........She literally moved the furniture (with her

heart disease,,,,,yeh) to block the doors so no one could get her..........She

yelled at as to lie on the floor so we wouldn't get shot..........THey had to

restrain her in bed for the first little while. When the meds were consistent

she gradually lost this fearfulness and what a relief it was for us to see her

getting back her own personality. It was difficult in that ward because there

were so many young people and she was very self conscious about her tremors and

chose to isolate herself at mealtimes so no onw would look at her........

At this time, the staff was excellent and encouraged her to take part in their

social activities. At the end of her stay there, they said that she was their

favourite patient........had a lively personality......and showed her expertise

at cooking..........A great compliment !!

We have visited many retirement homes, and nursing homes and indeed the costs

are high but I find that communication must be a two way street..........mom

would choose to isolate herself in this home so we hope that they will encourage

her to take part in the activities and find someone to take her there as she

gets confused with directions. I think that if we show a concern here, that

they will make that effort................ITs amusing, cause mom loves the food

in this home, as she got so tired of the PASTA they served almost daily in the

hospital..........so we keep reminding her of the great meals.........lol

I'm not sure if mom realizes the amount of time that we have spent finding a

clean comfortable home for her, but she still wants to return to her

house..........they say that the settling time is about 6 weeks, so we still

have 4 to go!!

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

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[Guest guest]

>

> Thanks Cheryl,

>

> What you say is sooooooooo true.

,

I tried posting earliers today, but I never saw it show up. So here

goes again.

Had to place Mom in a NH 3 weeks ago. She seems to be adjusting

well. I think it has a great deal to do with the staff. The first

week she was there I went to see her twice a day. The last two weeks

I have gone once a day and maybe a day or two twice. I'll be going

back to work soon so I won't be able to keep the pace of these

visits. I realized that I have be fortunate to visit the way I

have. I know other's situations don't allow for this.

I hope you start to see your Mom making adjustments soon.

Mariea

[Guest guest]

In a message dated 7/13/02 6:24:08 PM Central Daylight Time,

sanclown@... writes:

> Have to say though, there aren't any staff members yet, that have know of

> LBD ...and dad has been there 2+years. At least they are open to the many

> articles and internet information I have taken in.

Glad they are open to new knowledge. Maybe that means someone is paying

attention? Perhaps you could involve the staff education person. Staff

might listen better to that person than " only family. " But you could provide

.. . . Cheryl

[Guest guest]

In a message dated 7/13/02 6:24:08 PM Central Daylight Time,

sanclown@... writes:

> Have to say though, there aren't any staff members yet, that have know of

> LBD ...and dad has been there 2+years. At least they are open to the many

> articles and internet information I have taken in.

Glad they are open to new knowledge. Maybe that means someone is paying

attention? Perhaps you could involve the staff education person. Staff

might listen better to that person than " only family. " But you could provide

.. . . Cheryl

[Guest guest]

Cheryl

My dad is in the Alzheimer's Unit of the nh. It has proven to be good

and bad. Since the staff is trained in dementia, usually being

Alzheimer's, they aren't always able to cross over into another area of

thinking. However, since they are trained in dementia they are more apt

to deal with the delusions my dad has. Have to say though, there aren't

any staff members yet, that have know of LBD...and dad has been there 2+

years. Atleast they are open to the many articles and internet

information I have taken in. I do agree that it is a wonderful idea to

have our LO's in a dementia related nh as opposed to any type of

nh....not trained in dementia.

Sandie

Des Moines, IA

[Guest guest]

Cheryl

My dad is in the Alzheimer's Unit of the nh. It has proven to be good

and bad. Since the staff is trained in dementia, usually being

Alzheimer's, they aren't always able to cross over into another area of

thinking. However, since they are trained in dementia they are more apt

to deal with the delusions my dad has. Have to say though, there aren't

any staff members yet, that have know of LBD...and dad has been there 2+

years. Atleast they are open to the many articles and internet

information I have taken in. I do agree that it is a wonderful idea to

have our LO's in a dementia related nh as opposed to any type of

nh....not trained in dementia.

Sandie

Des Moines, IA

[Guest guest]

My dad had went through much of the same as your mom did. Although he

went back and forth from the nh to the adult psyhiatric hospital. That

was before we moved him to the nh he is at now. What a night mare and

one I don't care to live out again. My heart goes out to you for going

through the struggles you did with your mom. Keep us posted as to how

your mom transitions. :-)

Sandie

Des Moines, IA

[Guest guest]

My dad had went through much of the same as your mom did. Although he

went back and forth from the nh to the adult psyhiatric hospital. That

was before we moved him to the nh he is at now. What a night mare and

one I don't care to live out again. My heart goes out to you for going

through the struggles you did with your mom. Keep us posted as to how

your mom transitions. :-)

Sandie

Des Moines, IA

[Guest guest]

Cheryl,

I am " somewhere else, " {with another MD} and it hadn't done me much

good yet. I thought since I was with the nh I would use the Psyc at the

home. That has been useless also. I tried to get her out of this home

on 2 different occasions. That didn't work either. I don't know why in

a city the size of Meto Detroit I can't find anyone. I even went to a

Neurologist at this late date. He was the one to put her in the

hospital and he told me he understood LBD, HA!!!

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com