Re: my mom

January 31, 2006

Hi Deb (I guess that is your name)

My mom is pretty much headed to the same place yours

is. She was taken off the Aricept recently and is

settling into her own place too. She is very stiff and

I do still try to get her to walk a little every day.

I feel like I want it to be over for her, but I know I

will deeply miss every moment with her, even though

they are very hard. Her mind is almost gone, probably

90% of the time now. Day by day a little more is gone.

But I feel like it is the lessor of two evils. Better

to not know what all is going on than to know and to

feel trapped in a body and mind that won't work right.

To answer your question. It could be days It could be

weeks It could be years. No one knows, but God. It's

tough to do but try to just do one day at a time. I

know easier said than done, but try not to look too

far down the road and just do today. It will make

everyone happier. Just my two cents worth. Take care

and I will be praying for you.

Dena

--- Deb Korcal wrote:

> 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

>

> [Non-text portions of this message have been

> removed]

>

__________________________________________________

February 2, 2006

Hi Stevie,

I won't put Jim in a Nh when I go on respite, only Assisted Living.

By law a Nh can administer drugs when they see fit, they have

doctors on staff, but not in Assisted Living, it is against the law

for Assisted Living to administer anything other than the routine

medications. That is why I asked if your Uncle was in a Nh, it is

different than Assisted Living.

Jim's kids want Jim in MediCal, so eventually he is going to end

up in a Nh, unless I win this battle. If it were up to me, I wouldn't

put Jim in a Nh until his final days.

I am sorry you have to go through this with your Uncle. Hugs, Jan

> >

> > 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

>

February 4, 2006

Dear Jan,

How wonderful of you to take the time to email all of this information! I

appreciate it so much! This information would have been great before he went

into that NH because we had just discovered that massaging his feet and legs

gave him such comfort. Now, when we try to rub his arms and legs he grimaces in

pain. He is so different. Today was bath care day and he couldn't even stand

up. He was having an awful time at the breakfast table too so we had to put

him in his chair, leaving his meal behind, where he fell asleep and was there

all day. He looked liked he was getting jolting " shocks " and the nurse said

he was probably having TIA's. It is 9:30 at night and we are waiting for a

hospital bed to be delivered so he will be more comfortable. I'm afraid this

will be where he will stay unless he does another one of his famous

" turnabouts. "

A big turnabout it will have to be.

Thank you so much again Jan. I wish you the best with your Husband. Peace,

Stevie

* * * * * * *

Stevie,

Jim was not able to walk and was very lethargic when I

brought him home after he was given Haldol in the

hospital. I literally pulled him up out of the car and

swung his arms over my shoulders and dragged him into

the house on my back and threw him down on the bed off

my back. How was I supposed to get him in the house,

he couldn't walk? Honestly, I don't know where I get

my strength sometimes. It's the adrenaline rush. Even

the doctors are surprised that I take care of Jim on

my own.

Has your Uncle contracted where his knees can not be

bent or they are bent in a fetal position and can not

be moved?

Jim could not walk for a few weeks, but he was not

contracted. I did leg exercises with him on the bed

everyday. A physical therapist gave me the exercises

to do with him. After a few weeks I could get him up

to a stand and then a few steps at a time and then he

was back to walking. I don't know if this will work

for your Uncle or not, but it's worth mentioning to

you.

Here are the leg exercises: Do 2X a day - 5-10 times

each

1. While laying on his back; bend his knees and push

them up gently to his chest, he doesn't have to touch

his chest, but as close as you can get. You help him

with this, he won't be able to do it on his own at

first.

2. Have legs flat on bed and slide one leg out to the

side; count 5 then back and then the other leg. You

slide his legs for him, until he can do some on his

own hopefully.

3. With Feet flat on bed; rock knees from side to

side. His knees will be up and you hold them and rock

them to as far down as they will go to touch the bed

on each side.

4. With one leg straight and one leg bent; lift the

straight leg up

5. While laying on back; raise arms above head. You do

it at first; until hopefully your Uncle can do these

exercises on his own. He may only be able to do a few

times to begin with and you can continue to help him

finish each repetition.

Jim was back to walking after a couple of weeks, but

the longer you wait to do the exercises the harder it

is to get them back to walking.

You may want to ask your doctor about doing the

exercises first.

If he can bend his knees there is hope.

I am praying for your Uncle.......Hugs, Jan

February 4, 2006

Dear Jan,

My Uncle went into the nursing facility weighing 172 pounds and came home

weighing 160. He was hallucinating terribly, dehydrated, and could no longer

walk. The nurse had just seen him here at home the day that he went in and the

only thing he had wrong was two little bed sores that could have used some

attention before they got worse.

That was the 17th of January and my birthday was the following day so we

decided to take a much needed " respite " for the 5 following days. I told my Unc

that I was finally going to buy that convertible (...the one that I had been

talking about for the past several years!) for my birthday and we would take a

long ride up the coast when he got back from the nursing facility. He used to

have a '39 Packard convertible in his prime and always wished he still had it

to " take a drive up the coast. " Well, it's not a Packard but the top comes

down and it sits in the garage, waiting for my Uncle to come out and take a

spin. I'm praying that he gets a burst of energy and we can take that ride.

Meanwhile, if there is anything to be done about the NH Ed will do it. This

sort of " deaf ear syndrome " must stop in these nursing homes and their

employees need to be educated and open to experiences and knowledge that

caregivers

offer. Turning their back because they are too busy and medicating patients to

make things easier for them should not be an option. Hopefully some good

will come of this too.

Thank you again for your concern and I thank you most kindly for being here!

Peace and many hugs to us all, Stevie

P.S....I took that picture in color and turned it to black and white because

I wanted to show the vacancy that now resides in his eyes. So different from

the few other pictures that I posted on the site.

* * * * * * *

Dear Stevie,

A picture is worth a thousand words. It is shocking to see and

very disturbing. Makes me think before any facility visits to have

my husband tested by his doctor for dehydration and have it

recorded, also his walking ability. Pictures and Videos taken too.

It seems that some Nursing Homes are Chambers of Horror

and not nurturing and caring. It seems to become what is more

comforting for the staff and not the patient. Anything is done to

keep the patient quiet and out of the way. I truly am sorry to see

what has happened to your Uncle. What is that patch of

discoloration on the side of your Uncle's face in the black and

white picture? I did not notice it in the picture with your son.

I pray Ed can get some answers and you get some results from

this. They should not be able to get away with this kind of

treatment. Huge Hugs, Jan

April 10, 2006

Hi to everyone and thank you for writing detailed journals of those

you hold so close to your heart.

My Mom diagnosed August 2005 after receiving treatment for depression;

shock treatments and anti-depressants for 8 months.

Currently trying so hard to hold on to her memory. She talks but has

a hard time completing and hanging on to sentences. Her facial

features change daily as her movements stiffen. She knows she is

sick but my Dad tells her she will get better...

Two questions:

Is there anything I can suggest for her pain? She cries daily and

tells me she is in a lot of pain. She says it is physical pain as it

becomes harder for her to straighten her arms and move around.

She knows she is hallucinating; she sees animals coming towards her

and then they move out of sight but she is not frightened.

Do the halluciantions go away?

My Mom is my best friend and the kindest person I know, I am so sad to

be losing her...this is the worst nightmare. She is 71.

Marcie

April 10, 2006

BLESS HER HEART. IT JUST BREAKS OUR HEARTS TO KKNOW WHAT OUR LO'S ARE GOING

THROUGH. MY MOM IS/WAS MY BEST FRIEND AND I MISS HER SO MUCH. I SUPPOSE I'M

GLAD SHE WAS NOT ABLE TO TELL ME OFTHE HALLUCINATIONS. IT SCARS ME TO KNOW. I

HAVE NO IDEA ANYMORE WHAT MY MOM THINKS ABOUT ANYTHING AND I CAN'T TAKE IT SO I

STAY VERY BUSY TO NOT THINK. I JUST DO AND GET THROUGH THE DAY. PRAYING FOR U

MIDGE

marcie9870 wrote: Hi to everyone and thank you

for writing detailed journals of those

you hold so close to your heart.

My Mom diagnosed August 2005 after receiving treatment for depression;

shock treatments and anti-depressants for 8 months.

Currently trying so hard to hold on to her memory. She talks but has

a hard time completing and hanging on to sentences. Her facial

features change daily as her movements stiffen. She knows she is

sick but my Dad tells her she will get better...

Two questions:

Is there anything I can suggest for her pain? She cries daily and

tells me she is in a lot of pain. She says it is physical pain as it

becomes harder for her to straighten her arms and move around.

She knows she is hallucinating; she sees animals coming towards her

and then they move out of sight but she is not frightened.

Do the halluciantions go away?

My Mom is my best friend and the kindest person I know, I am so sad to

be losing her...this is the worst nightmare. She is 71.

Marcie

Welcome to LBDcaregivers.

April 10, 2006

Hi Marcie - Welcome to the board. What medications is your mother

currently on? I don't know of 'physical pain' that occurs with those

with LBD - I would be concerned about that. Maybe some medication is

doing this (??)...

Thanks for the reminder about the 'detailed journals' - I think it is

a good reminder that we all should put 'our story' into those files

(I'v become smart enough to 'save' mom's story so can easily

copy/paste into the files section)...

Regarding the hallucinations - I think just about all of us agree if

the hallucinations don't bother the LO than don't worry so much about

it. It's when they become scary that we feel we need to help our LO

(w/ Seroquil - at it's lowest dose) It sounds like your mom isn't

frightened so I'd just go along with it. (same with my mom - she sees

children, my deceased father, and animals - but she's not frightened

so I don't worry too much about them...

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy)

>

> Hi to everyone and thank you for writing detailed journals of those

> you hold so close to your heart.

>

> My Mom diagnosed August 2005 after receiving treatment for

depression;

> shock treatments and anti-depressants for 8 months.

>

> Currently trying so hard to hold on to her memory. She talks but

has

> a hard time completing and hanging on to sentences. Her facial

> features change daily as her movements stiffen. She knows she is

> sick but my Dad tells her she will get better...

>

> Two questions:

>

> Is there anything I can suggest for her pain? She cries daily and

> tells me she is in a lot of pain. She says it is physical pain as

it

> becomes harder for her to straighten her arms and move around.

>

> She knows she is hallucinating; she sees animals coming towards her

> and then they move out of sight but she is not frightened.

> Do the halluciantions go away?

>

> My Mom is my best friend and the kindest person I know, I am so sad

to

> be losing her...this is the worst nightmare. She is 71.

>

> Marcie

>

April 10, 2006

Hi Marcie-

I am sad that you have the need to be with our group, but at the same time

welcome you and want to assure you that you are among friends and first hand

experts on LBD.

My Dad had lots of pain. We never quite conquered it, but we were able to

lessened it with Extra strength Tylenol. Also Dad took Tramadol. Most of his

pain was in his knees and back. I applied Lidocaine ointment to his knees and

back prior to getting him up. That seem to help a lot..

My Dad's hallucinations seem to deminish as he got sicker. Maybe it was because

there was less stimulation. He could no longer sit outside and he lost his

interest in TV.

I really understand the nightmare you are going through. I went through it too.

My Dad died peacefully on 9/11/05. He was also the kindest and most gentle man

I know. Fortunately, his disposition never changed.

Sincerely,

Gerry

Wilmington, De.

Caregiver, along with my 87 yr. old Mother, of Dick Deverell, age 88, who

passed at home on 9/11/05 after a 4 yr. battle with LBD

re: my Mom

Hi to everyone and thank you for writing detailed journals of those

you hold so close to your heart.

My Mom diagnosed August 2005 after receiving treatment for depression;

shock treatments and anti-depressants for 8 months.

Currently trying so hard to hold on to her memory. She talks but has

a hard time completing and hanging on to sentences. Her facial

features change daily as her movements stiffen. She knows she is

sick but my Dad tells her she will get better...

Two questions:

Is there anything I can suggest for her pain? She cries daily and

tells me she is in a lot of pain. She says it is physical pain as it

becomes harder for her to straighten her arms and move around.

She knows she is hallucinating; she sees animals coming towards her

and then they move out of sight but she is not frightened.

Do the halluciantions go away?

My Mom is my best friend and the kindest person I know, I am so sad to

be losing her...this is the worst nightmare. She is 71.

Marcie

Welcome to LBDcaregivers.

April 10, 2006

Marcie, I have just gotten on line, so I don't know what type of answers you

have received, but I understand, and want you to know it.

My Don, will be 72 next month. He has the same type of hallucinations, and

the stiffness. It sounds like Lewey Body Disease and Parkinson's mixed.

Medicines can make the situation better, but My husband's hallucinations have

not

gone away. A doctor can help with the pain, too. Be sure she is in the hands

of a GOOD Neurologist that understand Alzheimer's, Lewey Body, and Parkinson's

diseases.

My best wishes to you and your Mom. I am so sorry.

Imogene

In a message dated 4/10/2006 9:24:11 AM Central Daylight Time,

willenbrinbrink@... writes:

Hi to everyone and thank you for writing detailed journals of those

you hold so close to your heart.

My Mom diagnosed August 2005 after receiving treatment for depression;

shock treatments and anti-depressants for 8 months.

Currently trying so hard to hold on to her memory. She talks but has

a hard time completing and hanging on to sentences. Her facial

features change daily as her movements stiffen. She knows she is

sick but my Dad tells her she will get better...

Two questions:

Is there anything I can suggest for her pain? She cries daily and

tells me she is in a lot of pain. She says it is physical pain as it

becomes harder for her to straighten her arms and move around.

She knows she is hallucinating; she sees animals coming towards her

and then they move out of sight but she is not frightened.

Do the halluciantions go away?

My Mom is my best friend and the kindest person I know, I am so sad to

be losing her...this is the worst nightmare. She is 71.

Marcie

April 10, 2006

---

Imogene:

Again, I can't express how much I truly appreciate all of the

support here. You must go through so many emotions in a days time.

Just being with my Mom brings me home upset and angry at her

situation. I am upset that she has to suffer; she doesn't deserve

this. My Dad makes her decisions based on the doctors but also

started listening to me following her depression treatments. Thank

you for your advise regarding her doctors. I don't really know if

there are any great doctors in St. Louis, Missouri that understand

Lewy Body Disease. My Dad thinks she has the best team of doctors

and I think they are caring but lack experience.

Again, thanks,

Marcie

In LBDcaregivers , Iward27663@... wrote:

>

> Marcie, I have just gotten on line, so I don't know what type of

answers you

> have received, but I understand, and want you to know it.

>

> My Don, will be 72 next month. He has the same type of

hallucinations, and

> the stiffness. It sounds like Lewey Body Disease and Parkinson's

mixed.

> Medicines can make the situation better, but My husband's

hallucinations have not

> gone away. A doctor can help with the pain, too. Be sure she is

in the hands

> of a GOOD Neurologist that understand Alzheimer's, Lewey Body,

and Parkinson's

> diseases.

>

> My best wishes to you and your Mom. I am so sorry.

> Imogene

>

> In a message dated 4/10/2006 9:24:11 AM Central Daylight Time,

> willenbrinbrink@... writes:

>

> Hi to everyone and thank you for writing detailed journals of

those

> you hold so close to your heart.

>

> My Mom diagnosed August 2005 after receiving treatment for

depression;

> shock treatments and anti-depressants for 8 months.

>

> Currently trying so hard to hold on to her memory. She talks but

has

> a hard time completing and hanging on to sentences. Her facial

> features change daily as her movements stiffen. She knows she is

> sick but my Dad tells her she will get better...

>

> Two questions:

>

> Is there anything I can suggest for her pain? She cries daily

and

> tells me she is in a lot of pain. She says it is physical pain

as it

> becomes harder for her to straighten her arms and move around.

>

> She knows she is hallucinating; she sees animals coming towards

her

> and then they move out of sight but she is not frightened.

> Do the halluciantions go away?

>

> My Mom is my best friend and the kindest person I know, I am so

sad to

> be losing her...this is the worst nightmare. She is 71.

>

> Marcie

>

April 11, 2006

Marcie, Someone said we have to teach the doctors. I do believe that.

I try to stay on an even keel as much as possible. My husband's angina has

slowed back down, so he is doing better that way, but he got up so slow, and

drags so slow.

He didn't have any hallucination in a couple of days either.

Imogene

In a message dated 4/11/2006 1:49:54 AM Central Daylight Time,