thanks to all

July 19, 2000

In a message dated 7/19/00 10:19:35 PM Central Daylight Time,

Agaw12577@... writes:

<< I want to thank everyone for their kind words and constant encouragement!

It

means so much to me. I owe a great deal of my " success " to all of you for

the

support and motivation you provide me with. I love the fact that every time

I

sign on, I have dozens of motivating messages in my mailbox. Everyday, as I

read the messages, I get excited about Tae-Bo all over again. Each and every

one of you inspire me. Thank you all! >>

I think it's safe to say that you are amongst the most motivating people on

this list. Your success story is completely amazing and encouraging. Just

as this list helps you, you help each one of us who are a part of this group.

Here I go speaking for everyone again! LOL I don't think anyone would

disagree with me. By the way, your pictures look GREAT! What a difference

2 years can make... and no, I personally don't think that two years is a very

long time to make such drastic and permanent changes. Congratulations on

your continued success.... you are a true conqueror.

Jenni

September 26, 2002

,

My MIL was on Zyprexa and it was horrible for her. She not only gained

about 10 pounds in less then a month, but the hallucinations were never more

real to her. It was horrible. We gave it 30 days and finally had to stop.

Risperidal with Seroquel is the only thing that has worked for us. That

with Paxil and Aricept.

Does your Mom have CHF (congestive heart failure)? This can cause

peripheral edema in the legs. Sounds like you were on top of the edema

(swelling) before. The Jobst stockings (sometimes Juzo or Sigvarus) are

VERY effective as well as the pumps. I have put many of my patients in

Jobst stockings and I wear them myself for good venous sufficiency and being

on my feet all day (I wear the 20/30mmhg). They may want to consider a

diuretic (like Lasix) if she is going to go back to Zyprexa.

Don't feel guilty for having to put her in a nursing home or assisted

living. They do adjust, but it does take time. I have always said doing

the right thing is often difficult. Ensuring her safety and well being is

most important.

Good luck with things.

Take care,

thanks to all

Thank you for your posts Barbara, Sandie, and Shirley -- I am SO

glad this list exists and that I found it right away. As I said, not

completely convinced we are dealing with LBD - but her

symptoms sure match up, and it is a relief to find others who

recognize all those drug names right away, and know what the

issues here are - definitely more than just a small illness that

you just take care of and move away from - we have been

dealing with this in some way for decades, and now are entering

new territory that may be LBD manifesting itself.

I put a call into the attending psychiatrist yesterday (hers was out

of town when she was admitted, though I have talked to him

now). So, hope to talk to him today and get more specific info -

since they may have put her back on Zyprexa -- when on it before

she gained 50 pounds, even at low dose and we ended up with

severe edema and weeping on her legs. Thankfully weight has

come off, and her legs look great - a huge victory over the last 6

months. I spent mid December to mid January there working on

that one, with home health nurses coming in, working an

automated pumping system, etc. Glad we are now just back to

the prescription socks.

It sounds like they will discharge her soon, and put her over into

the extended care part of the hospital (has to be paid out of

pocket unfortunately), until we can find right asst. living situation.

Plus the psych meds need to get regulated - the last two days I

have called her and found her sobbing because of things she

thought she was hearing in the hallway that scared her. The

psychiatric beds are unfortunately all full right now, so she can't

be transferred up, but then she really does not want to go to that

floor to begin with.

So -- feeling guilty that I can't be there and have her live with me -

but also at peace with it by this point, I think -- I don't know how I

would take care of her, run house, hold down full time job, etc. -

when right now I don't even have the resources to pay for a home

(living on grad student budget). Plus she needs more interaction

than just I can give here - though I suppose we could hire

someone again to come in during the day. I am going to try to fly

out next Weds. to spend one week helping -- need to get that

ticket booked today.

But the place we are looking at sounded perfect because of all

the social interaction she would get - they do day trips out, have

been adopted by a Brownie troop that comes in, and bro. said

the rooms were spacious and it was a very nice home. Plus

since family friend is in there, his wife visits regularly and she

and Mom know each other. Hope it works out soon! Expensive

though - will run about 66 K a year - but then rates in AK are

atronomical acc. to the lawyer we have been meeting with - says

she always councils clients to move away if possible - but at this

point Mom is much better staying in a place she knows with

familiar faces and history with docs.

Okay will keep you posted....

September 26, 2002

Thanks - I want to avoid Zyprexa too if possible..am going to

touch base with dr today to make sure she isn't on it again. Her

heart is good - but we have to do check ups since she will be on

Geodon again, she has low blood pressure so can't use diuretics --

will ask about seroquel though - we haven't tried that one yet, so

will ask about it - think she is back on Risperidal...

> Risperidal with Seroquel is the only thing that has worked for us.

That

> with Paxil and Aricept.

>

> thanks to all

>

> Thank you for your posts Barbara, Sandie, and Shirley -- I am SO

> glad this list exists and that I found it right away. As I said,

not

> completely convinced we are dealing with LBD - but her

> symptoms sure match up, and it is a relief to find others who

> recognize all those drug names right away, and know what the

> issues here are - definitely more than just a small illness that

> you just take care of and move away from - we have been

> dealing with this in some way for decades, and now are entering

> new territory that may be LBD manifesting itself.

>

> I put a call into the attending psychiatrist yesterday (hers was

out

> of town when she was admitted, though I have talked to him

> now). So, hope to talk to him today and get more specific info -

> since they may have put her back on Zyprexa -- when on it before

> she gained 50 pounds, even at low dose and we ended up with

> severe edema and weeping on her legs. Thankfully weight has

> come off, and her legs look great - a huge victory over the last 6

> months. I spent mid December to mid January there working on

> that one, with home health nurses coming in, working an

> automated pumping system, etc. Glad we are now just back to

> the prescription socks.

>

> It sounds like they will discharge her soon, and put her over into

> the extended care part of the hospital (has to be paid out of

> pocket unfortunately), until we can find right asst. living

situation.

> Plus the psych meds need to get regulated - the last two days I

> have called her and found her sobbing because of things she

> thought she was hearing in the hallway that scared her. The

> psychiatric beds are unfortunately all full right now, so she can't

> be transferred up, but then she really does not want to go to that

> floor to begin with.

>

> So -- feeling guilty that I can't be there and have her live with

me -

> but also at peace with it by this point, I think -- I don't know

how I

> would take care of her, run house, hold down full time job, etc. -

> when right now I don't even have the resources to pay for a home

> (living on grad student budget). Plus she needs more interaction

> than just I can give here - though I suppose we could hire

> someone again to come in during the day. I am going to try to fly

> out next Weds. to spend one week helping -- need to get that

> ticket booked today.

>

> But the place we are looking at sounded perfect because of all

> the social interaction she would get - they do day trips out, have

> been adopted by a Brownie troop that comes in, and bro. said

> the rooms were spacious and it was a very nice home. Plus

> since family friend is in there, his wife visits regularly and she

> and Mom know each other. Hope it works out soon! Expensive

> though - will run about 66 K a year - but then rates in AK are

> atronomical acc. to the lawyer we have been meeting with - says

> she always councils clients to move away if possible - but at this

> point Mom is much better staying in a place she knows with

> familiar faces and history with docs.

>

> Okay will keep you posted....

>

September 26, 2002

Good luck. Keep us posted! It is always beneficial to hear what works and

what doesn't for people!

Good luck and take care!

thanks to all

>

> Thank you for your posts Barbara, Sandie, and Shirley -- I am SO

> glad this list exists and that I found it right away. As I said,

not

> completely convinced we are dealing with LBD - but her

> symptoms sure match up, and it is a relief to find others who

> recognize all those drug names right away, and know what the

> issues here are - definitely more than just a small illness that

> you just take care of and move away from - we have been

> dealing with this in some way for decades, and now are entering

> new territory that may be LBD manifesting itself.

>

> I put a call into the attending psychiatrist yesterday (hers was

out

> of town when she was admitted, though I have talked to him

> now). So, hope to talk to him today and get more specific info -

> since they may have put her back on Zyprexa -- when on it before

> she gained 50 pounds, even at low dose and we ended up with

> severe edema and weeping on her legs. Thankfully weight has

> come off, and her legs look great - a huge victory over the last 6

> months. I spent mid December to mid January there working on

> that one, with home health nurses coming in, working an

> automated pumping system, etc. Glad we are now just back to

> the prescription socks.

>

> It sounds like they will discharge her soon, and put her over into

> the extended care part of the hospital (has to be paid out of

> pocket unfortunately), until we can find right asst. living

situation.

> Plus the psych meds need to get regulated - the last two days I

> have called her and found her sobbing because of things she

> thought she was hearing in the hallway that scared her. The

> psychiatric beds are unfortunately all full right now, so she can't

> be transferred up, but then she really does not want to go to that

> floor to begin with.

>

> So -- feeling guilty that I can't be there and have her live with

me -

> but also at peace with it by this point, I think -- I don't know

how I

> would take care of her, run house, hold down full time job, etc. -

> when right now I don't even have the resources to pay for a home

> (living on grad student budget). Plus she needs more interaction

> than just I can give here - though I suppose we could hire

> someone again to come in during the day. I am going to try to fly

> out next Weds. to spend one week helping -- need to get that

> ticket booked today.

>

> But the place we are looking at sounded perfect because of all

> the social interaction she would get - they do day trips out, have

> been adopted by a Brownie troop that comes in, and bro. said

> the rooms were spacious and it was a very nice home. Plus

> since family friend is in there, his wife visits regularly and she

> and Mom know each other. Hope it works out soon! Expensive

> though - will run about 66 K a year - but then rates in AK are

> atronomical acc. to the lawyer we have been meeting with - says

> she always councils clients to move away if possible - but at this

> point Mom is much better staying in a place she knows with

> familiar faces and history with docs.

>

> Okay will keep you posted....

>

September 26, 2002

>Expensive though - will run about 66 K a year - but then rates in AK

>are atronomical acc. to the lawyer we have been meeting with - says

>she always councils clients to move away if possible - but at this

>point Mom is much better staying in a place she knows with

>familiar faces and history with docs.

, The cost for nh care in Alaska is figured at 10 K a year

so the home is right in the ball park. I don't know why the lawyer

would council moving away if you are looking into medicade..as I said

Alaska has a very generous medicade program. The home that you are

looking at would have to be medicade approved.

Your poor mom to be in a strange place and scared. I hope the staff

is good at helping her through these periods. I have told this story

here before but will repeat it. My husband was in the small hospital

here after the reaction to Risperdal. One of his hallucinations is

snakes. He was doing so well that the nursing staff unhooked the

Teds unit and while they were in staff meeting for shift change Bill

saw a snake and decided to get out of Dodge...he walked down the hall

and ran into a friend that is a CNA there. She is such a sweet heart,

she got him to sit down and got him some coffee and when he calmed

down walked with him back to his room. As she went to open the door

he held his cane up like a club and told her " you open the door and

I'll wack em " . She was able to keep from laughing and after they went

into the room she checked everything out with him and he was

convinced that the snake was no longer there and she was able to

leave and phoned me. We all laugh about it now including Bill. Hang

in there you are doing a good job and it will all fall in place. Barb.

September 26, 2002

Sounds like all is working out...for now. So glad to hear it. Please

let me know if I can help with experience, meds., or a shoulder.

Will continue to keep you in my prayers.

A friend just recently told me I probably never get to sleep with all my

prayers. Haven't noticed a difference, think God has allowed me an

extra hour at night.

Hugs to ya!!

Sandie

September 27, 2002

Barb

My dad also had hallucinations of snakes. He HATED them to say the

least. He called me from his apartment one day (sheesh, 5 yrs ago) and

told me he had a " mother snake " in his apartment. I told him not to

move and I would be there in a minute. What should have taken me 7-8

minutes for the drive, took me about 3. I then had a similar situation

as the CNA you mentioned. The description dad was giving sounded like

the snake was the size of an Anaconda. With his help, telling me

exactly where it was, I helped " mama snake " out, locked everything up

and dad was assured " she " would not be able to get back in. Whew!

Just reflecting on memories here...

Sandie

September 27, 2002

Thanks Barb and Sandie for sharing on the hallucinations you've

seen others experience - ours last week (just prior to hospital

stay) was a cartoon-looking couple who walked down the

hallway to the bedroom talking about which pieces of antique

furniture they wanted to take from Mom's house - she said she

told them they weren't invited and sent them back out to the living

room, and then they finally left. She realized it couldn't be real

when she went out and saw the chain was still on the door. Of

course, hate that someone is experiencing that, but this one

made me smile that day! Amazed at all the brain can do - truly

astounding! And if you can't laugh and embrace this whole thing

a bit it will overwhelm you.

Now we are at just auditory ones, and those are not so fun - all

the noise in the hospital hallway is upsetting her because she is

hearing people she knows out there talking about all kinds of

things. But one of the nurses has been great - spending lots of

time with her, praying with her, comforting her - I am going to find

that woman next week and give her a huge hug.

Hope you all have a good morning --

September 27, 2002

>My dad also had hallucinations of snakes. He HATED them to say the

>least.

Sandie what is real strange is that Bill is not afraid of snakes (or

didn't use to be) and we don't have snakes in Alaska (another plus

for living here). I blame the Animal Planet channel for this, haha.

Now is the time for memories and may they all be good. Love and hugs,

Barb

September 27, 2002

>My dad also had hallucinations of snakes. He HATED them to say the

>least.

Sandie what is real strange is that Bill is not afraid of snakes (or

didn't use to be) and we don't have snakes in Alaska (another plus

for living here). I blame the Animal Planet channel for this, haha.

Now is the time for memories and may they all be good. Love and hugs,

Barb

September 27, 2002

>My dad also had hallucinations of snakes. He HATED them to say the

>least.

Sandie what is real strange is that Bill is not afraid of snakes (or

didn't use to be) and we don't have snakes in Alaska (another plus

for living here). I blame the Animal Planet channel for this, haha.

Now is the time for memories and may they all be good. Love and hugs,

Barb

September 27, 2002

>Amazed at all the brain can do - truly astounding! And if you can't

>laugh and embrace this whole thing a bit it will overwhelm you.

>But one of the nurses has been great - spending lots of time with

>her, praying with her, comforting her - I am going to find

>that woman next week and give her a huge hug.

I am glad you can laugh it is a great stress breaker. Glad

that your mother was able to realize that she was seeing things when

she saw the lock on the door.

I have said this before and I will say it again if you have a nurse,

PCA, or anybody else in the nursing home that shows they really care

please make sure you let them know how much they are appreciated.

Barb

September 27, 2002

>Amazed at all the brain can do - truly astounding! And if you can't

>laugh and embrace this whole thing a bit it will overwhelm you.

>But one of the nurses has been great - spending lots of time with

>her, praying with her, comforting her - I am going to find

>that woman next week and give her a huge hug.

I am glad you can laugh it is a great stress breaker. Glad

that your mother was able to realize that she was seeing things when

she saw the lock on the door.

I have said this before and I will say it again if you have a nurse,

PCA, or anybody else in the nursing home that shows they really care

please make sure you let them know how much they are appreciated.

Barb

September 27, 2002

>Amazed at all the brain can do - truly astounding! And if you can't

>laugh and embrace this whole thing a bit it will overwhelm you.

>But one of the nurses has been great - spending lots of time with

>her, praying with her, comforting her - I am going to find

>that woman next week and give her a huge hug.

I am glad you can laugh it is a great stress breaker. Glad

that your mother was able to realize that she was seeing things when

she saw the lock on the door.

I have said this before and I will say it again if you have a nurse,

PCA, or anybody else in the nursing home that shows they really care

please make sure you let them know how much they are appreciated.

Barb

September 27, 2002

-

Sounds like you have turned a negative situation (auditory

hallucinations) into a positive one. The nurse you mentioned may be one

of those friendships I talked about in one of my previous posts. I

found people came to visitation and the funeral, plus called my house,

that I had almost forgotten about yet knew they had made a huge impact

on my dad and my life at the time they were in it. Also, I am so glad

you will take the time to thank the nurse. It is wonderful when medical

staff, or anyone for that matter, goes above and beyond the duties of

their job.

Sandie

September 27, 2002

-

Sounds like you have turned a negative situation (auditory

hallucinations) into a positive one. The nurse you mentioned may be one

of those friendships I talked about in one of my previous posts. I

found people came to visitation and the funeral, plus called my house,

that I had almost forgotten about yet knew they had made a huge impact

on my dad and my life at the time they were in it. Also, I am so glad

you will take the time to thank the nurse. It is wonderful when medical

staff, or anyone for that matter, goes above and beyond the duties of

their job.

Sandie

September 27, 2002

-

Sounds like you have turned a negative situation (auditory

hallucinations) into a positive one. The nurse you mentioned may be one

of those friendships I talked about in one of my previous posts. I

found people came to visitation and the funeral, plus called my house,

that I had almost forgotten about yet knew they had made a huge impact

on my dad and my life at the time they were in it. Also, I am so glad

you will take the time to thank the nurse. It is wonderful when medical

staff, or anyone for that matter, goes above and beyond the duties of

their job.

Sandie

September 27, 2002

Barb

My dad was always terrified of snakes, something we have a wealth of in

Iowa.

Thank you for sharing your story...and if my dad were alive today, we

would probably move to Alaska. Bless your heart for pointing out the

idea that now is the time for memories. Have had a few good ones

lately, and a few sad ones. I know it just all takes time.

Thank you for your love and hugs. Both are needed today.

Sending hugs right back at ya!! (((((Barb)))))

.....you have been hugged.

Sandie

September 30, 2002

>

> I have said this before and I will say it again if you have a

nurse, PCA, or anybody else in the nursing home that shows they

really care please make sure you let them know how much they are

appreciated.

> Barb

I got an e-mail today that I wanted to share with you all but wasn't

sure where it fit in. It goes along the same lines though of having

a good care provider. With so many of your lo's in nh this may be

something nice to print out and hang on their walls so the nh people

will see it and perhaps make their job easier as well as how they

react when your lo's are not having a good day and acting " not

themselves " wendy

An Old Lady's Poem

What do you see, nurses, what do you see?

What are you thinking when you're looking at me?

A crabby old woman, not very wise,

Uncertain of habit, with faraway eyes?

Who dribbles her food and makes no reply

When you say in a loud voice, " I do wish you'd try! "

Who seems not to notice the things that you do,

And forever is losing a stocking or shoe.....

Who, resisting or not, lets you do as you will,

With bathing and feeding, the long day to fill....

Is that what you're thinking? Is that what you see?

Then open your eyes, nurse; you're not looking at me.

I'll tell you who I am as I sit here so still,

As I do at your bidding, as I eat at your will.

I'm a small child of ten ...with a father and mother,

Brothers and sisters, who love one another.

A young girl of sixteen, with wings on her feet,

Dreaming that soon now a lover she'll meet.

A bride soon at twenty -- my heart gives a leap,

Remembering the vows that I promised to keep.

At twenty-five now, I have young of my own,

Who need me to guide and a secure happy home.

A woman of thirty, my young now grown fast,

Bound to each other with ties that should last.

At forty, my young sons have grown and are gone,

But my man's beside me to see I don't mourn.

At fifty once more, babies play round my knee,

Again we know children, my loved one and me.

Dark days are upon me, my husband is dead;

I look at the future, I shudder with dread.

For my young are all rearing young of their own,

And I think of the years and the love that I've known.

I'm now an old woman ...and nature is cruel;

'Tis jest to make old age look like a fool.

The body, it crumbles, grace and vigor depart,

There is now a stone where I once had a heart.

But inside this old carcass a young girl still dwells,

And now and again my battered heart swells.

I remember the joys, I remember the pain,

And I'm loving and living life over again.

I think of the years ....all too few, gone too fast,

And accept the stark fact that nothing can last.

So open your eyes, nurses, open and see,

...Not a crabby old woman; look closer ...see ME!!

October 1, 2002

The poem you sent was wonderful to say the least. Reminds me of the

former nh my dad was in. For the whole nh, there were 4 staff members I

thanks for taking care of, and caring about my dad. I was always

telling stories and reminding the others that the man they are taking

care of " wasn't my dad " but the shell of the man I grew up with. Yet he

was still inside there, not the " agitated " person they seemed to deal

with. What a profound writing!! I will definately print it off...

On a positive note, the nh dad was at for 4 days was completely

opposite. The staff was warm and caring. It was small and personal.

There were recliners and a T.V. that seemed like a living room, home

setting. The staff gave the residents respect and dignity. There are

good nh's out there, just took us a while to find one.

So glad dads last few days, and the days prior at the hospital, were

filled with respect, dignity and the chance for him to make a choice.

Sandie

October 1, 2002