Re: Shirley, i'm comin over there!!!!!!!!

[Guest guest]

In a message dated 2/9/2003 12:57:35 PM Pacific Standard Time,

daniel.campbell1@... writes:

> We've had what has to be one of the worst weeks with him, I don't know how

> he's coping with all this as he seems to be,for some strange reason, really

> lucid

, I don't know why but your remarks about Granda's lucidity made me

snort -- must be the irony of it all -- you all are " hittin' the wall " while

Granda's " really lucid. " Gotta smile at some of our trials and tribs.

I'm going back to you message now.

Be well. Joni

[Guest guest]

In a message dated 2/9/2003 12:57:35 PM Pacific Standard Time,

daniel.campbell1@... writes:

> His brain must be frazzled!!!!!!!, no time to withdraw from one set of meds

> when he's onto another.

> He seems very, very frightened, his walking has gone,problems with his

> eyes, doesn't know when he needs the loo(he did last week),skin broken down

> on his backside,has the beginnings of a pressure sore, clawing away at his

> arms,stomach and face, the list is endless.

> He has 24hr care from family and carers and we can't even prevent pressure

> sores from starting, what else can we do?.

, there was quite an in-depth discussion about starting and stopping

meds without giving the body a proper amount of time to get use to a new med

and time to come off the old med. I know someone will jump in and give you a

much better explanation than I have just done.

Could he be having an allergic reaction to something -- the itching all over,

soap or the drugs maybe? Have you ever thought of a humidifier for his room?

I know my skin gets very dry in the winter -- what do you all think out there

in computer land?

I'll go back to my reading now. Joni

[Guest guest]

, can your Granda stand on his own? If so, have you considered a " merry

walker " for him? My Dad just recently lost his merry walker privileges --

took three separate falls -- the last being pretty bad.

Anyone who has such a cool moniker as Granda deserves to enjoy his days.

There are times I hate all of our stories -- so much grief.

Let me know about the merry walker. If he can stand up at all we may be able

to make a trade! As long as you aren't pitched on the side of a mountain

somewhere!

You can use my e-mail if you wish.

Joni

[Guest guest]

, that sounds like a great idea. The NH where my Dad is, is really

rather exceptional. They have listened to me -- they have discussed treatment

with me and together I'm hoping we can make a difference in my Dad's life --

UNLESS OF COURSE IT'S ALL " EYEWASH! " Ya never can tell.

I think you've got an idea worth looking into.

Joni

In a message dated 2/9/2003 3:04:45 PM Pacific Standard Time,

daniel.campbell1@... writes:

> Subj: Re: Shirley, i'm comin over there!!!!!!!!

> Date: 2/9/2003 3:04:45 PM Pacific Standard Time

> From: <A

HREF= " mailto:daniel.campbell1@... " >daniel.campbell1@...</A>

> Reply-to: <A

HREF= " mailto:LBDcaregivers " >LBDcaregivers </A>

> To: <A

HREF= " mailto:LBDcaregivers " >LBDcaregivers </A>

> Sent from the Internet

>

>

>

> Shirley, I've been thinking of making a video of granda, I could send it to

> sally,she could add her bit about her dad,it could be sent over to you guys

> and one by one we could add all our bits,then try to get a network to pick

> it up and do a piece on LBD,they could see the day to day progression of

> this disease and how we struggle with so little help and information.

>

> Anyway it's just a thought.

> I sent you this attachment of a song I play when I need to find some inner

> peace and strength, I hope it works on your computer.

>

> .xx

> something else that was said at NH

> >

> >

> > I forgot to mention the other day while talking about the MSRA the

> >assistant

> > director of Nursing. While discussing mom's medication increase she had

>

> >the

> > nerve to tell me that mom is on " good behavior " while I am around. Of

> > course, I'm not treating her poorly. I didn't say anything because I

> >have a

> > problem holding my temper and I want to be able to let it all out when

> >the

> > time is right and I have family and Ombusman there to back me up. How

> >dare

> > them telling me that mom has a behavior problem! Who could blame her,

> >all

> > she is doing is demanding to be changed and repositioned, they come in

> >she

> > tells them and they say ok and leave for a long long time and sometimes

>

> >come

> > back in. I know they are short staffed but that's not my problem. Why

> >don't

> > they hire more people the need is certainly there! If they can't afford

>

> >it

> > then close the place down. They charge $4400 a month, for what I don't

> >know.

> > I did so much more at my home. If the stupid government of ours would

> >pay

> > someone to go into my parents home a total of 8 hours a day she would

> be

> >so

> > better off. Instead they would rather throw money away. What a bunch of

> > morons. Shirley

> >

> >

> >

> >

> >

> > _________________________________________________________________

> > MSN 8 with e-mail virus protection service: 2 months FREE*

> > http://join.msn.com/?page=features/virus

> >

> >

> >

[Guest guest]

,

Thanks for your concern I will let you know when the meeting is and you can

be there in spirit. As for your grandad don't be ready to give in yet. Mom

was at the point about a year ago where we figured she wouldnt last another

year. Her mind is still good most of the time. I found myself questioning

her need to be in a NH a couple of weeks ago she seemed to be doing so well.

Then the last week she has lost so much of her spirit and I can't tell if

it's the increase in medication or the UTI or the MSRA or the continued

neglect that is doing it. Probably all of the above but I really need to

know if I should have them cut back on her Seroquel and Trazadone. Last week

there was no need for it. This all seems so damn helpless. I know we will

find a way but at what cost and how much unessary damage has to set in

before it happens. If I had the strength and money I would have here here

with hired help and I know she would do a lot better. But then how long

until the damn Lewybodies start back in and play their nasty tricks. I

strongly believe that lack of care and medication plays the biggest part in

Lewybody Disease. Oh how we need the media to step in and get the word out.

Besides that our government sucks so damn bad. Look at the crap they let the

NH's get away with. Where are their priorities. God let us find a way.

Shirley

>

>Reply-To: LBDcaregivers

>To: <LBDcaregivers >

>Subject: Shirley, i'm comin over there!!!!!!!!

>Date: Sun, 9 Feb 2003 20:56:07 -0000

>

>Shirley, I'm comin over to punch these people straight in the mouth(I'm not

>really violent but these people just piss me off!).

>Your mom sounds like she's experiencing all that granda's going through

>right now.

>We've had what has to be one of the worst weeks with him, I don't know how

>he's coping with all this as he seems to be,for some strange reason, really

>lucid.

>

>His confusion lasts for a while then suddenly he remembers 'everything',he

>was taken off the quitiapine,this was replaced with a sedative,this didn't

>work so he was prescribed a much stronger one and this doesn't seem to be

>working either, by the way this has all happened in the space of one week.

>His brain must be frazzled!!!!!!!, no time to withdraw from one set of meds

>when he's onto another.

>He seems very, very frightened, his walking has gone,problems with his

>eyes, doesn't know when he needs the loo(he did last week),skin broken down

>on his backside,has the beginnings of a pressure sore, clawing away at his

>arms,stomach and face, the list is endless.

>He has 24hr care from family and carers and we can't even prevent pressure

>sores from starting, what else can we do?.

>

>He's terrified he'll go into a nursing home and we're desperately trying to

>stop this from happening .

>Every day there's a marked deterioration in him, we know he only has a

>short time left,but it's going so quick and he's suffering all the way, why

>can't god just let him go peacefully with no suffering?.

>It's not fair,he's never done anyone any harm in his life!!!!!!!!

>

>The only consolation is that when he goes,this damned disease can have him

>no more!!!.

>I hope and pray your mom gets over this infection Shirley,lots of love to

>you both.......

>....xxxxxxxxxxxx

> something else that was said at NH

>

>

> I forgot to mention the other day while talking about the MSRA the

>assistant

> director of Nursing. While discussing mom's medication increase she had

>the

> nerve to tell me that mom is on " good behavior " while I am around. Of

> course, I'm not treating her poorly. I didn't say anything because I

>have a

> problem holding my temper and I want to be able to let it all out when

>the

> time is right and I have family and Ombusman there to back me up. How

>dare

> them telling me that mom has a behavior problem! Who could blame her,

>all

> she is doing is demanding to be changed and repositioned, they come in

>she

> tells them and they say ok and leave for a long long time and sometimes

>come

> back in. I know they are short staffed but that's not my problem. Why

>don't

> they hire more people the need is certainly there! If they can't afford

>it

> then close the place down. They charge $4400 a month, for what I don't

>know.

> I did so much more at my home. If the stupid government of ours would

>pay

> someone to go into my parents home a total of 8 hours a day she would be

>so

> better off. Instead they would rather throw money away. What a bunch of

> morons. Shirley

>

>

>

>

>

> _________________________________________________________________

> MSN 8 with e-mail virus protection service: 2 months FREE*

> http://join.msn.com/?page=features/virus

>

>

>

[Guest guest]

Shirley, I've been thinking of making a video of granda, I could send it to

sally,she could add her bit about her dad,it could be sent over to you guys and

one by one we could add all our bits,then try to get a network to pick it up and

do a piece on LBD,they could see the day to day progression of this disease and

how we struggle with so little help and information.

Anyway it's just a thought.

I sent you this attachment of a song I play when I need to find some inner peace

and strength, I hope it works on your computer.

.xx

something else that was said at NH

>

>

> I forgot to mention the other day while talking about the MSRA the

>assistant

> director of Nursing. While discussing mom's medication increase she had

>the

> nerve to tell me that mom is on " good behavior " while I am around. Of

> course, I'm not treating her poorly. I didn't say anything because I

>have a

> problem holding my temper and I want to be able to let it all out when

>the

> time is right and I have family and Ombusman there to back me up. How

>dare

> them telling me that mom has a behavior problem! Who could blame her,

>all

> she is doing is demanding to be changed and repositioned, they come in

>she

> tells them and they say ok and leave for a long long time and sometimes

>come

> back in. I know they are short staffed but that's not my problem. Why

>don't

> they hire more people the need is certainly there! If they can't afford

>it

> then close the place down. They charge $4400 a month, for what I don't

>know.

> I did so much more at my home. If the stupid government of ours would

>pay

> someone to go into my parents home a total of 8 hours a day she would be

>so

> better off. Instead they would rather throw money away. What a bunch of

> morons. Shirley

>

>

>

>

>

> _________________________________________________________________

> MSN 8 with e-mail virus protection service: 2 months FREE*

> http://join.msn.com/?page=features/virus

>

>

>

[Guest guest]

,

I think that's a wonderful idea about the tape. Hopefully we would be able

to get some media to cover it. There was no attachments to your letter.

Shirley

>

>Reply-To: LBDcaregivers

>To: <LBDcaregivers >

>Subject: Re: Shirley, i'm comin over there!!!!!!!!

>Date: Sun, 9 Feb 2003 23:03:13 -0000

>

>Shirley, I've been thinking of making a video of granda, I could send it to

>sally,she could add her bit about her dad,it could be sent over to you guys

>and one by one we could add all our bits,then try to get a network to pick

>it up and do a piece on LBD,they could see the day to day progression of

>this disease and how we struggle with so little help and information.

>

>Anyway it's just a thought.

>I sent you this attachment of a song I play when I need to find some inner

>peace and strength, I hope it works on your computer.

>

>.xx

> something else that was said at NH

> >

> >

> > I forgot to mention the other day while talking about the MSRA the

> >assistant

> > director of Nursing. While discussing mom's medication increase she

>had

> >the

> > nerve to tell me that mom is on " good behavior " while I am around.

>Of

> > course, I'm not treating her poorly. I didn't say anything because I

> >have a

> > problem holding my temper and I want to be able to let it all out

>when

> >the

> > time is right and I have family and Ombusman there to back me up.

>How

> >dare

> > them telling me that mom has a behavior problem! Who could blame

>her,

> >all

> > she is doing is demanding to be changed and repositioned, they come

>in

> >she

> > tells them and they say ok and leave for a long long time and

>sometimes

> >come

> > back in. I know they are short staffed but that's not my problem.

>Why

> >don't

> > they hire more people the need is certainly there! If they can't

>afford

> >it

> > then close the place down. They charge $4400 a month, for what I

>don't

> >know.

> > I did so much more at my home. If the stupid government of ours

>would

> >pay

> > someone to go into my parents home a total of 8 hours a day she

>would be

> >so

> > better off. Instead they would rather throw money away. What a bunch

>of

> > morons. Shirley

> >

> >

> >

> >

> >

> > _________________________________________________________________

> > MSN 8 with e-mail virus protection service: 2 months FREE*

> > http://join.msn.com/?page=features/virus

> >

> >

> >

[Guest guest]

Shirley,

I am very sorry to hear all that you and your mom are going through.

Have you considered requesting hospital admittance? It sounds like

your mom has several physical problems and it does not sound like the

NH is able or willing to adequately meet her medical needs.

If hospital is not an option, your pastor or the Alzheimer's

Association might have a list of volunteers that could sit with your

mom (also keep a daily log?). Our local church community has

visiting nurses for home monitoring. It might be worth seeing if one

in your area could periodically check on your mom. On a positive

note, it sounds like your mom is fortunate to have a roommate that is

very helpful and kind.

I know what what a sad experience it can be to put your loved one in

the hands of others. I hope that your mother will soon be comfortable

and receiving good medical care.

Kindest regards,

Peggy (S.C.)

[Guest guest]

Joni, granda has two merry walkers or zimmers as we call them over here.

One has wheels and the other is a static walker that he lifts and walks with.

Up until a few weeks ago he could use them but this seems to have gone now.

His sleeping pattern is also a nightmare, we're on his back to try to stay awake

as much as possible during the day and I feel terrible about this, my view is

that if he's tired he's tired,let him sleep when he wants to.

The problem is that we cover overnights and he's only sleeping a few hours from

about 9.30pm till 2.30pm, then your up the rest of the night with him.

He can sleep during the day but we still have to go in and look after him so as

you can imagine we're starting to get a bit frazzled by all this.

I keep telling myself that it's not for long as we were told recently that he

has less than six months left( beats me how they know this!), going by what's

been going on over the last few weeks I don't think we'll have him with us for

that length of time, the deterioration is very evident every single day,but then

again this is LBD we're talking about so you never know.!!!!!!!!

xxx wet and wild in Glasgow tonight...

Re: Shirley, i'm comin over there!!!!!!!!

, can your Granda stand on his own? If so, have you considered a " merry

walker " for him? My Dad just recently lost his merry walker privileges --

took three separate falls -- the last being pretty bad.

Anyone who has such a cool moniker as Granda deserves to enjoy his days.

There are times I hate all of our stories -- so much grief.

Let me know about the merry walker. If he can stand up at all we may be able

to make a trade! As long as you aren't pitched on the side of a mountain

somewhere!

You can use my e-mail if you wish.

Joni

[Guest guest]

,

The sleep thing is very normal. My mom did that a lot while at home. Dad was

up most of the night and she slept off and on during the day. While at home

with my dad she slept average of maybe 2 hrs a night, 5 hours sleep for your

granda is a lot. My dad never got any sleep and she complained because " he "

was always tired. The first week mom stayed here while dad was recuperating

from his prostate surgery I went through the same thing. When she went to

the first nursing home following her Hip replacement surgery I had them give

her the Trazadone the doctor recommended for help with sleep also they gave

her I think it is called Risteral or Remeral for sleep. It worked great.

Then when she came to live here for 3 months following her surgery for hip

replacement we have her one 50mg of Trazadone at bedtime and she slept

pretty good. She did wake up and watch or listen to TV off and on but

nothing like at first.

She is still taking Trazadone at bedtime and Seroquel a little before and

sleeps pretty well, up until the latest developements. If he is not

sleeping at all you will need help. It is so hard and so drainging to manage

without sleep for all involved. Good luck, Shirley

>

>Reply-To: LBDcaregivers

>To: <LBDcaregivers >

>Subject: Re: Shirley, i'm comin over there!!!!!!!!

>Date: Mon, 10 Feb 2003 20:46:20 -0000

>

>Joni, granda has two merry walkers or zimmers as we call them over here.

>One has wheels and the other is a static walker that he lifts and walks

>with.

>Up until a few weeks ago he could use them but this seems to have gone now.

>His sleeping pattern is also a nightmare, we're on his back to try to stay

>awake as much as possible during the day and I feel terrible about this, my

>view is that if he's tired he's tired,let him sleep when he wants to.

>The problem is that we cover overnights and he's only sleeping a few hours

>from about 9.30pm till 2.30pm, then your up the rest of the night with him.

>He can sleep during the day but we still have to go in and look after him

>so as you can imagine we're starting to get a bit frazzled by all this.

>

>I keep telling myself that it's not for long as we were told recently that

>he has less than six months left( beats me how they know this!), going by

>what's been going on over the last few weeks I don't think we'll have him

>with us for that length of time, the deterioration is very evident every

>single day,but then again this is LBD we're talking about so you never

>know.!!!!!!!!

>

> xxx wet and wild in Glasgow tonight...

> Re: Shirley, i'm comin over there!!!!!!!!

>

>

> , can your Granda stand on his own? If so, have you considered a

> " merry

> walker " for him? My Dad just recently lost his merry walker privileges

>--

> took three separate falls -- the last being pretty bad.

> Anyone who has such a cool moniker as Granda deserves to enjoy his days.

> There are times I hate all of our stories -- so much grief.

> Let me know about the merry walker. If he can stand up at all we may be

>able

> to make a trade! As long as you aren't pitched on the side of a mountain

> somewhere!

> You can use my e-mail if you wish.

> Joni

>

>

>

>