Re: just found this site! / Donna

[Guest guest]

-Hi Donna:

Just can't believe your story is just the SAME.

And you say it only gets worse!

Words just don't express the pain we all must be experiencing.

I thing Jack was given Haldol at one time.

I live not too far from you - Mississauga, near Toronto, Ontario.

Here in Ontario they just take all of Jack's money for the NH and I

use mine for the house. In other words, we are paying for 2 places.

My name is not Trump!

Take care and hugs to you

Geri

-- In LBDcaregivers , Donna Bassolino-Klimas

<donna@d...> wrote:

> >

> > I wish I had found this site a long time ago. My husband, who

turned

> > 62 yesterday, is in the last stages of LBD. He was diagnosed in

2002

> > but had not been himself since 1998.

> > He can no longer walk,talk or do anything for himself. He has

been in

> > hospital since August of 2003. He went in with cellulitis and

never

> > came home.

>

> You sound lkike our story ...Dad went into the hospital for

pneumonia

> in Jan - can home for two weeks - went back with c-diff and has

> yet to come home.

>

> He went to Atlantic City in Jan and won $600 on the slots - today

> he can't walk, talk, eat,etc. He has a catheter and a PEG tube !

>

> When he went in to the hostpiual the second time (or was it

third ?)

> they gave him Haldol - which put him in such a catonic state for

over

> 5 days we had to get him a PEG to get food/water and MEDS into

him.

> (Haldol BTW takes about a month to wear off an LBD).

>

> In retro I'm not sure the PEG was the best idea - but at the time

(pre-

> HALDOL) he wasn't really in end-stage - we seemed to have jumped

there

> over night.

>

>

> > He has lost 54 pounds in the last year and drools continually. He

> > eats everything that is fed to him though.

>

> Dad has lost about 20 pounds since Jan - even with the PEG !

> At first he asked for stuff but no he doesn't bother. He's

> pretty much asleep most of the time. SOme days he's a little

awake /alert

> when we come (twice day - whew !)... other days he doesn't even

> acknowledge that we are there.

>

> > He does not have tremors but has terrible twitching. He has no

use of

> > his right hand or arm and did use his left hand to eat with a

couple

> > of years ago.

>

> Dad never had tremors either ... his left side seems more

effected though.

>

> > He went through the " agitated " stage for so long.He is on

seroquel at

> > the present time.

> > He just sits in the wheelchair all day.He does know me sometimes.

> > His hemoglobin is low and has constant diarrhea.

>

> I don't know about the hemo - but Dad gets diarrhea a lot - which

> aggrevates the bed sore he has too.

>

> > Does any of this sound familiar to anyone?

>

> Wayyyyy too familiar. I'm sorry for what you are going through -

> its awful .. and unfortunately from what I read here it only gets

worse.

>

> We were starting to think we might have to move Dad to NH... but

what

> they charge for the care they give (or lack there of !) is out

rageous.

>

> We could better spend the money getting help at home - espeically

if he

> is " end-stage " - which we haven't quite come to grips with yet.

>

> right now he's at a rehab center and we have to STAY on top of

them and

> this is one of the better places in the area ! Its crazy.

>

> watch what drugs they give him.LBD are sensitive to everything -

even

> cough medicine - and stuff like Haldol/Ativan etc can send them

for a loop

> that they might never return from.

>

> HUGS

>

> Donna

>

> PS - where are you ? I'm in New Jersey

>

>

>

> > Geri

> >

> >

> >

> >

> > Welcome to LBDcaregivers.

> >

> >

> >

[Guest guest]

Donna and Josie, thank you for sharing your stories. This is amazing

to read because my father was recently hospitalized, given Haldol and

Benadryl injections and Ativan for agitation and now, three weeks

later, he is having difficulty swallowing and even standing (he was

fully ambulatory and eating when he went in). When I asked his

hospital doctor about this steep decline and expressed my concern

about Haldol and LB, he told me " it's just the disease process " and

that the amount of Haldol he was given was " minimal. " Now my father

is in a nh and I learned from this site to write that he is allergic

to all these meds. What a horrible process this is... Tori

> > >

> > > I wish I had found this site a long time ago. My husband, who

> turned

> > > 62 yesterday, is in the last stages of LBD. He was diagnosed in

> 2002

> > > but had not been himself since 1998.

> > > He can no longer walk,talk or do anything for himself. He has

> been in

> > > hospital since August of 2003. He went in with cellulitis and

> never

> > > came home.

> >

> > You sound lkike our story ...Dad went into the hospital for

> pneumonia

> > in Jan - can home for two weeks - went back with c-diff and has

> > yet to come home.

> >

> > He went to Atlantic City in Jan and won $600 on the slots -

today

> > he can't walk, talk, eat,etc. He has a catheter and a PEG tube !

> >

> > When he went in to the hostpiual the second time (or was it

> third ?)

> > they gave him Haldol - which put him in such a catonic state

for

> over

> > 5 days we had to get him a PEG to get food/water and MEDS into

> him.

> > (Haldol BTW takes about a month to wear off an LBD).

> >

> > In retro I'm not sure the PEG was the best idea - but at the

time

> (pre-

> > HALDOL) he wasn't really in end-stage - we seemed to have

jumped

> there

> > over night.

> >

> >

> > > He has lost 54 pounds in the last year and drools continually.

He

> > > eats everything that is fed to him though.

> >

> > Dad has lost about 20 pounds since Jan - even with the PEG !

> > At first he asked for stuff but no he doesn't bother. He's

> > pretty much asleep most of the time. SOme days he's a little

> awake /alert

> > when we come (twice day - whew !)... other days he doesn't even

> > acknowledge that we are there.

> >

> > > He does not have tremors but has terrible twitching. He has no

> use of

> > > his right hand or arm and did use his left hand to eat with a

> couple

> > > of years ago.

> >

> > Dad never had tremors either ... his left side seems more

> effected though.

> >

> > > He went through the " agitated " stage for so long.He is on

> seroquel at

> > > the present time.

> > > He just sits in the wheelchair all day.He does know me

sometimes.

> > > His hemoglobin is low and has constant diarrhea.

> >

> > I don't know about the hemo - but Dad gets diarrhea a lot -

which

> > aggrevates the bed sore he has too.

> >

> > > Does any of this sound familiar to anyone?

> >

> > Wayyyyy too familiar. I'm sorry for what you are going through -

> > its awful .. and unfortunately from what I read here it only

gets

> worse.

> >

> > We were starting to think we might have to move Dad to NH...

but

> what

> > they charge for the care they give (or lack there of !) is out

> rageous.

> >

> > We could better spend the money getting help at home -

espeically

> if he

> > is " end-stage " - which we haven't quite come to grips with yet.

> >

> > right now he's at a rehab center and we have to STAY on top of

> them and

> > this is one of the better places in the area ! Its crazy.

> >

> > watch what drugs they give him.LBD are sensitive to everything -

> even

> > cough medicine - and stuff like Haldol/Ativan etc can send them

> for a loop

> > that they might never return from.

> >

> > HUGS

> >

> > Donna

> >

> > PS - where are you ? I'm in New Jersey

> >

> >

> >

> > > Geri

> > >

> > >

> > >

> > >

> > > Welcome to LBDcaregivers.

> > >

> > >

> > >

[Guest guest]

Hi Geri:

I had no idea you were in the Toronto vicinity. I live in Kleinburg

but I teach in a school on the Etobicoke/Mississauga border. My

parents live in Etobicoke.

Your story sounds like my parents' tale. My dad's pension almost

covers the cost of his private room and my mom's pension is miniscule

because she really didn't work once she became a caregiver for my

dad's mom.

Horrible how much heartache and turmoil follows a life spent working

hard.

Abby

[Guest guest]

>

> Donna and Josie, thank you for sharing your stories. This is amazing

> to read because my father was recently hospitalized, given Haldol and

> Benadryl injections and Ativan for agitation and now, three weeks

> later, he is having difficulty swallowing and even standing (he was

> fully ambulatory and eating when he went in). When I asked his

That's EXACTLY what happened to my Dad.

And the doctor - just says its natural progression !

So we really couldn't even have a law suit or anything - because there is no

way to proove that it itn't just the natural progression.

Even though WE all know its NOT! It might have been - but I think he was given

a push - and since Dad is 80 they act like its not big deal !

> hospital doctor about this steep decline and expressed my concern

> about Haldol and LB, he told me " it's just the disease process " and

> that the amount of Haldol he was given was " minimal. " N

Yes my Dad too - they claim they had no choice he was agitated.

>ow my father

> is in a nh and I learned from this site to write that he is allergic

> to all these meds. What a horrible process this is... Tori

>

Dad is in rehab - but he's not alert enough most of the time for any

rehab so they will probably be kicking him out soon.

We don't know whether to go NH (where he might get more of the same)

at home with help - or try hospice. SOme have suggested that you can get more

and better help through hospice but I haven't looked into that yet.

Let me know if you know anything !

Its awful - but it sure helps talking to others in the same boat.

HUGS

donna in New Jersey

>

>

>

> > > >

> > > > I wish I had found this site a long time ago. My husband, who

> > turned

> > > > 62 yesterday, is in the last stages of LBD. He was diagnosed in

> > 2002

> > > > but had not been himself since 1998.

> > > > He can no longer walk,talk or do anything for himself. He has

> > been in

> > > > hospital since August of 2003. He went in with cellulitis and

> > never

> > > > came home.

> > >

> > > You sound lkike our story ...Dad went into the hospital for

> > pneumonia

> > > in Jan - can home for two weeks - went back with c-diff and has

> > > yet to come home.

> > >

> > > He went to Atlantic City in Jan and won $600 on the slots -

> today

> > > he can't walk, talk, eat,etc. He has a catheter and a PEG tube !

> > >

> > > When he went in to the hostpiual the second time (or was it

> > third ?)

> > > they gave him Haldol - which put him in such a catonic state

> for

> > over

> > > 5 days we had to get him a PEG to get food/water and MEDS into

> > him.

> > > (Haldol BTW takes about a month to wear off an LBD).

> > >

> > > In retro I'm not sure the PEG was the best idea - but at the

> time

> > (pre-

> > > HALDOL) he wasn't really in end-stage - we seemed to have

> jumped

> > there

> > > over night.

> > >

> > >

> > > > He has lost 54 pounds in the last year and drools continually.

> He

> > > > eats everything that is fed to him though.

> > >

> > > Dad has lost about 20 pounds since Jan - even with the PEG !

> > > At first he asked for stuff but no he doesn't bother. He's

> > > pretty much asleep most of the time. SOme days he's a little

> > awake /alert

> > > when we come (twice day - whew !)... other days he doesn't even

> > > acknowledge that we are there.

> > >

> > > > He does not have tremors but has terrible twitching. He has no

> > use of

> > > > his right hand or arm and did use his left hand to eat with a

> > couple

> > > > of years ago.

> > >

> > > Dad never had tremors either ... his left side seems more

> > effected though.

> > >

> > > > He went through the " agitated " stage for so long.He is on

> > seroquel at

> > > > the present time.

> > > > He just sits in the wheelchair all day.He does know me

> sometimes.

> > > > His hemoglobin is low and has constant diarrhea.

> > >

> > > I don't know about the hemo - but Dad gets diarrhea a lot -

> which

> > > aggrevates the bed sore he has too.

> > >

> > > > Does any of this sound familiar to anyone?

> > >

> > > Wayyyyy too familiar. I'm sorry for what you are going through -

> > > its awful .. and unfortunately from what I read here it only

> gets

> > worse.

> > >

> > > We were starting to think we might have to move Dad to NH...

> but

> > what

> > > they charge for the care they give (or lack there of !) is out

> > rageous.

> > >

> > > We could better spend the money getting help at home -

> espeically

> > if he

> > > is " end-stage " - which we haven't quite come to grips with yet.

> > >

> > > right now he's at a rehab center and we have to STAY on top of

> > them and

> > > this is one of the better places in the area ! Its crazy.

> > >

> > > watch what drugs they give him.LBD are sensitive to everything -

>

> > even

> > > cough medicine - and stuff like Haldol/Ativan etc can send them

> > for a loop

> > > that they might never return from.

> > >

> > > HUGS

> > >

> > > Donna

> > >

> > > PS - where are you ? I'm in New Jersey

> > >

> > >

> > >

> > > > Geri

> > > >

> > > >

> > > >

> > > >

> > > > Welcome to LBDcaregivers.

> > > >

> > > >

> > > >

[Guest guest]

Hi Donna, Thank you for your response, it really does help to know

people understand exactly what I'm going through. I saw my father

yesterday and his is miserable. He's at an assisted living/nh. I

think he knows I'm there but I'm not sure. He isn't eating solid

foods, has a lot of weight in the last two weeks, and I was looking

at his muscles, the skin is just hanging on his arms. Right now he

is getting occupational, physical, and speech therapy but he is often

unresponsive, uncooperative, and still stricking out. The head nurse

told me that if he doesn't start rallying in a week that I should put

him on hospice. I want to give him the chance to rally and of course

hospice stops all restorative measures so the therapy will stop and

go into strictly comfort mode. It's difficult to find that balance

between being hopeful and realistic.

When you think of a place for your father, ask them how they would

handle certian situations. It was important for me to find out if

they could handle my father's agitation. The last place I had him in

called 911 when he struck out. Now they just back off until he calms

down, no big deal. Wish he was there before, we might have avoided

the hospital stay which set him back. Ah, hindsight...

Hang in there, my prayers are with you and keep me posted...

Tori

> > > > >

> > > > > I wish I had found this site a long time ago. My husband,

who

> > > turned

> > > > > 62 yesterday, is in the last stages of LBD. He was

diagnosed in

> > > 2002

> > > > > but had not been himself since 1998.

> > > > > He can no longer walk,talk or do anything for himself. He

has

> > > been in

> > > > > hospital since August of 2003. He went in with cellulitis

and

> > > never

> > > > > came home.

> > > >

> > > > You sound lkike our story ...Dad went into the hospital for

> > > pneumonia

> > > > in Jan - can home for two weeks - went back with c-diff and

has

> > > > yet to come home.

> > > >

> > > > He went to Atlantic City in Jan and won $600 on the slots -

> > today

> > > > he can't walk, talk, eat,etc. He has a catheter and a PEG

tube !

> > > >

> > > > When he went in to the hostpiual the second time (or was it

> > > third ?)

> > > > they gave him Haldol - which put him in such a catonic

state

> > for

> > > over

> > > > 5 days we had to get him a PEG to get food/water and MEDS

into

> > > him.

> > > > (Haldol BTW takes about a month to wear off an LBD).

> > > >

> > > > In retro I'm not sure the PEG was the best idea - but at

the

> > time

> > > (pre-

> > > > HALDOL) he wasn't really in end-stage - we seemed to have

> > jumped

> > > there

> > > > over night.

> > > >

> > > >

> > > > > He has lost 54 pounds in the last year and drools

continually.

> > He

> > > > > eats everything that is fed to him though.

> > > >

> > > > Dad has lost about 20 pounds since Jan - even with the PEG !

> > > > At first he asked for stuff but no he doesn't bother. He's

> > > > pretty much asleep most of the time. SOme days he's a

little

> > > awake /alert

> > > > when we come (twice day - whew !)... other days he doesn't

even

> > > > acknowledge that we are there.

> > > >

> > > > > He does not have tremors but has terrible twitching. He has

no

> > > use of

> > > > > his right hand or arm and did use his left hand to eat with

a

> > > couple

> > > > > of years ago.

> > > >

> > > > Dad never had tremors either ... his left side seems more

> > > effected though.

> > > >

> > > > > He went through the " agitated " stage for so long.He is on

> > > seroquel at

> > > > > the present time.

> > > > > He just sits in the wheelchair all day.He does know me

> > sometimes.

> > > > > His hemoglobin is low and has constant diarrhea.

> > > >

> > > > I don't know about the hemo - but Dad gets diarrhea a lot -

> > which

> > > > aggrevates the bed sore he has too.

> > > >

> > > > > Does any of this sound familiar to anyone?

> > > >

> > > > Wayyyyy too familiar. I'm sorry for what you are going

through -

> > > > its awful .. and unfortunately from what I read here it

only

> > gets

> > > worse.

> > > >

> > > > We were starting to think we might have to move Dad to

NH...

> > but

> > > what

> > > > they charge for the care they give (or lack there of !) is

out

> > > rageous.

> > > >

> > > > We could better spend the money getting help at home -

> > espeically

> > > if he

> > > > is " end-stage " - which we haven't quite come to grips with

yet.

> > > >

> > > > right now he's at a rehab center and we have to STAY on top

of

> > > them and

> > > > this is one of the better places in the area ! Its crazy.

> > > >

> > > > watch what drugs they give him.LBD are sensitive to

everything -

> >

> > > even

> > > > cough medicine - and stuff like Haldol/Ativan etc can send

them

> > > for a loop

> > > > that they might never return from.

> > > >

> > > > HUGS

> > > >

> > > > Donna

> > > >

> > > > PS - where are you ? I'm in New Jersey

> > > >

> > > >

> > > >

> > > > > Geri

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Welcome to LBDcaregivers.

> > > > >

> > > > >

> > > > >