Re: One step forward and two steps back

[Guest guest]

Judy did the hospital give her ANTHING else after you left? If she has a uti

it can cause this too of course. Prayers for your mother and I am so glad she

has familiar people with her and you can hopefully get a little rest.

My mil has stopped yelling finally and sleeping now.. I am going to get some

sleep while there’s quiet.

Take good care Judy,

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Judy

Sent: Saturday, June 18, 2011 11:06 PM

To: LBDcaregivers

Cc: <LBDcaregivers >

Subject: One step forward and two steps back

Dear Dorothy and other angel friends

Jihad when it looked like mom was peaceful more problems -

I guess this LBD trajectory of decline can sometimes be best described as

watching a loved one take one step forward and two steps back

It's a little passed 2:00 a.m. in NYC and I left mom a over an hour ago with the

2 caregivers at the ER Columbia Presbyterian Hospital !

We r as I mentioned before blessed with extraordinary help with my mom for over

a year in home! won't leave Mom's side and just got there to

relieve who won't leave and get rest until my mom gets more relief!

When I left as i reported to you then I thought mom looked more comfortable! I

got home and called and the hospital before I try to get some sleep

only to find out mom is still agitated and is trying to pull everything out -

the drip, the hospital bracelet, catheter etc. Now I'm waiting to see what the

results are on the blood and urine culture. They needed both caregivers just to

hold mom down to put the drip back in!

I can't wait to hear what the drs have to say about the test results- we have

not had much if any agitation to date with mom and the sudden agitation which

seems to be a hallmark of many of your loved ones with LBD is new to me and her

caregivers. I will keep you all informed and welcome any of your thoughts

You my dear support group friends are a lifeline! I really don't know how I

would be able to fwy through this journey without you! Thank you and god bless

you all-

Judy

Judy R Strauss MSW PhD

Lead Faculty

University of Phoenix/ Jersey City

Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

Direct tel.

Sent from my iPhone

On Jun 19, 2011, at 1:37 AM, " dsinouye " <fullcircle@...

<mailto:fullcircle%40sonic.net> > wrote:

> So glad to hear this Judy. My mil’s doctors advise to start off with very

low dose of anything we’re not sure about. So very glad she is comfortable.

>

> Hang in there

>

> Dorothy

>

> From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ]

On Behalf Of Judy

> Sent: Saturday, June 18, 2011 9:28 PM

> To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> Cc: <LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> >

> Subject: Re: Need input on agitation

>

> Thanks Dorothy and especially about the cipro! They gave her a small dose of

morphine Nd she seems more comfortable

>

> Beat,

>

> Judy R Strauss MSW PhD

>

> Lead Faculty

> University of Phoenix/ Jersey City

> Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

<mailto:Jrstr%40email.Phoenix.edu>

> Direct tel.

>

> Sent from my iPhone

>

> On Jun 19, 2011, at 12:23 AM, " dsinouye " <fullcircle@...

<mailto:fullcircle%40sonic.net> <mailto:fullcircle%40sonic.net> > wrote:

>

> > Hopefully the hospital will do a culture and sensitivity to see what’s

going on with the uti.

> >

> > My mil reacted with great agitation and confusion to CIPRO, LEVAQUIN and

AVELOX – all flourquinalin antibiotics. You can find on the drug information

mention of this kind of reaction so it’s not unheard of. Perhaps your mother

is having similar problems with Cipro??

> >

> > It certainly sounds like a UTI and hopefully they will give her a different

antibiotic for it. Then see if the agitation improves.

> >

> > My mil has not tried morphine yet. We have used hydrocodone for the last 5

years since she broke her back and she has done fine with it thank goodness.

> >

> > Dorothy

> >

> > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Judy

> > Sent: Saturday, June 18, 2011 8:41 PM

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com>

> > Cc: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> ; <LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> >

> > Subject: Re: Need input on agitation

> >

> > What does anyone know about morphine and LBD ?

> >

> > Judy R Strauss MSW PhD

> >

> > Lead Faculty

> > University of Phoenix/ Jersey City

> > Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

<mailto:Jrstr%40email.Phoenix.edu> <mailto:Jrstr%40email.Phoenix.edu>

> > Direct tel.

> >

> > Sent from my iPhone

> >

> > On Jun 18, 2011, at 9:55 PM, Judy <jrstraussb@...

<mailto:jrstraussb%40aol.com> <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com> > wrote:

> >

> > > Dear friends

> > >

> > > I have been a regular in this group but mostly in observation of how

others are coping with loved ones with LBD and I am always amazed and grateful

for how much I learn from all of u!

> > >

> > > I am writing tonite since I could use your help in figuring out what is up

with my 77 yr old mom

> > > Alittle background - my mother was first diagnosed with parkinsons in and

around 2003- after several fractures and general balance and rigidity problems -

when she began to exhibit a rapid decline in cognition April of 2010 she was

diagnosed with the LBD and we had 24/7 home care for her ever since with an

angel named -

> > >

> > > mom is on the excellon patch - cymbalta - Locartin ( for blood pressure )-

lipitor and levedopa - all of which has kept her stable and comfortable However

within the last 15 months she stopped talking, ambulating and now I'm not sure

I'd she recognizes me anymore

> > >

> > > At the beginning of this week mom was showing discomfort pointing to her

pelvis - we consulted with her dr who put her on a low dose of cipro thinking it

was a UTI and she seemed to show less discomfort

> > > then Today I got a call from her aid catherine that mom was very agitated

- I came over to find my mom very anxious and sweaty and showing an even greater

cognitive dip-

> > >

> > > We r now waiting to be seen in the er NYC

> > > I have trepidation about why drug might be useful in calming her down

enough for them to even examine or test her!

> > >

> > > If anyone gas had this experience or can recommend the best possible drug

to be used for extreme agitation I would appreciate your input

> > >

> > > Thank you in advance

> > >

> > > Judy

> > >

> > > Judy R Strauss MSW PhD

> > >

> > > Lead Faculty

> > > University of Phoenix/ Jersey City

> > > Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

<mailto:Jrstr%40email.Phoenix.edu> <mailto:Jrstr%40email.Phoenix.edu>

> > > Direct tel.

> > >

> > > Sent from my iPhone

> > >

> > > On Jun 17, 2011, at 1:09 PM, " dsinouye " <fullcircle@...

<mailto:fullcircle%40sonic.net> <mailto:fullcircle%40sonic.net>

<mailto:fullcircle%40sonic.net> > wrote:

> > >

> > > > The regular dose of ativan puts my mil in delirium for days with strong

> > > > hallucinations. Her doctor urged me to try liquid and a small dose. So

in

> > > > emergencies I give her a very tiny bit if she is having extreme

> > > > anxiety/agitation and it helps sometimes. The liquid dose we give is .25

> > > > cc with a syringe, not the dropper. Anything more and she has very bad

> > > > undesirable side effects.

> > > >

> > > > -Dorothy

> > > >

> > > > From: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> ]

> > > > On Behalf Of hibbittsjenn@... <mailto:hibbittsjenn%40aol.com>

<mailto:hibbittsjenn%40aol.com> <mailto:hibbittsjenn%40aol.com>

> > > > Sent: Friday, June 17, 2011 7:50 AM

> > > > To: lbdcaregivers

<mailto:lbdcaregivers%40yahoogroups.com>

<mailto:lbdcaregivers%40yahoogroups.com>

<mailto:lbdcaregivers%40yahoogroups.com>

> > > > Subject: Ativan

> > > >

> > > > What side effects have ya'll experienced with Ativan and LBD?

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Hi Dorothy.and group

Thanks Dorothy for your reply - it's a little after 3 am and

I'm still up and just spoke with who tells me the blood work showed an

infection which j surprises me since she has been on cipro since Tuesday

evening- I know

It's too bad I can't get ahold of the doctors or the nurses on the er

I'm going to try to get some sleep-

Judy

Office email:

Jrstr@...

Sent from my iPhone

> Judy did the hospital give her ANTHING else after you left? If she has a uti

it can cause this too of course. Prayers for your mother and I am so glad she

has familiar people with her and you can hopefully get a little rest.

>

> My mil has stopped yelling finally and sleeping now.. I am going to get some

sleep while there’s quiet.

>

> Take good care Judy,

>

> Dorothy

>

> From: LBDcaregivers [mailto:LBDcaregivers ] On

Behalf Of Judy

> Sent: Saturday, June 18, 2011 11:06 PM

> To: LBDcaregivers

> Cc: <LBDcaregivers >

> Subject: One step forward and two steps back

>

> Dear Dorothy and other angel friends

>

> Jihad when it looked like mom was peaceful more problems -

>

> I guess this LBD trajectory of decline can sometimes be best described as

watching a loved one take one step forward and two steps back

>

> It's a little passed 2:00 a.m. in NYC and I left mom a over an hour ago with

the 2 caregivers at the ER Columbia Presbyterian Hospital !

>

> We r as I mentioned before blessed with extraordinary help with my mom for

over a year in home! won't leave Mom's side and just got there

to relieve who won't leave and get rest until my mom gets more relief!

>

> When I left as i reported to you then I thought mom looked more comfortable! I

got home and called and the hospital before I try to get some sleep

only to find out mom is still agitated and is trying to pull everything out -

the drip, the hospital bracelet, catheter etc. Now I'm waiting to see what the

results are on the blood and urine culture. They needed both caregivers just to

hold mom down to put the drip back in!

>

> I can't wait to hear what the drs have to say about the test results- we have

not had much if any agitation to date with mom and the sudden agitation which

seems to be a hallmark of many of your loved ones with LBD is new to me and her

caregivers. I will keep you all informed and welcome any of your thoughts

>

> You my dear support group friends are a lifeline! I really don't know how I

would be able to fwy through this journey without you! Thank you and god bless

you all-

>

> Judy

>

> Judy R Strauss MSW PhD

>

> Lead Faculty

> University of Phoenix/ Jersey City

> Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

> Direct tel.

>

> Sent from my iPhone

>

> On Jun 19, 2011, at 1:37 AM, " dsinouye " <fullcircle@...

<mailto:fullcircle%40sonic.net> > wrote:

>

> > So glad to hear this Judy. My mil’s doctors advise to start off with very

low dose of anything we’re not sure about. So very glad she is comfortable.

> >

> > Hang in there

> >

> > Dorothy

> >

> > From: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

[mailto:LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> ]

On Behalf Of Judy

> > Sent: Saturday, June 18, 2011 9:28 PM

> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

> > Cc: <LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

>

> > Subject: Re: Need input on agitation

> >

> > Thanks Dorothy and especially about the cipro! They gave her a small dose of

morphine Nd she seems more comfortable

> >

> > Beat,

> >

> > Judy R Strauss MSW PhD

> >

> > Lead Faculty

> > University of Phoenix/ Jersey City

> > Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

<mailto:Jrstr%40email.Phoenix.edu>

> > Direct tel.

> >

> > Sent from my iPhone

> >

> > On Jun 19, 2011, at 12:23 AM, " dsinouye " <fullcircle@...

<mailto:fullcircle%40sonic.net> <mailto:fullcircle%40sonic.net> > wrote:

> >

> > > Hopefully the hospital will do a culture and sensitivity to see what’s

going on with the uti.

> > >

> > > My mil reacted with great agitation and confusion to CIPRO, LEVAQUIN and

AVELOX – all flourquinalin antibiotics. You can find on the drug information

mention of this kind of reaction so it’s not unheard of. Perhaps your mother

is having similar problems with Cipro??

> > >

> > > It certainly sounds like a UTI and hopefully they will give her a

different antibiotic for it. Then see if the agitation improves.

> > >

> > > My mil has not tried morphine yet. We have used hydrocodone for the last 5

years since she broke her back and she has done fine with it thank goodness.

> > >

> > > Dorothy

> > >

> > > From: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> ] On Behalf Of Judy

> > > Sent: Saturday, June 18, 2011 8:41 PM

> > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com>

> > > Cc: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> ; <LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> >

> > > Subject: Re: Need input on agitation

> > >

> > > What does anyone know about morphine and LBD ?

> > >

> > > Judy R Strauss MSW PhD

> > >

> > > Lead Faculty

> > > University of Phoenix/ Jersey City

> > > Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

<mailto:Jrstr%40email.Phoenix.edu> <mailto:Jrstr%40email.Phoenix.edu>

> > > Direct tel.

> > >

> > > Sent from my iPhone

> > >

> > > On Jun 18, 2011, at 9:55 PM, Judy <jrstraussb@...

<mailto:jrstraussb%40aol.com> <mailto:jrstraussb%40aol.com>

<mailto:jrstraussb%40aol.com> > wrote:

> > >

> > > > Dear friends

> > > >

> > > > I have been a regular in this group but mostly in observation of how

others are coping with loved ones with LBD and I am always amazed and grateful

for how much I learn from all of u!

> > > >

> > > > I am writing tonite since I could use your help in figuring out what is

up with my 77 yr old mom

> > > > Alittle background - my mother was first diagnosed with parkinsons in

and around 2003- after several fractures and general balance and rigidity

problems - when she began to exhibit a rapid decline in cognition April of 2010

she was diagnosed with the LBD and we had 24/7 home care for her ever since with

an angel named -

> > > >

> > > > mom is on the excellon patch - cymbalta - Locartin ( for blood pressure

)- lipitor and levedopa - all of which has kept her stable and comfortable

However within the last 15 months she stopped talking, ambulating and now I'm

not sure I'd she recognizes me anymore

> > > >

> > > > At the beginning of this week mom was showing discomfort pointing to her

pelvis - we consulted with her dr who put her on a low dose of cipro thinking it

was a UTI and she seemed to show less discomfort

> > > > then Today I got a call from her aid catherine that mom was very

agitated - I came over to find my mom very anxious and sweaty and showing an

even greater cognitive dip-

> > > >

> > > > We r now waiting to be seen in the er NYC

> > > > I have trepidation about why drug might be useful in calming her down

enough for them to even examine or test her!

> > > >

> > > > If anyone gas had this experience or can recommend the best possible

drug to be used for extreme agitation I would appreciate your input

> > > >

> > > > Thank you in advance

> > > >

> > > > Judy

> > > >

> > > > Judy R Strauss MSW PhD

> > > >

> > > > Lead Faculty

> > > > University of Phoenix/ Jersey City

> > > > Jrstr@... <mailto:Jrstr%40email.Phoenix.edu>

<mailto:Jrstr%40email.Phoenix.edu> <mailto:Jrstr%40email.Phoenix.edu>

> > > > Direct tel.

> > > >

> > > > Sent from my iPhone

> > > >

> > > > On Jun 17, 2011, at 1:09 PM, " dsinouye " <fullcircle@...

<mailto:fullcircle%40sonic.net> <mailto:fullcircle%40sonic.net>

<mailto:fullcircle%40sonic.net> > wrote:

> > > >

> > > > > The regular dose of ativan puts my mil in delirium for days with

strong

> > > > > hallucinations. Her doctor urged me to try liquid and a small dose. So

in

> > > > > emergencies I give her a very tiny bit if she is having extreme

> > > > > anxiety/agitation and it helps sometimes. The liquid dose we give is

..25

> > > > > cc with a syringe, not the dropper. Anything more and she has very bad

> > > > > undesirable side effects.

> > > > >

> > > > > -Dorothy

> > > > >

> > > > > From: LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> [mailto:LBDcaregivers

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> ]

> > > > > On Behalf Of hibbittsjenn@... <mailto:hibbittsjenn%40aol.com>

<mailto:hibbittsjenn%40aol.com> <mailto:hibbittsjenn%40aol.com>

> > > > > Sent: Friday, June 17, 2011 7:50 AM

> > > > > To: lbdcaregivers

<mailto:lbdcaregivers%40yahoogroups.com>

<mailto:lbdcaregivers%40yahoogroups.com>

<mailto:lbdcaregivers%40yahoogroups.com>

> > > > > Subject: Ativan

> > > > >

> > > > > What side effects have ya'll experienced with Ativan and LBD?

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Hi, Judy. My mother had a similar experience four years ago when hospitalized

due to a UTI and dehydration. Prior to this particular UTI, Mom was able to do

most things for herself and was walking. She was falling on occasion but she

was walking.

When she was admitted to the hospital, the physician (I was so much less

educated at the time and would never permit this now) discontinued all of Mom's

medications in order to get a baseline because she was nearly non-responsive.

What ensued for the 8 days of her hospitalization was totally what you

described. Only, I didn't have the benefit of education and relied on the

more-educated physician. Never again! I now know that withdrawing her meds

suddenly probably put her into a tailspin where wild hallucinations overcame

her, peppered with fear and extreme agitation. Yes, she did also pull out the

IVs until they put her in restraints. We were with her 24/7 and I don't recall

her not moving her arms and legs during the entire time, even when she was

lucid.

A neurologist on staff, probably not knowledgeable in dementias since she

specialized in pain management, tried Ativan in a short burst. No change.

Then, tried Haldol in a short burst. No change. After Mom's meds were returned

to her near the end of the hospitalization, she began to quiet down. However,

she walked only with a ton of assistance for only a few more months, losing that

ability in November, 2007. I vowed never again to hospitalize her if humanly

possible and have gained much more knowledge, thanks to this group largely, in

order to attain that goal.

I also remember several events where Mom would become highly agitated, even

breaking her necklace one time. After a few of these events (new to me and to

staff at the facility where she lived...so much educating to do), I wondered if

pain might be a factor and gave her a teaspooon of liquid children's tylenol.

It did help to calm her. We tried a regular dose of liquid tylenol but it

proved too much for her kidneys so that was stopped. I keep children's motrin

on hand in liquid form and will give it to her if I see too much movement in her

arms and/or legs. If I need to give her a dose and just sit and watch

afterward, we can see how she grows more and more relaxed over a period of about

20-30 minutes. With Parkinsonism, there are all too many ways they can feel

pain.

I hope this helps to give some reassurance that this is part of the LBD.

Perhaps it will help in other ways, too.

Best wishes,

Lynn in Florida

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> Dear Dorothy and other angel friends

>

> Jihad when it looked like mom was peaceful more problems -

>

> I guess this LBD trajectory of decline can sometimes be best described as

watching a loved one take one step forward and two steps back

>

> It's a little passed 2:00 a.m. in NYC and I left mom a over an hour ago

with the 2 caregivers at the ER Columbia Presbyterian Hospital !

>

> We r as I mentioned before blessed with extraordinary help with my mom for

over a year in home! won't leave Mom's side and just got

there to relieve who won't leave and get rest until my mom gets more

relief!

>

> When I left as i reported to you then I thought mom looked more comfortable! I

got home and called and the hospital before I try to get some sleep

only to find out mom is still agitated and is trying to pull everything out -

the drip, the hospital bracelet, catheter etc. Now I'm waiting to see what the

results are on the blood and urine culture. They needed both caregivers just to

hold mom down to put the drip back in! <snip