One step forward and two steps back

[Guest guest]

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@...

Direct tel.

Sent from my iPhone

> 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 ] On

Behalf Of Judy

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

> To: LBDcaregivers

> Cc: <LBDcaregivers >

> 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>

> Direct tel.

>

> Sent from my iPhone

>

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

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

On Behalf Of Judy

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

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

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

<LBDcaregivers <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>

> > Direct tel.

> >

> > Sent from my iPhone

> >

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

<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>

> > > Direct tel.

> > >

> > > Sent from my iPhone

> > >

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

<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

<mailto:LBDcaregivers%40yahoogroups.com>

<mailto:LBDcaregivers%40yahoogroups.com> ]

> > > > On Behalf Of hibbittsjenn@... <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>

> > > > Subject: Ativan

> > > >

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

> > > >

> > > >

> > > >

> > > >