Re: Re: My First LBD Conscious Healthcare Milestone/Joan

[Guest guest]

I'm glad to see this. I was typing my response as you posted this and didn't see

that things went so well.

All our LOs react so differently to the same medications. Good news from you.

Thank goodness.

Re: My First LBD Conscious Healthcare Milestone

OK Everyone...I'm not stupid and ignore your responses. I responded

to someone else about the Haldol before I went through all the

digests and that was STUPID of me.

My mom is actually doing pretty good as far as I can see. It is the

most peaceful she has been. She would wake up and talk and only

seemed tired (not drugged), nothing unusual. At about 10:00 a.m.

today they had to take her for a Kidney scan and they gave her

another injection and that put her back to sleep again. She was

starting to wake up more often and is also eating a little bit- which

is a relief to me!

I told them not to give her any more of the Haldol tonight because

she will most likely come home tomorrow. So, I am hoping to find her

feeling better tomorrow. She was very happy when I told her that most

likely she will go home tomorrow. She didn't seem to be having any

hallucinations or delusions. But, I am wondering if the doctor who

ordered the Haldol really did what the neurologist asked or just gave

her a high dose to calm her down. Her voice was very drugged-out

sounding while taking the Risperdal, but today her voice is softer

and she seems to have more inflection in her voice. I pray that

nothing bad happens to her as a result of this medication.

Funny thing is that they were putting on the heart leads to monitor

her last night when I left and today I noticed that they weren't

there. It appears that she kept pulling them off last night. She

told them that the box they were attached to was too heavy. I felt it

tonight and it weighs probably more than 2 pounds and they had it

inserted in the front of her gown. So, I wonder how they think that

weight feels laying on the chest of a woman who doesn't even weigh 80

lbs. The nurse today make a little pouch out of stretchable gauze to

carry it when she is up to use the restroom, etc. and then it just

lays in the bed next to her while she is in the bed. They have an

alarm on her bed so that she can't get up without the alarm going

off, but as at home she doesn't get out unless someone helps her.

She still has on her thermal undershirt that she wanted to go home in

yesterday, and her pants. At least they left that on so she would be

a little warmer. They had the engineering dept come in to make the

room warmer and they taped over the airvents, but as you all know

that doesn't help to the degree that she needs it.

Her twitches in her arms are worse today and her hand used to shake

just a little when that happened but today the hand was moving

stronger. I actually left a message for the neurologist today (didn't

get a reply yet) about what can be done to help it. So, before I talk

to him, tell me what all of you think is good and bad. I will check

the posts before I go to the hospital in the morning, and I won't

pick up any prescriptions for her until I read the posts again.

The hospital social worker is arranging for home health care,

physical therapy, and occupational therapy consults in the home.

Might give me some respite time, they say. The doctor seemed

surprised that I want to take her home instead of going to a

facility, but they don't realize that I have lived with her for

almost 50 years, this disease didn't just start yesterday, and

tomorrow the difference won't be the same for me as if I hadn't been

there for her all this time. She is not a high-maintenance person,

is a manageable size, and I just love her to death. The therapists

were asking me about the things that I do for her, and questioned why

I didn't do others. I told them that I want her to retain the right

to do the things that she can still do...I don't want to take away

her right to do those things because I believe that she will feel

helpless and then she will have no will to live. I am not sure what

stage she is in, but changes are taking place quite quickly. I don't

know if that is due to the Risperdal or that is just the way it is.

When I stop and think, the first sign of her confusion while walking

home was three years ago. I guess because there was a long period of

no confusion in there that I didn't think of that before.

Tonight I will pray for all of you and your loved ones, and for those

of you that believe in the power of prayer, please remember my mom

and me.

And for those Christians out there, I was sitting in church tonight

for Good Friday services and I just started crying because no matter

how hard this is going to get on me, and even how much harder it is

on our loved ones, it doesn't even compare to what Jesus suffered for

us.

I cry, but it isn't for me, it is because my mom just doesn't deserve

this horrible disease!

Joan

>

> Quoting :

>

> > <snip> About 7 p.m. tonight the nurses gave her a dose of halidol?

> > and she was out like a light within five minutes. <snip>

>

> Oh yeah - out like a light in 5 minutes ...

>

> Let's see how long it takes to " comeback "

>

> Not to scare you but my Dad - *never* did ! It put him in a

catatonic

> state for sooo long he had to get a feeding tube for meds and food.

>

> He came out of it a bit in a few weeks - but it all made him go

sooo

> down hill he never recovered and passed about 8 weeks later.

>

> DO NOT GIVE HALDOL !!

>

> Donna

>

> >

> > NO Haldol! Haldol is BAD for those w/ LBD. Read here:

> >

> > HALDOL:

> >

> > The " Emergency Wallet Card " from LBDA lists traditional

> > antipsychotics (e.g. Haldol) as a NO NO:

> > " CONTRAINDICATED:

> > All traditional antipsychotics "

> > (to order an emergency wallet card - email LBDA at LBDA @LBDA.org

(no

> > spaces))

> >

>

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