Re: the NH just called...

[Guest guest]

Hi SHerry,

I'll say some prayers for you and your Mom. God Bless.

Helene

>

> ...and my mom has been dizzy and losing her balance this evening.

They said

> that she's still confused like she's been the last couple of weeks,

but that

> it's different. Kim (nurse) said that her " gut " tells her that

something is

> going on, her BP has been erratic, and something just isn't right.

She

> asked if she should send her to the hospital, and I told her that I

would

> trust her instincts since I haven't seen her since yesterday. My

mom has

> been acting like she has a bladder infection for the last 3 weeks

but the

> culture was negative - so something else might be going on, maybe

an

> infection elsewhere or a bad tooth or whatever that she can't

articulate.

>

> They will call me back, Kim already had the paperwork made out to

transfer

> her. I hope that she goes back down to Gratiot in Alma, it's an

hour away

> but NONE of the hospitals around here are lewy-savvy, in fact the

closest

> one insisted on giving her ativan, then when she got combative from

that

> they zombie'd her with haldol - the hospitalist there says that all

> dementias are the same and refuses to listen to anything

different. But I

> also told Kim that if adamantly refuses to go, not to send

her because

> I don't want her stroking out or strapped down to a stretcher or

> something...

>

> (By the way, my mom is still refusing baths, it has now been over 3

weeks.

> Today they said that she WOULD get a bath one way or another and I

said I

> agreed with that - it's more than hygiene now, it is becoming a

medical

> necessity as well. But they hadn't yet gotten to it when all this

started,

> and Kim said that she didn't feel now is the time to stress her

further.)

>

> Personally I have been working day and night as my business is so

incredibly

> busy and I'm having a hard time producing enough product to keep

up...plus

> with my full-time day job today I turned into a blabbering idiot

that wasn't

> making much sense and crying at the drop of a hat. So I took a 3

hour nap

> after work and it's a good thing, in case I decide to go to the

hospital

> if/when they send her...I'm terrified of another ativan/haldol

incident, or

> any doctor who decides to make med changes, or whatever. It is

awful that

> so few doctors are lewy-familiar and I even have to worry about

it...but

> just feel a need to go with her, if she goes....

>

> I had a long talk with on the phone today also, first time

we've talked

> in months; he really wants to be involved but didn't know if we had

placed

> limits on his involvement. I told him that he can visit her

whenever, when

> she's doing well enough he can take her out to dinner or anything,

that he

> can even take her out overnight BUT that is ONLY when she's doing

well. I

> explained that there are 4 people who are listed on her file to be

able to

> see her whenever or take her out: Pete and I, my sister Gwen, and

. He

> wants to be more involved in her care and her life but has been

afraid to do

> anything wrong and, as I've said before, I think that can only be

good for

> her. IF she can still handle it. It could be that the

relationship is too

> much for her to handle now but I'm going to see what develops, and

told him

> that as long as it is good for her and she doesn't have problems as

a

> result, I'd love it if he would be a bigger part of her life now

that he's

> back in town...he plans to go see her this weekend but now of

course if she

> does go to the hospital I'll have to let him know that...

>

> OK, well, just updating again, things never settle down to a

routine with

> LBD do they <sigh>...the only thing constant about it is change...

>

> His,

> Sherry

> www.owly.net

> daughter of , (mis?)diagnosed with AD in 2005, descent slowed

by

> Aricept; diagnosed with LBD March 2008, in a wonderful NH 1/2 mile

from my

> house. We're learning to live with Lewy...

>