Re: A New Phase?

[Guest guest]

Hello Dena,

Yes, rain is on the way and hopefully we won't get too much. Take it easy in

LA, the first rain is the hardest for those people..LOL.

I'm glad that you can see your Mother as " comfortable and content. " That's

truly all we can do for them. I asked Mr. B " where were you? " when he went

into this last 'coma-Lewy' state and he said he had no idea and he couldn't

remember anything about it. He doesn't even remember trying to climb over the

bed

rail.

Just be comforted in knowing that you are doing the best you can and your

Mother is fine. You are probably the one who needs the attention now.

Sending you Love and Peace your way, Stevie

* * * * * * * *

Hi Stevie

So glad to hear that you had a nice trip to San Diego.

It is still a nice day to head up the coast today. But

sadly rain is on the way they say. I have a Dr. appt

in L.A. on Monday so it will probably pour.

I feel like I am not in the " end stages " but the

" forever stages " . This disease is sending me over the

edge. Not really. I can only imagine what your ride is

like. It is a roller coaster that we can't get off of.

I just remind myself that my mom looks comfortable and

content and even though we cannot communicate much

anymore she is here, if in shell only, and I will try

to continue this for as long as I can.

Thanks for reminding me that I am not alone.

Love to you and Mr. B

Dena

--- juperant@... wrote:

> Hello Dena and All,

>

> E-Ticket indeed! I'm so sorry to hear that you are

> on that ride too. I

> can't believe what I have witnessed with this

> disease and quite frankly either can

> Hospice!

>

> I have been away from the computer for several days

> because a few more things

> have happened that needed tending to besides Mr. B.

> Here's a little update:

>

> Last time I wrote, besides the drive to San Diego, I

> think I was just getting

> ready to call the mortuary, when, again, my Uncle

> " came out of it " and asked

> " what's for dinner? " . It freaked out the nurse from

> Hospice so much that she

> couldn't believe what she was seeing, so I offered

> her an ATIVAN to settle her

> down. She looked at me and just said, " Very funny. "

> That was the third time

> in two weeks that Mr. B went wayyyyyy down below sea

> level and came back

> up....still breathing. It has been such a roller

> coaster ride and no one believes

> it until they see it for themselves!

>

> Dena, Mr. B couldn't swallow, refused food & water,

> was incontinent, couldn't

> stand up or walk, looked straight ahead and didn't

> answer when talked to,

> shallow breathed on and off, talked to " someone "

> towards the ceiling, had

> modeling (fingers, joints started turning blue),

> couldn't be woken up for long

> periods of time, lost 10 more pounds and even told

> me one night that this was " theee

> night " , and Hospice was sure that the next call they

> would get would be from

> me...telling them it was over. Not this week.

>

> It's scary, sad, unnerving, irritating, eerie,

> emotional, physically

> draining, very lonely, and just plain confusing when

> you go through this over and

> over. You have to constantly " readjust " your

> emotions and that is what gets you

> " exhausted " !

>

> I have it down pat now........ha!......the last time

> he was in this

> " Lewy-Coma thing, " we took him off of all drugs

> (mainly because he couldn't swallow),

> except Hytrin to relax the prostate so he can

> urinate. When he goes into these

> " fits " it usually starts out with pain in his

> shoulder/neck area (we were

> giving him Roxanal for the pain) then he would get

> deeply " comatose-Lewy " shortly

> after that. We stopped giving him Roxinal because I

> think it worked

> adversely on him....made him hallucinate,

> nightmares, kept him awake all night,

> aggressive and contrary, and we also stopped the

> Sinemet completely. Now he sleeps

> less, is more coherent, not at all contrary or

> aggressive, nightmares are

> there but have slowed down, and he can answer a

> question now without referring to

> the imaginary dogs outside of the breakfast nook

> window. We give him plain

> old Tylenol Extra Strength for the pain in his

> shoulders and he seems to be

> comfortable with that.

>

> Yesterday, he started the " Coma-Lewy " thing

> again....shoulder pain, staring,

> can't get up, etc....but.....he is still coherent

> and not one bit aggressive.

> His blood pressure has gone up and down, he says he

> feels " not so good, " but

> at least he can communicate better than before, with

> all those meds, and is

> fully aware of what is going on around him.

>

> He is at the " end stage " of this insidious disease

> and from what I have read

> from the messages posted on this board in the past

> several days, I do agree

> with....sorry don't know who it was (maybe

> )......but they said that meds

> don't really work after a while, especially at the

> end stage. And as far as

> " funeral arrangements " .....make them now and get it

> over with while YOU are

> still coherent. The roller coaster ride WILL come to

> an end and it's an awful

> thing to go through after the fact, and it's true,

> you don't have time to

> properly mourn because you are so busy " taking care

> of things. " I made plans

> yesterday and the chore is done. Now, I will take

> each day as it comes and not have

> to worry about " what to do " when the time comes.

> Good grief....I sound like a

> commercial.

>

> Dena, you are certainly not alone and I send you

> Peace to find the calmness

> within as you ride the coaster. Lots of hugs and

> prayers to everyone on this

> board. I am certain I will not be able to respond

> to all the messages that I

> would like to because of my absence these past few

> days....but I want everyone

> to know that all messages are " invaluable " to us and

> future Caregivers.

>

> God Bless everyone and may you all have a Peaceful

> weekend! Stevie

>

> P.S....I DID take that ride to San Diego with the

> top down, heater seats on

> high, and Bob Seeger all the way. It was WONDERFUL!

> " Getting away " is

> therapeutic and ever so necessary!