Update on Ray

May 1, 2008

Leona,

Sure sounds like Ray got straighten around as soon as they got him back on what

works. Don't know why it is so hard to listen to the family who knows what is

going on.

I would get some ointment or something for his itching as soon as you can.. That

has got to be really hard to handle for our LOs as they can't tell anyone what

the problem is. I would have thought the staff would have noticed and applied

something for relief.

Hugs, to you for keeping on, keeping on.

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Update on Ray

Ray has been in an almost constant state of agitation (panic attacks or

whatever one might term them) for 3 days. When he first got placed in the

hospital, for 3 nights he slept about 10-12 hours for no apparent reason.

Right off the bat, the hospital neurologist dropped his 12.5 mg dose of

afternoon Seroquel and then shortly after that, decided that he might only

need 1/2 of his regular dose of Sinemet 3 X a day. He was getting 25/250

each time to begin with. I pointed out to everyone who would listen that I

thought the Seroquel was needed in the afternoon to help keep him from a

panic attack before dark--to no avail of course. I even had Ray's meds list

posted on the wall along with the LBD Warning sheet. Anyway--these last

three days have been terrible for him and for my daughters and I. He has

gotten very little sleep and consequently neither has whomever stays with

him. The nursing staff asked us to continue helping if we could after Ray's

episode on Sunday which ended with security guards subduing him. Finally,

his regular neurologist (whom I had emailed) came in and looked over all the

charts and made the recommendation that the home doses of the medicines be

reinstituted. When I left the hospital this afternoon, Ray was sleeping. I

just called to check and he was back at sleep after eating a bit, taking his

pills and using the bathroom. My son was there to care for him this evening

and my sister is staying with him tonight. Hopefully, we can get him back

to a fairly steady pattern and keep him there. I am sure he knows enough to

know that this is a change and he doesn't like it. Who knows maybe he would

just like to go outdoors for a walk. I am posting another message as a

response to the " Here's a new one " thread about genetalia itching or

burning. Thanks all for listening. I know I would not be as much as an

advocate for Ray as I am if I never had found this list.

Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try.

There's a magical tie to the land of our home, which the heart cannot

break, though the footsteps may roam. Eliza Cook

May 4, 2008

Thank you to all of you who have emailed messages of support. I get lots of

support outside this list but this is support I get when everyone goes home

and it is just me here at home alone. Thanks.

I was at the nursing home with Ray yesterday through most of the afternoon

and into the evening. They had a musician/singer in at 7 pm with his Kareoke

machine and guitar in the lounge so I took Ray and we went down for it. Most

of the others there were in wheel chairs enjoying the music. Lots of good

old tunes were played and when he started an Elvis R & R tune, Ray's feet

and hands were keeping time. He got up and started dancing with me. He

really enjoyed it. Then later they played some boogey-woogey and we got up

and danced to those. The Rec therapy lady took our picture and it was a

great time. He even smiled a few times which is unusual for him. Good

memory for me. I hope they can get him involved in other activities that

will be occuring.

I bought him a new flat screen TV and combo DVD and VHS player. My daughter

was there (good thing) and set it all up for him. She took her two little

ones in to visit. He always enjoys that. The oldest one will be 3 this

summer and when we were at home, it was funny she knew things were different

for grandpa and she would try to help him sit or stand and when he went out

the door she would come crying " papa out " " papa out " . Nobody ever said papa

couldn't go out but she knew something was different. I think the new

player will play CDs on the DVD player so I have to pack some old country to

take down today when my son and I go down.

Apparently last night he was not as quiet, he was up and down but they said

not agitated or violent at all. Thank God.

For me--two good nights of sleep. How much that helps. My oldest daughter

and granddaughter went to church with me after a breakfast out this morning.

That was very nice since they don't go often. Thanks again, all

caregivers--we are praying for all of you every night. Love, Leona

Leona: Caregiver for husband Ray, age 67, diagnosed 2/04 with Parkinson's

Disease. Changed doctors, diagnosed 6/06 with LBD. Almost continual downhill

slide no matter what drugs we try.

There's a magical tie to the land of our home, which the heart cannot

break, though the footsteps may roam. Eliza Cook

May 4, 2008

Oh, Leona, the mental picture of the two of you dancing brought happy tears

to my eyes. Gotta treasure those moments when we get 'em!

Gladys

-- Re: Update on Ray