Re: Question about Prednisone

[Guest guest]

Leona,

I don't know about a lot of what you talked about, but what struck me is that

you aren't being informed. You might need to go to someone with authority and

get some clarifying. You are still his cger and I would assume have DPOA or

some authority. So you talk in his stead. They have an obligation to consult

you or he has no voice.

I spent some time fighting with Mom's nh and if they hadn't started to listen to

me, I don't know what I would have done. I just keep at them until they did do

what I wanted. You should have some copies of papers you signed when he went

in. Go back and read and see what your rights are there. It takes a bit to

find, but it is there.

They shouldn't be feeding him anything except what you tell them to feed him.

And I would use his weight loss as an example. They don't like it when they

lose weight because that is one thing that can be directly validated. And I know

it is one of the things the MD checks regularly. Dumb, but he/she does think

for some reason if weight is good, every thing is good. (Not very true either,)

Hope you get some things straight. You have a right to call a meeting and if

they don't include you, I would do it. They don't like meetings. Then next

time they will include you instead of having to do a second one.

Hugs

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.

Question about Prednisone

Sorry I have been afield for about 3 weeks and not caught many posts from

the group. I did catch up a little and see a nice gathering took place and

glad for that.

My question: I learned from the nursing home Doctor's notes which we

carried to the Neurologist appointment for Ray, that he had been given

Prednisone (small dose) and the reason being to " improve his appetite " . My

sister has to be on Prednisone from time to time for Poly Mialga Rheumatica

and I think it is a dreadful medication. Nobody bothered to inform me nor

have I been invited to any of the most recent care meetings at the home.

Needless to say, I am unhappy. Has anyone any opinions on that use for

Prednisone with an LBD patient?

Ray is suffering some breakdown of tissue on his bottom. He has one open

sore, the size of the pad of my thumb and two more spots ready to break

open. This, I believe, is from him spending too much time sitting in wet

clothing. They are treating it with a medication twice a day and balmex in

between. He still spends most of the day sitting upright in a reclining

wheel chair with , again in my opinion, not enough padding and too much

plastic. The Doctor's solution for this is to insert a catheter which I am

opposing. If they would toilet or change him every two hours, that would

take care of it.

The other real issue we are having is with food. They have evaluated him

(and not notified me) that he is a hazard for choking and has been placed on

a " mashed diet " . All the main items in his menu are pasty conglomerations

of food. It is not very appealing and Ray does not eat it well. He has lost

25-30 pounds since being placed there on May 2nd. He will usually eat the

pudding, ice cream etc. They see he eats his breakfasts good. They also give

him lots of the fortified shakes--something like ensure. When we had him out

to the Doctor's, we stopped for dinner and Ray enjoyed most of a huge piece

of liver and onions. He had no trouble eating it. I have asked for another

eval. In the meantime, they will allow me to sign a waiver so that I can

feed him regular food when I am there but staff will continue the mashed.

On a brighter note, Ray still enjoys the music. We were down listening to a

visiting musician today and when he started playing " I Walk the Line " , Ray

said " ny Cash " and smiled. Diamonds!! Let me know if anyone has any

thoughts on these things going on with my poor guy. Thanks, 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. 5/2/08 Ray was placed in Sunrise Nursing

Home in Oswego, NY, 45 minutes from home. So far, so good! Hardest thing I

have ever done in my life, however.