Re: My FIL Arrived Yesterday...UPDATE/Imogene

[Guest guest]

Imogene,

You are more than welcome. I was having one of those mornings when

I just needed to vent a bit. This whole LBD thing has been so very

tragic on many different levels. My FIL is the shell of the man he

used to be. My MIL is very short on patience anymore and is a

broken-down woman. My BIL is completely stressed out; he used to be

so laid back about everything. My husband has become an absolute

worry wart about his father's condition. What's more is that

everything is completely out of our hands. There is nothing we can

do to change the course that's before us. There comes a point in

time when you have to accept what is and try to move on from there.

That's the point we're at now.

My FIL didn't do too well with his testing today. It was cut short

by 2 1/2 hours because the psychologist felt he could do no more.

He asked for my MIL to come in the room with him, which she finally

did. Then, he wanted his sons in there with him, but I guess my MIL

refused. My MIL tried to prep him on the way to the testing about

the year. She asked him what year it is and he

replied, " 1976, '75, '74. " He had no idea. According to my MIL, he

had a real difficult time with the questions the psychologist

asked. I guess we'll learn the results next Tues., not that it

makes any difference at this point.

I'll continue to keep you all posted. Take care!

April

>

>

> I appreciate this letter, April. You have laid out in detail the

things that

> go wrong in many areas. It is a teaching tool for me. I have no

answers, for

> which I am sorry.

> But, thanks for letting me see more of the other side of the coin

as it

> turns over in later LBD.

>

>

> Imogene

> Caregiver for my True Texas Gentleman husband of 35 years. He has

LBD with

> Parkinsonism.

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> In a message dated 7/6/2006 8:52:28 AM Central Daylight Time,

> aswest1021@... writes:

>

> My in-laws got here yesterday for my FIL's neuropsych. testing

this

> morning. I have to say without a doubt that he's gotten worse

since

> they were here about 8 weeks ago. He wears an adult bid all the

> time because he drools so badly. He was having a terrible time

with

> dyskinesias; his eyes stayed tightly shut most of the time. I

also

> observed that his tongue had a tremor as it was protruding out of

> his mouth. According to my MIL, his asthma has worsened in the

last

> several weeks. He's had asthma for many years and has always

kept

> it under control. His family physician just put him on a

treatment

> that is motorized and he has to inhale a medication. I can't

> remember what it's called. Anyhow, he isn't capable of breathing

> the medication into his lungs and holding it in for a few counts,

so

> my MIL actually has to hold his mouth closed for him. She

doesn't

> think he's deriving any benefit from it because he isn't doing

the

> treatment correctly. Another thing I observed when my MIL

brought

> it to my attention is that my FIL repeats nearly everything he

> says. For example, this morning, he had some coffee and he

> said, " This is good coffee, good coffee, good coffee. " He did

that

> numerous times. Also, last night, he " wrote " a list of things he

> wanted to talk to the doctor about. I took a look at it and it

was

> illegible. If I hadn't known the sorts of things he was

frustrated

> about, I wouldn't have been able to tell what he'd written.

Oddly

> enough, he not only speaks in repetition, but he does so in

writing,

> as well. He wrote down the word 'constipation' 3 times, 'asthma'

2

> times, 'slipping' 3 times, and 'drooling' 4 times. It's the

> strangest thing I've ever seen. Has anyone ever dealt with

> something like this?

>

> My BIL told me last night that he can get my FIL situated in bed

> with a walkie talkie by his right hand and his inhaler for asthma

by

> his left hand. He said my FIL will call him on the walkie

talkie.

> When my BIL goes to see what he needs, my FIL tells him that he

> can't reach his inhaler, which is only about 3 or 4 inches from

his

> hand. How can he pick up and use the walkie talkie just fine,

but

> can't do so with the inhaler? He is also able to call my BIL on

the

> phone at times when he needs him. I know that frustrates my BIL

> beyond belief.

>

> As I wrote before, my FIL, literally, cannot sit still for any

given

> amount of time. My husband helped him to the kitchen table this

> morning and sat him down. Within a few minutes, he told my

husband

> he wanted to move to the other chair, which was right next to

him.

> Then, several minutes later, he said he needed to go to the

> bathroom. When he came out, he rode circles about our kitchen

table

> trying to get out the garage door. He is constantly wanting to

be

> moved from one place to the next. My MIL and BIL have no time to

> rest, at all.

>

> It was very hard, if not impossible, to understand what my FIL

was

> saying. He speaks in a whispered, garbled voice. I had to have

him

> repeat nearly everything he said to me. This has happened in

just

> the past 8 weeks or so. Could the fact that he was taken off

> Sinemet CR when he came here in May for the second opinion have

> anything to do with it?

>

> My MIL actually mentioned something last night about possibly

> placing my FIL in an assisted living facility. In my opinion, he

> needs 'round the clock nursing care. He, literally, can do

nothing

> on his own. My MIL said, also, that she would like for my FIL to

be

> seen by the neurologist every month. She's frustrated with the

one

> he's been seeing in ton because he'll cancel my FIL's

> appointment and resched. it for three months later. Isn't that

> fairly common practice? I don't know why she seems to think the

> neurologist here at Emory will be any different. How often do

your

> LO's get seen by their neurologists? I can't imagine what any

> doctor could do for my FIL on a monthly basis that can't be done

> every three months or so. I think my MIL is just striving for

> that " miracle " cure that doesn't exist.

>

> I know I'm grasping at straws here, but have any of your LO's

> reached the point my FIL is now at and had their symptoms halted

or

> improved by going on a different medication? Are things bound to

> continue to worsen with time? Is there any hope on the horizon?

I

> just don't want to leave any stone unturned.

>

> Sorry for being so long-winded, again, but everytime I'm around

my

> FIL, my breath is taken away by his pronounced decline. Thanks to

> all of you for listening to me time and time again. You are

> lifesavers, believe me!

>

> April

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