advise given to april with love and hugs, take 2

[Guest guest]

april, i wrote this once but it got lost in cyber space so here goes again,

i want to address several of the issues in your letter, please understand i

have been there and done that and i can honestly relate.

as for the coughing /choking issue, my dad would try to stuff his mouth too

full and would choke/cough, or he would not cut his food in manageable bites and

cough /choke, we had to cut his meals into smaller more manageable biteszie

pieces adn still remind dad to swallow what he had in his mouth first. whe n

you go to restaurant have the cook cut into bitesize pieces for him so he will

eat more manageable size pieces and not be embarrased by having sdomeone cut the

food at the table.

exelon is drug not to reverse the symptoms but to slow down the progression of

the disease. so no changes in him would be good as that means he didnt get

worse.

my dad was on exelon one year before we tried to add namenda as well. the

sinemet made my dad go crazy he called lbd the little man in his head, he said

the little man in his head is talking bad things loudly. so we stopped it after

only 2 doses of 1/2 tablet.

i pray all went well for the pacemaker surgery today,

now, on to the biggie. april the hardeest thing in life to do is let teh past

go, i didnt realize how much i let the negative past affect my life and

therefore effect my health as well. i had alot of pent up

anger/hurt/frustration towards my family for years and years. i finally went

into therapy and through a great therapist i realzied how much i let the

negaitives of the past rule my life. my therapist had my write letters to each

person that i was ujpset with , tell them why i was upset, how it has

affectied/ruined my life and then i brought them to her. she held on to them

for several weeks, then she gave a couple of them back to me, to read again, and

then seh asked if i wanted to really mail that letter or put it aside again,

of all the letters, i only mailed one and that was to my grandmother (my dads

mom) it caused a major family ruccous until one day she read it and it clicked

inside of her and we were able to get passed it. several sessions later we

reread all teh remaining letters, adn i had a choice mail htem or file them,

but i had to agree that now i have let out all teh frustratoin in the letter

that i had to change my own attitude. that in time their attitudes may actually

change to reflect mine. but the thing was i was now in charge of my own life,

not letting anyone else run it for me, in time most people came positively

reacted to my new attifude towards them and as i became more positive my life

became more rewarding and less challenging. of course my health is still

really bad, but is not reacting because of negativity but to actual health

issues.

so as for your brother, you konw he has never called in the past, and dont

expect him to change, just give up on changing him you cant, instead change

yourself, you call, and keep calling. maybe he will change but maybe he wont,

but it isnt worth putting up a wall between the two of you becuase he doesnt

call. is it really that important who calls who, as long as you are aware of

what is going on??you have to forgive your brother for his shortcomings and you

have to forgive yourself, and then agree to yourself that your dad is mre

important than the issues that are going on now. not easy belive me i know, but

also i know that if you can really do it, or really make an effort to do it, YOU

WILL FEEL MUCH BETTER. hugs, sharonm

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

---- aswest1021 wrote:

Well, looks like my dad will be getting the pacemaker sometime this

morning. I just hope and pray everything goes smoothly. My sister-

in-law said my dad can't even get out of the hospital bed on his own

now. I'm worried that he's too frail to fare well from the

surgery. I'll continue to keep you all informed.

As to the reason why he isn't going to move in with me, even

temporarily, is because we live in Atlanta, GA. We are 11 hours

from where my dad has spent his entire life and he has no intentions

of ever leaving there. We've tried on numerous occasions to get him

to move in with us and he always says to me, " Old people and young

people aren't meant to live together. " I think the basis for how he

feels goes back to when he was growing up. His grandfather, who had

Alzheimer's, moved in with him and his family and my father always

resented that. He has never wanted to become a " burden " on anyone.

So, moving here to GA. isn't even an option, though I would welcome

it. Secondly, let me also make clear that I have gone far and

beyond to do whatever I could do to take care of my parents for many

years. My brother, who now lives 15 miles from my dad, was absent

from my parents' lives for a long time. He would call them only

once in a blue moon and would never see them at Christmastime, yet

he would have my sister-in-law's parents there during the holiday

each and every year. My parents spent every Christmas with my family

and I for the past 12 years. My mom would even comment to me how my

brother hurt her feelings by not keeping in touch. So, I did

whatever I could to pick up the slack for him and then some. Even

though he's doing a lot more than I can right now to take care of

our dad, for which I'm very thankful, please don't get the

impression that I've washed my hands of everything. I call my dad

everyday. My brother doesn't even call me to update me on what's

going on with him; my sister-in-law calls. I get the feeling that

my brother thinks he " does it all " and that couldn't be farther from

the truth. I have always been very plugged into my parents' lives

and I don't intend to stop now.

On to another note. My FIL saw another neurologist this morning at

Emory. His name is Lah, M.D. He did some sort of pencil and

paper test on my FIL and I don't think it went very well. Dr. Lah

said my FIL is very atypical Parkinson's and Lewy Body. The plan is

to take my FIL off the Sinemet and the Exelon because neither seem

to be doing him any good. He's also been put on Lexapro. Have any

of you had good results from that? Have any of your LO's been told

that they are atypical? We went to lunch after the appointment and

my FIL started coughing uncontrollably. It scared me half to

death! His face turned bright red and it seemed he was gasping for

air. My MIL said he's done that before. What could be causing

that? Is it a sign of worse things to come? I truly think he's

gotten worse since he was here 3 weeks ago. He'll be back on the

24th to see Dr. Factor at Emory. We'll see what we're told then.

My MIL is wondering why my FIL can't take Sinemet CR three times a

day in place of regular Sinemet. The nurse said she wouldn't

recommend that. DOes anyone happen to know why that wouldn't be a

good idea?

Thanks,

April