Re: Debbie and Donna

[Guest guest]

please discontinue

thank you

[Guest guest]

Cheryl, I haven't been able to respond to messages on the board lately, but

have been reading them all and crying, questioning, and really hurting for

all of you with the question as whether or not to place your LO in a NH.

Jack is still going down so rapidly, but he is safe, cared for, and most of

all loved and cared for with such love and understanding. He has gone thru

the anger and cursing, the fighting(even before he went into the home), the

inability to dress, feed, or even know where he is from day to day, and now

having extreme trouble walking. He leans over so from the waist toward the

right, that he often runs into the wall. I know the hurt and guilt of placing

him, but I also know that he would probably not even be around at all if I

had not. He would have wondered off, or fallen, or just not eaten while I

was at work. I still cry when I leave him, but at least he is there for me

to visit and if he had stayed at home, I am convinced that he wouldn't be at

this point. I read and cry with the anguish of this choice you all are

facing, and have the most respect and awe for you that can still have your

LO's with you. You are all doing such yomen work and I wish you all well, but

there will come a time in the distant future I hope, that you will need to

let go, for their sake. Please allow your heart to accept this so that when

it occures you will not be totally torn apart as I was. I love you all and

pray for you everyday. Keep Jack and me in yours too please..Carol

[Guest guest]

Carol,

Thank you so much for your note!! Your husband is much further along than

mine, but the words you wrote tell us where the rest of us are headed.

Thanks so much for the forewarning. I certainly know that your decision to

place was a diffiult one, but also the right one. I'm sorry to see how much

Jack has " degressed. "

But Carol, how are YOU??? You were having such a difficult time with several

dx of your own. I think of you so often and hope that you are coping

alright. Goodness knows you have had more than enough!

It was good to hear from you again and I hope you won't stay away so long.

Big hug, Cheryl

[Guest guest]

Carol, Having read my reply to you it reads a lot more " upbeat lalala " than I

felt. In no way was I trying to make light of what you are going through.

You have both had a LOT too much for a long time. I was just glad to see

that you are back, if even for a brief time. I am very, very sorry for the

way thigs have deteriorated for you this past year. Cheryl

[Guest guest]

Cheryl

Thank you for the comforting words concerning our LO's and nursing

homes. Many times, especially when the care hasn't been adequate, I

feel an overwhelming sense of guilt..........if only I had......

Reality is I couldn't have move my dad in with me, yet often I take

myself to a place of wondering how his life could have been different.

Today when I visited him, he had been very angry, frustrated and

unapproachable. There were staff members taking care of my dad that he

was very unfamiliar with, I told them that is part of why dad is

agitated. Consistency is very important to him and his care. Of course

in the midst of this I asked if he had taken his morning meds.,

surprise, no he hadn't. This information was not offered ahead of time

to me. I had to figure it out, and boy was I irritated. I demanded

they get his meds. right then, and asked dad if he would take them for

me.....again, surprise, he did without a fight. Then I decided to clean

him up and shave his newly growing beard that dad and I had not planned

on him growing. The staff was ever so willing to give me all the needed

equipment so I could shave my dad, of which took about 45 minutes

because the facial hair was so long.......ARGHHHHHHHH. Also, I found

that his toast and bread is not getting cut up from the kitchen. Was

told during the last care plan meeting that since dad chokes easily and

stuffs all food in his mouth, they would make sure the bread and toast

was cut into 1/8 pieces......found out today that the unit staff does

that when they receive dads plate. Two of the staff members replied,

yes, but if regular staff isn't back here, and has no idea this is to be

done.......well, get the picture? Dad could choke. I used to think I

just had high expectations, but have re-evaluated my thinking and now

know it is common sense and caring for a human being. I have no problem

speaking my mind where my dad is concerned. I always let the staff know

that, " He may not be your dad, but he is my dad, and that is good enough

for me. "

Sandie

Des Moines, IA

[Guest guest]

Carol

So sorry that your heart hurts. You too, have made the right decision

for your situation. We are all in this disease, yet still have such

different lives and situations. Keep in mind that what works for one,

may not work for another, but that does not mean one of us is right or

the other is wrong. I appreciate that no one is judgmental in here,

just incredibly supportive. I don't seem to have a lot of that in my

life concerning my dad and his LBD. Thanks to all! So Carol, know that

I am not judging you for your decision, and that you will be in my

prayers. May you find peace in that!

Sandie

Des Moines, IA

[Guest guest]

In a message dated 4/12/02 11:11:03 PM Central Daylight Time,

sanclown@... writes:

> Today when I visited him, he had been very angry, frustrated and

> unapproachable. There were staff members taking care of my dad that he was

> very unfamiliar with, I told them that is part of why dad is agitated.

> Consistency is very important to him and his care. Of course in the midst

> of this I asked if he had taken his morning meds., surprise, no he hadn't.

> This information was not offered ahead of time

> to me. I had to figure it out, and boy was I irritated.

These are some of the things that worry me, Sandie. Familiarity is

especially important to LBD patients. The turnover of help, not just from

week-day to week-end shifts, concerns me, too. And THEN there is the high

turnover that accompanies any service industry in this society. There

appears to be inadequate communication intra-staff-wise. Not enough NH

residents are as fortunate as your dad to have someone looking out for him.

Good for you that you keep staff reminded that someone recognizes and

respects and loves your dad. There is no more formidable foe for those who

would be negligent!

Cheryl LL

[Guest guest]

Cheryl

Thank you for your kind words of encouragement. It is very true that

there is a huge turn over rate in nursing home staff. Each time I start

from the beginning of the story and end with " call me, any time of the

day or night " if there are any problems. I truly hope all is well with

you!!!!!

Sandie

Des Moines, IA