Re: Hi All Off Topic/ Donna R

September 29, 2006

Thanks Donna,

It's good to be back with family. LOL

Thanks for telling me about Courage. It's horrible to be without a computer

when you are used to being on it everyday. How is Courage's daughter? I know the

last time I was on, maybe a month ago, she was worried about having

possible MS.

I looked at the clock and I can't believe it is already 4:30PM and I am not at

the nh. I have got to get going. I have been on this computer since 1PM! Hugs,

Jan

Donna Mido wrote:

Jan,

It is so good to hear from you. I am glad you are up and running. Courage is

just having trouble with her computer and it made me think of you and that we

hadn't heard from you in a while.

Sounds like you are better able to care for Jim with some help. I just don't

understand the mentality of nh's. You would think it would be easier to put him

on the toilet than do the rest, but I had the same problem with Mom when she was

in a nh.

Courage will be back on soon,. Her daughter has a computer for her. The ads are

so exciting down south. And it does sound like they will move it out from there

eventually.

Lots of hugs and good to hear from you.

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.

Hi All Off Topic

Hi, I am back online with my new computer finally! I am taking computer classes

in the evening to learn how to use Windows. I had an iMac before.

I am so excited to be back online with you. I finally got tired of running to

the library everyday to read my e-mails and try to respond within the time limit

of the timer on the computer at the library. Then my old computer came back to

life for awhile, a surprise to me and you heard from me, until it crashed and

burned for good. I had 905 e-mails mostly from this group today when I finally

got online again, I should have just stopped the e-mails for the time I was off.

I just deleted them all, so I really have lost time on knowing what is happening

and catching up on the latest news. I am starting from today to keep up with you

all and what is going on.

Jim is doing wonderfully at the nh, but I visit him everyday and am there with

him everynight to put him in bed. When I am there I take over. I don't think he

would be doing as well as he is if I wasn't there everyday. They strap him into

a wheelchair, because he tries to stand up from his chair and they are afraid of

him falling. When they strap him in, they wind a strap around the back of the

chair and tie it around the back of the chair. Because it takes some patience to

unwind it and untie the knots, they don't change him very often and he is

sitting in a wet diaper and sometimes poopy when I get there. When he is poopy,

he complains that his bottom hurts. The first thing I do when I arrive, is put

him on the toilet and change him into dry diapers. I have complained to them to

change him more often or at least put him on the toilet, but I guess it is too

time consuming or they are just too lazy. I usually arrive about 3PM and stay

for his dinner and bedtime and leave

around 9:30PM. I also help him to brush his teeth and floss them at bedtime.

They only brush his teeth when he wakes up in the morning, but not after lunch

or at bedtime. If I am not there to brush his teeth at bedtime, they just get

him dressed for bed and put him in bed. He still has all his teeth and I want to

keep it that way. He had a dentist appointment a few days ago and the dentist

said his teeth looked really good. The ones with no teeth at the nh have their

dentures removed and they can not wear them, because they say the people take

them out and lose them. Jim can still chew food and eat and he eats well, for

which I am so thankful. I still take him out to eat. He has a good appetite. I

took him out a few nights ago for dinner. He ate an entire plate of speghetti

and a salad. Jim has his days of confusion. Somedays, but not often, he thinks I

am another Jan. Most of the time he is so excited to see me and points and says

for everyone to look I am there. He

wonders how I found him and how I knew he was there, even though I am there

everyday. He got another beginning of a pressure sore on his heel. I seem to be

the first to always notice them, before they are too bad. I brought in the

Benzodine and Mylanta mixture everynight and swabbed his heel with it, until it

dried up. It is dried up, but the nurse still puts gauze wrap around it and I

wonder why. I think they should let the air get to it now to heal it. It is not

an open sore anymore, so why the wrap? Why not just a bandaid? Another reason

for me to be there everyday is to have Jim do weight bearing on his feet. The

physical therapist does range of motion with him, but not standing and weight

bearing. He can still stand on his feet, so I can get him into the car. If he

can not stand, I will not be able to get him in the car to take him for rides

and out to eat, so everynight I toilet him and have him do weight bearing on his

feet and a little walking. He tires very fast

walking. He needs assistance to hold the walker while he is walking, so it does

not get way out in front of him. He can make it to the end of his hall, maybe

about 20 ft. and then he tires.

I feel if I was not there to do that, he would be chair and bedridden already.

The man that Jim shares a room with came in at about the same level as Jim and

now is bedridden and has pressure sores often and at times they put him in a

wheelchair, but he can no longer stand or walk. I am trying hard to keep Jim

able to do as much as he can, but I know it would not happen if I was not there.

They also give Jim finger foods, so he forgets how to use a fork if I am not

there to constantly make sure he does with his vegetables, so I can take him out

and he eats with a fork. He knows how if he is reminded. I don't want him to

lose that skill if I can help it, because he loves speghetti. He forgot how to

suck through a straw also, so I have insisted they give him a straw with his

drink. I don't know why that is important to me, but it is. Maybe because it

would be another skill lost. For as long as I can keep these skills going I

will. I know there will be a time coming where I can no longer take him out or

that he doesn't feed himself or that he will be able to eat solid foods, so I am

holding onto all that I can with him for as long as I can.

In 2000, Jim started showing all the symptoms of LBD and in 2003 Jim's

neurologist clinically diagnosed him with LBD. I am thankful that Jim is still

capable of standing with help and that I am still able to take him out. I think

he is very stubborn too and that helps a little that he tries so hard to keep

going. It is also why it is so hard to keep him safe. Although, I think if I

were not at the nh everyday, Jim would not be in the shape he is in, he would be

worse. I do think it has been the best to have others sharing in taking care of

Jim and that the entire burden is not on me any longer and my health is feeling

so much better now that I can sleep through an entire night and not be stressed

out with Jim's needs.

I heard from Carol Caughran that Dr. Phil had advertisements of LBD on the TV

stations in Florida and other parts back East. That is so exciting to hear. I

hope they reach California too sometime soon. Take care and you will now be

hearing from me more often, since I am now offically online again. YIPEEEEEE!

Jan Colello

---------------------------------

Stay in the know. Pulse on the new Yahoo.com. Check it out.

September 29, 2006

Boy, 's stuff was so long ago, but if I remember correctly, she is ok?

Can't remember if she was misdiagnosised or what.

You can write Courage directly. She can't get email through the group. I am

sure she would be happy to hear from you. I know she said her contract is up

with the web at the end of the month. I think that is Sunday) And she will get

a new server. If I get a new address, I will send it. But she has been

answering my email.