RE: Greetings from the new kid....

April 16, 2004

Hi KD,

I'm not going to try to guess what KD represents, I am a truely bad

guesser. Welcome to the group. Often with new people we ask about

general information like - how long since he was Dxd? What type of meds?

Where do you live? We have people from many places here in the US and

in other countries. We have loved ones who are high functioning to

those near the end of the journey. Please fell free to ask questions,

share experiences/frustrations/joys/tears. Everyone else here does.

It is a strange disease. Each LO seems to have his/her own set of

symptoms. Yet there is tremendous overlap in the problems each

caretaker faces.

My mom has been Dxd in the last year. She lives in Wisconsin and I

live in a land suburb of D.C. Like you, I am not a primary caregiver.

ome of the advice you will get is to make arrangements for the legal/

financial issues which will arise later. I.E. wills, POA - both legal

and health.

Sorry you have reason to be here. Glad you found us.

THeresa (in D.C. with the two puppies)

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

Greetings everyone:

Just a hello here, I've just joined this group and was

finally 'approved' to participate today!

My 65 year old father was just recently diagnosed with this disease,

which until now I had never heard of. I'm not his primary caregiver,

so I know I have it a lot better than most of you do, but it still

has difficult moments as you can well imagine. As the only child

he's got nearby, I seem to be the 'magic bullet' at times. His wife

calls me when things start getting out of hand - as in, he's

unreasonable and she can't talk him out of it. However, he started a

new medication about three weeks ago and he's been good -

I haven't gotten a 'help me!' phone call for about a week or so.

Here's keeping my fingers crossed that it will continue to help!

It's such a strange disease, isn't it? For example a recent episode

had Dad thinking that he was in a trailer and didn't know why. His

wife called me and I talked to him, but he was really just out to

lunch. As the conversation progressed, he was in a railcar and was

supposed to be working, but didn't know what he was supposed to be

doing. Another time, he was thinking he had to leave town, because

the people who owned the apartment he lives in were just letting him

stay there temporarily, and he figured they were soon going to

decide they had no room for him so he was going to have to leave.

I've realized there's no point in trying to tell him that he isn't

in a railcar, or that the apartment is his, or that his friend Dave

doesn't exist, or that there were no children running around the

apartment awhile ago, so therefore you don't know where they went.

You just go along with the delusions, maybe try to change the

subject, and hope for the best.

Thanks for listening. I'll be lurking.

KD

April 16, 2004

Hello again!

Well, to answer some of your questions:

KD does not stand for Kraft Dinner. I just got married last

year, and KD are my new initials. I don't know about in the US, but

here in Canada there are Kraft Dinner commercials with the

tagline, " Gotta be KD! " So I've sort of adopted that as my own,

until Kraft decides to sue me.

Dad's problems first cropped up somewhere around last May, when he

had a pacemaker put in. In the weeks leading up to that, they

fiddled with his medications quite a bit (he's been on heart meds,

blood pressure, chloresterol, etc. for years), which I have a

feeling had something to do with all this. So the pacemaker was put

in, and he reacted badly to some of the painkillers and such.

Anything related to Valium has the opposite effect on him, so he did

flip out a few times while they figured that out. Things sort of

progressed from there.

In recent months, he's started having hallucinations and such. Not

that he points to an empty chair and sees someone (at least not to

my knowledge), but seems to remember that someone WAS there. He'll

come back into the room and ask where all the children and everybody

went, or come out of his bedroom asking why all these people are in

his bed. A few times he's asked his wife where Jane went (jane being

his wife's name). When she says she's right there, he says no not

you, the other Jane.

Overall he's fairly happy most of the time, but he does

have 'spells' of unreasonable behavior, such as being in the railcar

or wanting to leave town for reasons that come only from his head.

It's sad though, he only retired two years ago and was fine then.

What a way to live out your retirement.

We live in Halifax, Nova Scotia, in Atlantic Canada. He and his wife

live only a few blocks away.

Until this diagnosis and researching what it is, I guess I always

figured this was a temporary situation and would get better with

time. Now that i know this is not so, I know it's probably just a

matter of time before he's not able to make his own decisions. So I

looked into the power of attorney thing, and it's already in place.

So that's not really a problem. There really aren't finances to be

fighting over or anything, so I'm not really concerned about that.

He doesn't drive anymore, a good thing I think. He's given it up

voluntarily, I think because he's just scared that he's going to end

up somewhere and not recognize anyone. Even when i've gone to the

grocery store with him, he doesn't tend to let me out of his sight.

He's very dependant on his wife that way, although he can still take

care of his own personal needs, gets dressed himself, still does the

dishes, etc. Just doesn't tend to go anywhere alone, and he isn't

left alone. They do have a 'sitter' who comes in several times a

week to give his wife a break.

So, that's my story in a nutshell. I'm envious of your puppies - how

I would love to have one! But right now I have two senior citizen

cats who wouldn't deal well with a canine, so it will probably have

to wait a few years. How old are your pups?

Bye for now!

KD

> Hi KD,

>

> I'm not going to try to guess what KD represents, I am a truely

bad

> guesser. Welcome to the group. Often with new people we ask about

> general information like - how long since he was Dxd? What type of

meds?

> Where do you live? We have people from many places here in the US

and

> in other countries. We have loved ones who are high functioning to

> those near the end of the journey. Please fell free to ask

questions,

> share experiences/frustrations/joys/tears. Everyone else here

does.

>

> It is a strange disease. Each LO seems to have his/her own set of

> symptoms. Yet there is tremendous overlap in the problems each

> caretaker faces.

>

> My mom has been Dxd in the last year. She lives in Wisconsin and

I

> live in a land suburb of D.C. Like you, I am not a primary

caregiver.

> ome of the advice you will get is to make arrangements for the

legal/

> financial issues which will arise later. I.E. wills, POA - both

legal

> and health.

>

> Sorry you have reason to be here. Glad you found us.

>

> THeresa (in D.C. with the two puppies)

>

> -------------------------------------------

>

> Greetings everyone:

>

> Just a hello here, I've just joined this group and was

> finally 'approved' to participate today!

>

> My 65 year old father was just recently diagnosed with this

disease,

> which until now I had never heard of. I'm not his primary

caregiver,

> so I know I have it a lot better than most of you do, but it still

> has difficult moments as you can well imagine. As the only child

> he's got nearby, I seem to be the 'magic bullet' at times. His wife

> calls me when things start getting out of hand - as in, he's

> unreasonable and she can't talk him out of it. However, he started

a

> new medication about three weeks ago and he's been good -

> I haven't gotten a 'help me!' phone call for about a week or so.

> Here's keeping my fingers crossed that it will continue to help!

>

> It's such a strange disease, isn't it? For example a recent episode

> had Dad thinking that he was in a trailer and didn't know why. His

> wife called me and I talked to him, but he was really just out to

> lunch. As the conversation progressed, he was in a railcar and was

> supposed to be working, but didn't know what he was supposed to be

> doing. Another time, he was thinking he had to leave town, because

> the people who owned the apartment he lives in were just letting

him

> stay there temporarily, and he figured they were soon going to

> decide they had no room for him so he was going to have to leave.

>

> I've realized there's no point in trying to tell him that he isn't

> in a railcar, or that the apartment is his, or that his friend Dave

> doesn't exist, or that there were no children running around the

> apartment awhile ago, so therefore you don't know where they went.

> You just go along with the delusions, maybe try to change the

> subject, and hope for the best.

>

> Thanks for listening. I'll be lurking.

>

> KD

April 17, 2004

KD-

This all seems so familiar: