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Medical Forum / Diseases and Disorders / Alzheimer's / April 2005

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GEEEZ I am sooooooo sorry.....

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Boydette - 15 Apr 2005 01:20 GMT
my continuing hell is irritating yall....

I thought this was a support group for people with LOs with
dementia...so how can anyone who is dealing with is tell someone else
its a black and white issue....I dont get it...it IS NEVER Gonna be over
til they are DEAD....I read yalls stories and I would never say well
JUST BLOW THEM OFF...that is cruel and IMPOSSIBLE unless you are a
brainless heartless selfish a.s#%%...

Thanks to Evelyn Karen and Dennis and any others who tried to give me
some PRACTICAL advice....I guess thats why all those old people in the
home are walking around like blithering idiots crying and carrying
on....they have kids like YOU who say....LET THEM GO and IGNORE....half
the time I will go up and hug one of them and talk to them cause the
staff is totally ignoring them...sometimes all they want is some human
contact....sheeeesh
Karen - 15 Apr 2005 05:10 GMT
Boydette, I'm not the least ashamed to say my Dad had the right to screw up
his life, but he didn't have the right to screw up mine.  We take good care
of my Mom and we take good care of my MIL(even though she wasn't a pleasant
person).  But just because you contribute genetic material to create a child
doesn't mean that child is your possession to do with as you please.  It
also doesn't mean the child _owes_ you anything at all.

You have to be able to take care of yourself before you can take care of
someone else and that includes being able to realize when a relationship is
corrosive to your well being.  The relationship you describe is abusive.
The relationship I had with my Dad was abusive and I reached a point where I
realized that the only person that gave him the right to treat me that way
was me.  And I was the only one that could stop it.  And no, I didn't feel
obligated to jump to his help decades later when the natural result of his
lifestyle was taking it's toll.  He was a stranger.  If you're not at that
point, treat the free advice as worth what you paid for it.

If you are still getting something healthy from your Mom's situation, by all
means -- hang in there.  Maybe you only post when your frustrated and no one
else knows about the good times.  From reading your posts, it doesn't sound
like that's the case.  If your sis doesn't think you are doing your share
ask her for something you can do for her while she'd doing something for
your Mom.  Family is all about trade-offs.  I would suggest that you ask APS
to reevaluate your Mom and if you get the same wench, try talking to her
supervisor.  We knew there was a brewing problem with my MIL for years, but
we couldn't do anything about it until it reached a critical point.  But
trying to solve a problem you have no control over and can not influence is
like trying to get over a brick wall by hitting it with your head until it
falls down.  Not many people's head is hard enough to solve the brick wall.

Free advice is worth what you pay for it.  Take what you can use and leave
the rest.

Karen

> my continuing hell is irritating yall....
>
[quoted text clipped - 12 lines]
> staff is totally ignoring them...sometimes all they want is some human
> contact....sheeeesh
Andrew Callahan - 15 Apr 2005 15:24 GMT
I have been participating in an e-seminar for the past few days and one of
the things that came up there was the difference between on-line support
groups and virtual support groups.  Among the differences most noted were
obviously the lack of physical presence in the virtual groups, a reliance to
a far greater extent to the "words" used by the participants, and sometimes
a greater difficulty for participants who are at different stages to
communicate effectively with one another.

I really suspect that no one here who has offered what Boydette sees as "cut
and dried" solutions was trying to be harsh (to Boydette), but another of
the things mentioned in the e-seminar is a tendency among online groups to
have members who tire quickly of covering the same material over and over
and over again.  Each of us as we progress through stages with our loved
ones need to express our frustrations and concerns, etc. and in a medium
(such as this) where the complexity of communication is so limited to just
words on a screen, when others read our frustrations and concerns, it can
seem like tiresome, repetitive, griping.

In an in-person support group, however, where facial expressions, volume,
tone, eye contact, nervous gestures, etc. are there, the communication is
richer.  Usually the person expressing frustration will experience head
nods, eye contact, smiles, a pat on the shoulder, etc. and know that they
are being listened to, heard, and understood.  Frequently they will need to
do less "venting" than someone in an online group, because the immediate
feedback puts them at ease, and is an immediate comfort.

This format, however, lacks immediacy, so we will share longer, more complex
feelings, before receiving any feedback at all.

In a physical presence we can often tell if the person speaking is
frightened, confused, angry, unhappy, sarcastic, etc.  Tone of voice,
gestures, movements, eye contact, etc. help us figure that out.  Here, all
we have to work with are the words.  Often the words we read sound angry,
but if the person writing them to us was speaking them to us, we might
realize they are frightened or confused, not angry.

Support groups (both online and in person) are meant to be personal.
Comments here are taken personally.  I think we need to give some greater
recognition to the limitations of the medium we are using, and rather than
assuming we fully understand someone else's post (especially when it seems
emotion-laden or critical), we might sometimes follow up with a question,
asking, "Do you mean that . . . ." or "How do you deal with . . . ." or
perhaps even "How can we help you?"

Signature

Andrew D. Callahan, Owner
Deadlines Typing Service
Anytype Dot Com Typing and Transcription Service
http://www.anytype.com

> my continuing hell is irritating yall....
>
[quoted text clipped - 12 lines]
> staff is totally ignoring them...sometimes all they want is some human
> contact....sheeeesh
Evelyn Ruut - 15 Apr 2005 17:28 GMT
>I have been participating in an e-seminar for the past few days and one of
>the things that came up there was the difference between on-line support
[quoted text clipped - 39 lines]
> asking, "Do you mean that . . . ." or "How do you deal with . . . ." or
> perhaps even "How can we help you?"

Andrew you have given definition to something I have long felt about usenet
communications.  On a newsgroup, if something can possibly be misunderstood,
it will be.

I know that Boydette loves her parents, such as they are, but their failings
and problems are frustrating and difficult to deal with for her.   Having
been in a similar but different situation for many years I do understand
what she feels (I think).   It can be absolutely maddening, but that doesn't
mean you don't love them.  If she didn't love them, she wouldn't care a
whit.... and she obviously does care a lot.

I belonged to a real in person support group here where I live, as well as
participated in this newsgroup for the entire journey we went through with
my mother in law, and I am still here.

I have dropped out of the in-person group due to time constraints, but I
still find it easy to look in here, since nobody knows if I am hanging out
in sweatpants with my hair all ratty, and wearing no makeup.  There is a
certain kind of anonymity, as well as the ability to overlook irritating
people if you want to do so.   That can be a real benefit.

In my in-person support group there was an otherwise very nice woman who was
very dominating and who hogged the floor too much.   She wouldn't hear
anything but what she had already made up her mind about.    Ultimately she
left the group, but till then there was much eye-rolling and sighing when
she would get started.    Nobody got a word in edgewise, and there was no
way to killfile her :-)

It is my opinion that both forms of communication have their benefits and
their shortcomings.

Signature

Best Regards,
Evelyn

(to reply personally, remove 'sox')

Boydette - 15 Apr 2005 18:41 GMT
OOOPs I think I responded in the wrong thread because I hit next new
LOL...but I wanted to say to Karen...and Andrew you hit the proverbial
nail on the head...thank you...and to Evelyn it is more like a love/hate
relationship and I understand just reading words on a screen yall are
not seeing that I have actually come a long way and I owe that to those
here who have tried to help over the last year or so

I guess basically even though I appreciate the advice it frutstrates me
if it isnt practical in my situation...I am sorry if I sound repetitive
I guess its repetitive cause the same things keep happening....I am
gonna call Senior Services today cause I feel like its time for them to
step in....sis is simply not doing the job she has taken on of her own
free will....also I think she is getting into my parents money and I
swear if I find that out I will sue tha pants off her when they
pass...anyway thanks to all I am sorry if I get emotional and I surely
dont mean to "hog the floor" so forgive...thanks again
Andrew Callahan - 15 Apr 2005 19:38 GMT
<snip>
> In my in-person support group there was an otherwise very nice woman who
> was very dominating and who hogged the floor too much.   She wouldn't hear
[quoted text clipped - 5 lines]
> It is my opinion that both forms of communication have their benefits and
> their shortcomings.

Evelyn,

Yes, you are absolutely right, there are advantages and disadvantages to
both ways of doing things.  This online group, for example, is available
more than 90 minutes once a month on a Monday night in the basement of the
hospital's medical services building.  That is a big plus.  Also, not
requiring to "get dressed" etc.  The live and in-person groups can suffer if
they don't have a good moderator, or if the participants aren't willing to
be more or less equals.  If one person dominates, that can be detrimental.
But, a live group, with a good moderator, and perhaps half the meeting
reserved for general discussion and the other half some type of presentation
or educational or social activity can be very uplifting.

So, yes, I agree that there are advantages to both, and they can be a great
complement to one another, but they are not fully interchangeable.

I have just started reading this newsgroup recently, and hope to be able to
participate from time to time.  Another obvious advantage here is that one
can get some good benefits just by reading.  One need not feel compelled to
enter the discussions, and the moderator never turns to you and says, "Well,
let's hear from you now."  :-)

Signature

Andrew D. Callahan, Owner
Deadlines Typing Service
Anytype Dot Com Typing and Transcription Service
http://www.anytype.com

Evelyn Ruut - 15 Apr 2005 22:26 GMT
> Evelyn,
>
[quoted text clipped - 17 lines]
> compelled to enter the discussions, and the moderator never turns to you
> and says, "Well, let's hear from you now."  :-)

Hi Andrew,

All good points, and I hope you continue to read and post here.   The
biggest disadvantage of usenet to some, is also its best allure to
others.... the fact that discussion is free and unmoderated.

Someone can take a sudden major dislike to you and get really ugly, just as
easily as you can connect with someone really nice and become a dear friend.
You just never know what you will find.

It is the wild west here on usenet.   The net-nannies and controlling types
often go to private lists in hopes of finding smoother sailing, but discover
that there are other people posting on those lists too, and dislikes can
arise there just as easily.

I personally find that it is good practice for life in general to read and
post here.   You either develop a thick enough skin to survive, or you kid
yourself.   I for one enjoy it, and have made many wonderful enduring
friendships.

Signature

Best Regards,
Evelyn

(to reply personally, remove 'sox')

Florence A - 15 Apr 2005 18:19 GMT
Andrew-

Blessed be the peacemakers..

Yes,most of us have been thru or are going thru tough times & really
tough decisions.   It is something like noise when trying to get the
baby to sleep..(Another bad analogy no doubt)---but the repetitive noise
becomes disturbing... So I've decided that SHUSH, with pointer finger
against the lips..is best..

I have gotten great  support from this group.  Usually by reading,
thinking and seeing how I could make suggestions work for me..I agree,
tact is difficult when we have only the written word & don't really know
each other..
 
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