...Good news I hope

[Guest guest]

As some of you know, my stepson is profoundly multiply handicapped

(is 20 years old but currently like a 1 month old). He was home with

us until 9-1/2 years of age when he needed full time nursing care.

He had a great quality of life for someone with his level of

abilities (at best 9 month age developmental level), but his

condition began to worsen several years ago. It's progressive and

eventually terminal and thus we've opted for palliative care to give

him a quality end of life as he's in pain much of the time. We've

constantly been battling his nursing home to get him appropriate

care, especially since the current Director of Nursing took over. My

signficant other, Marsha and I are his guardians and are devoted to

him, yet they feel they know better than we do...and seem to think we

are trying to kill him, instead of trying to help him be

comfortable. Anyway...hope that updates those who may not know the

story....Here's today's update....

is going to move into a new facility on Monday! Today, after a

week of really wanting to go " postal " at his current facility, I

asked for a meeting at a facility we really like, but where there

were no available beds. I met with the Administrator, Admissions

Director and Director of Nursing, who coincidentally is a former

student of mine. I told them just a few of the things that were

going on at his current place and they were horrified. They actually

said that we can't leave him there too much longer, and said they

were going to try to work on a plan to come up with a bed that was

suitable for him but they didn't think they had room. Less than 10

minutes later they called me back to ask if Marsha and I would be

okay with their putting on a subacute unit until a bed became

available on the long term unit. They said they'd be glad to move him

in on Monday if we wanted to. We jumped at the opportunity. The

place is really nice, and the nursing director is great. As I said,

she's a former student (was an RN who went for her BSN...is now going

for her Masters) is very hands on (unlike the Director of Nursing at

his current place), and very open to the fact that family members

know their loved ones best. She wants to know his signs of pain so

she can make sure her nurses know how to respond. The timing is

definitely right because I can't take it much longer. Today, for

instance, had several seizures. When I asked the afternoon

nurse whether she had been told about the seizures, her response

was " I heard that you reported them, but no one else saw them. " What

does that mean? Why would I make that up? The frustrating part is

can't get more antiseizure medication (which he definitely

needs) because the DON would refuse the doctor's order because her

staff " didn't see them. " The fact that they may last 1 minute and by

the time I get the staff member they've stopped, doesn't seem to

compute in their NT brains! At least at the new place the doctor

will be able to medicate him as needed and (hopefully)we will be able

to keep him comfortable.

On a lighter note (I think)Marsha's ex-husband (Ed) was there this

afternoon. He tends to drop by for a couple of hours on Fridays

to " play caring Dad " (Keep in mind he gave up guardianship to me;

I'm on leave from work and taking care of a good part of the

week; Ed didn't see for years when he was home with us....and

still doesn't get the fact that had a quality of life for many

years...all he sees is could never play ball, read from the

Torah, etc.) OK...so (Scene 1)I put Ed to good use and have him help

me begin to pack 's things. That works; at least I don't have to

lift heavy things. Scene 2: Ed was dating a woman for about 1 year

who wouldn't see because it " would be too upsetting to her. "

They " broke up " a couple of weeks ago but apparently have been in

contact since. Now she decides to come by to meet (with her 18

year old daughter). If that's not enough she claims to know the

business manager for his new facility through her line of work and

states she's (and I quote) " going to call her so that she (the

business manager) knows that a member of the family will be coming

in. " Now, I wanted to ask her...whose family? You never met him

before...and even your relationship with Ed is not intact...but I was

good and didn't. What I don't understand...and maybe someone can

help me here...is how can someone be so transparent in terms of using

a sick child to try to get back with her boyfriend....and how can

this boyfriend let her do this? We're talking about a woman in her

50's...not a teenager! Actually, I've been angry about it all day,

and writing about it finally put it into perspective for me...she's

USING , and I can't forgive her for that: How can you use a

sick, innocent child?....I really don't understand NT females (and

I'm somewhere on the cusp of NT/AS myself...although Tom and Raven

have dubbed Marsha and I as being " honorary AS. " )

Anyway, sorry for the long posting....Will keep everyone posted on

how the move goes Monday and how is doing..

[Guest guest]

Louise,

I think it is great that is going to be getting the proper care

he needs, so thank goodness a better place is accepting him:

Regarding this:

" What I don't understand...and maybe someone can help me here...is how

can someone be so transparent in terms of using a sick child to try to

get back with her boyfriend....and how can this boyfriend let her do

this? We're talking about a woman in her 50's...not a teenager!

Actually, I've been angry about it all day, and writing about it

finally put it into perspective for me...she's USING , and I

can't forgive her for that: How can you use a sick, innocent

child?....I really don't understand NT females!!! "

Ed is using also. He is trying to appear to be the loving father

of his deathly ill son. Once the two of them are solidly together, I

suspect that Ed will drift away a little to " accommodate " his

girlfriend's feelings that seeing in this state makes her so

upset.

I have seen this sort of thing before. I don't think either Ed or his

girlfriend love or he would have been there from beginning to

end, as often as possible, and with full devotion. And he would never

have entertained a woman who was initially too traumatized by the

concept to see .

In short, it sounds to me that he has a silly little bimbo and he is

not that much less silly himself.

Administrator

[Guest guest]

Louise,

I hope the move went smoothly and he is in better hands now.

Kim

[Guest guest]

>

>

>

> Louise,

>

>

> I hope the move went smoothly and he is in better hands now.

>

> Kim

>

I also hope the move will be what you had hoped for. Mimi

[Guest guest]

>

> Louise,

>

> I think it is great that is going to be getting the proper

care

> he needs, so thank goodness a better place is accepting him:

>

> Regarding this:

>

> " What I don't understand...and maybe someone can help me here...is

how

> can someone be so transparent in terms of using a sick child to try

to

> get back with her boyfriend....and how can this boyfriend let her do

> this? We're talking about a woman in her 50's...not a teenager!

> Actually, I've been angry about it all day, and writing about it

> finally put it into perspective for me...she's USING , and I

> can't forgive her for that: How can you use a sick, innocent

> child?....I really don't understand NT females!!! "

>

> Ed is using also. He is trying to appear to be the loving

father

> of his deathly ill son. Once the two of them are solidly together, I

> suspect that Ed will drift away a little to " accommodate " his

> girlfriend's feelings that seeing in this state makes her so

> upset.

>

> I have seen this sort of thing before. I don't think either Ed or

his

> girlfriend love or he would have been there from beginning to

> end, as often as possible, and with full devotion. And he would

never

> have entertained a woman who was initially too traumatized by the

> concept to see .

>

> In short, it sounds to me that he has a silly little bimbo and he is

> not that much less silly himself.

>

>

> Administrator

>

I agree withg Tom they are both using this child. Neither of them

would make a good partner to anyone. You on the other hand seem to

be the ideal person to be in 's life.

By the way, as a jew, the father has no worth as a religious person

and his actions negate his faith (all of them) down to his response

to this girlfriend. And I know I don't know these people but don't

get me started with her attitude (as the delicate 50 yr old that

can't bear to see the ill child) Why can't I get to exact justice,

I promise I would be efficiant and fast

wow so much to make you angry lately (sisters ex-husbands, nutty

GF's, and bad churches)

[Guest guest]

" wow so much to make you angry lately (sisters ex-husbands, nutty

GF's, and bad churches) "

Not Louise's sister's ex-husband. Louise's significant other's ex-

husband.

Administrator

[Guest guest]

>

> " wow so much to make you angry lately (sisters ex-husbands, nutty

> GF's, and bad churches) "

>

> Not Louise's sister's ex-husband. Louise's significant other's ex-

> husband.

>

>

> Administrator

>

no I was referring to the posts on families in the collective, sorry.

Raven sister, louise's ex group(and mine) bad churches as in the

story posted, and now as in the new post of Wisconson grandma

Major dissapointment in human kind(with the distinct exception of

those that have posted on this list, as the only examples of human I

can feel comfortable with as in being imbuied with the human spirit)

[Guest guest]

That is good news that all went well.

That sounds like my father. He was rarely ever around for important things, and when he was, me managed to make an ass of himself.

Would you enlighten me as to what a manipulatrice is? I get the general idea but specifics would be nice.

The move went reasonably well. seems to be doing a little better here...has actually been awake in smiling responsively in the mornings. We're currently engaged in teaching the staff how to care for him. So far they seem receptive, but we are both still holding our breath.....Thanks for your well wishes...BTW...His father and his manipulatrice (That word sounds great Raven) stayed away. His father had important things to do on Monday (his one day off this week)...like having his car serviced. I guess getting an oil change and summerizing your car is much more important than your terminally ill son moving from one facility to another! Well, that's why I'm co-guardian with Marsha! Ed (his father) did tell the girlfriend not to call the facility. She reportedly wasn't happy, but did obey. The funniest thing was to see the face that the business manager made when the girlfriend's name was mentioned (and she was told not to give her any info on )....She apparently likes the manipulatrice even less than I do!!! --- In Get trade secrets for amazing burgers. Watch "Cooking with Tyler Florence" on AOL Food.

[Guest guest]

The move went reasonably well. seems to be doing a little

better here...has actually been awake in smiling responsively in the

mornings. We're currently engaged in teaching the staff how to care

for him. So far they seem receptive, but we are both still holding

our breath.....Thanks for your well wishes...BTW...His father and his

manipulatrice (That word sounds great Raven) stayed away. His father

had important things to do on Monday (his one day off this

week)...like having his car serviced. I guess getting an oil change

and summerizing your car is much more important than your terminally

ill son moving from one facility to another! Well, that's why I'm co-

guardian with Marsha! Ed (his father) did tell the girlfriend not to

call the facility. She reportedly wasn't happy, but did obey. The

funniest thing was to see the face that the business manager made

when the girlfriend's name was mentioned (and she was told not to

give her any info on )....She apparently likes the manipulatrice

even less than I do!!!

> >

> > " wow so much to make you angry lately (sisters ex-husbands,

nutty

> > GF's, and bad churches) "

> >

> > Not Louise's sister's ex-husband. Louise's significant other's ex-

> > husband.

> >

> >

> > Administrator

> >

> no I was referring to the posts on families in the collective,

sorry.

>

> Raven sister, louise's ex group(and mine) bad churches as in the

> story posted, and now as in the new post of Wisconson grandma

>

> Major dissapointment in human kind(with the distinct exception of

> those that have posted on this list, as the only examples of human

I

> can feel comfortable with as in being imbuied with the human spirit)

>

[Guest guest]

lounur wrote: " The move went reasonably well. seems to be doing a

little better here...has actually been awake in smiling responsively in

the mornings ... <snip> ... "

That's wonderful news, lounur!

lounur wrote: " ... <snip> ... We're currently engaged in teaching the

staff how to care for him. So far they seem receptive, but we are both

still holding our breath ... Thanks for your well wishes ... <snip> ...

" Hope for the best; prepare for the worst " is a saying I go by quite

often. I am hoping that the staff continue to be as open and

understanding as they appear to be today. Time will tell but I get a

sense that if the staff did not want there, their collective

demeanour would not be able to hide such a monstrous fact. Ergo, I

believe they will continue to do their best to do what is right for

.

lounur wrote: " ... <snip> ... BTW ... His father and his

manipulatrice (That word sounds great Raven) stayed away. His father

had important things to do on Monday (his one day off this

week) ... like having his car serviced. I guess getting an oil change

and summerizing your car is much more important than your terminally

ill son moving from one facility to another! ... <snip> ... "

You know, the new staff just can't see him pulling up in a car that

isn't 100% amazing. <Raven rolls her eyes.> It's that sort of

behaviour that tells me that Ed is quite happy being the centre of the

manipulatrice's efforts since they both appear to be incredibly shallow

individuals. How sad is that?

lounur wrote: " ... <snip> ... Well, that's why I'm co-guardian with

Marsha! ... <snip> ... "

It's also why you and Marsha have a far better relationship than Ed

appears to have with his current girlfriend or can ever hope to have

with her in the future.

lounur wrote: " ... <snip> ... Ed (his father) did tell the girlfriend

not to call the facility. She reportedly wasn't happy, but did obey. The

funniest thing was to see the face that the business manager made

when the girlfriend's name was mentioned (and she was told not to

give her any info on )....She apparently likes the manipulatrice

even less than I do!!! ... <snip> ... "

The sad thing is that the manipulatrice believes that she has a 'good

working relationship' with the business manager at the facility.

That the business manager did not say anything untoward about her

speaks loudly to the business manager's business acumen and self-

control. That the manipulatrice believes that she has positive

interactions with the business manager is mind-boggling and quite

telling itself.

Even if the manipulatrice decides to overstep the boundaries, I get a

sense that she will not get very far with that endeavour.

Again, congratulations on having moved to the new facility and

congratulations on having a good team who is willing to listen and

learn from you and Marsha about as an individual.

Raven

Co-Administrator

[Guest guest]

" The move went reasonably well. seems to be doing a little

better here...has actually been awake in smiling responsively in the

mornings. "

Good. Now send a card over to the previous facility letting the know

how is doing. Couch it in terms of " Just wanted to let you know

the move went well " but be sure to add in the most polite way you can

think of: " Now that competent people are looking after him in the way

in which Marsha and I told you to do it, is doing much better -

you stupid nitwits! "

" We're currently engaged in teaching the staff how to care

for him. So far they seem receptive, but we are both still holding

our breath..... "

Hospices and the like are more interested in providing comfort than

they are in simply providing for medical needs. I think because of

past experiences at the other place, it will take time for you and

Marsha to trust the new place...and I am sure the new place will fall

short of the mark now and again...but this new place will surely, on

average, rate much better.

" His father had important things to do on Monday (his one day off this

week)...like having his car serviced. I guess getting an oil change

and summerizing your car is much more important than your terminally

ill son moving from one facility to another! "

I think because you are in the psychiatric profession and Marsha is

in the psychological profession, you are both more sensitive to

people's motivations generally, but in this case you are not far

enough removed from the situation to see what is going on: Ed has

already written off and could care less what happens to him.

That is what enables him to go about his daily business unconcerned.

Administrator

[Guest guest]

asked: " ... <snip> ... Would you enlighten me as to what a

manipulatrice is? I get the general idea but specifics would be

nice ... <snip> ... "

Just like an executrice is a female executor (as in the executor of an

estate), a manipulatrice is a female manipulator.

Oddly enough, the image the word manipulatrice conjures up in my mind

is always more dangerous, more sinister, and sleezier than her male

counterpart. Maybe it's just my perception however it always feels

that way to me.

Raven

Co-Administrator

[Guest guest]

> Just like an executrice is a female executor (as in the executor of

an

> estate), a manipulatrice is a female manipulator.

>

> Oddly enough, the image the word manipulatrice conjures up in my mind

> is always more dangerous, more sinister, and sleezier than her male

> counterpart. Maybe it's just my perception however it always feels

> that way to me.

>

> Raven

> Co-Administrator

>

I agree, maybe that is because women are seen as communicaters (but I

get the same connotation

[Guest guest]

I agree...and I hate to be sexist...but in this case it does fit!!!

How much more sleezy can you get than using a child with a profound

disability to get/keep a relationship?

> > Just like an executrice is a female executor (as in the executor

of

> an

> > estate), a manipulatrice is a female manipulator.

> >

> > Oddly enough, the image the word manipulatrice conjures up in my

mind

> > is always more dangerous, more sinister, and sleezier than her

male

> > counterpart. Maybe it's just my perception however it always

feels

> > that way to me.

> >

> > Raven

> > Co-Administrator

> >

> I agree, maybe that is because women are seen as communicaters (but

I

> get the same connotation

>

[Guest guest]

" I agree...and I hate to be sexist...but in this case it does fit!!!

How much more sleezy can you get than using a child with a profound

disability to get/keep a relationship? "

Watch the various animal shows on PBS once in a while and you can see

how irrational animals get when they go through the courtship rituals

for their various species. Ed is basically trying to demonstrate how

good he is with nest-building and caring for young. Once he has this

woman in his nest, he will drop the pretense, mate with her, and then

revert to being the same old jerk.

Administrator

[Guest guest]

lounur wrote: " I agree...and I hate to be sexist...but in this case

it does fit!!! How much more sleezy can you get than using a child

with a profound disability to get/keep a relationship? "

responded: " Watch the various animal shows on PBS once in a

while and you can see how irrational animals get when they go through

the courtship rituals for their various species. Ed is basically

trying to demonstrate how good he is with nest-building and caring

for young. Once he has this woman in his nest, he will drop the

pretense, mate with her, and then revert to being the same old jerk. "

<Raven shudders>

Eeeeeeeeeeewwwwwwwww! Now I won't be able to watch animal shows on

public access television without getting a completely different

visual. Thanks, !

<Raven rolls her eyes at >

Raven

Co-Administrator