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Medical Forum / Diseases and Disorders / Alzheimer's / March 2006

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fao Liz in sydney

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Dancing Queen - 05 Mar 2006 11:42 GMT
does she still post around here? i have not been here for a while, and i
just wondered how she was doing with her husband and him coming home etc.

chris
Evelyn Ruut - 05 Mar 2006 12:06 GMT
> does she still post around here? i have not been here for a while, and i
> just wondered how she was doing with her husband and him coming home etc.
>
> chris

We haven't heard from her in a while, Chris.  I wondered too.

Signature

Best Regards,

Evelyn
(to reply to me personally, remove 'sox')

Liz (Aust) - 05 Mar 2006 12:59 GMT
Hi Dancing Queen
I have not posted for some time as I felt that I was not welcome here,
but I have been back every now and then to read and to try to
understand what my husband is going through.

He had a diagnosis of DLB but because he felt that he was well and
nothing was happening he trashed his hospital room and got himself
sectioned uinder the Mental Health Act, because he felt he would 'have
his day in Court' which would result in him being released.

He threw his cup of tea over me and accused me of 'setting him up' and
then held Police at bay for 3 hours with broken fluro tubes until
eventually they pushed him to the ground, handcuffed him and sedated
him.

>From there he was moved to a hospital specialising in Dementia which
has a secure ward and he is still there tonight, although he is
appealing his order tomorrow before a Tribunal.

After what I am told was exhaustive testing they have now decided he
doesn't have DLB but may have a dementia caused by the use of
benzodiazapam for over 30 years but they feel the main cause of his
behaviour problems are a mental health issue.

So now they plan on moving him to a psychiatric hospital, although he
doesn't know it yet, as they know he will go ballistic to be
transferred back to the hospital he was in before Christmas, although a
different part.

He is still paranoid and dellusional and aggressive and this very day
threatened to have a barrister and a police officer on my doorstep if I
did not give him his wallet and his bank statements.

In the time he has been in the current facility he waxs and wans from
being so sweet and loving and wanting to book a holiday for us, to
ringing me demanding I bring him this and that, including an order to
pack all his belongings up and send them "Post Haste" to the hospital.

Problem is if they discharge him, which they apparently do before
transferring him, there is some chance they may not section him in the
new hospital they  transfer him to.

I have told them if he is released before he is well enough on their
heads be it. I have warned them he is not rational and is paranoid and
delusional and aggressive, which they have already seen many times.

They do say he has dementia, just not LBD and that with time and total
withdrawal of benzos his dementia may be reversible to some extent,
although they are not sure of that, particularly since he does have
moderate atrophy of the frontal and temperal lobes.

They also told me that they believe his behaviour is conscious to some
extent and that he can modify it if he wants to. I also have some
doubts about that, however I am not a psychiatrist.

I told him today that he needs to let me know when he is being
discharged so I can move out of this house, to which his response was
to accuse me of moving in with a friend. That friend is someone I met
on the net who I have never met in rela life and have been chatting to
for nearly 10 years. He lives in Canada with his fiancee.

I am sorry that this is such a long answer to a short question but I am
standing resolute that unless and until the aggression and other
symptoms are reduced with medication I will not live in the same house.

So the drama continues since early December 2005 to now. I do wonder
whether their final diagnosis has anything to do with the fact that all
their other patients are very elderly and are probably much easier to
handle than him and isn't it convenient that they now say it is
primarily a mental health issue

Please do not get me wrong, I certainly do not WANT him to have LBD but
I do want his to be diagnosed correctly and treated appropriately.

I am so tired of all of this.

Thanks for thinking of me

Liz
Evelyn Ruut - 05 Mar 2006 14:01 GMT
> Hi Dancing Queen
> I have not posted for some time as I felt that I was not welcome here,

Dear Liz,

You most certainly are welcome here.
Please don't think you aren't.

If there is someone who posts here that you aren't comfortable talking with,
use your "block sender" option, and only talk with those you feel
comfortable with.

From my own standpoint I can tell you that no one here seems to mean any ill
toward anyone that I can see, but not everyone appreciates every posting or
communication style.   This is encountered in the world in general just as
on newsgroups.

In the meantime, I hope all goes well with his move, and I wish you peace
and happiness!

We do care about you, and hope you continue to post.

:-)

Signature

Best Regards,

Evelyn
(to reply to me personally, remove 'sox')

Tumbleweed - 05 Mar 2006 20:10 GMT
> Hi Dancing Queen
> I have not posted for some time as I felt that I was not welcome here,
> but I have been back every now and then to read and to try to
> understand what my husband is going through.

Liz,

I can only speak for myself, but you are very welcome here, and I dont
recall any messages from anyone else to the opposite.

> He had a diagnosis of DLB but because he felt that he was well and
> nothing was happening he trashed his hospital room and got himself
[quoted text clipped - 51 lines]
> on the net who I have never met in rela life and have been chatting to
> for nearly 10 years. He lives in Canada with his fiancee.

Dont take this the wrong way, its nota criticism, but from the outside,
judging from what you have written,  really think you are wasting your time
having conversations with him. Nothing good comes out of them does it. It
doesn't seem to be classic Az, but certainly with that,. there is little
point in explaining things in detail,and in your case they just seem to fuel
his delusions

> I am sorry that this is such a long answer to a short question but I am
> standing resolute that unless and until the aggression and other
[quoted text clipped - 14 lines]
>
> Liz

Do you have a lawyer? Seems to me, again just from what you have said, that
a 'clean break' might be the best for the you.

Signature

Tumbleweed

email replies not necessary but to contact use;
tumbleweednews at hotmail dot com

Liz (Aust) - 07 Mar 2006 22:04 GMT
Hi Tumbleweed

A 'clean break' may indeed be what is best for me and I am seriously
considering that and yes I am getting legal adivce.

I had hoped to avoid the divorce trip because it is going to cost me a
LOT of money and also because my husband is vunerable and is likely to
taken for a ride and dumped. Beside that I actually do still care about
him and I am probably the only person who cares enough to help him long
term.

However he apparently is trying to buy a car, which since he is in a
secure ward means he can only look at it from a distance, and in any
case he is NOT allowed to drive based on doctors reports, and I also
know he bought a mobile phone (which is ironic since he has very few
people to actually phone).

I told the Social Worker that I am done, I have had enough and if
intends to buy and drive a car then I will start divorce proceedings
regardless of what I lose, at least I may gain some peace of mind. I
also plan to report him to the motor transport department to have his
licence cancelled, not that this will stop him.

I feel bad cause he will see that message as I don't care but this is
affecting my health and I am so depressed that just making it through
the day is difficult, and I am already on antidepressants.

You are right, there is no point in trying to reason with him and I
don't plan to try anymore.

Liz
Tumbleweed - 07 Mar 2006 22:42 GMT
> Hi Tumbleweed
>
[quoted text clipped - 27 lines]
>
> Liz

Liz,
the first thing you have to do isl ook after your own health, bodily and
mental. Without that, you cant help anyone else even if you want to.

Signature

Tumbleweed

email replies not necessary but to contact use;
tumbleweednews at hotmail dot com

A R Pickett - 08 Mar 2006 12:03 GMT
Tumbleweed wrote - > Liz,
> the first thing you have to do isl ook after your own health, bodily and
> mental. Without that, you cant help anyone else even if you want to.

I concur 100% with this advice.  Just like airlines always say - "put on
your own oxygen mask before you help others"  If the helper is tired,
overwrought, ill, frantic, what have you, she/he will never be able to help
the one who cannot help himself.

Signature

A R Pickett aka Woodstock

"Sometimes the facts threaten the truth"
Amos Oz, prize winning Israeli author

Read my book reviews at:
http://www.booksnbytes.com/reviews/_idx_ws_all_byauth.html

Remove lower case "e" to respond

Liz (Aust) - 08 Mar 2006 13:57 GMT
Hi

Yes I agree with the sentiments that Tumbleweed and you have espoused.
I have avoided talking to him today and am not sure if he is actually
talking to me, but at least I have found out that he has not actually
managed to spend any of the money in his account and that the hospital
are monitoring who comes and goes from there as well as his mail.

I don't care what he does with his own money but most of what is in the
account I gave him and I do care if he uses that to purchase a car
which may hurt or kill someone, including himself.

He has been busy telling anyone who will listen that I have been having
an affair and accuses me of paying to keep him in hospital and also
paying his brother, who doesn't actually even like me, to do what I
say. I have no idea why he thinks I have such power except I guess he
needs to blame someone else for the fact he is still in hospital and it
can't be him, because there is nothing wrong with him!

No doubt when he wants something else he will ring me but at the moment
I am better off not speaking to him as I am angry with him, even though
I know he can't help it despite what the doctors say.

I firmly believe if he could control his actions he would do so as he
would know it will help get him out of the hospital.

I made inquiries with the National Dementia Helpline here and there is
very little research on dementia caused by longtime use of benzos and
apparently the results are very inconclusive with 2 papers saying it
can cause dementia and 2 saying it doesn't.

The fellow I spoke with seemed more inclined to think it was frontal
lobe dementia, due to the fact that frontal and temporal lobes have
moderate atrophy. Only time will tell I suppose.

Thanks all for your support and good wishes, this is not going to end
pleasantly I think but how unpleasant is yet to be determined.
Liz

> Tumbleweed wrote - > Liz,
> > the first thing you have to do isl ook after your own health, bodily and
[quoted text clipped - 4 lines]
> overwrought, ill, frantic, what have you, she/he will never be able to help
> the one who cannot help himself.
augustwestern - 05 Mar 2006 22:09 GMT
> Hi Dancing Queen
> I have not posted for some time as I felt that I was not welcome here,

I certainly don't remember anything that might have caused you to believe
this.  I remember several group members giving you good advice with your
very difficult situation. Admittedly I have Iron man and a few other trouble
makers kill filed so that I never see their postings, so maybe I missed
something, but in any case please feel welcome here, as you have your hands
full and really need help.

What level of benzo usage is you husband down to now?  It may take a year or
more of inpatient care to get him fully detoxed.  Daily exercise would be
very helpful in getting his brain chemicals working again after he detoxes.

good luck,   AW
Liz (Aust) - 06 Mar 2006 20:52 GMT
Hi AW

Perhaps I was just too emotional at the time I was here last, I don't
know but I will leave that in the past where it belongs.

As far as I know my husband is off the benzos altogether now and has
been for about 2 months. He was taking 15mgs of Valium a night for a
lot of years but did not go above that.

Neither I nor his brother are entirely convinced he does not have Lewy
Body Dementia bit we are not the experts, however the experts had a
number of things wrong when they told me of their findings, including
their comments that he doctor shops, which he most certainly does not
do and the fact they believe that his short term memory problems are
more due to lack of interest or attention to the topic.

I KNOW that even something dearest to his heart, like any dispute he
gets himself into or something he wants to buy, he writes everything
down or records conversations because he cannot remember otherwise.

However I cannot change their minds so I have to wait to see what will
happen when they send him to the psych hosptial.

I will be speaking again to the Social Worker as he has been telling
people things that sound logical but are not true, like I am having an
affair with a friend who I chat to on the net, who lives in Canada
(while I am in Sydney Australia) even telling his brother that when I
am not home that is where I am.

So sad whatever the diagnosis is but we really need for him to have a
correct one.

Liz

> > Hi Dancing Queen
> > I have not posted for some time as I felt that I was not welcome here,
[quoted text clipped - 4 lines]
>
> good luck,   AW
Dennis P. Harris - 07 Mar 2006 04:44 GMT
> Neither I nor his brother are entirely convinced he does not have Lewy
> Body Dementia bit we are not the experts, however the experts had a
> number of things wrong when they told me of their findings, including
> their comments that he doctor shops, which he most certainly does not
> do and the fact they believe that his short term memory problems are
> more due to lack of interest or attention to the topic.

I suggest you take a cricket bat to your next meeting with these
inept, unprofessional, and obviously incompetent doctors, and
give them all a big whack upside the head to get their attention.

Seriously, isn't there some kind of appeal process in your
medical system?   Can't you go over the heads of these
nincompoops, or find an ombodsman?  Of if you don't get help, go
to your MP and have the government on their case?  This has been
going on so long that there *must* be some kind of appeal process
for you to access by now...
Adelle - 07 Mar 2006 05:52 GMT
> Hi AW
>
[quoted text clipped - 29 lines]
>
> Liz

Your previous reference of atrophy in the fronto-temporal lobes is very
telling; something the medical professionals should be paying more attention
to. [personal editorial comment - benzo addiction damage my a.s! Sorry -
this just hits too close to home. While your husband's extreme behavior
might be partially rooted in the addiction, it doesn't fully explain all of
it.]

Frontal lobe atrophy was the same finding as for my FIL. Never did find out
whether the atrophy was from LBD, vascular causes (had his first near fatal
heart attack at 39), or any of the umpteen different possible causes for
atrophy in the frontal lobes. Behavior is similar, too, though your husband
is certainly more physically violent that my FIL was. FIL only got physical
if he felt physically threatened. Antidepressants and anti-psychotics
worked. This seems interesting since certain antipsychotics can cause
increased psychosis in patients with frontal lobe dementias.

All I can say is that while he may not get certain life skills assistance in
psych facility (making him shower and shave, etc.) it will actually be the
best place for his behavior to be observed and to experiment with
medications which might help his emotions to be more in balance.

It took some psych ward time for FIL's meds to get balanced (timing and
dosages). After that, he lived a fairly quiet happy existence until a hip
fracture caused a spiral of other medical issues, and ultimately, his
passing. I hope your husband gets appropriate treatment in the psych
facility, too.

In the meantime, you *must* see an attorney/solicitor to protect your own
assets and domicile. You may need to have your husband declared incompetent.
Or, perhaps you can take advantage of one of his apologetic moments to get
signatures on an enduring power of attorney, and any other legal documents
you may need,  so you can deal with assets and your home [we did that. For
the five minutes he needed to sign and swear to his actions and desires, he
was lucid. Five minutes later, he was off in fantasy land again saying how
he was a consultant on a building project happening right next door].  Can't
stress this enough. Get legal counsel!!!!!

Wishing you strength and calmness as you walk this difficult path.
Adelle
michelle - 15 Mar 2006 10:39 GMT
Glad to see you back posting Liz,
Mind I have become more of a reader than a poster which is naughty
really cos if everyone did that there wouldnt be a support group
Michelle
W.M.McKee - 06 Mar 2006 13:04 GMT
>Thanks for thinking of me
>
>Liz

Hi Liz,

I just wanted to say hello. I am glad you are here.

Will
Dancing Queen - 07 Mar 2006 11:52 GMT
> Hi Dancing Queen
> I have not posted for some time as I felt that I was not welcome here,

hi liz,

thanks for the post. hope it was not too painful for you.  well , glad you
are ok-ish!  soldier on huh?

chris in melb
 
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