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 Antother newcomer to the forum 
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Joined: Mon Jan 05, 2009 4:23 pm
Posts: 21
Location: the Netherlands
Post Antother newcomer to the forum
Hi,

I did allready post something but I would like to introduce myself, my name is Sandra and I m from The Netherlands, 46 years old, married and have a son of 12. My father was diagnosed with LBD december 2007, my mother died in 1991 and I m an only child. I m glad that I found the forum because here almost no one ever heard of LBD ( I didn't either before my father got diagnosed..).
My father is doing well due to Excelon he uses 11,5 mg per day, but there are signs that we are slowly losing the battle... He is currently living in an elderly home, where there are nurses around the clock and it's a 5 minute walk to and from my house. If the hallucinations do come back it will not be possible (in the long run) to keep him there. Eventually he will has to go to a closed facility, I just hope he still has some good times left!

Sandra


Wed Jan 07, 2009 11:05 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Please read Boeve's "Continuum" paper on the LBDA website. It gives guidelines on appropriate pharmacological treatment of hallucinations and other LBD symptoms.


Wed Jan 07, 2009 2:40 pm
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Joined: Mon Jan 05, 2009 4:23 pm
Posts: 21
Location: the Netherlands
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Tkx Robin, I will do o.

Please excuse my english, it's not my native language but I do my best...

One of the problems I run into is that my father is a very well dressed charming and well spoken person, he lost that and more at first but because of the exelon he got that all back, which is just great! So people who don't know him or just met him or even people who do know him, and have some small talk or let him tell stories about when he was young, do not understand whats wrong with him. Most people can not believe that without the exelon he can not speak that well, cries a lot, hallucinates terribly, can not dress of shower himself etc etc..He does everything within his power to hide his problems and he succeeds! Even his new doctor (specialised in dementia) asked me if the diagnoses was right... His old docter (who is in another part of the country and is more specialised that the 2nd one) needed to convince the new docter and now, fortunately, she is convinced... My father just knows how to keep up appearences... It also means that he is somewhat in denial and when he has a real good day he believes he can be cured.
By the way it s not that I m telling everybody, but we live in a small village and everyone knows that my father was hospitalized because of his problems, but they can't see whats wrong.

Does any of you share this?

Sandra


Wed Jan 07, 2009 3:09 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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for a long time you couldn't tell anything was wrong with my mother unless you really sat and spent time with her. Just enjoy his fooling people and let him have his hope. As long as the doctor is on board that's the one that matters
Sharon

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syt


Wed Jan 07, 2009 8:45 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Hi Sandra,

Your English is much better than my Dutch!

I think Sharon's advice is perfect. In the dementia world, we call this "show time." Your father is able to put on a good show or performance for others, and only a few people really see what's going on after the performance.

Robin


Fri Jan 09, 2009 4:39 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Sandra nice to meet you,

Dutch, English, no matter what language, we are all here communicating about our loved ones and our journey with them and LBD.

My LO could put on a good act too. Sometimes relatives and friends thought he was fooling or faking us. Many didn't believe he had LBD. They didn't see what he was like after they went home. His ability to do that is fading quite a bit now and reality has set in for all. Enjoy your dads act as long as you can.

You will be glad to have joined this site as the information is invaluable and the folks are all wonderful. Don't know what I would have done at times without their support.

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Dianne C.


Sat Jan 10, 2009 2:10 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Dear Sandra,
Welcome to the LBDA forums, I won't add much more than the others have said but others have been like this too, many caregivers have said that they are the only ones that see the LBD , there comes a time where they can no longer have this "Showtime", so for now let your father have his hope.

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Irene Selak


Sat Jan 10, 2009 7:19 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dear Sandra --
Your English is excellent!!! You are experiencing a very common frustration many LBD caregivers face. Others have already mentioned "showtime" -- the inexplicable ability of our loved one (LO) to behave quite "normally" in the presence of others. What is even worse is when others start accusing you of exaggerating, making up this illness, or simply refuse to believe you when you tell them your LO is not well. Ignore them. Then come tell your friends here on the forum (who DO understand) how angry you are about these people, and you will feel much better! :D

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Renata (and Jerome-in-Heaven)


Mon Jan 12, 2009 4:03 pm
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Joined: Mon Jan 05, 2009 4:23 pm
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Location: the Netherlands
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raffcons wrote:
Dear Sandra --
Your English is excellent!!! You are experiencing a very common frustration many LBD caregivers face. Others have already mentioned "showtime" -- the inexplicable ability of our loved one (LO) to behave quite "normally" in the presence of others. What is even worse is when others start accusing you of exaggerating, making up this illness, or simply refuse to believe you when you tell them your LO is not well. Ignore them. Then come tell your friends here on the forum (who DO understand) how angry you are about these people, and you will feel much better! :D


This is exactly how I feel sometimes, very frustrating! The thing is if the same people would have seen him in his (so far) worsed period they probebly would have been scared to death...

But thanks everyone for your kind welcome, reactions and support :)

Rgds,
Sandra


Mon Jan 12, 2009 5:15 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Sandra,

I have had this problem with my own family. They don't understand. They think my husband is faking at times and they are angry that my life has become so difficult. Many of them no longer communicate with us. His sister is in denial and cannot face his illness, his children do not visit or help us in any manner. So I have no help from family. I do have some neighbors and friends who understand and I am so appreciative of them. My loved one is also jealous of our friends and says very mean things to them. Some understand, some don't. Renata is so right...come to this site and vent to folks who DO understand...you will feel so much better. Bless each and every one of them.

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Dianne C.


Tue Jan 13, 2009 12:31 am
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Joined: Mon Jan 05, 2009 4:23 pm
Posts: 21
Location: the Netherlands
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Dear Dianne,

I m sorry that your family doesn't understand, that must be very hard! I don't have real contact with any of my own family, my mother passed away 18 years ago. But I do have support from my my best friend, my mother in law and I have a fantastic husband! My father moved into a care facility close to my home about 8 months ago, before that he was living in another part of the country which was too far away from me and during the time he stayed in the hospital try to arrange his medication/threatment we decided (my father, his doctor, my husband and me) that it would be better for him to move. I m now at walking distance for him, so he comes to my house ones or twice a day, just to have a chat or a meal or watch something on TV togheter.

It is really a relief to speak to you all who do understand what I m talking about. Before my father was diagnosed I never heard of LBD, the same as everybody around me and alltough some do have compasion others give you THE look!

Rgds,
Sandra


Tue Jan 13, 2009 4:38 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Sandra,

Thanks for your reply. You are fortunate that your father is so close he can walk over for a visit. Sounds like a great arrangement for all.
Cherish every little visit from him.

Difficult as it is taking care of my LO I am happy I have him in my life for yet another day.

This site is so wonderful for all of us.

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Dianne C.


Tue Jan 13, 2009 10:42 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Dianne C. wrote:
Difficult as it is taking care of my LO I am happy I have him in my life for yet another day.


This is my hope that all caregivers can come to these thoughts! It make caregiving just a little bit easier, I think !

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Irene Selak


Tue Jan 13, 2009 10:52 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Irene,

That is my ultimate goal too. :) When we are having good days it is easier to keep your eye and heart on those thoughts.

You can tell by some of my posts that at times I don't know if I can go on and continue to deal with this terrible disease that has inflicted itself on my LO...and then I come here and vent...and face the next day. One day at a time.

My heart goes out to everyone who has to deal with LBD and other dementia diseases. It is so difficult to see a vibrant LO decline due to this terrible illness especially when he knows what is happening to him and the sadness and stress it causes him...it isn't HIS illness, it is OUR illness.

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Dianne C.


Tue Jan 13, 2009 1:09 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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well said
Sharon

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syt


Tue Jan 13, 2009 3:22 pm
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