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 Emotional turmoil 
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post Emotional turmoil
My husband was diagnosed almost 4 years ago with early Alzheimers and Parkinsons. After further evaluation and a PET scan (the mri showed nothing) with a great neurologist the diagnosis was changed to Parkinsons with Lewy Body Dementia. His meds are: Aricept, Azlecht, Paroxetene, Carbadopa/Levadopa, Seroquel and a statin drug. We tried Exelon patches but he had an adverse reaction to it. His primary care physician states all of his tests are very good...in fact she states his health is "perfect."
Many times we thought he was "faking it" as when he is around other people he seems fine. I question that part of the disease: how can he turn it off when it is convenient...when others are around. I would think if it were part of the illness they would not be able to control it.
I know I am not supposed to argue with him, and try not to, but he will constantly pick at me until I cannot take it anymore. He will belittle and demean me in every human way possible. The verbal abuse is far more than I thought it would be. He constantly says "lets get a divorce." I am to the point I sometimes contemplate it. Recently it has become so bad I find myself crying a lot. All of this from a man who usually treated me very well in prior years. I was always a very positive upbeat person and now find myself lacking self esteem. I know I should not take it to heart but when you are verbally abused daily it does get to you. It is also starting to take a toll on my physical health i.e., blood pressure, blood sugar levels, etc. It is difficult as I have no help. The VA refuses to allow us into the VA system as he did not serve during wartime and did not apply for benefits prior to 2003 when that bill was passed.
He is still able to do many things but refuses to. He enjoys being waited on. He prefers to sit all day on the sofa watching tv. At times we go to a casino where he will play slot machines and he enjoys doing that. I suggest many things he could do but he just has no interest and refuses. He does have some problems operating the remote control (however last evening he did it just fine) the telephone, intricate things but can still play poker and do simple things. He can still put dishes away out of the dishwasher, fold clothes...but he just refuses. I do tell him these small things can make it easier on me but the only time he will do them is after an argument...but it signifies he can STILL do them. I feel it is important for him to help in any way he can as it gives him something to do other than watch tv and exercises his mind.
Yesterday he called a friend of ours...a 25 year friendship...and accused the husband of trying to flirt with me. This person asked if I would like to go to see an entertainer with him as his wife had already seen the show they thought it would be a good chance for me to get out...my husband was going to play poker that evening at a casino so they thought this would be good for me. My husband became livid. Our friends are insulted by his accusations. Family and friends are avoiding us as they are tired of his insults. He has alienated most family members and friends. He threw one of my sons out of our home when he was visiting because he took me out to dinner to "get me out of the house and this environment"...telling my son never to come here again. This son was one who helped us with everything. Now he will no longer come here as "he will no longer put up with these abusive outbursts."
I lost my mother 6 weeks ago after a 5 year battle with dementia. My husband did not feel up to going to the funeral but the day I left he was on the phone with the neighbors and went to see a bocce ball game and out to dinner. Its actions like this that I question. Normally he cannot work the phone...but that day he called a half dozen people and made social arrangements.
I woke up one morning recently to find our front door open several inches. He does not remember getting up and opening the door.
He is experiencing incontinence but refuses to wear the proper disposables. They gave him a plastic container to use...sometimes he uses it and other times he won't which creates a mess on our bathroom floor. Are all of these things normal? If only he would work with me to make it manageable.
I emailed Irene Selek and she emailed back with a lot of great information ..she is an angel...and sites to visit. I have read every bit of information I can get my hands on to become knowledgeable about this horrible disease.
When I read about those who have lost the LO to LBD I feel so sorry for them...but in another sense...their battle has ended.
Sorry this was so long but I really needed to "vent" today..after another terrible morning of arguing. Any info is greatly appreciated.

My thanks to everyone.

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Dianne C.


Tue Nov 25, 2008 1:17 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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Dianne -

Most of what you describe is commonly seen in those with LBD or FTD (frontotemporal dementia). I'm not sure that's much of a comfort to you.

You are dealing with a lot. Can you get some counseling for yourself?

Can you call his family (and close friends) together for a meeting about this situation?

What if you did divorce your husband? Does he have any family?

I'd suggest speaking honestly with the neurologist about this situation. Could you have your husband declared mentally incompetent, and placed in a dementia care facility?

Could you live separately in two different places, and hire people to care for him and clean his living quarters? I'm unsure of what sort of care he needs at present.

Robin


Tue Nov 25, 2008 1:52 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Robin,

Thanks for your prompt reply. As I am new to posting on the site was not sure I posted under the proper heading. Perhaps this should have been under behavorial issues or newbies.

Any and all information is comforting.

After 30 years of marriage it is difficult to imagine not being married to this person who was wonderful for many years. Then the guilt sets in for even thinking about it. Neurologist says "its the disease."

He does have family. Sister who cannot handle any part of this. Three children who have not seen him in years. I have called them, emailed them, etc. to no avail. They only cared when we sent them things/money. Now that things are restrained and we can no longe do that they do not come to visit. They call once in a great while to "check in" but that is the limit to their help. One son comes on business once a year and takes us to lunch. Friends have been most helpful but many of them are tiring of these antics too.

I take one day at a time and do my personal best...that is all I can do.

Thanks again.

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Dianne C.


Tue Nov 25, 2008 2:11 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Is there any way I can have this posted on Introductions and/or Behavorial Issues without rewriting it? Think I may have it under the wrong heading.

Thanks

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Dianne C.


Tue Nov 25, 2008 2:41 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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You can use copy and paste.


Tue Nov 25, 2008 3:06 pm
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Hello Dianne,
Welcome to the LBDA forums, I am glad you decided to join us here, this is a place you will meet many caregivers who walks the same walk that you do and really understands what it like to care for someone with LBD.


Tue Nov 25, 2008 3:12 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dianne --
Please call your local US Congressman's office and ask to speak to the constituent relations rep who handles VA matters. Explain to that person your husband's medical condition and that you're desperately in need of medical assistance through the VA. There might be something they can do for you. Good luck!

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Renata (and Jerome-in-Heaven)


Tue Nov 25, 2008 5:27 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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My thanks to all of you. The support is so uplifting as are all tips and information.

My warm wishes to all of you for a very Happy Thanksgiving! Though our lives are difficult dealing with LBD we still have much to be thankful for.

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Dianne C.


Wed Nov 26, 2008 3:23 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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You might try a psychiatrist familar with LBD. Meds have made a big difference in my Mother- he said a number of the brain chemicals can get out of balance and cause changes in behavior. She takes cymbalta and wellbutrin inhelp keep her emotionally even and happy- as well as other meds
Good Luck
Happy Thanksgiving
Sharon

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syt


Wed Nov 26, 2008 7:21 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello SYT,

We have been working closely with a neurologist who is very familiar with LBD and actually does research/treatment for all brain disorders. He has tried different medications but the current ones have produced the best results: Aricept, Paroxetene (for mood), Azlecht (makes Aricept work better), Seroquel, Carbadopa/Levadopa and a statin drug. Prior to those meds he was rapidly failing. On these meds he is doing well however he goes through periods that are almost unbearable. After several days he then becomes "almost normal" again, other than the shuffling, some hallucinations, foggy, etc., the LBD basics. It is like being on an emotional roller coaster. Dr. says this is normal for LBD patients. He had an adverse reaction fo Namenda and Exelon Patches. We are always looking for ways to improve.

Have a nice Thanksgiving.
Dianne

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Dianne C.


Thu Nov 27, 2008 12:08 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Renata (and Jerome)

I will contact my Congressmans office on Monday. Will keep you posted. I have been filling out forms and corresponding with VA for over a year and a half...almost 2 years..to no avail. They just send letters of denial. Hopefully your suggestion will help. If I could get some in home care to help me out a bit it would be wonderful and help relieve the stress.
We always had a pact that whichever one of us got ill the other would try to keep the ill person at home if possible. I would like to be able to honor our pact.

A nice Thanksgiving to you
Dianne

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Dianne C.


Thu Nov 27, 2008 12:17 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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We do see both a neurologist and a psychiatrist. There may be some other meds that would help his moods stabilize. It would be ideal if your neurologist has a psychiatrist he shares patients with. It might be worth asking. I know we had good results. Mother is far less agitated and seems happier-more content now
I promised her years ago she'd never have to go to a nursing home and I'm also trying to honor her wishes
Take care
Sharon

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syt


Thu Nov 27, 2008 7:09 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Sharon,

We see the neurologist in a little over a week and I will ask him about seeing a psychiatrist. We will try anything to keep his outbursts manageable.

Primary care physician and attorney told me I should not make promises I may not be able to keep and to be honest with him. They told him it may not be possible to stay at home till the end. He did not like it but accepted it. They also suggested we look at homes together so he can be a part of choosing where he would like to be if and when that time should come. A few friends are going with us as we all felt it might be a good thing...you never can tell if one of us would need a facility and it would be nice to have a say in where we would reside.

Thanks for sharing your information.

Dianne

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Dianne C.


Thu Nov 27, 2008 9:04 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dianne --
Also, have you contacted your local Area Agency on Aging? They can sometimes authorize (i.e. pay for) some in-home care assistance and respite services. They can also refer you to the state agency that is responsible for administering federal funding for in-home and respite services (I think it takes a while for the state agency paperwork to get processed). Good luck!

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Renata (and Jerome-in-Heaven)


Thu Nov 27, 2008 3:10 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Renata,

Attended a caregivers symposium recently. There were many agencies who presented information on various services. The majority of them you had to income qualify for and we do not meet those qualifications. If the economy keeps up the way it is...we will be able to soon. I am gong to call the Agency on Aging and see if they can offer any help.

Thanks
Dianne

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Dianne C.


Fri Nov 28, 2008 2:57 am
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