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 Emotional turmoil 
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
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Dianne,

I'm so sorry to read about your trials. As you already recognize, the advice and support of folks on the LBDA forums can be invaluable. I second the recommendation to ask about trying a different drug for depression. Lexapro has worked well for my mother, with no side effects, and there are many others available. You might also discuss whether an alternative to Seroquel might be more effective in your husband's case. It is the best drug to try first, but doesn't work for everyone.

And do try to find some therapy or a local support group for yourself. Having someone to talk with face-to-face can be a great relief. I've been able to do that with friends who have parents suffering from other forms of dementia. Our experiences are different, but similar enough to make us especially good listening ears for each other.

Garnet


Fri Nov 28, 2008 10:50 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Garnet,

We have an appointment next week with the neurologist and will go over all of his medications with him.

Our best friend, lost both parents to Alzheimers so understands what we are going through and has been invaluable to both of us...this is the person my husband called and accused of being inappropriate for inviting me to see an entertainer. He took my husband to a movie and lunch once a week to give me a break. When I had foot surgery last year and was in a wheelchair for 5 months he and his wife took both of us to lunch and for outings. They understood and listened to both of us. Now they feel insulted and I don't blame them. I also have a neighbor who understands and she and her husband try to help me as much as they can. I am going to try to see about possibly getting some therapy and will call my primary care physician about it. They have put me on Zoloft to help.

Dianne

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Dianne C.


Fri Nov 28, 2008 11:53 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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Maybe you could print some of the info on LBD and take it to them. Hopefully they'll understand it is the disease and not be insulted. I've had to get the info to a number of family inhopes they'll understand
Sharon

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syt


Fri Nov 28, 2008 5:44 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Sharon,

I emailed my apologies to them. I have suggested to family and friends that they go to this site and read the heartbreaking stories...many of wich are so similar to mine. Many do not understand the ups and downs and think he is faking sometimes...however from what I have read that is also indicative of the disease. I pray they will understand.

Dianne

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Dianne C.


Sat Nov 29, 2008 1:00 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dianne --

I think most of us have had that experience with someone in the family seeing our LOs only during "showtime" periods, and accusing of us of exaggerating, making up this Lewy body thing, etc. So you re in good company. If you do a search on this site on "showtime" you'll see lots of posts on it, and you may want to share some of them with your family and friends.

As for the delusion that you're having a liaison with one of your dear old friends, I sure know that one.

One of Jerome's and my closest friends has been his best friend (of 60 years from high school) and his wife. Because we lived so far apart (CA and MI), the times we got to see them were very special. And twice when Jerome and I went to Poland to see my family, they came and took care of our home and animals for weeks at a time.

The dear wife developed AD, LBD, Parkinson's and an alphabet soup of other stuff. It was very sad. She passed a few years ago, and we continued to be in close touch with the husband. Two years ago, we went to MI to see family and I had a day-long business meeting. Jerome's best friend looked forward to spending the day with Jerome while I worked, and I felt grateful to him as he had been his wife's caregiver until her passing and wouldn't be thrown by anything.

The evening we arrived in MI, Jerome went into a full-blown delusion that I had been at this hotel before with a lover. It was so absurd a thought that I simply didn't want to give it a lot of discussion. As the evening wore on (until 3am), Jerome got crazier and crazier. And then that delusion somehow got mixed in his head with his friend coming to be with him the next day.

And ever since, Jerome has been convinced that his best friend has designs on me. If you knew or saw this gentleman, and knew the devotion he had to his wife both while she was alive and since, it would take you about 2 seconds to know how ridiculous a concept this is.

But Jerome has since refused to talk to his friend, or when he has, it has been with seething contempt. The friend continues to call about once every five or six months to see how I'm doing as a caregiver and how Jerome is doing with Lewy. I had to write and ask him to stop calling as that would set Jerome off for days.

Luckily, because he went through the ghastlies with his own wife, he understands and keeps us in his prayers. He calls my sister periodically just to check on how we're both doing.

If it will help to share my story with your friends, please do so. This really is the disease that is putting this notion in your husband's head and they should not feel offended. Ask them to keep you both in their good thoughts, and you appreciate what wonderful friends they have been.

Hang in there Dianne ... there is only so much you can control.

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Renata (and Jerome-in-Heaven)


Sat Nov 29, 2008 1:24 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Renata,

That describes the situation quite well. It is so embarrassing to all involved.
I find it interesting that the LO seems to attack those who are doing the best things for them i.e., our friends, my son, myself.

I thank you for allowing me to share your story as perhaps they will see it is the disease. I think in their hearts they do know that but when you are attacked by these outbursts it is difficult.

If you read my whole story you will see that my husband also threw my son out of the house and told him never to set foot in the house again. Told him if he ever slept here he better watch his back as he would chop his head off. Such a vicious threat to someone who loved him and did so much for him. This son is the one who has helped us to no end. He took me out to dinner to get me out of the house for a little break which is what prompted the outbrea, did things around our house, moved us into our new house, etc. etc. He is so hurt I doubt he will ever get over it. I have never seen such hurt in his eyes. He was always the one who came for holidays...always our rock. The holiday was difficult without him here at the dinner table. The constant hurt is what is really getting to me and my family is worried for my health both physically and mentally.

Thanks for sharing.

Dianne

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Dianne C.


Sat Nov 29, 2008 2:18 am
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Joined: Fri May 11, 2007 12:54 pm
Posts: 115
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Dear Dianne,

My heart goes out to you as well. I am so sorry that you have to go through this. It is amazing how the LBD patient can switch on and off especially around the people that we desperately need support from. We all know that feeling. At times it feels like we are the ones with the disease and not our loved one. It is hard to try to keep a clear head and not to get too involved in their delusions when we are the ones on the frontlines. You are in my prayers.

Joyce K


Sat Nov 29, 2008 9:49 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Dear Joyce,

I appreciate your kind thoughts and prayers.

Just hearing from others that it IS the disease does make it easier to bear. We sometimes were wondering if we felt so bad that he has this disease that we had spoiled him to the point that he is now taking advantage. From what others have also written that is most probably not the case but the LBD.

I am so glad I finally joined this site...it too is such a blessing.

Thanks again,

Dianne

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Dianne C.


Sat Nov 29, 2008 12:39 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Dear MM,

How fortunate you are that your LO does not direct the attacks at you. I wish I could have those years back...however, we must always live for today and the good Lord willing, tomorrow.
For the first few years my husband trusted me implicitly and together we talked about the disease and worked with it the best we could. He was very positive then. It is the past year that these symptoms have developed and are increasing. We have changed meds several times but I believe it may be time for another change.

Thank so much for your...and everyones support.

Dianne

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Dianne C.


Sat Nov 29, 2008 12:50 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Diane C. I have been reading your posts, my husband, 68 was dx 2yrs ago but looking back it could have started 6-7 years ago. He retired early because he was having some difficulty working. Late summer and fall of 2007 we were living a nightmare of a life. He had it all and constantly accussed me of running around with the men I worked with, my brother and my uncle. We finally had to have him admitted in the psyc. ward to try to get some meds that would help. We were able to get a wonderful geriatric psychiatrist and with some trial and error, has got Frank in a pretty good place. One problem that never goes away is the fact that he thinks there are 3 of me, Gerry, his wife, the young one and the other one. He's always looking for his wife, she seems to dissapear whenever there is work to do or when he needs help or a ride somewhere, she leaves one of the others to do her work. When he asks "where'd she go" I'll say, she is me and he responds "I knew you'd say that because you're always messing with my head. Fortunately, he like all 3 so it doesn't cause a big problem. I know we may go back to the nightmare someday, so we live each day as it comes and constantly adjust to the new normal. It is difficult to be accussed and not able to make an since in the minds of Lewy Body. I find it hard to remember when we were normal, I just know he has the disease but we both suffer from it. Hope your Dr's can find a med(s), that could help your husband with his trust issues. Take Care of yourself. Gerry


Sat Nov 29, 2008 10:39 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Gerry,

Thanks so much for your story. When I read that others have "been there, done that" it makes me realize that our life is like others and is normal in the Lewy world. It is comforting to know I am not alone in this and others understand the roller coaster ride we are on. Usually I can handle things pretty well but lately it really got to me emotionally. Perhaps due to the fact that I see him changing/failing again, loss of my mom, the holidays...maybe a combination of all of them. My husband is 70 and was diagnosed in 05 but I feel he had it at least one to possibly three years prior to that. Your husbands response reminds me of some of the responses I get. They can be clever at times. How right you are when you said "he has the disease but we both suffer." That says it all.

Thanks again
Dianne

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Dianne C.


Sun Nov 30, 2008 1:59 am
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Joined: Wed Nov 12, 2008 12:13 am
Posts: 18
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Hi, Diane, my name is Pauline, and I just read your post. I am sorta new to this group and still finding my way around. My husband has LBD and was first diagonist in 2002 at Mayo in Jacksonville. And I can understand how frustrated you feel. Bob sometimes gets difficult and is very hard not to take it personaly as some say. He is on aircept,lexapro,nemenda,carb\levo and comendin for mechincal aurtoic heart valve. Lately there has been a change, One thing good we have a family business and we go there for a few hours and that helps, sometimes he is better there. I also try to think back to the old times and look at pictures, we just have to keep those happy,good memories with us. Will be praying for you and appreciate you sharing, it helps a lot. Love Pauline


Sun Nov 30, 2008 11:04 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Pauline,

I am new to posting on this site also. I did read much of the information prior to joining...sorry I didn't join sooner. All of the folks are just wonderful! It helped get me through a very rough time. Knowing what we are going through is the "norm" for LBD makes it easier. At times I was wondering if it was just us. When you hear some of the other stories you are thankful. Usually I can handle things pretty well but we went through a terrible time in July/August and again a couple of weeks ago. He is out of that "spell" now. Yesterday and today he was very confused, felt weak, etc. We have the neurologist on Wednesday so perhaps he can shed some light on what is going on. Primary care Dr. says his physical health is really good.
We, like you, had a family business. I kept it up till last year but it became too much for me with caring for him too. I may do some limited private label business this year. Depends on the time available. We both enjoyed it but he could do very little the last year. He kept mixing things up and it took me twice as long to straighten things out again. lol
Thanks for sharing and I wish you and Bob the best. Will keep you in my prayers as I do for the rest.
Dianne

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Dianne C.


Mon Dec 01, 2008 2:39 am
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Joined: Sat Oct 27, 2007 9:16 pm
Posts: 165
Location: tennessee
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Dianne, I am so sorry for your trouble (such an inadequate word to describe what you're going through). I've had many of the same issues, showtime causing phone calls "Why is he in this facility?) Abuse etc. You've been reading so you're probably aware of the problem with treating the Parkison's part and worsening the cognitive part and vice versa. So I'll just ask, is the levadopa essential and could it be part of the personality change? Once when my husband became rigid, the psych gave me a prescription for sinemet and said, I'm leaving this up to you, if he needs it give it to him, but he'll be more confused. Antidepressants: celexa works well for my husband. The best thing that happened to us was when my husband spent three weeks in a psych facility. There the doctor and his staff saw him at least daily and fine-tuned his medicines. I also suggest you find the article on violence (I would provide but don't know how, Robin could you do that?) I am concerned for your safety. I don't want to scare you, cause you have too much going on already, but I believe a realistic approach to this would be good for the son and the friends who have distanced themselves. How dare they abandon you at your time of need! Educate yourself, then educate them. Accusations: my husband thinks I'm having an affair with the psychiatrist. Counseling for yourself: I have a counselor just for me who has helped me with the inevitable guilt and am so grateful. I've gone to the psychiatrist twice by myself (don't tell my husband!) and last time he said, "it does me no good to see your husband. At his next appointment, don't bring him, your reports and the facility nurse tell me more than talking to him, and this way I can help you get through this. " "Fear not, neither be dismayed...God will strengthen you and help you, He will uphold you with His righteous right hand." Isaiah 41:10 And he will. Melinda

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Would have despaired...


Wed Dec 03, 2008 12:05 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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The Geri Hall, RN, article on protecting yourself from violence is here:

http://www.centeronaging.uiowa.edu/arch ... olence.pdf


Wed Dec 03, 2008 12:53 pm
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