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 Fears and Anxieties 
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Fears and Anxieties
My husband is going through some things right now that are scary for him and disturbing to me. He wakes often in the night and walks through all the rooms (he tells me this as I don't hear him get up.) Then in the morning he says things just aren't right. Someone is in here. He walks through all the rooms again, looking in closets, on top of his armoire, everywhere, swearing someone is in the house, or was in the house. He asks if everything on my dresser is where it should be, things like that. He says there are mice in our closet...says it like an afterthought. I inspect the closet with him and show him that there is no evidence of any mice in the closet. Then last night, he's positive our electricity is spiking. We go into the garage and he swears the lights are brighter than they ever were (they're not). I did ask if he would feel better if I had our electrician come through and inspect the entire house and he says no. I ask him to trust me, that the lights are OK. It's worthy to note that I have an extreme paranoia and fear about fire, so this particular delusion on his part makes me a little crazy. Anyway, my patient reassurance to him during that episode and the one in the morning about intruders seemed to settle him, but I'm concerned that, at some point, it won't. Does anyone have experience with this? Does increasing the dose of sertraline or exelon sometimes result in increased hallucinations or fewer? Right now he is on very low doses of both. I understand everyone reacts differently to medications. He has some parkinsonism, but not enough to medicate right now. I'm not looking for medical advice. I just want to know how others may have handled this. Also, I've read in here the effects of anti-depressants and exelon and can't remember if I read where they helped or increased hallucinations.
Thanks for your help, God bless.
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sat Sep 22, 2012 9:45 am
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Fears and Anxieties
When our LO's start seeing,hearing, thinking things it seems pretty bizarre and then we can come to this website and find once again that we are not alone. My husband has insisted someone was trying to break in the house because the garage motion detector light was coming on and off (anything can trigger it) and it may not have even been doing that. Insisted I check the patio to make sure nothing was missing. This went on for a couple of days. He won't sit in his recliner because he insists there are mosquitoes coming in under the back door (there isn't & it is always closed tight) and now sits in my recliner. Two weeks ago he asked why we were out to get someone and why they were out to get us. At that point I had our son come and take his guns...just as a precaution. They weren't loaded but it made me feel better. Right now my husband is more settled during the day and night. He is taking 125 of Seroquel, 4.6 of Exelon Patch (soon to be 9.6) and 1/2 of Sinement 3 times a day. I have started logging any delusions and/or hallucinations in a small notebook as well as a couple of sentences describing how the day and night went. My husband turned 79 on Thursday and was officially diagnosed in April 2012 but am sure it started at least 2 years ago probably longer.

Every morning I check this website out and look forward to connecting with all of you. It is my port in a storm as is veteranaid.org. I hope this eases your mind that you are not alone. I do my best to appease him and sometimes it works. If it doesn't I just do my best to talk about something else until the moment passes. Fortunately my husband has retained his sense of humor and we can even laugh about it a day or two later...sometimes.

Susieg


Sat Sep 22, 2012 10:17 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Fears and Anxieties
Teri and Susie: What you both described here is what my husband Norris has been doing for about 6 months. I just posted a combatitive behavior, this happended last night for the first time. I guess I knew it was coming, maybe last night will be the only episode for a while, but as we all have read in this forum it will probably come. I have no answers, just wanted to say "I know what you are going through"..... And we seem to be going through it quickly, unlike some others. Norris has had symptoms for 3 years at least, but we attributed it to his Parkinsons, until the hallucinations. But he was just "officially" dx late last year. Carol

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Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Sat Sep 22, 2012 10:33 am
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Fears and Anxieties
Carol and susieg, you both seem to be at or near the same level with your spouses that I am with mine. Thank you for your comments. I have been keeping a journal since January, 2012, at first on a daily basis, then in the past month, I have skipped a few days between entries. Mostly because his behavior is just "more of the same." In light of these recent additions, the paranoia and anxiety, feeling that we have intruders (and mice in the house), I will have to get back to journalling on a more daily basis. I can't tell you how much I appreciate your testaments. It's like having a rip cord at the ready whenever you need it. God bless.
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sat Sep 22, 2012 11:59 am
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: Fears and Anxieties
My husband started with delusions and hallucinations and stabilized on medications. In my opinion, one of the best pieces of advice I received from a nurse at the clinic we go to was "start keeping a journal". I did and it has been so valuable to me. Some days if I feel we are having a bad day, I go back to the journal and find out what it was like three years ago. He still has delusions and hallucinations but they are so much milder than they were in the beginning. I guess it helps me to make the most of what has been dealt us.
Mary


Sat Sep 22, 2012 9:21 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Fears and Anxieties
A journal is also very useful for information retrieval--especially if it's on your computer. Many times I needed to know exactly when Derek began Seroquel, how much he was taking, how much Sinemet was he taking then, when he saw Dr. M., etc.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Sep 22, 2012 10:04 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Fears and Anxieties
Along with my journal, I did put together a medical binder for John. It starts with vital information, name, doctor's names/addresses/phone numbers, emergency contacts, and allergies (he's not allergic to much, mostly food, but I listed the drugs that have affected him badly or those that aren't recommended for someone with LBD, circled in RED). It's tabulated with sections for blood work, different tests, etc. The medication section includes samples of each pill he takes and the warnings that come with the prescriptions. Finally, there is a section where I keep notes from doctor visits. This notebook is readily accessible on my desk for anyone that may be spending time with him, or if he's ever taken by ambulance or needs to go to an ER for any reason. Luckily, the ambulance and ER issues haven't arisen. He's not in and out of the doctor's office, nor does he need my constant attention so the book, for now, is easy to maintain. I imagine it will get harder as time goes on and my attentions are needed elsewhere. My sons know how to access the journal also. I'm out of my comfort zone when dealing with this disease, but I do know how to organize stuff, so that's what I do for my sanity. It hasn't been needed thus far, but I'm sure one day it will prove helpful and come in handy.

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sun Sep 23, 2012 12:27 pm
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