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 Newbie with Question 
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Joined: Mon Mar 01, 2010 5:33 pm
Posts: 7
Post Newbie with Question
First time post here so I hope I am in the right location. My husband is in early severe dementia. Within the last two weeks we have seen noticable deteriation. On Friday I went to the dr. for my normal appt. but we talked more about my husband than me. He has been waking up at 1, 2 or 3 a.m. a few times a week and I have a difficult time getting him back to bed. He is on Exelon. The dr. gave me a script (.25) for Seraquel to help him sleep. I think it has been helping to a degree. My question relates to today. He was so very confused especially about who I am (not unusual) and where we live (we have lived here 48 yrs.) He has never been this confused before. I don't know whether it is a continuing downhill or if it is the Seraquel. Anybody have any similar circumstances? Thanks for any help you can offer.


Tue Dec 14, 2010 9:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Newbie with Question
Hi Sunny - welcome and sorry for your need to be here.
This type of question will probably get more response if you post it under either the Symptoms category or Treatment Options category. Most folks don't look at the Welcome category since it is mainly administrative info.
You'll find lots of discussion about Seroquel and other meds in the various posts, especially under Treatments.
As you will see, people with LBD react so differently from one another with the various meds. You'll see that some people have had good luck with it, others not. It's a good idea to have your LO (loved one) only get 1 new med at a time so you can look for adverse reactions. If they add more than 1 at a time, you can't tell which may be having adverse effects. You'd think this would be obvious to the drs., but there have been lots of us who've experienced 2 or more new meds added at the same time, and then it's hard to sort out what's working and what's not.
I'd highly recommend you read through as many of the posts as you have time for, concentrating on those topics most important to you right now. There is so much info. here and you will get lots of moral support here as well. Good luck and stop back here often. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Dec 14, 2010 10:19 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie with Question
Welcome!! And what a great question! It's so awfully hard to weigh the effects of medication against the progressive decline of Lewy! My husband's doctor has increased his Seroquel [he only takes it at bedtime] over the past few months to decrease hallucinations and help him sleep. It has worked pretty well--he sleeps about 6-7 hours now-- but I have also noticed he is more disoriented, especially in the evenings. But, then, he was already disoriented and delusional and maybe would have shown the same decline, anyway. I cut back on his dosage and found no difference--his confusion and delusions still seem to be getting worse. I wonder---if the Seroquel was causing it, wouldn't the confusion be worse in the morning than in the evening, since he only takes it at bedtime? Anyone else have an answer to this? These medication issues are so difficult in this disease!!

_________________
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.


Wed Dec 15, 2010 1:14 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Newbie with Question
What sort of deterioration have you seen in the last two weeks? "Just" the confusion or something more? Lightning-fast deterioration brings to mind CJD (Creutzfeld-Jakob Disease).

Is your doctor also your husband's doctor? Generally speaking, I think it's best if Seroquel (quetiapine) is prescribed by a neurologist or geriatric psychiatrist. It's a rather big-gun to take out to help with sleep, unless other medications have been tried. I suggest contacting your husband's neurologist immediately.

Are you aware of the side effects of Seroquel and the FDA's black box warning? If not, read up on this at a website such as rxlist.com.

Normally we don't see these sorts of memory problems in early LBD. Does your husband have an AD diagnosis?


Wed Dec 15, 2010 1:34 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie with Question
Robin, I believe she said he had 'early severe' dementia.

_________________
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.


Wed Dec 15, 2010 1:36 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Newbie with Question
What does "early severe" mean? I'm not sure I know anyone with LBD where it could be described as "early severe."


Wed Dec 15, 2010 1:43 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Newbie with Question
Dear Sunny Newbie:

The fact that you and your husband have lived in one house for 48 years leads me to conclude that you must be close to my age. Your husband's symptoms sound like mine. At the beginning of 2009, my husband was getting up several times a night at 1,2, and 3 am. He had delusions and hallucinations that kept him active during the night. He was, as you say, confused about who I was and where we live. (He still is!)

We finally found a neurologist who gave my husband Seroquel. We started with 25 mg and he has been taking 100 mg every night since August of 2009. He also wears a condom catheter at night so he does not need to go to the toilet. With that medication and the catheter, he sleeps well during the night. I'm grateful.

My husband has become progressively confused but I do not think Seroquel is the cause of that confusion. I believe it is the disease.

I wish you well and a full night of sleep. As care giving wives, we need it.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 15, 2010 6:53 am
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Joined: Mon Mar 01, 2010 5:33 pm
Posts: 7
Post Re: Newbie with Question
Ah, thank you so much everyone. Thank you especially Leone....it so helps when someone else is experiencing the same thing and understands. I too think it is the progression of the disease but I will continue to watch for changes. I am journaling when I see changes in him and will try to keep track of any different or unusual changes. With the exception of just one night, he has slept through the nights. What a difference it makes for me. I can handle things so much better.

Sorry for placing this in the wrong slot. I will watch next time. (Still learning!) :P


Wed Dec 15, 2010 8:45 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Newbie with Question
Like you, I questioned the effect Seroquel was having on confusion and delusions. So, with his doc's permission we decreased it by one half of one of the two pills he was taking, and I found he was even more confused. The delusions came back in spades and when I put the seroquel back to where it had been, 50 mg at bedtime, the confusion receeded. Pat. Del, too, becomes increasingly confused at the end of the day. I am told it is a combinatin of getting tired from the activities of the day and the last bit of seroquel leaving the body. Check the half life. But then you probably have.

Hugs to all. Nan


Wed Dec 15, 2010 2:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie with Question
Nan, I'm sure you are right. Sigh! I think we always want to blame the medications because we don't want to face the obvious decline in our LOs. :cry:

_________________
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.


Wed Dec 15, 2010 4:07 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Newbie with Question
Every little event has the possibility of taking them further down the Lewy road. Last night at 10:30 Del got out of bed, went to the bathroom and fell on the way back. I can't keep him in bed at night. He earned a visit from the EMT's and a trip to the ER. 9 staples in the gash on the back of his head..a separated shoulder and a broken clavicle. He's home and there has been no sleep and his confusional state has been extreme this morning. Right now he seems to be calming down a bit and is starting to be able to follow a simple diretion so I think it will be okay.

But no matter what happens, I notice he never really returns to pre trauma levels. There's always a dip down even if it isn't apparent to others.

Put a brave face to it. How is your search for a respite bed going?

Smiles, Nan


Wed Dec 15, 2010 4:36 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: Newbie with Question
Nan, I'm sorry about the fall. You can't put him in a bubble, neither can you pad lock yourself to him with hand cuffs so you call for help and after everything settles, you continue. I repeat, I'm sorry.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Wed Dec 15, 2010 4:58 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Newbie with Question
Oh Nan, I'm so sorry to hear that Del fell. I dread that.

Dale has been wandering around with his walker for about an hour this afternoon. I finally suggested that he was going to get tired and fall. He said, "What I want is a flat mattress."

Earlier, he wanted a 'joint bank account.' I told him we already had two. He said, "Am I married to you?" When I said, "Yes," he said, "Oh, good."

It has been like this for a week now - ever since last Wednesday when he fainted in my arms. His mind is gone.

I so much crave intelligent conversation. (I know.... I'm learning what some of you have been going through for a very long time.) I feel as though both of us are like animals imprisoned in a cage. Nothing we say to each other makes sense. It's no wonder we roar once in a while. :cry: What else can we do?


_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Dec 15, 2010 5:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie with Question
Nan, how awful! We've had the EMTs out eight times in six months and, praise God, Derek was never hurt with his falls. Most of the time I was with him and just eased him to the floor when his knees buckled. [That's the main reason my back is strained]. He incurred one bruise to his arm a few weeks ago when he fell in the living room onto a basket in the floor next to the bookcase. We actually got him to his feet that time but it's a miracle he didn't gash his head open.

I'll address the respite in the other thread. Thanks.

Leone, animals in a cage, as you say, or maybe prisoners who speak different languages. I don't know, but communication is quite impossible. I touch him and caress him more just to communicate my caring but words have no meaning--or often the wrong meaning--to him.

_________________
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.


Wed Dec 15, 2010 5:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Newbie with Question
Nan - I am so sorry about the trauma from last night. I hope things settled down some today in your household.
As many on here have said before, and people reiterated at our caregivers' group this morning, any trauma or illness will exacerbate the dementia symptoms, and the person never gets back to where they were prior to the incident. One woman was talking about her mother and how, every time she gets a cold, her dementia worsens and she never gets back to the pre-cold "normal."
Leone - at least he said he was glad he was married to you!
This is a tough journey folks. Hang in there. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Dec 15, 2010 8:47 pm
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