View unanswered posts | View active topics It is currently Fri Oct 24, 2014 8:18 am



Reply to topic  [ 25 posts ]  Go to page Previous  1, 2
 Another ? about seroquel 
Author Message

Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: Another ? about seroquel
Irene, thanks for being honest that being asleep a little more is better than being awake and agitated all day. I have struggled with that concept, feeling guilty that I might be wishing that for me instead of her. But she is so miserable and angry when she is in an extreme agitation. My sister, brother and I who share care-taking are just figuring out how to process the different scenarios in which we find ourselves and it helps to know how others have handled similar situations.
Debbie
P.S. I realize how lucky the three of us are to have each other share caretaking. When I read the posts of members who are virtually in the lbd drama 24/7, 7 days a week, my heart breaks that there is so very little relief for those caretakers. Recently my sister went to Maine, and I was with my mom 17 days with only 3 hours away from her. My brother did come every day to help get her from the bed to the chair, and at night to help with the bedtime routine. I was so worn out at the end of that period that I was struggling to stay sane myself. I am so blessed to have family support and wish that support for everyone.
Those members who urge full time caretakers to get help know what they are speaking about. The time I have away is critical to my own mental and physical health.
That is my Christmas wish, that all lbd caretakers get some sort of respite.
Debbie

_________________
Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Sun Dec 19, 2010 4:34 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Another ? about seroquel
Deb, you are so lucky, and unfortunately I think in the minority. So many people do all or a huge percentage of caregiving themselves, with little or no input from other family members. Those same family members seem to also correct the person who is doing the caregiving, adding insult to injury! 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.


Sun Dec 19, 2010 5:55 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Another ? about seroquel
Debbie,
I have always tried to look at how my Husband would have wanted to be, he was such a quiet man in his before LBD days and he did a complete turn around after the disease that I know for a fact he wouldn't want to be agitated and combative, I also knew it was out of his control, that the illness made him the way he was but honestly I didn't always know that.

I have many opportunities to talk with LBD caregivers on the helpline and many are from children caring for a parent and If I tell you how many don't agree with the parents care between siblings so your situation is not really that common where you are agreeing to the care for your Mom I imagine it makes life a bit easier for you!!

_________________
Irene Selak


Sun Dec 19, 2010 6:45 pm
Profile WWW

Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post Re: Another ? about seroquel
Bernie -

My Bill was on 400 mg of seroquel for 2 years before he was dx'd with LBD in Oct of 2008. His psychiatrist kept telling us that he could go up to 800 mg safely. We don't see him anymore. He now takes 100 mg at bedtime.

I wanted him put on Clozapine to get rid of his horrible hallucination (this was before his dx of LBD). But the psychiatrist we were seeing at that time never got around to that drug. Adding namenda finally stopped the 2 straight years of hallucination, illusions, & delusions.

If Fran is on Medicare - it is my understanding that Medicare will pay for a nurse to come to your house to draw blood once a week. That would be a huge help for you.

Karen


Sun Dec 19, 2010 9:12 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another ? about seroquel
Medicare will pay for short-term [post-hospitalization] blood draws but only Medicaid will pay for blood draws on an ongoing basis. Unless she is on Hospice care, of course.

_________________
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.


Sun Dec 19, 2010 9:22 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Another ? about seroquel
My husband has taken Clonazepam for about 30 years. For him it has been extremely effective in managing his REM Behavior Disorder. Because the psychiatrist following him for this condition is very aware of the possible connection between RBD and LBD my husband was diagnosed promptly and correctly. We were referred to a research behavioral neurologist at the Mayo clinic. He slowly and very patiently went through the process of designing and refining a drug combination for my husband. It took about a year, and includes 5 medications. The combination has been very stable for several years. It includes Seroquel, 100 mg taken just before bed. He also continues to take the Clonazepam. While Clonazepam might be “big guns” for some sleep problems, I believe it is standard treatment for RBD, and many LDB patients also have some RBD symptoms. We are extremely fortunate to have highly knowledgeable health care providers who can weigh the risks and benefits of possible treatments.

We try very hard not to have my husband take his night pills before he has his hearing aids out, his teeth brushed, and his pajamas on, because he has about a ten minute window before he turns into a temporary zombie and we want him in bed before that! The other night he took the pills earlier and when I discovered it he looked at me sheepishly and said, “I forgot.” We joked about the likelihood of me being able to carry him to bed (not!), removed his shoes and belt, pushed the recliner back, threw a blanket over him and he slept right there. By the first time he woke for a bathroom trip he was fine to walk into the bedroom and change to pajamas.

I know that reactions to Seroquel are highly individual. I can’t imagine giving my husband any during the day but we determined that by some trial and error under the supervision of a specialist. Other timings and other dosages (or none at all) might be better for other people.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Dec 31, 2010 4:58 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Another ? about seroquel
JeanneG,

Welcome to the LBDA Forum, though sorry you've had to join us here.

Wonderful that you had a knowledgeable psychiatrist aware of the RBD and LBD connection.

I'm the user of the phrase "big gun." I wouldn't have used that term in association with Klonopin (clonazepam). But I do use it in association with Seroquel (quetiapine) when this medication is used to help with sleep. The standard practice is that other medications are tried before an antipsychotic is used to help with sleep...."other medications" such as Klonopin, which is first-line treatment of most sleep disorder specialists.

Who is the neurologist your husband sees at Mayo?

Robin


Fri Dec 31, 2010 5:10 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Another ? about seroquel
Thanks Robin. The sleep specialist Carlos Schenck referred us to Brad Boeve. The two of them communicate regarding my husband's case and both of them are available to me by email. We are very lucky! I don't know that Seroquel was prescribed only for sleep problems, but considering the effect it has on my husband, Coy, bedtime is certainly the best time for him to take it. Dr. Schenck had us try Melatonin (along with the Klonopin Coy had been on for years), and that was not helpful for him. Dr. Boeve said he would try medications for one symptom at a time, and asked which one we wanted to start with. Sleep problems were at the top of my list, because I knew I could not continue to keep Coy at home unless we could solve that issue. Coy is still at home, seven and a half years after onset of LBD.
Jeanne

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Dec 31, 2010 5:54 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Another ? about seroquel
Wow! Schenck and Boeve. Very lucky indeed!


Fri Dec 31, 2010 6:14 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Another ? about seroquel
Not only are they both experts in their fields, but they are both compassionate people. The patient is never just a disease to them. Some researchers are great with data but not so good with people. Schenck and Boeve excell at both.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Dec 31, 2010 6:34 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 25 posts ]  Go to page Previous  1, 2

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr