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 Tough transition into AL, exalon, seroquel what works? 
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Joined: Mon Mar 18, 2013 9:07 pm
Posts: 7
Location: Los Angeles
Post Tough transition into AL, exalon, seroquel what works?
Hi
I'm new here, this is my first post, so I apologize now for it's length.
My mom is 74 and is now on the locked floor of an assisted living facility (i guess "care community" is the preferred term.) Long story short: I noticed troublesome signs of dementia about 2 years ago (earlier signs were there but harder to recognize apart from her usual eccentricities.) I asked her to go see a neurologist. She refused. She doesn't like western medicine, doctors, meds, etc.. My sister denied it all, said she saw nothing wrong. It became more and more pronounced and I started researchign and tryign to get her to a doctor thinking we could try preventative therapies. no luck. started looking at facilities as her condition worsened (paranoia, delusions, date/time confusion, night/day confusion, doubling people-"capgras" syndrome- asking how she was going to get home, to her real home, her other home, etc...) She finally said she would try one in my town (she lives in San Francisco, I live in Los Angeles). I spoke with social worker at Alzheimer's Association and they were supportive of the move because getting her into care was more important than risk of disorientation. She wandered from that facility. I had to bring her back to SF, got her straight into AL there, but she was trying to elope and they had no room on locked floor. she wanted to go home. But very very confused, going into other peoples rooms, paranoid, etc... Found a place that specialized in behavioral issues and memory care, they said they could keep her safe without locking her up. I said really? Even if she wants to bolt? They felt confident that their psych interns could take her for walks and still get her back in. She was violently angry about being there. Was hitting me, walking the floors with her suitcase. After three days, she hit an intern and ran. Got herself home. They said they'd take her back if she was on meds and was on locked floor. I knew there would be hard transition period with decline in function/cognition/orientation. But I had no way to know what that would look like.
The only way to get her medicated was try to get her to the ER. That proved to be a nightmare, finally got her there, she bolted into street, social work said call 911. So she ended up in ER on a 5150. First time interfacing with a doctor about the dementia. Scored 8 out of 30 on MOCA test. The whole thing was horrendous. Zyprexa, Ativan, and my poor mom was so traumatized. Transferred her to locked floor at the facility. She's been there since. It's been 6 weeks. She had major decline in cognition and it doesn't seem to be coming back. The transition has been really hard. She's on a lower plateau.
In first week I was able to get a neuropsychologist to do eval on site. finally got preliminary diagnosis of Lewy Body Dementia plus Alzheimer's plus depression. Similar low score on MOCA as in hospital. No MRI has happened yet. Transitioned her off Zyprexa and onto Seroquel (low dose, 25mg). Added Exalon patch. Tried walks with interns, but she tried to elope, then no walks for two weeks.
Then she seemed to be adjusting. Stopped waiting at the elevator all day long, stopped carrying her suitcase around, stopped packing and un-packing, started interacting more with residents, being their "caretaker." She's one of the only residents on her floor who can still speak. So she seems higher functioning in some ways, but is so confused and her words are so scrambled, she can't carry on normal conversations. As she calmed down, walks were reintroduced. Yay. She's a walker and a talker, so one on one contact and exercise are big deals. Decided to lower the Seroquel to see if she could go without it. It's been about 4-5 days. Last week she was sounding happier, less obsessed with going home and more involved in the community. But past few days, the agitation has been returning. She had some very lucid moments being very very angry about not being able to go home. Today out on a walk she tried to run again. We were able to get her back into the building with out police/ER visit. Which is good. But she was really angry and really wants to go home.

I am wondering if the Exalon is repairing cognition just enough to make her mad about where she is? (i've read that can happen) Or if it's the lower dose of Seroquel? Or if it's the fluctuation of the disease? Anyone have experiences with this hard hard transition and these drugs? She hates the Exalon patch and tries to get it off. Today doc said ok, let's try Namenda in food because the experience of caretakers putting patch on her was freaking her out, alienating her from them. She thought it was a tracking device.
It's hard to think that the only way to keep her there, in a safe care environment (neuorspych strongly recommends against home care for her) is to have her on anti-psychotics.
I worry that she'll always want to go home and will always be traumatized from being taken from her home. It's so so hard.

Any insights on this transition period? On those meds?

Thanks!!!


Sat Mar 23, 2013 1:56 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Tough transition into AL, exalon, seroquel what works?
sorry i cant help with a answer.. but sending a hug as you go thru this journey!!! hope you can find some answers ,quickly.
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat Mar 23, 2013 5:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Tough transition into AL, exalon, seroquel what works?
I'd be willing to bet that the Seroquel is helping, not hurting. Can't say about the Exelon patch. My husband has been on it for six years now and doesn't mind it on his back. All of the behaviors you list were exhibited by my husband at some stage of his disease. We have found Seroquel to be the best in calming agitation and aggression. Of course, everyone is different but it sounds like Lewy, to me. Hugs and God bless you!

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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 Mar 23, 2013 5:51 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Tough transition into AL, exalon, seroquel what works?
Welcome to the LBDA forums and sounds like its been a rough time for you and your Mom. I thinkt the Exelon perhaps has lifted some of the fog but I am willing to bet that the Seroquel is helping a great deal too. As to her always wanting to go home , in time that will stop as she adjusts to her surrounding more and more. You are finding out what a tough disease this is and I am sorry for that !

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Irene Selak


Sat Mar 23, 2013 6:34 pm
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Joined: Mon Mar 18, 2013 9:07 pm
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Location: Los Angeles
Post Re: Tough transition into AL, exalon, seroquel what works?
Thank you so much for your kind replies cdw, mockturtle and irene. I sure appreciate it. We upped her Seroquel again yesterday after a harrowing few days of intense aggression and a near fatal escape onto a roof ledge. She was less foggy for the week that we tried the lower does, but her aggression and unhappiness intensified, so I think you're right it's probably helping.
This disease is so so difficult.
My mom still has lots of language, remains talkative but none of her sentences make sense. Sometimes I can decode them ( for example: "The congress came with a sticky tool and they pretend to be fuzzy but they're dealing dope in a bubble" I think meant that 'the nurses came to put the Exelon patch on and I didn't like the way they pretended to give me a back rub and then sneak the patch on.')
Most of the other residents on her floor are post-language and don't really speak anymore. It's so hard to figure out activities she can engage in. Her attention span is so short, she doesn't seem to be able to read much anymore (she was a big reader!), or paint anymore, or play games and can barely remember how to play piano either.
I realize this might be for another thread, so I'll try to post it elsewhere, but any insight into what can keep her busy and feeling engaged would be great.
Thanks all.


Sun Mar 24, 2013 7:18 pm
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Joined: Sun Mar 24, 2013 8:04 pm
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Post Re: Tough transition into AL, exalon, seroquel what works?
Hi, I understand your pain. My husband has recently been Dx'd with LBD. The irony is we owned a assisted living only for those with dementia. LBD was never mentioned by anyone to me at least back then. I now know 3 of my clients fit the bill to a tee. What I did learn from my experience has helped me with my husband. Trying to engage someone with dementia creates anxiety often. If they loved an activity, trying to do it, and not being able causes anger. We always suggested: dont asks questions, dont argue, dont finish sentence, dont move quickly or talk excitedly. Books of "old" photos made them happy, over and over again (make copies they may tear, try to eat them etc). Melodic music, especialy older, calms them sometimes instantly. I dont know why this worked only that it did. I wish you and your mom any peace you can find.


Sun Mar 24, 2013 10:22 pm
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Joined: Mon Mar 18, 2013 9:07 pm
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Location: Los Angeles
Post Re: Tough transition into AL, exalon, seroquel what works?
Thank you hdimatteo... that's really helpful to remember about old photo albums and making copies. I'm sorry to hear about your husband. My mom does a lot of walking up and down the hallways (looking for a way out). One good thing is that she tries to care for the other residents on her floor, most of whom are very low functioning. When she does that, it gives her a sense of purpose. Other times she just seems so lost, it breaks my heart. She likes on one one conversation (even though she can't make much sense). I worry about her being bored and that causing more anxiety. It seems like such a strange existence to not be able to do anything.


Sun Mar 24, 2013 11:58 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Tough transition into AL, exalon, seroquel what works?
My dad was put on Namenda and Aricept to help his memory, which it did for a while. But what it also did was it made him more cognizant of how bad off he was mentally and physically. Then he got very depressed, anxious & angry so we had all that to deal with. I requested that he be taken off those 2 meds after 2 mo. because the bad side effects were not worth the "good" results. I told his drs. that I'd rather have him back in a mental la la land than have him in so much emotional and intellectual pain. They did not agree. I fired one. Then I was threatened with a law suit by the other. I hope that if you notice that your LO is overall WORSE off on a med, that you continue to do what you think is in their best interest and fight for them if that's what is needed. Sending a big hug - I know how hard all this is. Lynn

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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.


Mon Mar 25, 2013 3:55 pm
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Joined: Mon Mar 18, 2013 9:07 pm
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Location: Los Angeles
Post Re: Tough transition into AL, exalon, seroquel what works?
Thanks Lynn. That sounds really tough. Hard decision to grapple with! I wonder if we might be facing same thing. I'm waiting for reply from neuropsychologist on this question. luckily her main prescriber, a geriatric nurse practitioner is very open to dialogue about meds and is cautious to overmedicate, seems interested in finding the right balance.
thanks for your thoughts and support!


Mon Mar 25, 2013 4:09 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Tough transition into AL, exalon, seroquel what works?
Yeah, that's why I thought my story might be somewhat useful. I am glad you are working with medical folks who are listening, unlike the people my dad had in a small, rural town where there were NO other choices. These memory meds are certainly worth a try, but not worth keeping the person on if it makes them more irritated or whatever. My dad would get so mad at the slightest thing that he'd slam his hands against anything he could and split the back of them open. His last months were absolute hel! and I could not get these people to change their minds about his meds. If he'd been at home I could have just not given him the meds, but he was a 2 - 3 person assist and needed 24/7 care unfortunately.

Do what you think is best, and let the drs. know about any changes, especially after a new med is administered.

Take care of yourself on this rugged journey! 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.


Mon Mar 25, 2013 4:29 pm
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