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She's on Xanax & Seroquel since mid-Sep. It's a daily event now and I feel like I'm losing my mind. She's flashing back to two different houses from her childhood, (also located in S. Philly) and wants to go NOW! I had to physically stop her Saturday because it was too late to go out. I have taken her out as a last resort but don't like doing it. Have tried calling siblings to interrupt the behavior but that isn't always an option.On Xanax & Seroquel since mid-Sep Many thanks for your help! Donna

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DonnaJeane57 - It helped me an awful lot to watch the series of Teepa Snow videos on Youtube called "Making Visits Valuable". It's got so much more content than just how to visit with a dementia patient. I think there's 12 videos that run about 10 minutes each. Also watch the one called "Gems". Anybody who starts caregiving an elder with any kind of dementia ought to get a free set of these CDs.

These will help you join your mom in her world, and have some tools at hand to discern the situation beyond what's just on the surface.

There is a sweet lady on my mom's unit in dementia care. She is completely unintelligible, but that doesn't stop her. I have helped her get unstuck from hallway corners before, and she is quite the chatterbox. But, she's pleasant, sweet in demeanor, and willing to be led to another area. I just compliment her shoes, clothes, hair. But this is easier for me because I'm not living with her.

Maybe accept that you're just not going to understand, but give mom feedback as if you do to keep her calm. This is when some powers of telepathy sure would help! But, like with small babies, we have to guess. Hungry? Wet? Constipated? itchy? tired? bored? something poking? foot going to sleep? Or failing that, it could be that she doesn't even know that she's talking and it's just nervous system activity routed to the wrong place. It's OK if you just interrupt with another topic or activity to disrupt the flow.

This problem will go away, but there's no way to know when. Better gird up in case it takes a long time.

I wouldn't try to take her out to the houses of the past anymore. See if mom is entertained by letting her watch the Teepa Snow videos with you!
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Not being able to understand her when she's trying to tell you something thats obviously important to her.... that must be tremendously hard for both of you. I wish I could give you a magic formula or at the very least some good advice but I can't. I can so understand frazzled in a situation like that. Lots of rest and some peaceful solitude is what I wish for you dear. You need it and you deserve it.
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You are probably right, Amy. Just so mentally exhausting trying to figure out most of my mom's ramblings. They seem important to her, so I'd like to respond but usually cannot. Except when she gets her handbag and wants to 'hit the road'! Guess I need to pray, "this, too, shall pass."

Thanks for your post, Amy
Donna
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donnajeane, don't let it wear you to a frazzle. Try the acceptance route, "This is what we are going to talk about for the next 3 hrs, 3 days or 3 weeks" because if it weren't for this obsession, wouldn't it be something else?
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Hi, HelpnGa . . . thanks, but, yes, we walk by one of the houses all the time, since it is down the street from where we live now - my long-deceased grandmother's home. Problem is my mother sometimes wants to go in, and I don't want to bother the new renter. Other times, she walks right by it.

These "conversations" are wearing me down to a frazzle. Been having one off/on for the last couple of hours as I type this; at least she's not agitated. However, I cannot make a lot of sense out of her speech other than those few words: mom, dad, home, etc.
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I haven't read all the responses so I hope I'm not just repeating things you've already heard. I'm not sure of this would work in your situation, but where we live, when my mom went on and on one weekend about going home, finally daddy put her in car and told her to tell him where to drive. Amazingly she took him every turn right back to their house and was happy to be 'home'!!! After that she calmed down a lot about going 'home ' Now when she says she wants to go home we'll tell her something like that's tomorrow when we go, or we promised to watch this house tonight (if you have a pet that's a great reason, pet-sitting). I wonder too you mentioned 'they' are waiting for her. What if you 'call them' and say she's having a sleep over with you tonight so 'they' know she's safe?
I do understand your struggles. My mom has very hard time expressing her thoughts and I think sometimes just says that one fall back of going somewhere bc can't say what she wants to say. Usually if I say something like that's tomorrow or next week when we go there, and then try to focus on something else it seems to work, at least awhile. Hope this helps!
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Donnajean: I am very sorry to hear that. Wishing you well.
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Hi, everyone . . . llamalover & partsmom . . . unfortunately, my mother's long- & short-term memory are really sketchy. Too late to get any 'real' info from her.

I also regret not interviewing my maternal grandparents about their life in Italy before coming here to the US. Of course we had conversations, but it would have made so much sense to document it while they were still here.
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I wish I had taken the time to get more "old" stories from my parents and other elders. You could use whatever they want to do or wherever they want to go as a "hook". Even ask questions like "Is that the yellow house on the corner?" "Wasn't that place down by the river? Did you ever get salmon coming upstream?" "I don't recall much about your mom. Did she have a favorite cookie recipe?" (And write down the stories!)
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Elders' long-term memory will be very good. Short-term not at all so maybe you will have to trick her (hard as that is) and say you're going to the Olde time ice cream shoppe, say.
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I have no experience with Xanax but when my Dad took Seroquel he turned into a basket case. Very agitated, very anxious, made no sense...all to the extreme. Doc took him off the Seroquel. Sorry but I don't remember what they prescribed next. I only share because sometimes a change in medication can make a big difference.
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Glad it helped Donna J. Less is usually better in most cases, and the "wanting to go "home" will stop as the disease progresses. Hang in there! Ferris
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Hi, twopupsmom . . . I wish I had an answer about the tissue hoarding, but I've only just started dealing with that!

Earlier this week, I was helping her get ready for bed and, low & behold, I find a piece of toilet paper in her bra!! It wasn't there for stuffing purposes, either! She's also taken toilet paper down and I find it (dry, thank goodness!) in wads, or small pieces on side tables.

Gosh, every day it's a new issue to deal with. Thanks for posting about your husband's meds.

Donna
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I deal with your same situation with 84 year old husband, needs to go home, needs to get back to the Navy every day, most of the day, my answer, always the same, stops it, ok honey your right lets get right on this I'll go get things ready to travel and we will be on the road tomorrow morning early. It stops it, then the only question is what time will we leave, 5 am is the answer. He takes Seroquel 25 am pm & if needed mid afternoon if agitation is beginning, I just put it in his cup of coffee, it's done. With the am dose Lexapro, at night with the S is Trazadone 100mg, sleeps like a log for 12 hours. His obsession is folding tissues, paper towels, toilet paper and stuffing his pockets until you can't even get his collection out at night so if anyone has an answer for that please chime in. Also on Namenda & Exelon patch 13.3
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Hi, Caregiver6 . . .glad your dad has had good results with his meds.

My mom also takes Namenda XR - started back in March. She's been on generic Aricept for quite a few years. I held out putting her on those meds - as well as the seroquel/xanax combo - but it was necessary. Just hoping the benefits outweigh any side effects.

Thanks for posting -- hugs back to you!
Donna
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Dad was 1st put on Donepril when he was seeing little green men, monkeys, people sitting on every seat in the livingroom, etc.... 2 days on it made him aggressive... two weeks later he was put on an Amazing drug called Namenda. He does Not see all the 'special things'. He is able to sleep and function daily with much less assistance. He really seems like himself again. Hugs!
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Hi, Ferris . . . thanks for your note. I did cut the xanax pills in half since the first time I gave it to her it zonked her out. Been trying to figure out the best formula for her since the instructions are ".5 mg every 8 hrs as needed" So far, she's better with .25 mg in AM with her regular meds and.5 (the drs. Rx) around 1 PM. Seroquel is set dose, . 25 mg 2x daily: mid-afternoon (3 PM or a little earlier, if necessary) and bedtime.

Mom's still telling me she has to go 'home,' but it is less intense and she is more agreeable when I distract her. The agitation appears to have diminished (fingers crossed!).

Kathleen . . . thanks for posting the info on powerfultoolsforcaregivers. You're right that we need to know which resources are out there to test what works. Thanks again! Donna
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Perhaps this combination is actually exacerbating her agitation. Ask her doctor (if you have MPOA that would be great) to lower or discontinue one of the drugs (Xanax) and see what happens. With agitation, try giving her some protein or whatever she likes to eat.
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Hi everyone - I would also like to suggest looking for this series, which is being offered by Councils on Aging and Elder Services all across the country: powerfultoolsforcaregivers.org
Check it out! We nee all the support we can get.
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Sandwich, I know, right? Wow. lol
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Could have at least sent in a squad of guardian angels. Or a couple really big ones.
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And asking for divine intervention? Oh yes, yes and amen. One night after a particularity rough day walked out onto my mom and dads boat dock, crossed my arms, looked up and said, "Ok God would you like to tell me where you were today!!" I'm glad he has a sense of humor.
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Thank YOU Donna, I've had a good time on this post and its been inspiring as well. Good luck to you. 😉
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Hi, sandwich . . . gosh I laughed out loud about your mom calling the newspaper AND the governor!! Stop the presses!

You are so right, Amy, about bracing for 'it' -- I find myself asking for Divine Intervention (and patience, right NOW!) quite a bit these days. Great that you found something for your dad to focus on. Excellent retort by him on your roadkill sighting!!

Loved reading all of your stories and suggestions! Thanks again!
Donna
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Sandwich, busy blankets should be in every nursing home, what a great idea! These wonderful souls seek comfort and reassurance and a busy blanket could help with that in the same way that a blankie comforts a baby. I wish I'd thought of that for my grandma, she would have picked lint off of one all day, all night and probably folded and unfolded it a zillion times.
And you know what they say about idle hands... :-)
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I should have mentioned that mom's threats to call a cab were hilarious to me (on the inside). She also said she was going to get on a bus. This woman has never been on a city bus or used a taxicab once in her life. Ever.

Mom's dementia unit keeps a laundry basket of washcloths/flannels in the dayroom for folding and unfolding.

Mom has stopped doing this lately, but she used to be a picker. She would pick at her nails, her skin, the cat, the sofa, whatever was near her hand that couldn't get away. It got better with anxiety meds. She had sores on her hands that could not heal from the picking. It was something else to have to witness. If meds hadn't helped this, I had a busy-blanket planned.

I made one for my husband's grandmother. It was a lap quilt of different textured materials in big rectangles. At the corners of the blocks, I used novelty yarns to make pom-poms that could not be pulled apart. It could be rubbed, picked, petted, pulled, and pooped on and it would come out OK from the wash.

Keeping the lights bright in the middle to late afternoon into the evening is supposed to help with Sundowners. Nobody know exactly why, but it could be that their brains misinterpret lower light as something else.
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LadeeC that's great advice, "lets finish the laundry first" and unfolding wash clothes. My grandmother needed that kind of diversion. She was a clean freak all her life and in her dementia she would spot a piece of thread on the floor and go through extreme effort to pick it up and she didn't want anyone to help. :-) I think the laundry idea is fabulous for the ladies. I found an analog clock that doesn't keep time very well and since one of my dads obsessions is clock accuracy he fiddles with it and has taken it apart and put it back together several times. Some days he heads straight for the clock as soon as he wakes up. Things like that would suit the gentleman.
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A couple of my other favorite distraction techniques:

"Let's wait until after we finish the laundry [statement, not question - important distinction. Giving choices isn't always the most useful option] Would you mind helping? I've got all these washclothes I need folded." (And if I don't have any fresh from the laundry - a rarity, actually - I've been known to grab a stack of them and UNfold them, just to give her something to do.)

She loves brushing my hair. "Be right back .. need to finish the dishes and when I'm done, I'd love for you to brush my hair." (be right back - a delay tactic that often helps disperse the anxiety, and brushing hair is really relaxing - for both of us). And then I make sure to *immediately* suggest bedtime (or other activity, depending on the time of day), "It's bedtime, let's go brush our teeth and stuff."

As caregivers we end up having to be realllllly creative with solutions. Good luck with finding your own!!

LadeeC
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Hahaaa that's awesome yogagirl. My dad (pre-dementia) was the wittiest man I've ever known and I mean that seriously. He had a natural gift of humor and could make people laugh at the most mundane things. Recently, I was taking him to a doctors appointment and there was a dead skunk in the road, it was messy to say the least so I said, "Oh dear" as I careened the car around it and for a split second my dad was himself again and he said, "No Amy that's not a deer, that's a skunk." :-)
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Thank you Amy. Laughter is the best medicine! Which reminds me, a great distraction is some nutty, funny, story. Example: I tell them that the spider next to their front door gave me a dirty look when I arrived. They laugh and I can use it over and over because they can't remember.
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