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 Weird "projects." Is this a form of hallucination? 
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Weird "projects." Is this a form of hallucination?
My mom was diagnosed with LBD just over a year ago, but to our knowledge, she's never had a hallucination. However, she is quite nonverbal now, so who really knows? But she's begun to work on weird "projects." Her latest was to attach a wad of dental floss to a pencil with a bandaid. Since then, she's been trying to further reinforce it with a stapler, but she's having trouble with that. The problem with this is 1. She can't communicate what she's trying to do, so no one can really help her with this. 2. The stapler isn't working with the round, wood pencil, yet she's persistent in her attempts. 3. Her attempts have been during the wee morning hours, waking up my dad who desperately needs his rest. If she's up, he has to be up because she's a fall risk (and a wandering risk). Does this sound like a hallucination maybe? Do your loved ones with LBD do this sort of thing?


Tue May 31, 2011 6:10 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Weird "projects." Is this a form of hallucination?
Probably not hallucinations but possibly connected to delusions. 'Weird projects' are part and parcel of Lewy, I think. Save yourself some insanity by not trying to figure them out. If they are dangerous projects [as my husband used to do, such as those involved with automobiles, electricity and plumbing] you may have to take action. Otherwise, it's best just to ignore them, in my opinion.

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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.


Tue May 31, 2011 6:28 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Weird "projects." Is this a form of hallucination?
Mom has started a few similar things, though I wouldn't call them projects. Recently, we took her out for lunch. At a point late in the meal, she started piling her pasta on top of her bowl of fruit. She also tends to pour Coke or water on just about anything. My first reaction when these things started was to try to correct her. Now I find them amusing. I actually look forward to seeing what she'll do next.

One thing I might mention to you about your father's situation. Though I used a hospital visit of Mom's as my "reason" for moving her to a dementia unit, I have to admit that it really was because I was exhausted. Like your father, I wouldn't sleep for fear of Mom falling or wandering. I then went to work full time (using senior daycare). It was just too much. At some point, you may need to be the "heavy" and convince your dad that it's time to take care of himself. It's hard to give up being the primary caregiver of someone you love, but necessary for survival. Actually, you still remain the primary caregiver - you just get a good night's sleep.

Best wishes,

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue May 31, 2011 8:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: Weird "projects." Is this a form of hallucination?
Or at least a better night's sleep more often. The worrying doesn't stop, but the hands on care taking becomes someone else's responsibility. Just don't let her go to sleep with a cell phone in the bed so she "butt dials" the phone without knowing it. Sound like that might have happened to us?! 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.


Tue May 31, 2011 8:50 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Weird "projects." Is this a form of hallucination?
Sandwichmom, your post reminds me of this touching video: http://www.youtube.com/watch?v=43XWaIlx3Zc The mom there seems to have a little project going with a roll of paper towels and other items.

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


Wed Jun 08, 2011 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: Weird "projects." Is this a form of hallucination?
sandwichmom,
Have you considered medicating your mother so that she sleeps through the night? Otherwise, is she practicing good sleep hygiene (limited naps during the day, exercise during the day, no caffeine after 2pm, etc) such that she is more likely to sleep through the night?
Robin


Thu Jun 16, 2011 9:02 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Weird "projects." Is this a form of hallucination?
My MIL will act out doing a crossword puzzle - even if there is no puzzle on the page. :lol: She looks like she is filling in the puzzle, but her pen doesn't even touch the paper. Oh, well. If she's happy then I'm happy.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Thu Jun 16, 2011 11:41 am
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Weird "projects." Is this a form of hallucination?
Donna, I want to know ... does she get the answers all right? Maybe I'll start doing them that way. Less erasing for sure!

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


Thu Jun 16, 2011 7:40 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Weird "projects." Is this a form of hallucination?
She is on so many medications that I'm afraid to ask for any more right now, especially since I don't think my dad is able to manage them as well as she needs them managed. He's afraid of hurting her feelings by taking that control away from her because she was head floor nurse at our city's hospital during her career. We've had several discussions about it, and he just says he'll watch her more closely.

She was taking Benedryl and Tylenol PM quite regularly before we received her diagnosis and were told she shouldn't do that. We told her she had to stop taking it, but I'm not sure if she's "obeyed." She was on Ambien for awhile to get used to her CPAP machine, but she's off that now, I believe. She is sleeping more during the day. Dad tries to get her to exercise each day, but she will often say she doesn't feel like it. She is willing to go to a physical therapy class twice a week, though. She doesn't drink caffeine after 2 pm.

She's not getting up every single night, but only when she gets a persistent idea in her head. Dad says she's given up on the pencil/dental floss/stapler, bandaid project. I just wish I knew what she was trying to do so I could help her. It seems like she is less communicative every day. She is nearly silent all the time now.


Thu Jun 16, 2011 10:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Weird "projects." Is this a form of hallucination?
You might consider trying melatonin. Several in our local support group get "melatonin mints" from Trader Joe's. They can be introduced as "after dinner mints." It might help with the sleep. Even though it's over-the-counter, it's always a good idea to discuss this with the MD.

Actually, your mom sounds like she's doing OK. It's your dad who doesn't sound so great.


Fri Jun 17, 2011 12:27 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Weird "projects." Is this a form of hallucination?
Robin's comment strikes home - my mom is typically up several times in the night, will go out to the living room and read, and then of course falls asleep during the day, either just sitting in her chair or a formal nap. My dad is the one who suffers most from this - he is exhausted, frustrated, and crabby about it. She's remarkably even-tempered and cheerful, when not convinced that there has been a fire in the building, kidnappings, or someone falling off the roof or balcony.

I finally convinced him to start giving her caffeinated coffee in the morning, not decaf, which helps a little! We've tried melatonin, but it hasn't helped much. I also check with them on how many times she gets up to pee because she is at high risk of urinary tract infections: not just the LBD risk but she has a horseshoe kidney and cysts, and a history of UTI. More than twice is an ominous sign. Just got diagnosed again, 2nd time in a month. Aaargh. Getting the sample was an adventure - unbeknownst to me, she went to bathroom before I picked her up to go to the lab, thus no output... even after 3 cups of water and waiting around and taking her in the bathroom several more times. Finally borrowed a kit and took her home and let my dad take it over. (Friday afternoon - I was SO not dealing with the Saturday-night-at-the ER thing again.)

Anyway I am really more worried about my dad than my mom at this point because she just goes to sleep when she is tired, whatever the time or place, and he never seems to have the luxury of uninterrupted sleep. We've offered to have her at our house for a bit or to stay there and let him sleep at our house to rest, but he goes all Noble Martyr on us. He is having a very tough time coming to terms with LBD, caregiving, and having my mom partly perfectly normal (can do crossword puzzles, memory relatively spared) and partly off in Lewy-Lewy-Land.

This has wandered afield but I am not really sure where "behavior of the other parent" would go, anyway!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sun Jun 19, 2011 9:31 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: Weird "projects." Is this a form of hallucination?
Laurel,
I think we must be sisters. It sounds like we have the same dad. Mine is exhausted. I'm worried that he's killing himself trying to take care of my mom on his own. He's 10 years older than she is and had massive heart surgery in March 2010. I've tried to get him to at least hire a caretaker to come in three mornings a week to give him a break, but he hasn't moved forward with that yet. He does take her to the senior center for some respite twice a week now, but it's not enough.

I take Melatonin sometimes. My mom has a doctor appointment coming up. I can bring up that idea then.


Sun Jun 19, 2011 10:21 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Weird "projects." Is this a form of hallucination?
SandwichMom, is your dad afraid of hurting Mom's feelings or is he in a little bit of denial? The fact that she was a head floor nurse has absolutely no relevence to her skill level now. If he is only watching closely and she is taking a lot of pills, that is a bit scary, isn't it? (It doesn't matter if the person was a CPA, once Lewy takes over they may not be able to manage their checking account.) I hope you can encourage him more firmly on hiring a caregiver.

I think people who haven't had the problem tend to dismiss getting up several times a night as a minor irritant. But it is absolutely critical that the caregiver gets sufficient sleep, in sufficiently long increments. Sleep deprivation is used as a torture device, after all! :lol: Do you get involved in the visits with doctors? I just think this really has to be addressed, even if it means adding yet another pill.

You certainly don't want to have two parents who need caregiving! Best of luck.

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


Mon Jun 20, 2011 12:02 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Weird "projects." Is this a form of hallucination?
Hi Sandwich Mom,
Your dad does indeed sound like mine! My dad is 95 and has been in good shape (still drives, cognitively intact, no heart problems) but he is visibly fraying, has lost about 20 lb in last 6 or 8 months. Jeanne is right, sleep deprivation is a serious physical strain and a risk factor for all sorts of health problems.

I did convince him to get some help a couple of hours, a couple of mornings a week. I suggested that he try it and see if it helps, as an experiment - with the understanding that if it didn't work out, we'd try something else. That helped as he did not feel permanently committed.

I would like him to get more help but he has not quite figured out how to make the best use of the time our support person is there. I think it's going to be a gradual adjustment. He has finally come to terms with the fact that she is not just being lazy or obstinate but really does have organic brain damage, and he has started reading a book I got for him. I go over every day, and I manage their health care, meds, and generally watch over them, but he's the one being a caregiver 24/7.

Good luck trying to help your dad and getting him some more support - I think it is just really hard for men from that generation, first to become the sole caregiver, then to accept that they can't do it all.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Jun 20, 2011 12:13 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Weird "projects." Is this a form of hallucination?
PS, About meds: I would be really careful about ambien and related drugs. They are noted for having delusions and hallucinations as relatively common side effects (in fact my mother's first major delusion came some months before her formal diagnosis, the day after she took an ambien - she had a few squirreled away from an older prescription - I confiscated them, and her doctor agreed.) You might talk to an "interventionist" - what used to be called a clinical pharmacologist - they are really great at knowing the ins and outs of drug interactions and special situations. Melatonin seems to be relatively benign, but you're right to touch base with the doctor even about that!

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Jun 20, 2011 12:21 am
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