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 How to deal with constant delusions? 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: How to deal with constant delusions?
Although it is a difficult decision to make, I think most people on here would agree that once our LOs moved into a facility, it was quite a relief and seemed like the right decision. Of course, it also means you have new tasks to deal with, like making sure your LO is well taken care of and that issues are resolved quickly and appropriately. There are many posts on this forum about this sort of thing. One thing I remember several people saying is that a care facility will NOT be just like home, and our LOs will often receive care differently than when they were at home. But, once you get some of those wrinkles ironed out, it should make life a little less stressful for everyone.

_________________
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 Jun 06, 2012 8:32 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: How to deal with constant delusions?
All good advice. Everyone keeps telling me I'll know when it's time -well I thought it was for a couple of weeks when my husband's delusions were making ME batty, but it was the Parkinsons' meds making them worse, it seems, because he is better on a new one. I have been constantly changing what I think my criteria will be for putting him in a foster home, as he's passed the "deal-breakers" I thought would put me over the edge. I keep thinking bowel incontinence will be it for me, but he's had little accidents and I haven't had a problem. I'm just tired all the time. Good to hear of others who have made the transition. It's hard when we still have those sweet, tender moments sometimes -maybe it's worse with a spouse, I don't know.


Wed Jun 06, 2012 10:33 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: How to deal with constant delusions?
Would like to open this up again. The last couple weeks my husband has been getting back to some very paranoid delusions and I'm not exactly sure what to do to ease him through them. Today, for instance (not sure if he saw something on TV that triggered this) he suddenly was babbling on about some guys getting shot and the shooters wanted $2000 for some reason -he really acted like we were in danger if we didn't do something. I couldn't tell from his excited ramblings WHAT we were supposed to do. Tried being soothing and calming, stroked his hand and head, told him I'd make sure the bad guys didn't get in, etc. Distraction doesn't work well with him when he's really into something scary. So I just delved further, asked what we should do, he blathered on some more. Finally called the psych. hotline and asked if I could give him his dinner dose of Seroquel early, dr. said fine. That knocked him out! But I hate to think meds are the ONLY solution. What do you folks do if LOs get very agitated and paranoid BESIDES just distraction. Or maybe I don't get what sort of distraction works best.


Mon Jun 11, 2012 10:46 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: How to deal with constant delusions?
Oh Kathy, I don't have an answer. I just want to hug you.

Asking him what to do sounds sensible to me. Did you get any answer you could act on? Pay a $2000 blackmail fee? OK, I'll go to my computer and wire it out right now!

I don't know. But I really don't think distraction isn't working because you aren't doing it right. This is not in any way your fault!

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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 11, 2012 11:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How to deal with constant delusions?
Well, after several years of nightmarish evenings, we discovered Seroquel and, while it was not a panacea, it made life much less nightmarish. I gave him a very small dose [less than what the neurologist ordered] in the late afternoon and it made a big difference and did not make him sleepy.

My SIL, who used to be a police detective, offered a 'hot line' from his office at home [he was retired] to let me call him there, saying it was 'Officer Smith' and Derek would talk to him about his fears and delusions and my SIL would be excellent at listening calmly then reassuring him. Something I was unable to do because he often thought I was part of the plot or, much of the time, an impostor who looked just like his wife. He was FOREVER wanting me to phone his wife and I would actually call my cell phone and stand there in front of him, him on the phone, me on the cell phone, and him asking me where I was. I could never convince him I was standing right in front of him!!

This really takes me back to a fairly recent place I'd rather not return to. :cry: It's too bad all of the old posts here have been accidentally erased because you could read what weird things were going on with us.

_________________
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.


Mon Jun 11, 2012 11:16 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: How to deal with constant delusions?
Yeah, I have done several sneaky things, like call the hotline and ask her to pretend she was from the news channel because he HAD to talk to them. She did okay. My Case Manager says I can call any time and he'll pretend to be anybody, so that's good to know. The Seroquel dose helped remarkably well, but I have a feeling this delusion will come back, as they often do. I wish I knew what he wanted to do about it -said something about writing a letter (he's done "projects" of stuffing an envelope with his birthday cards which he covered with return addresses) but he didn't want to write it, said he "didn't want to get involved." So then what? I know we're all dealing with this !@#$ stuff, didn't know if someone had a way to deal with the paranoia. I'm so sorry about the imposter-wife routine - I am often mistaken for my sister, or some guy named Keith who drives my husband places, gotten used to not being me, but it's still sad.


Tue Jun 12, 2012 12:10 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: How to deal with constant delusions?
Kathy - my dad did not have a lot of hallucinations, did have a few delusions, but I don't remember anything scary, so I'm sorry I can't help you with that. But, I wanted to respond to your comment:
"But I hate to think meds are the ONLY solution." I have been one of those people who used to think that medications should be a last resort, but when I was seeing a counselor at the memory center she said something to me that made a lot of sense and made me feel better about my dad and his meds and my going on an anti-depressant. "If you have a chemical imbalance which is causing problems, it's ok to take a chemical to restore balance." I'm not saying that there aren't behavioral things that can help you with some symptoms, but maybe what the counselor said to me might help you reframe how you feel about giving your LO meds to help with some of his issues. It really helped me feel better about taking a med I thought I didn't want to take and helped me rethink my dad being given certain meds too. Cyber hug to you, 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 Jun 12, 2012 10:27 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: How to deal with constant delusions?
Lynn, I remember years ago telling my doctor that I wanted to try talk therapy before taking a drug. She said I had it the wrong way around -- that getting my body chemistry in balance first would enable the therapy to be more effective. Hmm, put that way it made a little more sense. I had post partum depression after each birth and depression when I began menopause. No amount of talking was going to get my hormones to cooperate! :P

More recently, when I was (finally) diagnosed with diabetes my blood sugars were entirely unstable and dangerously high. The hospital didn't say, "let's try to treat this with lifestyle changes and use drugs as a last resort." First they got me on "rescue" insulin. After the crisis situation was under control I was able to manage without insulin for several years.

It is probably healthy not to want to fix everything in sight by popping a drug. But drug therapy very definitely has its place!

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


Tue Jun 12, 2012 11:42 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: How to deal with constant delusions?
Exactly! I have never been one to take a lot of meds, so I was so grateful when this counselor said what she did to me. How many times have people who are clinically depressed been told to "suck it up and be happy?" Well, I tried that for a long time and as my dad became more ill and the demands on me as a CG grew, it was all too much. Luckily I have been able to get off the meds now, which was the original goal for me. Took it when I really needed it. Same for my dad, gave him meds to treat symptoms as long as the meds worked, and when they didn't or the side effects were not worth it, I tried to get him off. I think we need to be kinder to ourselves and take the prescription meds WHEN WE REALLY NEED THEM! And not feel bad or guilty for doing so! 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 Jun 12, 2012 11:56 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How to deal with constant delusions?
Lynn, you and Jeanne are both spot-on! Clinical depression stems from a chemical imbalance and, usually, medications are necessary to restore the balance. Certainly, depression can be brought about by situations but the situations, themselves, can cause changes in the brain chemistry. Once the balance is restored, the situation can be addressed.

_________________
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 Jun 12, 2012 12:37 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: How to deal with constant delusions?
Good thoughts about meds -and I HAVE found that several anti-psychotics and anti-depressents have helped my husband quite a lot. But I still never know when he's going to have one of these scary times and what to do to calm him down. Left a message with his psychiatrist -maybe it's time to up the dosage again. Thanks for the hugs!


Tue Jun 12, 2012 12:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: How to deal with constant delusions?
When I was taking a CGing course a few years ago sponsored by our local hospital and the Visiting Nurses' Assoc., one of the things they told us was that stress can cause chemical changes AT THE CELLULAR LEVEL and that these changes can last for a year or more beyond when the CGing is over. That really made me sit up and take notice, and many in our group were blown away to hear that. I think that's when I ran to the nearest phone and called my dr. for an appt. It made me deal with the inevitable - that my anxiety and depression weren't going to go away by "trying to think happy thoughts" just like Jeanne and her situation that needed immediate intervention through prescription meds. Those chemical changes don't go away over night and I was very thankful that it didn't take long to figure out the right med and the right dosage for me. 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 Jun 12, 2012 1:57 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: How to deal with constant delusions?
I'm glad to hear that the meds did help! That is, as others have noted, a sign that some of his problems are a product of a physiological imbalance that can be helped.

We just went through a dose titration of seroquel with my mother, and I am so glad we did - she is now sleeping better, hence my dad is sleeping better, and she is much calmer in the daytime. One thing that became obvious during the process was that she was quite sensitive to variation in her blood levels during the day. The half-life of seroquel is reported to be 7-8 hours, and most older people metabolize a little more slowly, so most docs prescribe twice a day. We found that the dosage had to be the same at both times; when we tried 12.5 mg in the morning and 25 mg in the evening, she was fine at night but not during the day. Apparently the drop in blood level caused a problem for her (even though she still had seroquel on board.)

It's possible that he is metabolizing faster, and that he is having some sort of local minimum at certain times of day. Have you noticed a pattern in the time of day when he has problems? If you can document that, maybe that will be helpful to the doctors in thinking about how to modify his meds. For example, it could be that splitting the total into 3 doses 8 hours apart instead of 2 doses 12 hours apart might help, if his problems seem to crop up in late afternoon or early evening and his meds were being given in morning at at bedtime.

Sounds like you have good medical help, anyway! I sure hope that they come up with a treatment plan that helps to stabilize him and relieve him of the delusions - they must be very stressful for him also.

Laurel

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


Tue Jun 12, 2012 8:29 pm
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Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: How to deal with constant delusions?
Oh, yes, lately it's about 3-3:30 pm. And today was a DOOZY -out of the blue he started ranting something about men and guns, and then when I tried to give him a 1/4 Seroquel, as the psych. had ordered if he had a bad day, he spit it out, wouldn't even drink any juice, looked at me angrily and cussed at me that I was NOT his wife, dammit. I just went in the other room and cried -he's never done any of that stuff before. I heard him talking, I thought to nobody but when I saw a cop coming down the driveway I figured out he'd called 911. The cop was very understanding, had a Mom with dementia, and just told him gently but firmly I AM his wife and he should take the pill. He calmed down then quite a bit. Dr's nurse called back and said to take his temp. in case he had a UTI. No fever but VERY dark urine, so I took him to urgent care where he could NOT pee tho I dosed him with water and we waited for an hour. No luck! I think maybe he DOES have some kind of infection, maybe in his throat or lungs, as he's coughed up more stuff lately (often coughs up stuff because of his asthma). SOOOOOOooooo this was one of the worst days EVER! Am I going to need to call the cop back if he refuses meds again?? Is this a new downward trend? Or is there something physical going on. We'll see. Sigh! Thanks for letting me vent.


Wed Jun 13, 2012 1:16 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: How to deal with constant delusions?
Being unable to pee is not uncommon with PD or Lewy. My husband has a neurogenic bladder and has had a catheter since 2008. And they are prone to UTIs because of this, too.

_________________
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 Jun 13, 2012 1:22 am
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