View unanswered posts | View active topics It is currently Fri Apr 18, 2014 12:28 pm



Reply to topic  [ 37 posts ]  Go to page 1, 2, 3  Next
 How to deal with constant delusions? 
Author Message

Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post How to deal with constant delusions?
So now my husband has reached the stage when he pretty much always is talking about some delusion. Had his birthday party and he was going on about some million-dollar scheme that his son later told me was right out of a Nicholas Cage movie. Nearly all of these involve money, for probably complicated reasons, and it is getting harder to distract him from them, PLUS he wants me to DO something about them. (I told you folks about the one when I had to deposit a "check" and how THAT did NOT turn out well.) Lately it was a plane crashed on the mt. and we had to go get the treasure NOW. Then it's how I HAVE to find the "card" with the "code" that will win us (it keeps going up) a billion dollars. So what do you SAY to get him off the idea?? I ended up calling the 24-hour mental health hotline last week because he was knocking on the TV and hollering at it and then HAD to talk to someone at that channel, so i asked the mental health nurse to just listen to him, pretending to be from that channel. She was good, just said "uh-huh" and then told him she'd taken careful notes and would pass it on. But I feel like I'm not staying two steps ahead of him with what to say or do to calm him down. He doesn't just drop the thing if I distract him, either - it comes back in a day or two. Ideas?


Thu May 24, 2012 10:46 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: How to deal with constant delusions?
My mother is almost completely delusional, too. We don't argue with her if her delusiuons are harmless (e.g., her stuffed dog is alive and talks) but only try to tell her the delusion is not true if it is scary (e.g., the nursing home is burning down and no one is helping her). Fortunately, hers are very rarely frightening and mostly are about what she and the dog are doing.

It is very difficult to dissuade her from her beliefs anyway, and going along with them is what her doctor has told us to do. I know it's not always easy.

Julianne


Fri May 25, 2012 8:34 am
Profile

Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: How to deal with constant delusions?
Yeah, I have to keep telling myself to go along with them, but when he want to DO something (call the TV station) or have ME do something, then it's trickier - and he's not easily distractable.


Fri May 25, 2012 12:55 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: How to deal with constant delusions?
Kathy - can you tell him something like "I'll call them in a few minutes" or "there is no one there to answer the phone right now. This show was pre-recorded. Or, I'm sending someone out to take care of it "(searching for the treasure, for instance) Maybe sometimes you do just have to say "I know that you believe x, y & z, but honestly, that is your illness talking." Then try to distract him with something? Some of these delusions are much easier to deal with than others, for sure. Your husband's sound pretty challenging!

_________________
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.


Fri May 25, 2012 2:16 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: How to deal with constant delusions?
I don't know how many times I faked a phone call to arrange something. If he wanted to speak directly to someone, I would have my SIL [I had a secret number to his office] pretend to be the party in charge. It was very wearing! At least, now that he's in the SNF, I only have to do this for a few hours a day. :P Seroquel helped his agitation a lot and that was the most difficult to deal with.

_________________
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.


Fri May 25, 2012 3:21 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: How to deal with constant delusions?
Good point, Lynn, redirecting and distracting can help. It just depends on how obsessed the LO is. I have also done things like telling my mother that I would contact whatever third party she wants "soon" or "when the office opens" but I think she knows I am blowing her off and she gets angry. She has been requesting sewing needles for months and I keep telling her I will look for some (though the SNF will not allow them and I never do). She forgets for a few weeks and then asks again. Nevertheless, creative answers can be very helpful. So can appropriate medication for anxiety!

Julianne


Fri May 25, 2012 3:40 pm
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: How to deal with constant delusions?
I just had a bad incident because I didn't get $300 for my husband for our brother-in-law (Ted had decided he needed to give it to him for his birthday).. I'd successfully gotten him away from it for about 10 days since our brother-in-law had been away in Hawaii. Unfortunately, I mentioned they were back. It ended up with 6 people from the facility trying to hold him back down in the wheelchair and him so angry with me. Well, now the facility won't take him back until his meds are managed (funny, after review it was the facility's own doc who prescribed all of them). He's back at the VA on the mental health ward. Asked me today again whether or not I had the $300. I'm hoping he'll get to go back to the facility after they increase his seroquel and adjust the other meds. I'm just frustrated that I couldn't handle it better.


Fri May 25, 2012 4:51 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: How to deal with constant delusions?
Jean, sorry to hear about this upsetting incident. I hope you don't beat yourself up over it. If it hadn't been the $300, who knows what else might have set him off? With Lewy, it is so hard to predict. All you should expect of yourself is to do your best. This disease makes for a steep learning curve for all of us!

Julianne


Fri May 25, 2012 5:09 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: How to deal with constant delusions?
I'm so sorry Jean. Let's hope a med. adjustment will help a lot. 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.


Fri May 25, 2012 8:01 pm
Profile

Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: How to deal with constant delusions?
Thanks for all the support and stories that show I'm not alone. He's been on Seroquel for some time, trying upping his dose recently, also added Depakote for anxiety. He did just start Parkinson's meds -did I say that?-and I contacted the neurologist to see whether we should stop that. Yeah, this is challenging all right, and I've tried most of the solutions you've suggested, so sounds like I just need to keep doing as much distraction and faking out as i can. I'm beginning to get so blamed tired, tho, that I fear these increasingly strong delusions may be what gets me to send him to a foster home or get more care in-home. On that subject, for those of you who have sent your LOs to other care or gotten in-home care, what kind did you opt for and how has that worked out? I've found a really nice foster home very near run by a lovely family, only $3500 a month, and I'm definitely keeping that in mind. Don't know what the last straw will be, physical issues (my arthritis is getting worse) or mental/emotional (I'm crying more lately, that's for sure).


Fri May 25, 2012 10:37 pm
Profile

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: How to deal with constant delusions?
Thanks all of you guys for posting, especially for starting this particular thread. I've found added strength also in everyone's replies and feel less alone. I can say that I've found additional strength with the hospice folks and they truly are angels on earth. When I found myself waking up crying before I got out of bed, that's when I knew I needed to see if I could get help placing Ted. It is definitely still not perfect and feels insurmountable at times.

On one hand, I have more support; on the other, I feel like I'm repeatedly giving the same information AND paperwork AND phone #'s AND learning the ropes for which place (what the hospice folks need, what the nursing home needs, acute care at local hospital, the VA hospital, what ward is he on, which doctor, which nurses on what shift or which social worker, etc, etc, etc). That takes a lot of strength and fortitude all in itself.

I keep carrying a hard copy of the power of atty, living will, AND the Lewy Body info sheets from Mayo, etc with me in addition to Ted's assorted medical cards (VA, military, my health ins, etc) in a bag. That came in handy yesterday when they couldn't find the scanned stuff immediately in his electronic record. It also all came in handy when I was with him at the ER at the local hospital earlier this month after his fall at the NH.

From that earlier ER learning experience where I DIDN'T have the meds listing, this time I also had my own copy of his medications from the NH. This allowed me to give the list to Mayo clinic while I was on the phone with them this week AND allowed me to better review with the local VA mental health doc yesterday.

Ok, strayed off this topic a little (I'll copy & post in the other thread), but back to your other question. It's an extremely difficult decision to place in a nursing home or other assisted care. The constant delusions and hallucinations are SO hard to manage. I can tell you that I personally can see I'm better since Ted's been in the facility. Still isn't pretty, but I feel stronger and others have told me I look better and seem better also. I have a pacemaker and realized that I am no good to anyone if I don't take care of myself (yes, people had been telling me for awhile that I needed to take care of myself, but you also can't help but do for your LO because you know they can't). It's SUCH a struggle to balance and even now I'm not always successful.


Sat May 26, 2012 8:31 am
Profile

Joined: Sun Mar 25, 2012 4:03 pm
Posts: 6
Post Re: How to deal with constant delusions?
I've been reading the posts about constant delusions. My mom is 85 and has lived with us for 10 years, she was diagnosed with LBD in March, prior to that was diagnosed with Alzheimer's. She has been hallucinating for about 5 years (I thought it was only when she had a UTI), she was put on Seroquel by a psychiatrist she was seeing for depression. After the LBD diagnosis her neurologist took her off the Seroquel and for about 2 weeks the hallucinations ended. Now they are back and her Urologist, Neurologist and her Primary Care Physician do not want her on antibiotics (even if she has a UTI) because she has been on many different ones since November. For about a year now she has started asking "who's house she is in, where are the people who live here, thinking we have multiple houses, she says it looks like your house but it's not, the things in the house look like yours", etc. She is always asking how I knew she was here, she was going to call me to come and get her (I'm in the house when she wants to call me). The delusions and hallucinations are colliding, sometimes she thinks there are other people in her room, babies, children, animals, bugs, mice, people outside her window, dead relatives visiting. It's very hard to live with the delusions and hallucinations every day and sometimes throughout the night and answer the same questions. We feel like we live in an alternate universe. I don't have anyone helping take care of her, I have two boys (one in high school the other in college) and my husband travels for work. I am looking at SNF but I'm struggling with placing her because I know she really doesn't want to go. I'm really tired and stressed. If I move her from my home to a SNF how do I tell her she can't live with us anymore? Her sister died in a SNF this year in another state and she still doesn't know because she hated her niece who put her there and always felt like it would eventually kill her. We are afraid the news will be too much for her, it was her only living sibling. So many issues to deal with, it's overwhelming. I can't participate fully in my life as a wife and mother with all of this too.

Thanks for reading.
Sherry


Wed Jun 06, 2012 12:06 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 609
Post Re: How to deal with constant delusions?
Sherry,

It's really hard to deal with the constant delusions, as I know because my mother has them. She really does live in a different world. We find that going along with her delusions works best (and is what the doctors recommend). We don't argue unless she is having a really scary delusion (e.g., the nursing home is on fire and no one is helping her). As far as the multiple houses or people, you might want to search Capgras on this forum.

I don't really understand not giving antibiotics for a UTI. My mother has had them 2-3 times and it hasn't affected her delusions one way or the other.

As far as SNF placement, obviously only you can decide, but I do think you need to consider your wellbeing and that of your family. Self-sacrifice is one thing but you have your husband and children to consider, too.

If your mother is as delusional as you say, I am not sure that placing her will be as distressing as you might think. Being in the nursing home doesn't seem to affect my mother, as she is too busy riding trains around the country and experiencing whatever else is going on in her world. I don't mean to sound flippant, but truly, it completely absorbs her.

Yes, there are a lot of issues. Try to take one thing at a time so you aren't overwhelmed, and come back here often for support. Whatever you are going through, someone else on the forum has been there before. It helps.

Julianne


Wed Jun 06, 2012 2:20 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: How to deal with constant delusions?
Hi Sherry - I think Julianne gave you some good advice. Your mom may not even know she is living in a different place if you do place her in a SNF since she is so confused about where she is anyway. There is a point at which many people can no longer take care of their LO at home, and you know you've done the best you can do for her. If your own health and well being and your family's is at risk, your "well" mom would not have wanted you to go through that, I'd be willing to bet.
You have to balance what is good for all of you. I dare say there isn't a single person on this forum whose big objective in life was to put their LO in a facility and that they felt great about it. Most of us have gone through a lot of angst, weighing all the pros and cons, and very guiltily placed our LOs for their sake and ours. I'm guessing your mom is probably pretty mobile, but chances are that her mobility could deteriorate slowly or quite suddenly. Then you have the lifting and transferring issues to deal with, and most of us are not able to lift the full weight of a person who can no longer transfer. So that's something to consider in addition to the emotional toll that CGing is already taking on you.
It's a tough decision, but looking at all the people and all the facts, then deciding what's best for everyone means you are still doing all you can do to help the situation, even if that means placement in a facility. Big hug, 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.


Wed Jun 06, 2012 5:03 pm
Profile

Joined: Sun Mar 25, 2012 4:03 pm
Posts: 6
Post Re: How to deal with constant delusions?
Thank you Lynn and Julieann, I have been struggling for some time with the decision about placing her knowing that the longer it goes will only put more stress on everyone in the house. I came down with Shingles about 3 weeks ago and I did have a milder case than the ones I've read about but it was still painful. I checked out another place today and was pleasantly surprised with it so I'm gathering records from her Primary Care Physician and her Neurologist to drop them off. She is on Medi-Cal which has to be re-evaluated each year but I have to first get her in a place. I feel like this is only the first step of many that will come throughout this process. The closer I get to doing it the more I pull back so I need to keep pushing myself so I don't change my mind. I can feel the pain of those who have made this decision on the forum, it's great to have a support group of people who have been down this path.

I will let you know the progress as I go, I'll need the constant support.

Thanks again.


Wed Jun 06, 2012 7:54 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 37 posts ]  Go to page 1, 2, 3  Next

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