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 Another Day - Another delusion 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Another Day - Another delusion
we are just entering this stage .. where first letters are being changed and whole words being made up.. and that is scary enough.. so i can imagine how scary that is for you..

take care. welcome and hope you are able to get some answers from others ,that have been there..
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 Jan 15, 2011 10:24 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Another Day - Another delusion
Our situation is similar to Pat and Derek. Most of the time I don't understand what Frank is trying to say, they may be words but just don't fit with what I've asked. I never know if he didn't understand what I've said or he just can't send the message to where needed. No two are the same but they are all very challenging.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Jan 15, 2011 10:31 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Another Day - Another delusion
pjaj,
Just want to welcome you to the LBDA forums ! Part of what you describe is normal for LBD, they often know what they want to say but can't seem to get the correct word to their mouth, it really is a guessing game of sorts, look through some of the older posts as someone may have a good suggestion!

Visit often:

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Irene Selak


Sat Jan 15, 2011 11:07 am
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Joined: Wed May 06, 2009 10:15 pm
Posts: 15
Location: Kansas
Post Re: Another Day - Another delusion
Pat, How does the light gray information about you, your age etc appear at the end of your post? I'd like to add that but don't know how. P. Jo Ann

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P. Jo Ann, 59, married 31 years to Richard, 78 yrs old. Richard was diagnosed spring 2008 with LBD.


Sat Jan 15, 2011 11:11 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Another Day - Another delusion
At breakfast this morning, Dale wanted me to move a bowl of fruit ... because it was hurting his ankle. I moved it and he said his ankle felt better.

His feet are always getting tangled up in the wheelchair foot rests. (NOT)
He hates putting his feet on them .... but then he drags his feet when I push the chair. I can't win.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Jan 15, 2011 11:36 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another Day - Another delusion
Jo Ann: Go to 'User Control Panel' up in the left-hand corner, then 'Profile', then 'Edit Signature'.

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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 Jan 15, 2011 11:59 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Another Day - Another delusion
All I can tell you is that reading your post I thought, "I coulod have writen that." We still go through that most of the time, and I never know what to say. It is the very frustrating. Even though I cannot provide you an answer, I am posting because I have found it is comforting to know that you are not alone in the dealing with these things.

Glad you are here, and keep posting. It is good to be part of a community that truly understands.

Smiles, Nan


Sat Jan 15, 2011 12:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: Another Day - Another delusion
Jo Ann - welcome to the forum and I, too, hope you come here often. It's a great community of support and wealth of information. It's hard to know whether the kinds of communication are delusional thinking or he just can't find the right word and/or thinks he DOES use the right words, or what. It is very difficult to understand them and very exhausting. And those times when their voices become so soft you can barely hear them it's even harder to try to guess what they are saying. My dad used to get furious at those times when we were all trying our very best to figure out what he was saying. His last few months he would try and try to get words out, his mouth would tremble, and nothing would come out. Then he'd look at me with these pleading eyes like he was trying to say "please help me by figuring out what I'm saying." It was heartbreaking. Sending you a big cyber hug. 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.


Sat Jan 15, 2011 12:34 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Another Day - Another delusion
I'm glad you have decided to 'talk.' We all need as many somethings and someones to lean on as possible. Don't forget to take care of yourself. I'm just becoming aquainted with mom's companion, Lewy, but this forum has been a God send.

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Katie (36) daughter of Marcia (70)


Sat Jan 15, 2011 2:45 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Another Day - Another delusion
Quote:
It's hard to know whether the kinds of communication are delusional thinking or he just can't find the right word and/or thinks he DOES use the right words, or what.

That is an interesting observation, Lynn. About 10 years before Lewy made his unwelcome but dramatic entrance into our lives, Coy was hospitalized after a head injury. Often when asked the date, etc. he would respond to the "where are you?" question with "in a high school." The speech therapist told me that there is no way of telling (at least by that little test) whether he is truly so confused he thinks he is in a school, or whether he understands that he is in a hospital and is just using the wrong words. I found that very interesting. It didn't help me understand him better, but at least I didn't automatically assume total disorientation when it might have been limited to verbal skills.
This is a tough job, isn't it?

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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


Sat Jan 15, 2011 3:40 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: Another Day - Another delusion
It really is a hard job, and we all just do the best we can every single day. 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.


Sat Jan 15, 2011 4:55 pm
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Joined: Wed May 06, 2009 10:15 pm
Posts: 15
Location: Kansas
Post Re: Another Day - Another delusion
To all that posted a response to me today - thank you so much. Tears ran down my face because I could feel the warmth and human understanding that came from each of you. So many people offered that hug sooo needed today. Small courtesies sweeten life - you sweetened mine.
P. Jo Ann

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P. Jo Ann, 59, married 31 years to Richard, 78 yrs old. Richard was diagnosed spring 2008 with LBD.


Sat Jan 15, 2011 9:23 pm
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Joined: Thu Sep 29, 2011 9:06 am
Posts: 10
Post Re: Another Day - Another delusion
Hello, it's me. Again. My MIL has this delusion about one of my grandson's. He is 8 mos old. She constantly thinks there is something wrong with him. Either he's always hungry (even if we fed him a bottle and a jar of baby food 10 min before) or he's hurting, he's having trouble swallowing or something. We try to reassure her that he is fine and healthy. He's not hungry he just ate. Nothing will satisfy her. She is convinced and thinks we are denying him food and attention. At times, she gets very upset that we are not doing something to help him. Especially if he's crying. So we just keep reassuring her that he is okay.
Now to the events of the day. I'ts been a bit of a hard week with her. My grandson has been here quite a bit this week. Yesterday, she went out for the day with her grandaughter. She had a wonderful time. When she pulls up in the driveway, my daughter and her baby are rushing out the door to leave because she is going to be late to work. My MIL was upset all evening. She said that baby wasn't breathing when she left. They just threw him in the car and hurried out of here. I've tried to put her at ease to no avail. This morning she was still talking about it. I spoke very gently with her again that he was fine and at home playing. Even had my daughter send a picture to my phone of him playing. I thought she was fine about it after that. A littl later on, I hear her on the phone to relatives out of state telling them that my sweet lil grandson had passed away. I found out who all she talked to by looking on her phone and called them back to tell them he was alright.

This has upset me in so many ways. My heart hurts for her. That she would be in this much pain in her heart thinking he had died. That has to be horrible, she loves this lil guy. My heart hurts for my daughter. If she would have heard this, it would have crushed her. Finally, my heart hurts for me and my family. It hurt to hear those words about my grandson. Delusion or not. It also hurts because she is convinced of this and the reality of her state of mind is very painful. I don't want her telling people this. We have church tomorrow and I'm a lil anxious about it. I don't know why with all of the things we have been through with her that this has hit me so hard. But it sure has. I've been a big bawl bag all evening.
How do we deal with this. I am at a total loss. This sucks so bad. I hate this disease. :cry:


Sat Oct 08, 2011 9:29 pm
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Joined: Tue Mar 29, 2011 3:09 pm
Posts: 20
Post Re: Another Day - Another delusion
Hi DeeDee,

I'm praying for a night of peace for your family. Get some rest and just maybe tomorrow this will have been totally forgotten. Go to church, get the strength that can only come from Him. Yeah, it sucks.

Marilyn


Sun Oct 09, 2011 12:59 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Another Day - Another delusion
Oh dear, Deedee. How upsetting on all counts! With many delusions you can simply go along with them, change the subject, and they pass. But I don't see how you can go along with this delusion.

Is there a baby tragedy in your MIL's past?

Since this has been ongoing, I don't suppose we can count on MIL just forgetting it. Next time she sees the baby, I wonder if it would help if you exclaim over his health. "He's gone to the doctor, and look how healthy he is now! See how strong his chubby little legs are! And the nice color in his cheeks!" You don't have to say that he was sickly but since that is what MIL thinks, maybe she'll accept that "the doctor" (certainly the child has been to a doctor for well baby checkups) "fixed" him. I don't know what you are going to do if she insists the little guy died. "Oh that was a huge mixup. Thank God! He didn't die, and he is very healthy now!" I really don't know -- I'm grasping at straws. The delusion is her reality and I don't think you can talk her out of it, but maybe you can convince her that things have changed.

As for church tomorrow, yikes. I think if she tells that strange sad story you are just going to have to pass along a correction later, as you did for the people she told over the phone. Is it generally known in the church that MIL has dementia? If you are standing behind her shaking your head, would people understand the message? Would it be a good idea to call the pastor ahead of time and explain the situation, in case she tells him the story?

Hugs to you!

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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


Sun Oct 09, 2011 1:15 am
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