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 Denial or Dementia? 
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Denial or Dementia?
For those of you who don't know, my mom was diagnosed with LBD on Dec 3rd. She's 70, smart, independent, spunky and a former RN. Our relationship has changed for obvious reasons. We talked at least twice a day and were the best of friends. However since the health issues began November 21, she has only asked about this form of dementia once. Is this lack of interest my issue because I'm concerned she doesn't seem interested? You all don't know her but have your loved ones initiated conversations or asked for clarification?

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Katie (36) daughter of Marcia (70)


Tue Dec 28, 2010 9:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Denial or Dementia?
No, my husband, who is a former research biochemist, had absolutely no curiosity about the disease. When I started reading to him from the book, Life in the Balance [written by a physician who has LBD], he informed me he didn't want to hear any more about it. He refused to continue seeing his neurologist because he had no good news.

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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 Dec 28, 2010 9:25 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Denial or Dementia?
Thank you, mockturtle. I just keep thinking that if maybe she would learn more she would do more (i.e. socializing etc). She keeps telling me how compliant she is and I gave up telling her what to do for a bit.

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Katie (36) daughter of Marcia (70)


Tue Dec 28, 2010 9:34 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Denial or Dementia?
Apathy can be part of Lewy Body Dementia (and other neurodegenerative disorders).

Many care partners are frustrated by their family member's apathy, especially if it involves sitting around all day, doing nothing. I agree with you: it's more your problem than it is her's. But this is something you can ask the MD about.


Tue Dec 28, 2010 10:00 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3334
Location: Vermont
Post Re: Denial or Dementia?
My dad seemed to go into a complete "denial trance" when his dr. started telling me about 20 mo. ago that he suspected my dad had had dementia for at least 2 - 3 years. (he was good at showtime in front of me and my family) My dad looked like he was shutting out everything the dr. and I were talking about. I avoided using "the D word" after that because he was so freaked out at the drs. but months later when he said "the neurologist thinks I have dementia, do you?" I finally said "yes" and he asked me why I thought he had dementia. I gave him some examples and tried to be very gentle about it. He never wanted to talk about it again, so I didn't. I tried to reassure him that I was working very hard with all his drs. to see if there were meds that would help his symptoms. That seemed to satisfy and reassure him. It's a difficult conversation to have but many of us have had to go through it. I wish you the best in dealing with all the things that will come up. 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 Dec 28, 2010 10:01 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Denial or Dementia?
Thanks Lynn and Robin. I think that's why she is so glad I'm here even if she is often mean (part of the dementia). I guess she just wants to control what she wants to control and it's my job to worry about the other things. Up until this point, the journey has been difficult because she hasn't wanted to talk, provide insight etc. I kept thinking how am I going to find answers? She hasn't even talked to her best friend about doubting the diagnosis, fears, or anger. So, during interactions do you just pretend all is normal? Will I get to the point that I'll stop expecting her to "wake up" and be her old self? It just seems so foreign to me that I can't even ask her to fully participate in her options.

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Katie (36) daughter of Marcia (70)


Tue Dec 28, 2010 10:18 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Denial or Dementia?
tiny im not sure if it denial or dementia... but my hubby does the same...and the group i went to for awhile, suggested not discussing it unless he wanted to.. so i havent, for years.. however the delusions , hallucinating and wandering scared him and so i talked to the doc about it when he was there.. and afterwards., he has mentioned it a few times.. teasing, so i guess im losing my mind... or so i remembered that, see im just fine..
im not sure how to handle, but latley instead of being careful at the doc.. i answer as honest as i can and ask questions ,as i need to.... but at home i find myself not bringing it up.. its like the elephant in the room..instead of being logical, like i 'd like to be, i try to let him decide if he wants to talk and so far.. he doesnt..

would love to hear the opinions of others.. how they have handled it...

i will say he is in denial, for sure!! he thinks nothing is wrong.. and doesnt see that his life has been turned upside down... but maybe that is a way of handeling something you cant do much about.. any way all other ideas or opinions are sure welcomed by me

thanks, 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..


Tue Dec 28, 2010 11:36 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Denial or Dementia?
Cindi,
Thanks for your insight. I'm a huge fan of empathy and I don't know what walking in her proverbial shoes is like but I hope to learn and become a better caregiver everyday. Mom explicitly told me she didn't want me to bring up any "suprises" while in the Dr's office. My reply, "Well then let's go over my list before we show up." However, once I started with the first technical questions for the Dr, she was done. Tonight is the first time I could tell that she's actually thought about the fact that I really did just leave my home/life and come to live here. We also discussed better communication.

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Katie (36) daughter of Marcia (70)


Wed Dec 29, 2010 12:06 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Denial or Dementia?
Sounds like you have a lot of adjusting ahead of you. When dealing with someone with dementia, you are the one who has to change. So, no, I wouldn't expect your mother to suddenly wake up and start caring about her diagnosis/situation.


Wed Dec 29, 2010 12:08 am
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Denial or Dementia?
Thanks Robin. I'm sure I will improve my adjusting more rapidly now. It's been 38 days. I'm finding more info, research, support and I will kee your words with me-I'm the one who must change.

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Katie (36) daughter of Marcia (70)


Wed Dec 29, 2010 12:31 am
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Denial or Dementia?
Tiny, Frank never asks nor did he ever ask about Lewy Body. I think he has stayed with his second dx of Parkinson Disease. Every so often he get frustrated that he can't do or figure out something and I'll say, it's the disease, it has damaged that part of your brain. In prev. years he blamed me for his confusion, said I played mind games with him. I never hesitate to explain the disease if we're visiting or if I'm on the phone, he use to accuse me of going behind his back so I just talk with him there.

Frank's dr. takes him into the office first and then he comes out and I go in, that lets us talk freely. I do email his Dr the morning of our visit so he knows what's been going on.

As Robin said, your mom will chose the path and you just need to adjust to a "new normal" constantly, as time goes on the change is more frequent. Be sure to take care of yourself, it's a loooong, bumpy road.

Gerry

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


Wed Dec 29, 2010 8:52 am
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Denial or Dementia?
Gerry,
Thanks, I've talked openly in front of her for a while. Now things are a bit more difficult. I think catching her in the am is the best for conversation. Her biggest fear is my going behind her back. Previously she threatened "I have to give them permission to tell you anything." And, bumpy road? I've told my friends I this is the longest roller coaster ride I've ever been on.

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Katie (36) daughter of Marcia (70)


Wed Dec 29, 2010 8:59 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3334
Location: Vermont
Post Re: Denial or Dementia?
I think that any expectation that our LOs will behave "normally" like they did before their dementia became so obvious is just putting ourselves in the most frustrating position. Robin was so right on when she said that we have to adjust OUR thinking and behavior. You will find yourself more and more becoming the parent of your parent - you will have to make all those hard decisions because they are not capable any longer. It's a hard role to adjust to for both but you will see your mom becoming more dependent on you for your opinions and decisions. Trying to be rational and logical with a person with dementia is like trying to reason with a newborn baby in many respects. All the best as you travel this very difficult journey. 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.


Wed Dec 29, 2010 10:11 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Denial or Dementia?
Well said, Lynn. You and Robin certainly are correct that WE are the ones who need to change our behavior and that we cannot expect rationality in our LOs. I still occasionally forget and end up feeling like Charlie Brown and the football. I'm an amazingly slow learner when it comes to Lewy. :|

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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.


Wed Dec 29, 2010 10:23 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Denial or Dementia?
My MIL is in denial also and never has asked about this disease. She has fixated that she is the way she is because a doctor gave her the wrong medicine (untrue). We could never convince her otherwise, so we stopped correcting her. Now she rarely talks so we don't know what is going on in her mind. Apathy set in a long time ago. Just part of this disease, I guess.

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


Wed Dec 29, 2010 10:28 am
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