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 Denial or Dementia? 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Denial or Dementia?
Sounds like my dad and his left leg issue. When his walking got really bad a few years ago and his left leg was barely working he blamed it on the dr. changing his Lipitor to something else. The dr. changed it back after 10 days, but the leg issue remained until he died a month ago. For 3 years he blamed his decreased mobility on the med. change. No amount of reasoning would sink in, and after I first heard his dx of PDD or LBD last summer I no longer engaged in logical explanations or correcting what he said if I could help it. Every new dr. we took him to last summer was told about how the med. changed had ruined his walking. There were a lot of discussions about what was really going on after my dad left the room and I had each dr. to myself! 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 10:37 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Denial or Dementia?
I loved the Charlie Brown and the football reference. I do that all the time. I cannot seem to remember that he doesn't understand. Oh, how I would love to know what he is thinking sometimes. The toilet is now 'across the street' so finding it is a mystery. He has 'another wife' and he flirts with her all the time. I read somewhere that those feelings are often increased in Lewy in men. I believe it.

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


Wed Dec 29, 2010 10:40 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Denial or Dementia?
Apathy, yes. It's so frustrating for us. I've spent the last two years trying to interest Derek in something--anything!--bringing home crafts, paints, children's puzzles, etc. but in all this time he has not taken an interest in anything but seems content to just sit. He doesn't watch TV, he does listen to classical music but seems totally withdrawn into himself. Once in a while he will silently chuckle over something and it will thrill me to the marrow [to quote Crosby, Stills & Nash]. I'm thinking I want his involvement for MY sake as much as his so I'm trying to be more objective about the situation and to accept him as he is. It's hard. It's very hard.

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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 10:42 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Denial or Dementia?
pat oh my i understand.... hubby has never been a social butterfly and work has been his "fun".. not driving and not being able to put things together any more.. stopped work fast, as he was contractor. but even when he was home, before, he never sat down.. always had a project going outside or inside.. now almost over night, for two years nothing.. i, like you, have spent tons on hobbies, crafts, puzzles etc.. cause he just sits.. and nothing other than the 100 piece puzzles have caught his interest.. and only those if i take them out and talk them up.. but only occassionally!!

i feel so bad that there is nothing that interests him.. but i guess after reading your post that, that is just going to be the way it is..... he tells me all the time how busy he is, so obviously he sees it way different than i do.. sometimes he will pull out a agent orange news letter, i got from the va six months ago, and will read that 4 pages for days.....

sadly, family wants him to go fishing with them or just spend time with him (and give me a break) and he wont go... says hes too busy...

thank you all again, for sharing. i learn so much from all of you!!

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..


Wed Dec 29, 2010 11:10 am
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Denial or Dementia?
Hi Tiny. Sorry you have to be here, but welcome. There's an incredible amount of experience here on the forum which is great because there's also a lot of diversity in LBD patient's behaviour. When my LO was diagnosed four years ago she wanted to know all about LBD. She is a retired nurse and went to her personal "bible" the Merck Manual. What she found in the book was depressing, but she would read it over and over. As her disease progressed, I was able to remove the Merck Manual and told her it was missing. In the early stages it was a constant balancing act between lying by omission, half-truths, and truth. Outright lies didn't work for us because my LO was just too sharp and could tell. At this stage, my LO still knows she has dementia and LBD although she can't find the names for them. She has asked me explicity to tell her that her delusions, problems with sight and memory, etc. are because of the disease when she gets upset about them. Somehow it comforts her that the disease is the cause. She is still aware.

Early on, we had a problem with the "talking behind her back" issue too. Of course, sometimes it is necessary. My solution was to agree to not talk to people about her without her there unless it was a matter of her safety. If it was a matter of safety I told her I was going to do it. She agreed. For the most part I kept my agreement. I often talked to people about her with her present. Sometimes she would get angry and I just had to take the heat. This problem passed years ago as I took on more responsibility and she became more reliant on me. The control struggles of the early years were very difficult but we found a way through them and it is better now. I hope you and your mother find a way too. Good luck to you. Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Wed Dec 29, 2010 11:14 am
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Denial or Dementia?
Annie,
Thanks so much. I think your LO and mine are similar. I just can't lie to mom and she too is sharp. I'm learning so much from this community and today was already a better day because I am attempting to change as benficially as I may based on the sage advice I read here. My sister is great and helps frequently with putting a positive spin on things. I get frustrated, call her, and she reminds me that tomorrow I might be able to handle the exact situation better. I'll attempt to go with the flow and I think allowing her as much control as possible in these early stages is best.

Annie, has there been fluctuations between the independence and control? Will I learn to ebb and flow with her when I better understand dimentia?

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Katie (36) daughter of Marcia (70)


Wed Dec 29, 2010 5:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Denial or Dementia?
Lynn here chiming in again. My experience with my dad was that I tried to let him have as much control, or lead him to believe he had a lot of control, when he could handle a certain amount of his own destiny. Once he experienced The Big Decline in July 2009, he became totally reliant on me. There were no longer struggles about driving, living alone, having part time caregivers come in, moving to an ALF, etc., all those huge life changing events. He knew he could do almost nothing for himself and had to rely on me to advocate for him at the hospital and SNF rehab center and get others to help him as much as I could.
However, prior to that, I had to start taking control, which he didn't like, but safety was a huge factor for him. He had had numerous falls, could barely shuffle to his car, was doing things at home like leaving the hot water running full blast in the sink for hours, burning pans, etc. I had to make decisions whether he liked it or not because I needed for him to be safe and secure, and he wasn't. I hired part time caregivers and sneaked him to an ALF, made him get out of the car and talk with the people there. He was furious at first, but realized that it would be a good place for him. We put a deposit down and he felt good because HE had made the decision, not me. But if I had not done that when I did, he would have had The Big Decline, been in the hospital, with no plan for the near future. I think he realized then that I was working in his best interest and he became more accepting and reliant on me.
That doesn't mean he always complied, or always liked certain things but I really did try to have conversations with him about decisions/changes/plans as much as possible. I guess you could say instead of letting him make decisions that he wasn't capable of making, I'd tell him the alternatives and why I'd chosen what I did as a course of action. He was usually ok with that.
I knew that he would be furious about a huge contracting job that had to be done on his house, so I went on and did that myself and didn't tell him. He never did know about that, which meant he didn't get angry about it and I didn't have to listen to it!
When it came to his care, I had some very tough conversations, like why he had to go eat in the dementia unit. That was not my decision, but the ALFs decision and he was really hurt and angry about not eating with the men he'd gotten to know at meals in the regular dining room. I explained it gently any number of times, and he didn't like it or really understand, but it was the way it was. None of this is easy, for sure! 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 6:12 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Denial or Dementia?
Lynn,
Thank you. Again, perhaps I may also do a bit of forward thinking research. Mom will not do anything I suggest and can only take discussing anything such as meds or appointments for 2 or 3 minutes and she is done. I think I have time until the big decline begins but I'm not positive. I'm not sure if her hospital stay was the beginning of the big decline. She got lost in her house looking for the linen closet. Then, yesterday she baked and can put all of her pills in the boxes for the next day. She dresses, talks to me and my siblings on the phone but mostly watches TV, cleans a bit and occasionally works on her art. Like another stated, she seems to be busy all day.

I'll keep reading, observing and hoping. Right now, I feel like all the lights are off and I'm trying to find my way in the dark. Thanks to all of you experienced posters who are lighting small candles to show me the way.

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Katie (36) daughter of Marcia (70)


Wed Dec 29, 2010 7:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Denial or Dementia?
This is what I tried in right after The Big Decline - I'd schedule med. appts., tell my dad, put it on his calendar and remind him several days in advance every day. When I'd come to pick him up to take him, he was aggitated because "no one ever told me I had an appointment today" or, he'd call me when I was 500 mi. away at my house and ask why I wasn't there to get him (because he'd gotten the day and week confused and thought it was at that moment) So we did that for a while but as his cognition declined and his aggitation increased, I started holding back information that just seemed to upset him. It seemed easier on him and me if I just made the appts. and told the staff so he'd be dressed, shaved and ready to go before I picked him up for an appt. When I came to pick him up I'd tell him where we were going and he was ok with that. It seemed to decrease his aggitation.
Having the flexibility to change your thinking and communications on a moment's notice and adjust to what your LO can handle is one of the most useful things I can pass on to you just starting this journey. As they decline, you will need to change how you do everything concerning them. Some of the changes aren't huge, some are, and you never know when they will happen. But, being prepared by doing a lot of reading should help allay some of the element of surprise. All the best, 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 8:13 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Denial or Dementia?
Lynn,
Again, thank you. I am a teacher so I often have to change my method of communication and thinking. I'll get back to that mindset. I've been so immersed and thrown off kilter. I adapted the super organized, responsible, serious nature which is far from the true me. At least now I know I can be that woman if I need to but the teacher me just may be a better choice now. Thanks for pointing out what I didn't see- even it was in front of my face- use my teacher powers. Best to you.

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Katie (36) daughter of Marcia (70)


Wed Dec 29, 2010 8:38 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Denial or Dementia?
Hi. Early on, there were definitely fluctuations in the amount of independence my LO would demand. Sometimes she would be fine with my help, othertimes she would resent it. Lynn makes a good point about being flexible in communication and thinking. To do this I learned to listen very carefully and watch the body language of both my LO and anyone else we were interacting with. I consider this one of the gifts from this experience. I used my creativity. I also chose to let a lot of things go...if they weren't important who cares if my LO was relating something that never occurred? But the bottom line to me was "Does it affect her safety?" I think that often people are motivated by wanting to be right. I found that things worked better when I put that aside - she could be wrong and I would not correct her. This helped her to keep a positive self-image which was important to fight depression. Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Wed Dec 29, 2010 9:35 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Denial or Dementia?
So true, Annie. When our LOs demonstrate that they know exactly what is going on, it is also when we often see them frustrated, angry or depressed because they understand what they can't do anymore. It must be awful for them. To try to keep them happy it is best to not disagree (if you can possibly help it) most of the time, just nod your head or say "uh huh" a lot when they sound off the wall. Arguing and disagreeing I think brings down their self image which is already very fragile when they are having those rare lucid moments. We have to continually adjust to their changing moods and cognition level. 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 Dec 29, 2010 10:52 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Denial or Dementia?
These past three days have been much better. I was just telling a friend on the phone how much my mom had to be correct. I've observed that the more I say, "You're right," even if she isnt, our day progresses much better. I know it's pointless now but Lynn- last summer Mom and I got into a huge brawl because I was trying to pressure wash and fix her deck which I didn't do too well and she expressed how depressed she was because she just couldn't do what she used to. All the dots just keep connecting. Now perhaps I'll be better able to deal with the future instead of looking back and saying, "Ohh, that's why she..." I also started singing and filling in my own words such as, "She's so grumpy lord, Kumbaya, the sky isn't yellow Lord, Kumbaya." This tactic also works for pop and country.

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Katie (36) daughter of Marcia (70)


Wed Dec 29, 2010 11:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Denial or Dementia?
Loved your coping song, Tiny! It gave me a little chuckle. Great way to inject your own humor to help keep you sane and upbeat! 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.


Thu Dec 30, 2010 9:41 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Denial or Dementia?
Katie, as others' responses show, you are going through what many of us have gone through, though everyone's course is a little different. I am so sorry for mother's illness. My mother was diagnosed in February 2010 and I found this forum in August--what a godsend it has been. Just keep reading and asking questions. There are a lot of wonderful, supportive people who will help you. I've read the responses you've received and there is much wisdom in them.

One question I have for you is whether your mother has health care and financial powers of attorney. If not, I don't know whether she is still competent to sign them, but if she is and she is willing to do so, that is one big thing that can make things easier.

I wish you all the best in facing this challenge.

Julianne


Thu Dec 30, 2010 3:59 pm
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