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 Examples of fluctuating cognition and attention 
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Joined: Tue Apr 24, 2012 5:11 pm
Posts: 15
Post Examples of fluctuating cognition and attention
Hello All,

Could caregivers please give me concrete examples of fluctuating cognition and attention? And are these unique to LBD?

My mother goes from extreme fatigue and barely responding to me (or talking to me and then "zoning out" for periods of time") to seeming alert, talkative, and at times irritable (although she says she is still tired). There is not a pattern or way to predict her energy/responsiveness level. Is this what is meant by fluctuating levels alertness?

Also, there are days or hours when my mom seems okay other than ocassionally trying to search for words and having slowed processing. Then at other times she can't do basic things like buckle a seat-belt, remember or recognize if people are in a room with her, has no idea what chick-fil-a is (yet she has eaten there numerous times), does not recognize very familiar surroundings etc..... but then later has no problem putting on her seat-belt, tells me what to order from chick-fil-a, and knows her own house. Then there are other times that she asks me really basic questions, like why cars are curving (because they are turning at a light), but then the next day she tells me what she had for dinner the night before etc. Are these instances of fluctuating levels of cognition?

As for hallucinations, do people have them persistently for periods of time, then less frequently for a few weeks, and then they come back?

I never know what to expect, and I feel like people think I am being batty. I tell them about events, then they see my mom and she seems relatively okay, and then things happen again. Moreover, my mom seems okay at many times, so then friends don't understand why she just can't do things (like put papers away, empty the dishwasher etc.... but I watch her really struggle with basic tasks and it takes her a long, long time).

Problems with medication and interactions have been ruled out.

Thank you,
c


Thu May 03, 2012 8:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Examples of fluctuating cognition and attention
All those fluctuations and odd behaviors sound like an awful lot of our LOs. When and how our LOs will be lucid, or not, is anyone's guess. It varies a lot from person to person and hour to hour.
Since my dad did not have a lot of hallucinations, but he did have some, and he did have delusional thinking, I'm not a good one to talk much about hallucinations since our experience was so infrequent. I do remember days when he'd call and tell me he couldn't go outside (with an aid pushing his wheelchair) because it was pouring rain outside. It was clear and sunny out. Unfortunately, many people on here have LOs who have lots of hallucinations so they can speak more to that.
About the only thing I can say that may be of help is "expect the unexpected." Some days your LO may barely be able to hear, other days their hearing is extremely acute. Some days they can barely whisper, their thoughts may be scrambled and their ability to say words comes out as gibberish. In a short period of time their speech may be clear, thoughts lucid, and a normal level of speech. Sometimes they hallucinate and other times their mind seems normal.
The best you can hope for is that YOU can adjust to their often erratic behaviors and just try to go along with it. Correcting what they are saying or thinking will not be useful to you or them. Good luck, this is a real roller coaster and you have to do your best to take care of you while trying to take care of your LO as well. 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.


Thu May 03, 2012 8:53 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Examples of fluctuating cognition and attention
Fluctuations seem to be an integral part of LBD. We're still going through them even in the late stages of the disease. I think it's called the 'roller coaster'.

_________________
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.


Thu May 03, 2012 9:29 pm
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Joined: Tue Apr 24, 2012 5:11 pm
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Post Re: Examples of fluctuating cognition and attention
Oh my gosh, Lynn. Thank you!! I asked my mom's neurologist to test her hearing because there was an incident when she could not hear. It was tested and was fine. I felt like such an idiot. I thought I was over reacting until I read your post. So I am NOT imagining these problems!!! I get frustrated because at times i feel like my LO is aware of problems but as a whole cant communicate well.

As for adjusting, I am trying. I am young and never thought I would be taking care of my mom at this age. I love her but I hate this situation.


Thu May 03, 2012 9:56 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Examples of fluctuating cognition and attention
CAZ - there are all sorts of bizarre things that can happen to our afflicted LOs. My dad had had hearing issues for years. Then one day after he had gone through a terrible decline, I was in his room at the ALF. I forget what the circumstance was, but his hearing was so acute it was unbelievable. Others on here have had similar experiences. Sometimes it is a vision thing - like my dad thought he was watching sports on tv when his CGs had turned on soap operas. He'd get obsessed with clocks and the weather. He had to have a new watch even though he couldn't tell time. He had to have a clock on every wall even though he's say things like "it's August, so that means it's winter, so it's cold out." It might have been May, very warm out, and where he lived it definitely looked like spring or summer. But then he could tell you the most minute details about who on the Orioles hit a home run in a game in the 1940's playing such and such a team. It was uncanny. But he couldn't remember that he'd just eaten breakfast and thought that his CGs had "forgotten to take me to meals for 3 days." It was like living in the twilight zone. I never knew what he was going to come out with. Even though all of his CGs were women except 2 out of about 30 people, he thought they were all men. That has been another common theme on here for others. His favorite foods all of a sudden "tasted like poison".
Like I said, don't be surprised with anything, and if it will help your LOs dr. understand what's going on, write some of this stuff down. Some of the symptoms MIGHT be helped with meds. so make sure to communicate the unusual things to the drs. treating your LO.
It is a very sad and frustrating situation. Hang in there. Lots of empathy here on the forum. We've all been through it or are going through it, and just knowing that was a big help to me when I first found out about this site. 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.


Thu May 03, 2012 10:21 pm
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Joined: Tue Apr 24, 2012 5:11 pm
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Post Re: Examples of fluctuating cognition and attention
Does anyone know why these fluctuations occur? In other words, what types of neurological events cause fluctuations?


Thu May 03, 2012 10:36 pm
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Joined: Tue Apr 24, 2012 5:11 pm
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Post Re: Examples of fluctuating cognition and attention
Also mock turtle, could you give a few examples please? (I am sorry to hear your LO is in the late stages.)


Thu May 03, 2012 10:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Examples of fluctuating cognition and attention
Fluctuations in movement, speech, appetite, ability to respond to commands, as Lynn cited, even in vision and hearing, memory retrieval and spatial perception. This morning, for instance, he was able to speak quite well [although completely delusional in content] whereas a couple of weeks ago he was barely able to utter a word and only in a whisper.

With him, there is an inverse relationship between his motor/speech/cognition and his psychiatric state. His hallucinations and delusions are worse when his other functions are better and I'm sure it has something to do with how his medications are interacting. BUT, even aside from those issues, he has always shown wide fluctuations in both physical and cognitive status.

_________________
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.


Thu May 03, 2012 11:00 pm
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Joined: Sun Mar 25, 2012 3:56 pm
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Post Re: Examples of fluctuating cognition and attention
One of the most difficult parts of getting my mother officially diagnosed was that she would tend to look so good when the doctor saw her. I finally video-d her episodes and showing them to the neurologist and primary care physician at which point they both said."Oh, wow, that sure is LBD!" The episodes were a mix of interacting with her hallucinations, drifting in and out of REM sleep, perseverating on her delusions (currently there are worms in all her food) or just staring into space and mumbling, being unable to do simple things like figure out how to open her prescription bottles, etc. She is Longfellows little girl-when she is clear, she is very very clear, and when she is not, she is A MESS.
For my mom, 76, has had this for about 5 years, she becomes very childlike whens he is having an episode, which may last hours to days, and in between, she is absolutely her old sharp, funny, clear self.
Another example would be that one day (when she was still driving-no more) she took herself to the doctor, and when she came out, got into her car and started to pull out of the parking lot, she suddenly had no idea where she was. She knew it was familiar, and that she should know where she was, but she had no idea how to get home-and she has lived here all her life! The next day I took her to San Francisco for a doctor's visit, and she was telling me we had passed certain things on the way in and was absolutely right. She got us out of the city!
One of my biggest problems with her right now is that she ends up in the hospital a lot. After 3 days, she invariably develops a hospital psychosis-she hallucinates, becomes paranoid and distraught, and starts treating the staff and her visitors very badly. It is such a shock for them to have this apparently sweet, funny, considerate patient turn into a cursing, accusatory, sarcastic shrew!!!! And when she comes out of it, usually after we get her home, she is overcome with embarrassment! She needs full-time care now, and we tried a very nice facility, but by the end of a weeks she was so sure they were trying to kill her she would not accept meds, eat the food, or sleep.
We are now in the process of bringing her to live with me in New Jersey. Hoping she will tolerate the transition!!!


Fri May 04, 2012 7:43 am
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Joined: Tue Apr 24, 2012 5:11 pm
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Post Re: Examples of fluctuating cognition and attention
SWood, how did you manage to videotape her?! I feel like even if I tried to sneak-in clips with my iPhone that my LO would not have it! But that sounds like a perfect way to show the neurologist what is happening. The only problem, is the some of her moments are very fleeting (just a few minutes), so I suppose I need to capture the events that last longer.


Fri May 04, 2012 8:14 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Examples of fluctuating cognition and attention
When my dad first became very ill, I'd go with him to his drs. appts. and the 2 of us would see the dr. together. Then I'd ask the dr. if I could see her/him alone without my dad. That's when what was really happening would be discussed. After a few months my dad was no longer able to pull off "show time" with the drs. or anyone else. He was telling the psychiatrist that he was still reading 3 newspapers a day and various other things. He hadn't been able to even HOLD a newspaper for months, and if I held it for him, he had no attention span whatsoever. But, if the papers didn't come every day he noticed, yet he wasn't reading any of them. I let the subscriptions lapse one by one and he never noticed when there weren't any coming anymore.
They can be VERY good at show time for a long time, but eventually they don't have the strength to keep doing that and their real behavior is apparent all the time. I could actually see my dad struggling to maintain some decorum when I brought a neighbor to visit him, when he was very bad off. He held it together for about 10 - 15 min. and I had to end the visit because he was so exhausted and his very, very angry phase that he was going through couldn't be kept in check any longer. It was very hard on him and his neighbor. She left in tears, and so did I. 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 04, 2012 2:54 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Examples of fluctuating cognition and attention
c,

One thing I have noticed is that the extremes of my mother's fluctuating cognition and behavior have been like a pendulum that is slowing toward a stop. The swings were huge at first but are now much narrower, and that makes them easier to handle.

Earlier in her illness, I never knew what to expect, which mother I would see or talk to at any given time, or how she would be if I took her to the doctor. That was very stressful.

Now, two-plus years after diagnosis (but undoubtedly several years after it started), she is not too much different from day to day and, as Lynn pointed out, the ability to maintain "showtime" is gone. It's still hard to visit her or talk with her when she is living almost 100% in a strange, delusional world, but there are fewer surprises and that is a relief.

Julianne


Fri May 04, 2012 3:19 pm
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Joined: Tue Apr 24, 2012 5:11 pm
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Post Re: Examples of fluctuating cognition and attention
Thanks to all of you for sharing your experiences. I have more questions. ;) How do you tell if your loved one is hallucinating or being delusional? For example, my mom one day thought my husband was purposely giving her bad yogurt to save money (it was fresh, new yogurt). I asked her why she thought that, and it turned out that she was having taste misrepresentations (everything tasted spoiled that day, including water). Do you ever notice their memory and cognition is especially bad when they are most irritable? I write that, but I can already think of many times that is not the case. And how do the fluctuations in LBD differ from other dementia's good days and bad days?

I am just exhausted from this, because it has only been about three months and every day there are good moments that give me hope she will get better and then there are really bad moments where I am reminded something is really wrong. Cognition is one part, and the movement issues are another (some days she falls and feels frozen and other days I watch her tremors flare up but she speeds through a grocery store).


Fri May 04, 2012 4:28 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Examples of fluctuating cognition and attention
Some delusions and hallucinations are too subjective to be sure (like how yogurt tastes, I would say, might vary from one person to the next). But if good, fresh water tastes bad, you should know that is not right. (Although the sense of taste can be greatly affected by LBD and I'm not sure I would call that a delusion or hallucination, just a change of perception brought on by a diseased brain.)

And then there are the obvious delusions, like when my mother thinks her sliding closet doors are both moving back and forth on their own, or that there is a big speakeasy going on down the hall (of her SNF) and men are bringing in liquor in their canes. And last but not least, her current detailed and ongoing delusions that her two stuffed animals are live human children. I'm pretty sure that none of these things is happening!

In her case, I have not noticed any correlation between her memory or cognition being poor and and her being irritable. She gets irritable without warning at almost anything, and almost nothing. She constantly tries to pick fights with my sister over the phone, and if my sister just agrees with her to avoid an argument, my mother gets really mad. (My mother thinks I am her mother, and apparently even she doesn't pick fights with her "mother.")

All of this is so out of character for her former self that my sister and I have a pretty hard time with it. We are exhausted, too, but not by the rollercoaster of hope that she might get better. We are past that stage, as things just continue to go downhill and we are just exhausted from adjusting to that.

I wish you the best,

Julianne


Fri May 04, 2012 4:52 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: Examples of fluctuating cognition and attention
c, I am sorry you are having to deal with this.
I told someone recently that the LBD fluctuations are like the Forrest Gump quote on steroids...that box of chocolates where you never know what you are going to get.

There is a wonderful book that has helped me to refocus how I handle it. It is by Jolene Brackey, called Creating Moments of Joy. She helps me be able to shift gears more easily to go with whatever John's (my husband) flow of the moment might be. It seems to keep him calmer, which keeps me calmer.

Another thing that helped me was advice by Teepa Snow, who does seminars to train all types of dementia caregivers. Teepa says to always remember first that they are doing the best they can in that moment, to meet them there and try to gently either go with their delusion a bit if it is not harmful or redirect them.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri May 04, 2012 11:52 pm
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