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 Lots of laundry 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Lots of laundry
Coy tends to put clothes he takes off into the laundry hampers. This sounds appropriate and a good habit, right? Today was pretty typical. He got dressed and he put is pajamas in the hamper. We went out for a few hours. He was tired when we got home. He undressed, put his clothes in the hamper and put on clean pajamas. (New ones. I've recently increased his supply of night clothes.) He got up in a couple of hours, put the new pajamas in the hamper and dressed in fresh clothes. At bedtime he took another clean pair of pajamas and put his clothes in the hamper.

Hmmm ....

I've been thinking about this and I think it is a difficulty with conditional behavior or decision-making. I think it is hard for him to think "If this condition is true, then behave this way. If another condition is true, do something else." It is easier to think, "I've worn these clothes so they go into the hamper," than to decide, "I've only worn these new pajamas a couple of hours so I could wear them again tonight." And it would get even more complicated if he had to take it further and reason, "I've only worn this shirt an hour, but I spilled something on it, so after my nap I'll wear a fresh one."

Believe me, I'd rather have extra laundry than have to deal with a loved one who wears the same clothes day after day and has to be somehow persuaded to change once in a while. I am not complaining or looking for advice. I'm just sharing this lightbulb that went on about "conditional" behavior for Coy. Maybe that is why he insists on zipping his jacket every time he puts it on. It may be too hard to think, "I'm only stepping into the garage to get in the car, where I will want to unzip it. I can leave it open. But when I walk to the mailbox on a cold day I need to zip it up." By zipping it up every time he avoid decisions.

We take so many complex thought processes for granted, don't we?

Does this seem to correspond with some of your LO's behaviors?

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Dec 07, 2011 2:47 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Lots of laundry
habits…... :roll:

procedural memory….is a different animal….at least thats what I have been told…

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Dec 07, 2011 3:27 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Lots of laundry
When he was able, Derek was changing his clothes several times a day. Part of the 'problem' was his total lack of diurnal awareness. For years, he has been incapable of discerning night from day, regardless of the brilliance of the sun or the totality of darkness.

_________________
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 07, 2011 9:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Lots of laundry
My dad, for the most part, stopped doing almost all normal activities - showering regularly, changing his clothes daily, eating, seeking out his friends, anything that had been a normal activity when he was still living at home. When he went to the rehab facility and then ALF, the only thing he initiated was wanting to have his Depends changed constantly, whether it was necessary or not. The first month we went through hundreds of dollars of clean Depends ending up in the trash. He became totally unconcerned about his clothing being changed or any other normal activity, though.

His main interest was getting his Christmas cards done, and this obsession was 12 months a year. He was also obsessed about getting to the ALF dining room for meals. His sense of time (despite all the clocks, watches and calendars) was all jumbled up, and when he could still use the phone, he'd call me and tell me "they haven't taken me to a meal for days". I'd check it out and they would have just brought him back from a meal. This also happened when I was there and had just taken him to a meal and fed him myself.

There were no normal routines anymore. 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 07, 2011 10:14 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Lots of laundry
procedural memory….

I am going to take a stab at this from my perspective….so, just my thoughts…

Mayo said…procedural memory works differently than decision making process or short term memory….

so….

does procedural memory work like a clock….

8:00 do 1
9:00 do 2
10:00 do 3…..

I don't think so…..

to me…..time is a familiar concept….but, it doesn't work for me….
what I 'think' I can do in a block of time and what happens…..never coincides anymore….
I used to make a living……time was an important factor…

so….time and procedure…..not the same thing…..

or does procedure work like this:

feet hit floor in morning….
1. wash face
2. brush teeth
3. check calendar
3. make coffee
4. take provigil…..(haven't made this a habit yet…..maybe should be #1)
4. a. mark calendar (provigil taken) and all previous steps done, and check whats next)
5……..
6……..

or…….
1. Get Handed Coat…
2. Slip Coat on….left arm first, right arm second….
3. Zip Coat….
4. Pat down pockets….
5. Walk out Door….

now for the hard part……
for both patient and caregiver…..

don't change anything in the procedure…..
time doesn't mean anything….
the procedure does…..
don't slip another step in…..
don't change the procedure every few days….
expect to spend 21 days forming a habit from the procedure….
don't move anything involved in the procedure…
don't move where you store the coat…
don't change what arm you want him to put in a sleeve first…
don't ask him to sit down before he zips it…..
don't ask him to do anything else until that procedure is done….completely…..

…..remember the concept of thoughts becoming disassociated…..
……its not short term memory that is lost…..all of the steps are there…..
but….if a distraction is introduced…..
then the procedure might become disassociated from what is going on……

of course…..procedural memory isn't going to last forever….either….they said it lasts longer…(I'll take that and try to use it)

so…..lets have so fun now……

at Habit…..
specific things were discussed….
like….
forgetting to lock front door of house….
or forgetting to lock car door…..
and having to walk back to the door and check it…..maybe multiple times to make sure I locked it…..

so…..make a procedure……with a few steps…..
maybe reinforce the action of locking the door with speaking a phrase…
then…..do it the same way every time…..
no deviation…..

1.Take Keys out of pocket
2. Lock Door
3. Put keys back in pocket
4. Say out loud….'Locked Door'…..'Locked Door'…..'Locked Door'
5. Pat down pocket to make sure keys are in pocket…..
*Keys are in pants pocket…..always…..day and night…..I never…..NEVER have to guess where my keys are…...

…..I was doing some of this before Habit program…..now I know why……it works…..

food for your thought…..see if this is familiar……

IT IS VERY FRUSTRATING…..
WHEN I AM DOING SOMETHING AND SOMEBODY WANTS ME TO….
STOP…..
STOP MOMENTARILY…..
CHANGE SOMETHING ABOUT WHAT I AM DOING…..
INTERRUPT ME…..
TALK OVER ME…..
ATTEMPT TO CONTROL ME IN ANY WAY…..

makes sense to me why it is this way…..now…..

stinks if you aren't me and are around me….

stinks to be me…..too…..

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Dec 07, 2011 3:08 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Lots of laundry
so…..calendar….

calendar takes the place of short term memory…..

calendar becomes my memory…
it Habit is established to continually check calendar and mark off items completed….

keeps things working independently longer…..

so…..if you understand how this works….

you…..MIGHT…..get some of this to work for you….

so….
since Habit program….
the calendar works when I use it….
nothing works when I don't use it….ask me how I know….

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Dec 07, 2011 3:15 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Lots of laundry
Procedural memory explains a lot. My MIL has a set procedure for going to the bathroom, a set procedure for eating, a set procedure for coming to the living room (5pm each night when the news come on - on the dot - not a minute before). She has a set procedure for the sequence she puts on clothes, a procedure for almost everything. Disrupt the procedure and she becomes agitated. We stick to her procedures and all is smooth sailing. Once I took her water glass out of the bathroom at night so she wouldn't go potty so much. Hoo, boy. That was the wrong thing to do. So the glass is back and even though you have to force a cup into her hand while she sits in her recliner, she can now drink water every time she goes to the bathroom.

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


Wed Dec 07, 2011 7:21 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Lots of laundry
Craig, the first time I heard about procedural memory being different than memory of facts was after Coy's head injury. Coy told me he was coming home from the hospital and that even though he didn't know his address he could look it up in the phone book and tell it to a cab driver. Wow! How could he remember how to call a cab or to look up his own address in a phone book if he couldn't even remember where he lived? Different types of memory are involved, the hospital psychiatrist told me. Remembering a process (how to look something up) is different than remembering a fact (an address).

I think what I am observing is what the Habit people were telling you about procedures. If you were to draw a detailed process flow of our everyday procedures there would be many, many decision diamonds. We don't even think about them -- we just know how to make decisions at decision points. For example, when taking pajamas off, one of the diamonds would be "Have I worn these pajamas for at least a full night?" If yes, the path would lead to toss them in the hamper. If no, there would be another diamond, "Are these pajamas clean enough to wear again?" None of us need a diagram to go through this thought process -- it just happens. For Coy, there is now an inability to ask/answer those decision-point questions. So pajamas always go into the hamper when they are taken off.

I think the calendar is a great idea. Coy has a calendar book where he keeps appointments. The more detailed "to do" stuff would be too hard for him at this point, I think, because writing is hard for him to do reliably. Sounds good for folks at an earlier point.

Thanks for your insight into not interupting a procedure once started. Coy folds hand towels a couple of times a week. Today I had two full loads of little towels for him. He asked for his lunch and I served it to him. But several minutes later I noticed he was still folding towels and his pasta was getting cold. Now I think it would have been better to give him one basket of clothes, then lunch, then the second basket. I'll bet that doing the task twice would have worked better than trying to take a break in the middle.

Your perspective is very helpful, Craig.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Dec 07, 2011 7:40 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 744
Location: LA
Post Re: Lots of laundry
Exactly! Craig, exactly.

I'm so thankful for a few of the things I did right in supporting Mr Bobby. Your explaination helps me think maybe I [sometime] did as I should have.

Craig, I know this is hard for you to be teacher from the inside out but if care givers will listen to you it will be so helpful to both caregiver and patient.

Jeanne, your probing questions and remarks are also valuable. I do not jump into the conversations but they are not lost on me.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Wed Dec 07, 2011 10:59 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Lots of laundry
Craig, you are helping me to have more insight into John and how to help him. You are making a difference.

He is not like you in so many ways, but when you explain your thoughts, there are insights that come about my John, who is so different, but still fighting the same monster.

Thank you.

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]


Wed Dec 07, 2011 11:58 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Lots of laundry
Dorthea, I agree completely with you. Jeanne, your insights enrich me as well.
Thank you.
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]


Thu Dec 08, 2011 12:00 am
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Lots of laundry
Oh how I wish I could get him to put his urine soaked clothes in the plastic clothes basket! He puts them on the carpet! This is amazing to me because he can still tell his sons how to change the oil in their cars! Some things just don't make sense. Perhaps he is not aware that the clothes are soaking wet??? He always used the clothes hamper before lewy took over.
Baffled...
Roxanne

_________________
My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Thu Dec 08, 2011 5:18 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Lots of laundry
I agree, Roxanne, some things just don't make sense - to us. I'll bet they make sense to Lewy. 8)

He used to put dirty clothes in the basket. Did you perhaps have an exception? Like, don't put wet towels in the basket? Or has he reverted to a point in his childhood before he took responsibility for placing clothes in a basket? I'm convinced there is some explanation for these apparently strange behaviors, but I am not convinced that we will ever figure them all out.

If it is worth the effort, you could try to establish a habit, by calming repeating the same cues each time he takes dirty clothes off. If you can do this faithfully for at least 3 weeks you might establish a new habit for him, as Craig explains. Or you could just pick the clothes up yourself and pick some other battle to fight. :lol:

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Dec 08, 2011 5:43 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Lots of laundry
Oh Jeanne! I will not survive another 3 weeks! Yes, seriously this could be an old habit of not picking up his clothes that he had before I met him 35 years ago. AND I remember him telling me a story about peeing in a leather shoe when he was little staying with his grandparents. Grandma had to put the shoe in the oven before they could go to town! Looking back, so many strange behaviors that I thought were cultural!!
Thanks so much,
Roxanne

_________________
My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Thu Dec 08, 2011 6:14 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Lots of laundry
Sunday we went out to dinner and a play with friends. In the afternoon I asked Coy if he would like a bath. Yes, he would.

We did all the usual steps in the usual order. He asked if I'd brought his pajamas into the bathroom. I reminded him we were going out, and we had just picked out the clothes he would wear.

When he was done and went in his robe to the bedroom he searched in his pajama drawer. I reminded him again about going out and pointed to the clothes we laid out before the bath.

I left him alone briefly and when I came back he was again picking out some pajamas.

Usually, but not always, when he takes a bath he is getting ready for bed. He is cognitively weaker right now than he usually is, and apparently dressing to go out after a bath was a huge disruption to what he thought of as the normal routine. I had changed something in his procedure. He was really looking forward to the evening event, and he did not get belligerent when I reminded him he needed to dress for it. But it was clearly hard for him. Having recently read Craig's description helped me be patient with him.

I think when he is cognitively stronger the routines are not as critical. At least he's never had a problem before taking a bath during the day.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Dec 13, 2011 1:59 am
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