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 Have you ever had someone with LBD tell you to slow down?... 
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Have you ever had someone with LBD tell you to slow down?...
Have you ever had someone with LBD tell you to slow down?

To stop talking?

To turn the TV Off?

To talk slower?

that they couldn't keep up with what you were saying?

To Shut UP? NOW?

Then called you every vile name in the book, and then a few not yet in the book?

And then five minutes later…..begged you for understanding?

And begged you some more?

……

What did you do? Why?

_________________
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


Tue Apr 10, 2012 12:14 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Have you ever had someone with LBD tell you to slow down
Yes, Craig, Dad often yelled at me to stop making so much noise, turn off the TV - a favourite quote is @ You're always in an awful hurry - whats your rush, slow down ! ' I guess there were times when I was spinning when I was caring for both himself and my mother - there was so much to do and there weren't enough hours in the day.
When he said that to me, most, but not all, of the time, I did slow down and he made me realise I was going too fast - as I said before, spinning. There were times ( I won't lie) that I got annoyed, because I had so much to do, and I would feel like saying, I just have too much to do and I would be frustrated.
Most of the time, I did as he asked and turned off the tv, closed out the door so that he couldn't hear the kids making noise. When he got annoyed and told me to shut up talking, I learned to quickly do that instead of trying to soothe him. The more I asked what was wrong, the more I annoyed him, so I just went to the kitchen and let him be. Now I just sit there and read the paper if he gets annoyed with my talking. When he is ready for my company he will let me know , usually by asking me to feed him his dinner. I know he often feels guilty for yelling at me, but most of the time I just pretend it never happened. Of course there are times when what he says hurts, but I know it is the disease talking and not him, so I don't remind him of what just happened, and just carry on as if nothing had happened. Sometimes if he is really bad, I go and have a good cry, then pull myself together and go back and forget n anything happened.
Ger xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Apr 10, 2012 1:55 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Have you ever had someone with LBD tell you to slow down
It is very quiet now….
It is very slow now….
there are no voices….
there is no TV….

there is no one to tell anything to….

there is no LBD dot ORG for someone with this disease……

not everyone has a caregiver…..
you do not know their story….
and nobody wants to know their story….
really?
then where are they?

……
I am okay….
Just lonely….not boy/girl…..just lonely
Isolated is more the real name….
I just don't have anyone to take down with me…..
I can't afford to get depressed….I might forget my meds….
I can't afford to not tell my story….NOW….
Soon….I won't be able to...

_________________
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


Tue Apr 10, 2012 2:15 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Have you ever had someone with LBD tell you to slow down
No, Craig, in the 40 years I have known him, Coy has never once told me to shut up. Nor have I ever said that to him. I can honestly say that our arguments and disagreements have been respectful. Even in the first awful year of his dementia (and inflamation of the brain) when his paranoia accused me of stealing, etc. he has never called me vile names. That first year is the only time I've heard him swear, but he wasn't swearing at me.

So I can only guess how I would react. It is too hypothetical to even speculate. I know that my heart goes out to caregivers who have to deal with this, on top of all the sacrifices all caregivers must make. My mantra in that first year was "It is not Coy talking, it is Lewy." But I don't know if that would have been enough to keep me going through a barage of vile name-calling. I'd like to think so, but I just don't know.

Coy sometimes asks me to slow down, or I can tell by his behavior that I'm going too fast or he is isn't taking in what is going on. I do slow down. Depending on the situation I may apologize. Today I said to him, "Oh dear. I switched subjects without warning. No wonder you are confused. I'm sorry -- I think Lewy adds enough confusion in this house, I shouldn't be doing it too!" I said it with a smile and he laughed. (We both like to blame Lewy a lot.)

Coy is also pretty good with knowing his limits. He will shut the tv off (or ask me for help if he is having trouble with the remote) when it is overload. He loves for the family of 20+ to come over, but after he's had enough he goes into our room, moves enough coats off the bed to lie down, and rests for a while. No one minds. He usually comes back out to say goodbye. On Easter at my sister's he enjoyed soaking in some familiness (and lots of great food) but was glad when I guided him to sit quietly and watch golf on television rather than interact with the chaotic mob.

We have been very, very lucky that violent or hurtful language is not (so far) a part of the many awful changes Lewy has caused in our life. My heart truly goes out to those who are dealing with that.

_________________
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 Apr 10, 2012 2:32 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Have you ever had someone with LBD tell you to slow down
BayouCajun wrote:
Have you ever had someone with LBD tell you to slow down? No. Often told me to hurry up, especially if I was performing a care procedure.

To stop talking? Yes.

To turn the TV Off? No.

To talk slower? No. But he often demanded that I drive slower!

that they couldn't keep up with what you were saying? No.

To Shut UP? NOW? Yes.

Then called you every vile name in the book, and then a few not yet in the book? Yes.
And then five minutes later…..begged you for understanding? Never.

And begged you some more? Nope.

……

What did you do? Why? I shut up. And I apologized because I knew I had annoyed him. Sometimes I cried. That really made him mad. :-([/color]

_________________
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 Apr 10, 2012 10:04 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: Have you ever had someone with LBD tell you to slow down
Craig,
If a marriage wasn't working prior to LBD, adding in LBD really accentuates the problems. Could the "well spouse" get counseling? Could both spouses go for counseling?
Robin


Tue Apr 10, 2012 10:30 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Have you ever had someone with LBD tell you to slow down
There are many of us who have experienced the Dr. Jekyll-Mr. Hyde aspect of LBD. Craig, you must understand that when our LOs turn on us, after many years of closeness, it is very painful, even when we know it comes from Lewy. My husband was a gentleman [and the love of my life and my best friend] prior to Lewy. If he had not been, the Mr. Hyde persona may not have been such a shock. Between paranoia, Capgras, hallucinations and delusions, I never knew what he was really thinking. I still don't but at least the Capgras and paranoia are behind us now.

_________________
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 Apr 10, 2012 11:24 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Have you ever had someone with LBD tell you to slow down
Hmmm.

Mom didn't yell or use vile names for me, but then again, she couldn't. She lost her words early. But she often cried quietly in frustration.

She couldn't handle it when too many things were happening around her. It wasn't necessarily volume (she'd lost a lot of her hearing over the years) so much as it was speed and too many sources of sound. She also had trouble watching any current TV shows, though she did enjoy some programs. The problem was that current movies and shows have too many or too complicated plots happening all at the same time and they switch between plots too quickly for someone with cognitive concerns. Mom knew she was smart enough to understand them, but had trouble keeping up. I kept the TV on reruns of old shows like Dick Van Dyke, etc. and rented a lot of movies from the 50s and 60s, especially musicals. They generally have no more than two plots going on at the same time and move at a more relaxed pace. So Mom relaxed when she watched these.

As a caregiver, I got used to it and sometimes tried to imagine myself in her place. If anyone can go through dementia gracefully, that's what Mom did. I don't remember any outbursts or name-calling (but then again, she may have tried and not gotten the words together). But she did get visibly upset and I may have gone overboard in trying to protect her. I suspect that I would not be so graceful. I know a lot more vile names than Mom did and a few of them are bound to stay with me long enough for me to use them.

What to do? Like anything else Lewy throws at us, have a cry, take a breath and forgive for something we know wasn't intended or wasn't because of anything we did. But then again, Mom was so gentle. If she hadn't been, something like that could tear me apart. I have not been the most confident caregiver.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Apr 10, 2012 4:47 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: Have you ever had someone with LBD tell you to slow down
there is a story in this post….

now think of this list as a progression…..

there are a few steps left out….not on purpose….

I will add one in…now….

….don't talk over me…..

……

now lets set up two scenarios:

Scenario 1:
Spouse has LBD….neither spouse knows this…..there is no diagnosis…
Other Spouse is a 'Well' spouse…..I guess that would be a 'Normal'?

Scenario 2:
Spouse has LBD…..both spouses know this….there is a confirmed (as close as humanly possible without an autopsy) diagnosis…..
Other Spouse is a 'Well' spouse…..

okay….I am going cheat…..
Scenario 3:
Spouse has LBD…..neither spouse knows this…..no dx….
Other Spouse is NOT a 'Well' spouse…..other spouse is not a 'Normal'…….

Scenario 4:
Spouse has LBD….both spouses know this…..confirmed dx….
Other Spouse is not a 'Normal'…….

it gets interesting now………

I am in the middle of something important…..
but, want to explore the progression…..

Why?

just because….

because this an important thing in my life right now…..as I am sure it has been, is now, and will be for others……

I am going to throw out a word that will make some of you very uncomfortable….(welcome to my world)…..
that word is 'ABUSE'…….

I do not use that word lightly…..nor do I accuse anyone…..
I just want to explore this subject……

then at some point….another word……
Depression…..
and then another…..
Resignation…..
and then another…..
Sadness…..
and quite a few others….

but first……the progression…..

…..welcome into my world…..will you please come in?

_________________
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


Tue Apr 10, 2012 7:23 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Have you ever had someone with LBD tell you to slow down
Is divorce better than abuse, sadness, resignation, depression...?


Tue Apr 10, 2012 8:01 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Have you ever had someone with LBD tell you to slow down
Craig, I'd have to guess that Scenario 2 has the best chance for happy outcomes. (Although I smiled at the word "normal".)

An unwell person may not always be a suitable caregiver. I can imagine that someone with poorly controlled bi-polar disease, or schizophrenia, or active alcoholism, or ... who knows? a number of other conditions, just may not be capable of carrying the heavy emotional load of caregiving for someone with dementia. Scenarios 3 and 4 sound like the setup for a lot of pain for both parties.

As for abuse, I’m not sure where you are going with that, but the topic comes up in a wonderful book I’ve just read: Loving Someone Who Has Dementia, by Pauline Boss. She says,
"Caring for a family member who was or is physically or psychologically abusive is dangerous. Feeling as if you want to retaliate is also dangerous. These are justifiable reasons for not being a caregiver."

I experienced one episode where I was afraid the Coy might physically harm me. Fortunately I was able to diffuse the situation. If episodes like that had been frequently repeated, I’m pretty sure I would have given up trying to do the hands-on caregiving. Similarly, I know how painful his paranoia was to me. How much worse would it have been continually berated and called vile names? If that had been the case and it went on and on with no way to diffuse it, I don’t know if I could have withstood it.

I would not say that Coy (in this hypothetical situation) was doing abuse. That implies intention. But I would say that what I was receiving (hypothetically) would be abuse.

I would not ever abandon Coy. I will always be his advocate and his comforter and his encourager. But I can see circumstances where I could not do the day-to-day hands-on care. I can see situations in which placement in a long term care facility would be necessary.

Boss points out in her book that almost all of us will be either caregivers or care receivers at some point in our lives. That’s a sobering thought! I think I’m a pretty good caregiver, at least for someone as pleasant as Coy. I wonder if I would be a good care receiver? It is very scary to think that I might not have control over that.

_________________
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 Apr 10, 2012 8:26 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: Have you ever had someone with LBD tell you to slow down
Robin,

you are not playing fair……tsk, tsk….

we are still in the progression….and you are looking for a solution…..

……

lets add a scenario….

Scenario: 5
Person has LBD….nobody know it…..
Other person…..cable receptionist, grocery clerk, government worker, pleasant person, real nasty negative person….

Scenario 6:
Person has LBD…..person has confirmed dx….tells everyone so….
Other person…..take your pick……and has been told of dx…..

……

so now walk through that progression of steps….in each scenario…..
slowy…….no cheating…..
and tell me where abuse can occur?

_________________
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


Tue Apr 10, 2012 9:31 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Have you ever had someone with LBD tell you to slow down
Abuse can occur in absolutely every scenario. The abuse can be dished out by the caregiver, by the care receiver, or by the cable guy. It can be deliberate or inadvertent.

Some conbinations are more likely to provoke or engender abuse, but, hey, we are talking human beings here. There is no magic formula to completely eliminate the possibility of abuse, especially since cognitive impairment is involved.

_________________
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 Apr 10, 2012 9:39 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Have you ever had someone with LBD tell you to slow down
Jeanne,

you are going to get most of points before anyone else has a chance…..

but….you bring up another word….
that I use often…..

and thus it must be added to the word list:

Dangerous…..

so lets add another….

Safe…
and another….
Secure….
Safety, Security….

I want to feel safe and secure, I don't want to be in a dangerous situation….
I want you to feel safe and secure, and I don't want you to be in a dangerous situation….

and thus another word….

Control…..
again….
Control….
AGAIN….

CONTROL….
who, what, where, how, when…..

so…..back to the progression….

lets apply the 'elements' of Control to our list of progression….in our theoretical uncomfortable discussion…..

who, what, where, how and when?

insidious little disease, isn't this?
someone who can write all this nonsense…..and have the gall to try to convince anyone he was having problems…..
that he can't Control?

but…..I digressed…..jumped a little ahead….lack of control….wouldn't you say?

_________________
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


Tue Apr 10, 2012 9:59 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: Have you ever had someone with LBD tell you to slow down
I am going to wrap this up….

Pat…thanks for sharing your answers….I want to cry for both of you….

thanks to all of you who anwered….

……

the point I was going to make is this…..
I experience this progression in a communication….if…things progress that way….
I thought I would share this, because so few people surrounding me in my real life….understand what is going on….
even those who have been told before…
even those who have the the same progression in written form from the Alz Assoc and other dementia Authorities….

If doesn't matter to some….they just will not take the time to listen or read or believe…..
Some don't remember….
Some try……
Some fight with the patient…..
Some push your trigger just to see fireworks….

And some get it right…..they care….they take their time….and avoid every trigger, as they discover them…..

As a patient….it doesn't take long to figure out who is who…..
At least it doesn't for this patient….at this time in the course of my disease….

I thought this was important to document on this site for the following reason….

Safety for all…..

Patients who aren't able to express themselves like I am able to….or aren't able to move themselves away from someone triggering them…..
Will be a part of real frustrating experience for all parties….

And Caregivers….not aware of triggers….and unable to recieve this information from their LO's will surely be in a frustrating experience….

I most likely did a poor job at this attempt….
I apologize for any bad feelings created with this, if any were….no one said any were…it was an attempt to help…..

_________________
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


Thu Apr 12, 2012 12:41 am
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