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 Constant echolalia - how much time left? 
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Joined: Mon Mar 21, 2011 11:26 pm
Posts: 49
Location: St Pete Beach, FL
Post Constant echolalia - how much time left?
Hello everyone,

My father has taken a sudden turn for the worse. His shaking is so severe now that he has to be hand fed, and he is starting to have a hard time swallowing. He also can no longer communicate beyond very basic needs. Though he understands simple commands, he repeats the same word or phrase over and over without end. This will last his entire waking day. Not necessarily the same word or phrase. He will change it up, but as long as he is awake, he will repeat a short word or phrase out loud over and over, literally non-stop.

Sometimes he's trying to communicate something, which is usually heart-breaking because it's usually a general call for help like, "Help me please. Help me please. Help me please..." or "Oh no God. Oh no God. Oh no God..." And sometimes it's seemingly random, like, "Green uniform. Green uniform. Green uniform..." or "Halifax. Halifax. Halifax..." (He's never been to Halifax as far as I know."

It's awful to see him this way. He can't stop shaking and repeating phrases without end. Also, we have to prop him up in his wheelchair now with pillows because he falls to the side. His trunk muscles can no longer hold himself up.

We called in hospice, and they have started helping, but nobody will predict a timeline. His neuropsyche doctor saw him yesterday, and prescribed klonopin, even though this will effect his cognition, because the shaking is so bad and he is so upset all the time, and the though is that really his cognition is awful anyway and its more important that he is able to relax and be comfortable. (Note that we tried L-dopa about a month ago and the side effects were so extreme we could not continue.)

Robin or others. How long will he last like this? Does the disease make him calmer as it further progresses? Does the echolalia eventually stop? Does the shaking subside? Will he get to the point where he is less aware of his suffering?

Emanuel


Thu Mar 29, 2012 6:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Constant echolalia - how much time left?
Hi Emmanuel - if hospice is providing services to him now, they only accept patients when they estimate 6 mo. or less. As with everything else Lewy-related, there can be dramatic differences between people, so he could have more time, he could have less time.
I can only tell you from my own observations of my dad - your description sounds a lot like where my dad was in his last couple of months (the ataxia, repeating "help, help" over and over again even if he didn't need help). As far as your question about will he become more comfortable mentally, that was something that I'd hoped for for a year and a half, and truthfully, I don't think we ever got there. My dad seemed to be very aware of how bad off he was, and eventually how much pain he was in, till the end. That was probably the most heart breaking part for me. It was why I fought so hard to get him off the Namenda and Aricept, but it was an uphill battle with his CNP & drs., and my dad was the loser in that one. I am being totally honest with you here - my dad's last months were hell and I prayed every day he would die so his suffering would end. There seemed to be nothing other than lots of morphine that would make him more comfortable mentally as well as physically. That and short visits with a few friends and family members his last few days.
This is a really, really hard time for you to go through too, and I hope that you have hospice people as well as lots of friends and family to give you the support you need. I'll be thinking about you. I'm sitting here crying now knowing what you are dealing with and what you are likely to be going through soon. Big hug, 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 Mar 29, 2012 10:40 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Constant echolalia - how much time left?
I take klonopin…clonazapam…..

when I miss a dose…..I know it…..

it helps soften the dreams and the muscles…….at night….

it softens the muscle jerks in the waking time…..I know because if I miss a dose…..

so…..while 'it' may cause problems for some……klonopin…..may not……

it might help…….I pray that it does

_________________
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


Fri Mar 30, 2012 12:57 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Constant echolalia - how much time left?
Emanuel, I'm afraid I can't offer you any advice. I only want you to know that your poor Dad and your good self and your family are in my thoughts and prayers. How wonderful you are to be there for him and how frustrating it must be not to be able to help him. I too have prayed often for God to take Dad out of his misery. Stay strong and God Bless you, my heart goes out to you,
Ger xx

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


Fri Mar 30, 2012 8:31 am
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post Re: Constant echolalia - how much time left?
Do doctors really prescribe morphine in cases like this? He's not in great physical pain, but if morphine will calm him (especially his mind/fear) that might be a good thing. His doctor did not suggest this but it seems to make sense. His life as it is now is just horrible.


Fri Mar 30, 2012 3:27 pm
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Post Re: Constant echolalia - how much time left?
What medications is he taking now?

Julianne


Fri Mar 30, 2012 3:32 pm
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Location: SF Bay Area (Northern CA)
Post Re: Constant echolalia - how much time left?
Emanuel,

I'm sorry to tell you that the constant echolalia or perseveration is not an indication of anything by way of prognosis. Unless the intake of liquids really starts to decline, your father could live months like this.

Obsessive behaviors such as perseveration are very hard to treat. Sometimes MDs have luck with anti-depressants. Some find Depakote helps (this may also help with the relaxation part). Have you considered atypical antipsychotics? Those may help with the perseveration through sedation.

Just try to be as comforting as possible. Hold his hand, say that you are sorry you can't understand what he needs or wants but you will sit with him quietly for awhile. Meditate. Massage his hands and arms with some lotion. Speak softly. Tell stories of something you remember from long ago. Put on some music from when he was in his 20s. Sing to try to get him to sing. Try to be as calm as possible.

Emanuel


Fri Mar 30, 2012 4:08 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Constant echolalia - how much time left?
I didn't mean to imply that my dad was prescribed morphine for emotional reasons. In his last weeks he changed from not being able to feel physical pain when any healthy person would have been in a lot of pain, to being in physical pain all over his body all of the time. Everything hurt, including my trying to gently touch his hand, shoulders, whatever. His pain was excruciating, so he was prescribed morphine for that. As soon as it was administered he'd go to sleep or be very nearly asleep, so he was relaxed and not screaming out in pain or for help. It was the only time his face wasn't contorted in pain. He suffered terribly without the morphine, both mentally and physically. We wouldn't let our pets suffer the way some human beings suffer in their final days. It was agonizing for him and everyone around him.

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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.


Sat Mar 31, 2012 6:14 pm
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Constant echolalia - how much time left?
Lynn, my poor Dad is the same. Even on a morphine patch, his face is still all scrunched up in pain. We are still fighting with his doctor to give him stronger pain relief, but all they will give him is paracetamol. Only this Friday I had a shouting match with the doctor and he told me Dad went into renal failure last time they upped his pain relief. My question is Is that a very painful death ? would it be a good way for Dad to go? I hate looking at him in such pain and misery every day, but I know I will have my work cut out to fight Dad's case and allow Dad to go with a higher dose of morphine.
Ger

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


Sun Apr 01, 2012 8:33 am
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post Re: Constant echolalia - how much time left?
What causes this end of life pain? Is it a Lewey symptom? How come I haven't heard or read about this? Is this something we should be expecting with our father? He is experiencing intermittant pain, but as far as we can tell (he has a hard time communicating where the pain is coming from) it is from sitting in his wheelchair for long periods of time, so we switch him to his recliner chair, the bed, etc.

Given my father's level of emotional suffering at this point (that will not go away), providing him with opiate relief sounds like the most comassionate thing we could do. We are going to speak to his doctor about this tomorrow.


Sun Apr 01, 2012 8:38 am
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Post Re: Constant echolalia - how much time left?
I am not in the medical profession, but I have known a couple of people who have died of renal failure so this is strictly anecdotal. They both quietly slipped into a coma and then they were gone. Perhaps my dad died of renal failure - he'd had Stage 3 kidney disease for over a year before he died. Perhaps he died from a little too much morphine. Perhaps his body just gave out. Unfortunately I was not there with him at the very end, but I was told he was very peaceful and calm that day.
I myself have made it very clear in my very lengthy AD, that if I am in a state of poor health with no chance of recovery, that I want the maximum in meds (like morphine) even though they may shorten my life. It is really important, no matter how old we are, to get this stuff in writing AND to discuss it with our families and close friends so there is no prolonging of "life" if that is our choice. I don't ever want my kids, husband or others to question what I'd want - they've heard it ad nauseum! 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.


Sun Apr 01, 2012 8:59 am
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Location: SF Bay Area (Northern CA)
Post Re: Constant echolalia - how much time left?
Emanuel,

There are different kinds of pain that can come with dying. But not everyone gets pain. I wouldn't worry about it unless you have to.

Was your father placed on morphine? Is that helping?

Robin


Sat Apr 07, 2012 3:27 pm
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Post Re: Constant echolalia - how much time left?
This post from several years ago refers to an excellent resource on pain when dying:

viewtopic.php?f=12&t=1209


Sat Apr 07, 2012 3:31 pm
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Joined: Mon Mar 21, 2011 11:26 pm
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Location: St Pete Beach, FL
Post Re: Constant echolalia - how much time left?
No, my father is not on morphine. He doesn't have physical pain, at least as far as we can tell (and he is able to answer simple yes and no questions). However, he is suffering immense psychological pain. My presence seems to make him worse. It's like he struggles to tell me something but mostly it nonsense echolalia that comes out of his mouth. I will say, "Dad I don't understand what you are saying," and he'll respond, "I don't understand what you are saying." Then go right back to the nonsense phrase. Yesterday it was something that sounded like "fly it. fly it. fly it." I said, "Are you asking me to FIND something?" He said no. I said, "are you saying FLY as in how a bird flies?" He said yes. I said, "Do you want to fly somewhere?" He said no. I said, "What do you want to fly?" And he just kept repeating, "fly it. fly it." getting visibly frustrated that I did not know what he was trying to say. This is common when I try to communicate with him. I've taken some people's advice here and told him some stories from the past. Once he laughed, but more often than not he just starts crying when I tell him stories. I think he is afraid of dying. And he misses the life he used to have.

It's so hard to know how to help him at this point. Totally heart-breaking.


Sun Apr 08, 2012 2:33 pm
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Post Re: Constant echolalia - how much time left?
Sending a big hug Emmanuel. I do know just what you are going through. My dad would first get mad when I couldn't understand him, no matter how hard I tried. And then he'd get very, very sad. And wow, did that make ME sad! You just do the best you can do to make him as comfortable as you can, and that has to be good enough even though it seems like there must be something more you can do. Take care of yourself. It's a very stressful time. 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.


Sun Apr 08, 2012 3:34 pm
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