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when we become non verbal and what silence is like
alz+
Posted: Thursday, August 29, 2019 2:07 PM
Joined: 9/12/2013
Posts: 3550


When we can no longer speak or write in a way others understand, what is it like inside that person's mind?

Because I communicated with my Dad when he no longer spoke, and especially the experience of doing that every night during his last week of life, how profound it was and wonderful - it made me wonder what it was like for him, and possibly me at some point.

I used to be soaked in fear after diagnosis and the reaction I got from the people I would be depending on made me understand most people do not believe we can communicate without words in very specific order.

Have you had a time when you "connected" to someone without words, when you thought about someone you hadn't heard from in years and they call you? when your gut told you to NOT do something and it was right?
When someone you love has died did you get a dream of them? Did you feel a presence?

***
was looking for a project I could do lying in bed and am going to research what people have said about being in a coma, near death, and after death experiences of loved ones being near by or communicating.

Coma Communication: From people reporting on their experiences and from outside observations, coma work qualitative research has found these main processes, listed below, occurring or trying to occur within people in coma and other states of altered consciousness: 

Titanic battles 
Great love stories 
Memories 
Reactions to the surrounding environment 
Spiritual connections 
Attempts to connect to the outer world

(11) How can I tell if the patient is in pain?

Coma Communication: If possible, ask if the person is in physical pain and what they are feeling through binary (yes/no) communication. What may appear as a physical pain signal from the outside could be a different experience on the inside. For instance, tears may be caused by physical pain, an emotional reaction, or spiritual impasse. The tears could be for hurt, joy, anger, frustration, feeling touched, or loved. Please don’t make assumptions but rather support the person by feeding them sensory grounded information. For instance rather than say, "You are crying; you must be hurting." Say, "There is water coming from your eyes." This "fill in the blank" type statement will help the patient with their awareness and at the same time allow them to fill in their own content and gain more awareness about themselves.   "

*****

Looking for any insight into living with a non verbal ALZ or other dementia person and ways people communicate.

home alone today, too tired to do much and find myself sitting and gazing off much more than ever in my life. I am "lost in a world" different than dreaming, sort of like day dreaming and yet different. 

I met a woman in 1972 who had come out of a 10 month coma, she said the whole time  she road a magic carpet all around the world. I never forgot that conversation. 

Other cultures have words for these altered states. I am using the advice of "when facing fears, take an interest in them" again.  We do not disappear, become empty, we are not going to be less than fully human.

have a gentle weekend!

 


Doityourselfer
Posted: Thursday, August 29, 2019 4:40 PM
Joined: 9/5/2017
Posts: 433


You have extraordinary insight!
jfkoc
Posted: Thursday, August 29, 2019 5:25 PM
Joined: 12/4/2011
Posts: 17713


alz....that's a lot to think about.

I never felt that I had lost "contact" with my husband. I have had one dream he was in just days after he died. He was leaving our bedroom with the dog and was wearing my favorite Madras shirt and khakis. There are times when I feel him near. It is not thinking of a memory. He is just here. I do not talk to him ....there is just a warmth?


alz+
Posted: Friday, August 30, 2019 11:28 AM
Joined: 9/12/2013
Posts: 3550


JFK OC - exactly.

There are studies out there that 60% of people report dreams and "visits" of their loved one after death. 90% of that 60% never tell anyone because they aren't sure, they don't want to be thought of as nuts etc.

What you describe - exactly the other sense we have, and the symbolism in your dream is so gentle and loving and meaningful! 

Deathbed visions are also common and usually of same 5 types. People are not aware this is widespread and common so they don't talk to each other much about this or dismiss it as wishful thinking.

My Dad visited me in dreams at least once a week and he was always sitting at his desk, accounting books open, his head in his hands - and I knew he was trying to tell me to "check the books" in regard to money. My son eventually stood in and interrupted my mother sister and brother and broker trying to cheat me out of a share in inheritance. The dreams stopped.

Doityourselfer -

share experiences you have had or thoughts on what people dread about dementia.

I think I did not make my point that some people seem much more distressed about the disappearing idea of Alzheimer's, that their lives are or will be worthless.

I'm trying to figure out for myself if these blank states of silent gazing are dead spaces as people think (which leads to warehousing people without proper environment or human contact) - if these states are actually different planes of consciousness, some that might be equivalent to ancient beliefs.

what do you think? have you cared for or known someone who was unable to speak but could communicate?



alz+
Posted: Friday, August 30, 2019 11:44 AM
Joined: 9/12/2013
Posts: 3550


a state of total absorption is what I am trying to describe, a state similar to the concept of Samadhi or ecstatic states in religion or the psychedelic states of Being One with the universe.

meant this to counter the fear of what brain changes represent to soothe fears about having Alzheimer's. My sister looked at my Dad staring and saw him as gone. I looked at him and saw him melting into memories or another state of consciousness where he was incredibly content.

People who have not been verbal in years can and do speak at end of life, I was witness to this myself with a friend of my mother's. When I am in the state of staring off my eyes feel locked, I am transported to a dimension of concentration, I can not make myself go there, it just happens - another reason to not drive.

also forgetting to turn off the hose = bad, forgetting a neighbor's needling = divine

  anything is possible since observation so far have been made with the prejudice of Blank Slates Empty Vessels Dead Eyes etc etc etc.

look at things with new eyes, question the fears.

samadhi:

Perfect union of the individualized soul with infinite spirit. (1) A state of oneness; complete absorption. (2)

Samadhi, which literally means “to direct together,” is the state in which the yogi perceive the identity of his soul as spirit. (3) It is an experience of divine ecstasy as well as of superconscious perception; the soul perceives the entire universe. (4) In other words, human consciousness becomes one with cosmic consciousness. (5) The soul realizes that it is much more than the conditioned body. (6) Christian saints have previously described this experience as “mystical marriage,” in which the soul merges into God and becomes one with Him. (7)

Although human consciousness is subject to relativity and dual experience, samadhi is the state in which experience is whole, infinite, and single. It is the eighth and final step on the path of yoga described by Patanjali. Samadhi may be attained through deep, continuous, and correct meditation. In this state, the three aspects of meditation — meditator, act of meditation, the object of meditation known as God — are finally united. Just as the wave melts into the sea, so too the human soul becomes one with the supreme spirit. (5)

https://www.ananda.org/yogapedia/samadhi/

 


Doityourselfer
Posted: Friday, August 30, 2019 2:43 PM
Joined: 9/5/2017
Posts: 433


I don't know anyone who is unable to but can communicate.   I often wonder what's going on in my husband's head when he's silently gazing, or staring into space.  He seems to be in his own world.
jfkoc
Posted: Sunday, September 1, 2019 11:45 AM
Joined: 12/4/2011
Posts: 17713


I believe we communicate non-verbally all of the time.

I studied neurolinguistics in graduate school. Fascinating stuff . Trial lawyers will routinely hire an expert to translate this non-verbal form of communication. How we sit, arm movements, eye movements everything is telling about what our mind is doing.

I do not think the mind becomes dormant. 


alz+
Posted: Tuesday, September 3, 2019 2:03 PM
Joined: 9/12/2013
Posts: 3550


I think it is certain 90% of communication is body language.

I'm thinking the Stare and that look about a person with ALZ that are "somewhere else" might be a mystical state. Seems like believing that gives me a freedom and self respect so why not? 

Today, came back from slow walk with dog and found gate to yard open. Habib left for day and thought he forgot. I shut the gate and before I could get to house steps the gate opened. I went back and shut it, it opened again. I said "Whoever wants to come in, come on in then" and closed the gate and stayed shut. 

Then I felt my Mother (who I have always been estranged from emotionally) and I smiled at her and invited her into the house. She roamed around looking for "her stuff".  I was puttering and then she said to me, "I hope you 2 can get along now."

***

when you get a visit, a dream or sense of presence, and it stay with you forever,  it is different than a memory of the person. It is in another dimension. I wonder when the brain parts built for living in a complex unnatural world start shutting down we are left with this part of consciousness  which is - in the right environment - incredibly wonderful.

Definition of consciousness

 

1athe quality or state of being aware especially of something within oneself
bthe state or fact of being conscious of an external object, state, or fact
cAWARENESSespecially concern for some social or political causeThe organization aims to raise the political consciousness of teenagers.
2the state of being characterized by sensation, emotion, volition, and thought :MIND
3the totality of conscious states of an individual
4the normal state of conscious liferegained consciousness
5the upper level of mental life of which the person is aware as contrasted with unconscious processes

Examples of consciousness in a Sentence

 The medication caused her to enter an altered state of consciousness. The events have become part of the national consciousness.
See More
 

See More

First Known Use of consciousness

1605, in the meaning defined at sense 1a

History and Etymology for consciousness

see CONSCIOUS entry 1

 

Learn More about consciousness

 

Statistics for consciousness

Last Updated

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Look-up Popularity

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Time Traveler for consciousness

The first known use of consciousnesswas in 1605

See more words from the same year

 
 

More Definitions for consciousness

 

consciousness

 noun

English Language Learners Definition of consciousness

 

the condition of being conscious the normal state of being awake and able to understand what is happening around you
a person's mind and thoughts
knowledge that is shared by a group of people
 

consciousness

 noun
con·​scious·​ness | \ ˈkän-shəs-nəs  \

Kids Definition of consciousness

 

1the condition of being mentally awake and activeFollowing surgery, she slowly regained consciousness.
2the part of the mind involving thought and awarenessThe memory is preserved in my consciousness.
3knowledge of something specifiedNews reports raised consciousness of the problem.
 

consciousness

 noun
con·​scious·​ness | \ ˈkän-chə-snəs  \

Medical Definition of consciousness

 

1the totality in psychology of sensations, perceptions, ideas, attitudes, and feelings of which an individual or a group is aware at any given time or within a given time spanaltered states of consciousness, such as sleep, dreaming and hypnosis— Bob Gaines
2waking life (as that to which one returns after sleep, trance, or fever) in which one's normal mental powers are presentthe ether wore off and the patient regained consciousness
3the upper part of mental life of which the person is aware as contrasted with unconscious processes
in case anyone else is interested I will post some more about WHAT is it we might be experiencing when we can not convey it in traditional sense of words and body language.

It soothes me to explore stuff and learn, and I thought learning was wiped out, but some days/hours if I stay in bed I feel pretty normal. Today was inspired by a friend's email.

alz+
Posted: Tuesday, September 3, 2019 2:09 PM
Joined: 9/12/2013
Posts: 3550


Ha ha! I had No Idea I had copied the entire web page! above ^ post

got stopped in thought in trying to spell some words and then lost my direction, the point.

I leave it uncorrected as a sign of my learning to accept the condition and learning to be friendly towards my brain. If I think of my brain as my friend who is disabled  it soothes the day. The part of me that listens to my thoughts and observes, that consciousness which may remain long after death.

what are the options?

love and courage



zauberflote
Posted: Friday, September 13, 2019 12:17 PM
Joined: 10/24/2018
Posts: 573


alz+, I wish I could meet you! These posts of yours are fascinating, wonderful, and stupendously insightful. I will probably have dementia one day, and to think of my brain as my friend with a disability is something I'm going to start working on right now. 
My father died at 71 of cancer, a very short time after diagnosis. He had spent his final few days setting Mom's small finances up for her, and was very successful in his arrangements.  I spent the night (and a couple more weeks) with her the day he died. The next morning, we both reported having dreamed good dreams of him. We also commented that he felt like he was still there, watching over her. He did "stick around" for a couple of days, until he was assured that we kids would indeed take good care of Mom. Now I meet Dad Every Time I see my brother-- he looks nothing like him facially, but every movement, gesture, expression, laugh, way with words, is pure Dad. 

 

Twenty years later, when my mother in law passed, we'd had the "luxury" of a large family and a long physical decline, and of course 20 more years of life experience, so we were better prepared to reassure her that we would all take care of one another, and that we loved her. When she died, she was gone immediately. Except of course she now comes back in flashes of heart-stopping emotion. These have happened to me with photographs, when my mom says something EXACTLY as "Granny" did, when *I* say something exactly as Granny did... and her presence is everywhere on the waterfront property she passed to her children. One feels one is trespassing if one allows someone to sleep in the rooms that were hers after they were her own mother's. 
I will look at Mom differently now when she's gazing at nothing. Perhaps she is seeing angels, as one hospice nurse I've read suggests. 

abc123
Posted: Saturday, September 14, 2019 12:36 AM
Joined: 6/12/2016
Posts: 729


Dear Alz+, I totally believe communication is possible without words. I know it is.

Midwife For Souls

SPIRITUAL CARE FIR THE DYING

A pastoral guide for hospice care workers and all who live with the terminally ill.

By Kathy Kalina.         This is a wonderful book. It was a huge blessing to me.


Michael Ellenbogen
Posted: Saturday, September 14, 2019 6:08 AM
Joined: 11/30/2011
Posts: 2731


Very true abc123 as I wrote about that many years ago.