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windows of awareness
alz+
Posted: Thursday, February 11, 2016 7:46 AM
Joined: 9/12/2013
Posts: 3608


The term WINDOWS OF AWARENESS 

this is what only needs to happen once to realize dementia does not eat away our consciousness, that we remain aware through the whole process.

https://www.youtube.com/watch?v=zzHV79I1hGg

The woman discussing the man who has not spoken in a long time but who comes back to have a happy conversation with her is in link above.

Note what she says, "They often come back and talk to us, are their old selves, usually at the end of their life..."

This is know to caregivers who work with lots of patients in healthy settings. It was true for me and my Dad.

Black Swan theory - if you believe all swans are pink and then see a black swan, you can not keep believing all swans are pink. You know differently.

Last time for me to say this:

we do not become globs of nothing, nor do we lose our humanity. we are aware of you through the end. not recalling a name does not equal we do not know you.

For those of us with the illness the facts should cancel out most of your darkest fears. Your consciousness is changing and you can learn to work with it if you stop being afraid of it.

For those who take care of us it should change how you treat our symptoms, which are behavioral due to vision changes, processing and reporting back changes.

question authority. doctors will not give advice on "behavioral problems" as they have no clue but lots of pills to shut us down. most of the illness is spent trying to make us behave like those who do not have dementia.

proper environment makes the consciousness change a gift, one foot in the next world. A fear and loathing environment creates static in us which looks like "behavioral problems from dementia".

Dementia is not hell, this one video is your black swan. Stop chasing false information based on false assumptions. If you are anxious - as changes in how one lives in the world creates - you deserve everything possible to help that.

Your doctor is likely prohibited from giving you the help you need in terms of drugs that would HELP instead of suppress. People are making a fortune out of the HORROR of DEMENTIA belief system.

Once you witness the resurrection of normal  conversation (this is the KEY to false beliefs, the inability to cough up words fast enough for others to listen) you cannot believe the brain being all fat and gray is the place of human consciousness.

Once you witness this you can not rationally hold onto the "dementia robbed me of my loved one" game theory. You looked but did not see, you heard words but did not listen. 

Dying takes work, we are tired. I am tired.

Next time someone gets tossed off board for speaking in dementia language instead of given some slack it might as well be me.

so this was my main point to get across and to those with eyes to see and ears to hear...


BillBRNC
Posted: Thursday, February 11, 2016 9:30 AM
Joined: 12/2/2015
Posts: 1018


alz+ wrote:

Next time someone gets tossed off board for speaking in dementia language instead of given some slack it might as well be me.

so this was my main point to get across and to those with eyes to see and ears to hear...

++++++++++++++++

I sure as heck hope that is not why Sun got booted. I can't help but feel that a whole lot of otherwise reasonable people would prefer Alz people who have advanced a little too far should be kept out of sight so to not bother the normal folk. Someone talked about losing control, I think we all know about that. I almost slugged my wife in a hotel lobby over Christmas because I just plain lost it, and I'd rather be dead than do something like that. I got so tossed around in the head last summer when my son and his family were here that I took two handguns that I had not touched or even seen in 30 years out of a lockbox and gave them to the police. Why? Because I was afraid of losing control and having them in reach. I dreamed all night about it. Hey, I guess someone would want to report me for that, because hey Bill must be dangerous. No, I just have Alz and lose control sometimes when things get crazy. Driving? Hey, take the keys from Bill because he might do something stupid. Heck, I live in a town with two stoplights, no 4 lane roads, and top speed anywhere inside the city of not more than 20 mph. When I pose a greater risk than so-called normal people, then I'll gladly give up my keys, but I truly fear my doctors are going to report me as a danger simply because I have Alz. I have told my wife to take my keys whenever she thinks it would be too risky for our grandkids to ride in the car with me driving. Now that's not a bad standard to have. Hey, but what do I know, I'm just another one of those people with Alz. Yes, I'm pissed off today, because I can't fly with my wife to see my twin granddaughters get baptized. I've still got enough sense to know not to put myself in bad situations, no matter how much I would like to do something. I can tell this ins't going to be a good hour for me right now, so I think I'll just go take a shower, where I'll probably wash my face 5 times because I forgot I had already washed it before. Yeah, and people without Alz say they know what it is like to have Alz. Want to bet.



alz+
Posted: Thursday, February 11, 2016 10:10 AM
Joined: 9/12/2013
Posts: 3608


Bill - you are missing the baptism of grand daughters? 

Your reaction to my post was so beautiful and so important. You felt my distress, and also concerned for another member having a hard time and being rejected.

 I also just now reread my post and see how the ENERGY of it was exasperated and wounded and angry. Not so good for sharing insight, contaminated by my anger.

We are vulnerable to others energies. This vulnerability causes us to be overloaded.

The equation might be Activity + Emotion = too much input = blow up.

 I feel the pain of what you wrote, I see the suffering. And you took care of yourself and got in the shower (or didn't )... your wife went and will bring back pictures. it will pass, and the emotions change if allowed, and you learn you handled it.

You also knew to get rid of guns (don't have to be loaded to get one of us shot for holding one). You are doing a great job. and to post here WHERE IT FELT SAFE TO EXPRESS IT ALL probably helped you calm yourself.

The anxiety during our transition is HUGE and you already deal with it very skillfully.

Forgive yourself as soon as possible when ever this happens. Move on. 

**********

I apologize for posting with an attitude today and for adding to anyone else's distress. Knowing my ability to write is short, to see well enough, I feel more INTENSE.

None of us do this perfectly, CGvrs or PWD, but we keep steering in the direction of peace, forgiveness, understanding, love, and finding joy.

********

Bill, Iris, L lee, all of you who post here. I love how you think and what you report back from your world. 

Bill, if you are home alone for awhile try an experiment to see if you can find something you really enjoy in those hours. One time I sorted a dresser drawer for 2 hours, it was the most relaxed I'd ever been in my life, examining each piece of paper and hair clips and stuff. Just in the moment, no worry, no one interrupting.

If you go out and meet a dog - BONUS! There is reason lost ALZ people are often found hugging trees.

You made me think. I will keep trying to share what I find useful until the way I do it gets me chucked. Maybe that will be the right time to stop anyway.

Blessings on you and your beloved grandchildren and wife.

write a song about this?


Amor Fati
Posted: Thursday, February 11, 2016 10:32 AM
Joined: 1/9/2016
Posts: 87


Dear Alz+ and Bill,

Thank you both for opening our eyes and ears.


Hudder
Posted: Thursday, February 11, 2016 1:16 PM
Joined: 11/4/2015
Posts: 60


Thank you Alz+ and Bill, for  'keeping it real'  as you open our eyes to see and our ears to hear!
sandyjm
Posted: Thursday, February 11, 2016 2:58 PM
Joined: 4/25/2015
Posts: 406


I'll share in the Thank Yous to Alz+ and Bill for sharing...thought I feel a little like I'm eavesdropping....forgive me if I am.

Thanks,
Sandy 


llee08032
Posted: Friday, February 12, 2016 6:44 AM
Joined: 5/20/2014
Posts: 4408


I also just now reread my post and see how the ENERGY of it was exasperated and wounded and angry. Not so good for sharing insight, contaminated by my anger.

We are vulnerable to others energies. This vulnerability causes us to be overloaded.

The equation might be Activity + Emotion = too much input = blow up.

Once you witness this you can not rationally hold onto the "dementia robbed me of my loved one" game theory. You looked but did not see, you heard words but did not listen. 


I see, I hear and I understand. I tire of explaining my position all the time. It is work and it can be exasperating trying to get the words wrapped around the meaning and feeling of what I want to express. Worrying if your going to put someone on the offense because your experience is different. I'm tired and exasperated with you.



Thank you for sharing this video alz+! I was touched by the emotion of the companion aid and how caring she was and how she was there and in the zone with him. Thank God there are people in the field like her! People like her "get it." : ) 


llee08032
Posted: Friday, February 12, 2016 6:46 AM
Joined: 5/20/2014
Posts: 4408


Where's the rest of my post?
llee08032
Posted: Friday, February 12, 2016 7:01 AM
Joined: 5/20/2014
Posts: 4408


alz+ is right Bill. You really do need to give yourself some credit for the great way in which you are dealing with all you described. You're already understanding what your limits are and setting boundaries around what you can and cannot tolerate. All that you write helps someone else learn how to cope. 

I don't have guns but some do and how you handled giving the guns to the police is expert advice. 

Twins? How precious! That's got to be hard Bill! I hope you get to see a video of the baptism and that they bring the baby's to see you very soon. 


Iris L.
Posted: Friday, February 12, 2016 6:26 PM
Joined: 12/15/2011
Posts: 18513


Bill, do you Skype?  You could still see your twin granddaughters get baptized.  I'm sorry you could not make the trip.


Ilee and Alz+, have you seen this video of the 94 year old man with dementia who was revived by music?  He still had a lot of life in him--it just needed a way to come OUT!


http://newoldage.blogs.nytimes.com/2012/05/17/revived-by-music/

 

Iris L.
Mimi S.
Posted: Saturday, February 13, 2016 10:15 AM
Joined: 11/29/2011
Posts: 7027


Yes!!

Music and art

Especially activities that a person contributes to 

 


llee08032
Posted: Monday, February 15, 2016 9:07 AM
Joined: 5/20/2014
Posts: 4408


Iris,

I saw the video. Remarkable how music gets processed in our brains! I should get an IPOD and start working on my eclectic playlist! Let's see, some Motown, classical, rock, opera and folk...

Thanks, Iris


alz+
Posted: Thursday, February 18, 2016 6:53 AM
Joined: 9/12/2013
Posts: 3608


L lee - if you enjoy making music lists then that would be fun. I want some one who knows how to do it todo it for me. have been singing to myself more.

Ilove tosing and have odd voice so by myself lets me really enjoy it.

been singing old school songs, from 60's when at swimming pool. and on walks with dog.

***********

To my friends, my vision is changing and my typing is worse, can not spend the time editing reediting like i used to make posts make sense.

maybe temp, maybe not, also hearing hissing and bells as my hearing loos becomes more profound.

if i am gone missing it is only for this.

you know the autopsy brain study thing done on Nuns - where it found many had shrunken brains and NO SIGNS OF DEMENTIA and some had dementia and brains not shrunk?

also people who speak clearly at end of life? no science explains this, but we all must understand not being able to read or hear or speak fast enough, or translate our thoughts does notmean we are living dead. noone really knows what dementia is or where it comes from.

these boards are a way for us to figure it out.please some figure it out. 

posting is too hard for me now. house may get kitchen finsihed today soi better get dressed before carpenters show up.

wish me luck. ilove you all so much! consciousness does not reside in brain alone,we have souls, god bless our souls